Updates on Ron

It's happened

2012-01-15T10:32:00.000-08:00

The phone call that I had anticipated with both hope and dread came on Tuesday- a bed was available for Ron at Cerwydden care centre. So Thursday saw Cammy, Keighley, Glyn and myself taking Ron to his new home. It was truly the most horrific hour that we've been through - Ron knew with absolute certainty what was happening.... I knew he knew he was being taken from home and moved there and would not be living back at home again- and he absolutely didn't want to go, not even get out of Glyn's car. He was deeply distressed and angry and very sad and uncooperative - my heart broke for him. It was awful. The staff are very kind, in particularly the lady in charge was so gentle and caring with him. Cammy, Keighley and I stayed nearly an hour initially ( I had prepared Ron's room the day before) but then had the excuse that I was taking Cammy for a haircut, so we had to go. Glyn kindly stayed on and got Ron a little calmer, and he had some tea, fortified with an Ativan, which went a long way to settling him. I returned a bit later and sat companionably with him while he ate his supper and I stayed into the evening with him. I was really worried that, given his behaviour, the staff would not cope and he'd end up being committed to Psychiatric care in the hospital and would lose his bed at Cerwydden, which had been my top choice of place for him. He managed ok, and the following day was full of visits from myself, Cammy, and Ron's mum and sister-fortuitously they were in town for Keighley's shower. I didn't want Ron to be taken out and about till he was more settled, for fear that we wouldn't be able to get him back through the doors again.

Yesterday, after he'd spent two nights there, the weather was absolutely glorious and I felt he should get out into the fresh air and have a walk. There is a lovely section of the Trans Canada Trail which is easily accessed on foot from Cerwydden, so that's where I took him. It's a disused railbed, which is graveled and level, and wide enough to walk side by side, so it's just perfect to take Ron out there, as it's quiet, and there's no traffic and it's not muddy, and goes through lovely forest next to a river. He was in a good space and I didn't have trouble getting him to go back indoors. Clearly Ron will need a lot of re-assurance that he's not abandoned, so I am going to be a very strong presence there for him. Others who have been significant in his life will carry on being involved too. It is challenging as he needs to get out and exercise, being physically so fit and energetic, compared to all the other residents, most of whom are in their 90's. I can already see that he will keep the staff on their toes, compared to the other residents who seem content parked off in their wheelchairs for hours on end.

I am still reeling and numbed with it all. It's been a pretty hectic time since Thursday, with my mother-in-law and sister-in-law arriving Friday, then hosting the baby shower here on Saturday. I have to confess that it was an absolute joy on Thursday to have a bath at 7 pm - (bubbles and wine!) usually I'd have had to wait till not only Ron was put to bed, but staying in his bed for the night before I could have a late bath - hurried because all I wanted to do was sleep. Over the coming months, I will busy myself with clearing out the house systematically. I have no intention of making any decisions about the house or moving - I certainly would not want to loose both my husband and my home in quick succession.

I couldn't seem to attach a working link to the website for Cerwydden, but just Google Cerwydden Care Centre Duncan if you're interested in learning a little more.

New Year

2012-01-10T09:30:00.000-08:00

It has been such a delight to enjoy a new life in the family. Little Keighley is thriving and Cammy and James settling in to the full time role of parenting. I tried to keep her overnight with me but that is a delight that I will enjoy sometime in the future, after weaning. Meantime I astound myself with knitting, right now a beautiful little pink jersey with an intricate knitted pattern on the edge is the project I am working on. My mum would be very proud. Even I am proud. But as you know, I intend to be the non-trad granny, evidenced by my title Glam Gran! (GG)

I somehow never grasp that things will continue to become more challenging with Ron, yet they do! Still I wait for a phone call that there's a bed for him. In the meantime, between myself, my wonderful caregivers and the times at respite, we muddle on. This week I hired a very caring and capable lady who will come two or three nights a week and stay up in order to change Ron, redirect him to bed during his nocturnal wonderings. Not unexpectedly, of course, on her first night here, he didn't get up at all. But I can abscond down to Davey's room and rest secure in the knowledge that I am off the hook for the duration. It is a joy even to take a bath in the evening and not be listening with half an ear to hear if he's got out of his bed. Often he's like a toddler with that... needs putting back to bed three or four times before he settles.

As this is the last block of time with Ron at home, I have been very intentional to keep it positive- I am very affectionate, patient and give him a huge amount of attention. I'm not sure where the reserves come from, but I have never snapped or allowed irritation to move from my heart to my mouth. However there are always events and circumstances which make this difficult. I really don't want this time to be tainted by any feelings of resentment, or worse, repellance - ( dealing with dirty nappies, pulled off, smeared on the leg, walked on, on basin and toilet, all at 3 am... I was surprised not to be revulsed, but simply took charge and ran a bath and washed floors etc and got him warm, dry and settled) I could see how if this were to go on for months it would be hard to stay unfluttered for the duration. Then there are heartbreaking moments when I know with clear certainty that it's past time for Ron to be placed... one such moment was when I found him curled in fetal position on Barkley's dog cushion outside my door. My heart broke for him. How very cruel this disease is. It took me a long time to decide on including this incident in the blog, so vulnerable and desperately sad - yet this is the reality of Alzheimer's.

Ron will go again to Respite in Chemainus for a few weeks on Jan 19. I do hope that he remembers it and feels at ease there. They are so good with him. There is of course, the chance that his permanent bed will come available when he's there, in which case there will be a transfer. I just have to trust that whenever it happens, wherever he goes, it's all right. It's out of my hands. I try and remind myself that through all this I do deserve a bit of a life for myself too.

Glad tidings of Great Joy !!

2011-12-28T17:54:00.000-08:00

What a gift we received on Christmas day! In the early hours of the morning our little granddaughter was born - Keighley ( pronounced Kee-Leigh) 6 pounds 15 oz. She came very quickly and was born at home. She and Cammy are doing very well, busy settling into the how to's of breastfeeding, and James has ably taken over with all the nappy changing. It is such a delight to have a newborn in the family, and the most amazing experience to be grandparents.

On Christmas morning, we were able to visit when she was only a few hours old. It was a very emotional time for all of us, the profound joy was tempered with a deep sadness, as that day, Ron had no clue at all of the significance of the event, and indeed barely noticed her, concentrating only on me when we placed her in his arms. Today he saw her for a second time and was more animated and did smile at her, which was a very special moment for Cammy.

The joys of being Irish

2011-12-06T09:26:00.000-08:00

In high spirits with Glyn

Ron- 57th Birthday

Spontaneous dance with me!

Entertaining the patrons at Saison with his Irish talk and jig

No less than three sets of headphones! Happy as a clam!

For those of you who don't know us, Ron, remarkably, qualified to become Irish through my mum. This has always been a source of much amusement to him. Lately he's taken to gabbering away in "Irish" and, much to everyone's delight, sometimes breaks into a spontaneous jig. With it being his birthday yesterday ( though of course he has no understanding of the concept) he was aware it was a celebratory time- so entertained us in this way. It was particularly hilarious when Matty phoned to wish his dad well, and Ron kept alternating between talking Irish (which is totally non-sensical) and then hearing Josh Groban singing, so breaking into song while on the phone. I was not the only one crying with laughter! Poor Matt on the other end of the line was totally confounded!

It is such a joy to have these happy moments- the dark shadow of depression is still very evident, hopefully the new meds will kick in sometime soon. I still wait for the phone call regarding placement - so torn about that and try to put it from my mind. So many times during this journey I have wanted to push a pause button and keep things as they are.

Happy at home

2011-12-01T16:06:00.001-08:00

I am so happy to have Ron back home... even with the three shirts on, two headphones and my dresses and socks all lifted out and spread on my bed! Life is back to normal-it was too quiet and easy round here for the last few days anyway.

Update from NYC

2011-11-25T05:44:00.000-08:00

Central park walk

Macy's Thanksgiving parade!

Manhattan skyline near Ground Zero

I thought I'd quickly update the blog as I've got a few minutes quiet here in my hotel room downtown Manhattan. As I look out the window, I can see the Empire State building against a clear blue sky. Black Friday here in USA, so I will sensibly steer clear of any shops and plan to go to Bryant Park and the Met with my aunt, Ruthie.

Ron had a few days in Respite before I left, and I was able to see him and take him on some outings. It was distressing to be entrusting him into the hands of people I don't know, capable as they are - it's not the same as home. On that first night there, he'd done the usual of being up and dressing and undressing, and I gather that in the morning all his clothes were strewn over the room, some wet, but I am sure not all - anyway, they put the lot into the laundry, and it being a Friday, there they were stuck all weekend. Ron was reduced to one pair of sweatpants which upset him - I was a bit cross that they couldn't go through the clothes and refold and put things back in the closet.

On Monday, right before I left for the ferry to the mainland, I had a conference-type meeting with the whole medical team. They had determined that the best course would be to hospitalize Ron directly following the respite, and then transfer him to the next available bed in a care home. For many reasons I didn't want to go that route, - the primary one being that the hospital in Duncan was Ron's environment for so many years, all his colleagues still working and functioning there, it was deeply distressing for him to be a patient after surgery and being in the psychiatric ward, possibly the padded cell, would be like kicking a person when they're down. So I advocated strongly against this course. It would be better if he could stay home till there is a bed at a local facility available. Of primary concern to me is that the placement be as gentle on Ron as is possible. I also pushed to have his medications revisited to get him feeling more settled, happier. That they've done, and I hear from Cammy that it's making a difference, he was strumming his guitar when she arrived on Weds to pick him up.

I was surprised to learn that a number of staff members had noticed a deterioration in Ron even in the two weeks that had passed since his last stay there.

Anyway, better get on with my day, Ruthie is here to take me out!

Persevering

2011-11-14T16:48:00.000-08:00

A quick update - things have become unsustainable here at home- poor Ron is totally lost, needing help with even the most simple tasks, and has taken to following me around the house, being unsettled at night and unable to occupy himself at all during the day. I feel very tired and overwhelmed, and have written increasingly strongly worded emails to the Medical team to try and get Ron placed in Residential care sooner. This Thursday he will be admitted to Chemainus for his second block of respite care, two weeks this time, and it is my hope that he will be transferred from there into a permanent place - either during the two weeks, or afterwards. I understand that it's a matter of waiting for beds to come free and prioritizing the waiting list- I have no idea of Ron's standing on the list. I do know that I can't manage much longer- the stress and exhaustion are taking their toll, I nearly had a major car accident recently ( sailing into an intersection on the highway, not even seeing the red light!) The exhaustion is more emotional than physical, so even if there was some help here some nights, I don't think it would make much difference. The five years have been a long journey.

Yesterday saw a very sad milestone- Ron did not know my name.... that hit me very hard, and though I know it's not really important that he know my name, it was a desolate moment for me, the realization that it's come to this. It was wonderful that Dave was here, we consoled each other, as he knows what it's like, Ron has forgotten his name too. The loss and grief of Dementia is relentless.

The happy news is that during this block of time, I will be jetting to NYC to spend American Thanksgiving with my uncle, aunt and cousins ( my dad's sister's family) who have incredibly generously covered my expenses to join them. I hope to closet away at the Met for many hours and also get to that Egon Schiele collection at the Neue Gallery. What a treat! We are also attending the Big Parade and a couple of shows. Perhaps I will even indulge in some shopping! Debating in my head whether it's more important to look good or be comfortable esp regarding what shoes to bring. I think comfort....

Respite week

2011-11-05T08:51:00.001-07:00

At the Salmon Run, Goldstream Park

Granville Island, Vancouver

View from Sharron's deck, Whiskey Point, B.C.

Whistler, B.C.

Well, as evidenced by the pictures, I had the most glorious week enjoying the spectacular fall in B.C. It was great to stay close to home - and such a delight to house sit for Sharron, she has a lovely place right on the ocean just north of Mill Bay. It has not been since my days in Lillooet that I managed to keep a woodstove lit and going! A highlight was Halloween night in Whistler - the drive up was amazing as it was clear and the scenery at this time of the year is so beautiful. Prices are very good too, as it's shoulder season there. Next time it will be for two nights, not one. It was an absolute treat not to be disturbed with wet nappies through the night and not to be responsible for anyone.

Ron settled in pretty well at the Chemainus centre. The staff are very attentive and kind there, and were particularly accommodating letting him hang out in the nurses station, and at my suggestion, putting a Dr Ron label up on his door. It is very affirming for him to be called Doctor. There were times of sadness for him- but that happens a lot at home too, and a couple of incidents of him escaping out the door- merely walking out with other visitors, - easy to do as he doesn't look like the typical resident. They switched to keeping him in the gently named "Garden View Area" ( lockup!) in the afternoons, to keep him safe. It was good that I'd made arrangements for him to have long outings every day. I was surprised to hear from the nurse leader yesterday at my de-brief, that he is really high needs, and that, should Ron be placed there permanently, she would definitely be applying for extra funding for one-on-one help for him. She said to me she had no idea how I managed him at home. Funnily, this was re-assuring to me that I have made the right move placing him on the list for residential care. But still totally not ready to have that happen!

The way the respite timing works, he's back there in a couple of weeks, this time for two weeks. My generous auntie and uncle from California are paying for me to join their family in NYC for the American Thanksgiving celebrations. I am so looking forward to seeing them, and having a few full days at the Met- evidently there is an amazing new wing for the Islamic collection. I will fit in some docent tours, which I always enjoy. They have also booked some shows which will be a treat.

There is so much in my life to be joyful about and thankful for. Thanks especially to all of you who love me and support me in so many different ways on this journey. I could never manage without you.

Such mixed feelings

2011-10-20T17:47:00.000-07:00

Looking so handsome, so amazing, so normal! A happy shot, hiking with Bridget, who he adores.

Ron with his mum and sister, Marnie, at the farmer's market in Duncan.

Sometimes I feel so overwhelmed and in such turmoil. This afternoon I simply didn't know how to manage Ron's crying, saying he is nothing. ( he's now on an increased dose of Celexa) It is incredibly wrenching when his only decipherable words are such sad ones. I held onto him and told him how I love him, how well he's doing, how unfair it all is... Then suggested we go for a walk in the forest, which he always enjoys. He tends to wonder through the house now, as if looking for something which he was busy doing as I came back after putting on my coat. He had his back to me and I just said " Ron " quietly, and he absolutely leapt with alarm. His eyes were brimming with tears, and I was thinking "What the heck do I do?" he was in such a bad way - so hugged him more, said, come we're going to go for a walk, put the ipod headset on his ears, turned it on, and promptly went and took an Ativan for myself. Haven't had one since we were in Venice, 2007, so thought I'd held out long enough. Some days the stresses of all kinds of things just build up, compounded by the exhaustion, and this was one of them. I think I was verging on a panic attack? - the heart was racing... Not sure if I'm now more mellow - but it did on harm, one microscopic pill!

I spent some time yesterday connecting with the nurse leader at the Chemainus Health Care centre where Ron will be in respite for a week, starting Thursday 27 October. I got the sense from our conversation that Ron is significantly more compromised than many residents when they come in to care on a permanent basis. I asked her for to be absolutely honest about how he's coping with the changed environment and how he is functionally compared to others in care. He is being told that he's going for observation and assessment to help with his bladder and the getting up at night - respite is not to be mentioned. I plan to retreat and isolate for the week, have a chance to house sit for a friend who lives on the ocean, may go to the mainland, perhaps Bellingham or Seattle... or stay at home and snooze and read and not change one nappy, not have to get up at night or shower and shave a man and cut food etc. I am hoping this will be positive for me - I will choose restorative and refreshing activites. Sometimes I worry that since my role over the last five years has evolved into being full time caregiver, that I may feel purposeless when alone. I know I need to build bridges to my future. More on that in a later posting.

Ron is still incontinent, no improvement in that department, and is as confused as ever. Last night I put his tray on his lap, with his supper on it, and said, " Here, Ron, here's your supper" and he didn't know to eat it. To end on a more chipper note- Cammy had him shopping the other day, and she went to line up at the tills and he was right behind her. She looked back, and there he was, in another line up, in the process of putting his entire basket of groceries into the trolley of an alarmed stranger!

Saad has worked out fantastically, and comes often in the morning to help with the ablutions and walk with Mr B. Lovely for me to not have to deal with this on a daily basis.

I will post a couple of recent images from when Ron's mum and sister came to visit. His mum looks absolutely amazing, considering she's turning 90 in February.

Happy starts to the day

2011-10-02T08:54:00.000-07:00

A typical view of what the house looks like when I get up in the morning... none of this was here when we went to bed. What I haven't photographed is Ron in his nappy and winter coat and one woolly sock! It's good to start the day with a smile. The stout wedge at the far end is Mr B, oblivious.

Rough week

2011-09-30T17:32:00.000-07:00

Well, it's good to be at the end of a pretty trying week. Ron had prostate surgery on Tuesday, and though the surgery itself passed uneventfully, the recovery has been very trying. In short, he was in significant pain, agitated, unable to void and needed re-catheterizing as there was a blood clot, and now he is totally incontinent. I am hopeful that this is just a temporary outcome following the surgery and that he'll settle and regain some degree of control. Added to all this, he has been much more confused around even the most basic of tasks. Cammy was an absolute godsend and arrived at the hospital with a Starbucks coffee for me, hot choc for Ron, just when I was nearing the end of my tether. This was Wednesday morning, and Ron had been discharged conditional on him peeing... from 7 am till 2 pm he visited the loo every 10 min or more, and nothing, nothing... and he kept saying he'd gone, or that it was coming... in the end they re-cathetered and kept him in another night. Anyway, Cam took over like an angel and I escaped home in tears and collapsed into bed. I find it incredibly difficult emotionally to see Ron in an institutional setting, it bought on all kinds of feelings and fears about the future for us. Added to this, it's always wrenching for me to be in a medical facility as it hits me hard that this is what Ron's life should be, actively practicing medicine. It also does not inspire confidence in one's looks when two nurses looked up at me and said with spontaneous honesty, " You look exhausted"! ( I read: a train wreck)

Yesterday was Glyn's day with him and finally after success, Ron was released into his care, and got in the car and promptly wet everywhere.... this happened again 4 times in the day and then a complete drenching at night.( even with nappies on) So I invested in a $134 cover for the mattress and some heavy duty Depends, so we're hopefully all set.

I had a special supper at Mel's place with some girlfriends last night, and Cam kindly came here to be with her dad. I got Ron in his jammies and gown all ready before she came, and nipped to the bathroom to salvage the appearance as best I could. Anyway, came out and there was Ron in the corridor, he'd changed. It was very endearing. He had on a button up shirt, all incorrectly buttoned so that one front panel hung low down, the other much higher and the collar all wonky, below that he had on his diaper, and then one woolly sock. He was all ready for Cam to come. It reminded me of when Matty at 2 insisted on dressing himself with similar results. Then he added an inside-out sweater, jeans and one shoe. So there he was, one shoe on, one bare foot, thinking he was going out with me. I told him no men allowed, even Clive Owen wouldn't be welcome at Mel's!

There is an enchanting innocence about someone with dementia, there is a purity that is so childlike. It diminishes the horror and desolation of the illness, and enables my patience to be stretched further. But the patience... I am not sure of the sustainability of it with weeks of severe incontinence ahead... one day at a time.

A big step

2011-09-21T20:54:00.000-07:00

Well, it's done - yesterday, upon the urging of Ron's case manager, and the nurse in charge of residential placement, I put Ron's name on the Emergency placement list. After learning that Ron is medically indicated for a private room, and that the expected wait for private is around 4 months, I made the decision to put his name on the list - given the deterioration that has happened for him in the last 2 months, I felt it wise to get into that particular queue rather than wait till we are in crisis. Dave looked after his dad for a week last week, and told me " Dad is way more than a full time job for one person" and also that he could maybe have stretched to caring for him for two weeks, but no more than that.... and Dave came in fresh, ( not to mention young and energetic) and I've been caring for near on 5 years. I feel physically ill at the thought of Ron going in to care, particularly as he's pretty aware of his surroundings - well, aware enough to know that he's at home right now. The emotions experienced I know are common to other carers who have made the decision, the guilt, the inadequacy, the exhaustion, the feelings of failure.... and yet logically I know the time has come. Ron now needs leading by the hand around the house, he is having trouble eating food off his plate, needs help with dressing, showering, even help getting into bed - last night despite my having folded down the duvet for him, he went to the bottom of the bed and was peering under it, not knowing how to get in. He is also up every night drifting half-dressed around the house. Another change is often he mumbles incomprehensibly to himself.

For me, the trying part is not so much the personal care, but all those hours in between, as Ron now will not stay in one spot more than 5 minutes and keeps getting up drifting round, lost, as if looking for something, or standing next to me staring at space. It can drive one to distraction, though thankfully my fuse seems to be long and I have remained calm. The sullen and stubborn moods are also trying - though I quite like a bit of stubbornness, it shows spark! Sometimes it makes me even smile, the other day when walking on Chippewa with Saad, Ron insisted on tucking someone else's Times Colonist under his arm and walking off with it... refused to listen to Saad telling him to put it back. Anyway, when he got home I told him he had to, that he could not be a thief like Barkley, and that he must listen to Saad, that he is the boss, just like me! That did the trick! Saad, by the way, is my friend Thanya's brother, who came with his family as a refugee from Iraq, just over a year ago, and is helping a few mornings a week with the shower, shave, dressing and Mr B's morning constitutional. He is a total joy and Ron really likes him.

I will end on a humorous note - clearly Ron was feeling chatty a few days back and for some reason was saying the days of the week.... he began with Tuesday, and went on saying " Threesday, Foursday...." Totally delightful!

A good laugh!!

2011-09-02T17:50:00.001-07:00

As I wanted to veg out and do my cryptic on the couch, I told Ron to "read" the paper - directing him to it by tapping it on the coffee table in front of him. He picked up a single sock that he'd put on the arm of his chair and said, " But I've only got half of it!" It made me laugh till I cried... and he too was laughing, it was one of those times when even minutes afterwards the giggles about it start back up again.... a lovely moment!

I have hit on a (I hope)brilliant idea, as he can't read- I am putting a couple of family photo albums next to his chair for him to look at instead.

Pause Button

2011-08-29T17:18:00.000-07:00

I would so love to press the pause button to keep Ron as he is right now. These are very special days - he is so very dependent, so vulnerable and child-like, and I feel so tender and protective towards him. Each evening I've been taking him up hiking in the forest, and he's totally happy, singing along with his ipod, in his own world. I now guide him room to room and oversee every "activity" including telling him to sit down and showing him where. It's funny, I had thought that at this stage I would be totally wanting to throw in the towel - quite the opposite, I just want to hold on forever.... My dear friend, Linda, who's husband is in care, clarified with me that Ron is now like a disabled child to me, of course I don't want him to go.

Last week Cammy tearfully told me that she felt it was time her dad was placed in care. She'd had him for 5 hours and wondered how I could manage all day, every day. I recognize that I may be like that frog in the slowly boiling water, but I do feel calm and very peaceful, able to carry on for now. But in my heart I know it's not sustainable- when Ron is continually getting up and standing next to me, or standing lost in the passage, that is hard. I also have been averaging 4 1/2 hours of sleep for weeks... so that does tell me things are not what they should be. Dave wants to have the opportunity to care for his dad, and he'll do the week of Sept 9. It will be a very special time for him to have with Ron. Matt has said on a number of occasions how precious that was, to share that week in May with his dad.

I now have help in the home - Saad - my refugee friend from Iraq - comes two mornings a week to help with the shower, shave, dressing and walk. It's a great help and I will work to increasing his hours as the funding has been upped, now that Ron's care needs are verging on 24 hour care.

So for now, I hope to keep on at home, like this, through the fall... It's a really difficult decision, and I really want to be able to look back at this period and know that it was all good, how it played out, and that I made the right decision at the right time. One day at a time, and enjoying every golden moment. Special times. Very special. There is much, much joy in my life.

I know I shouldn't chuckle...

2011-08-22T08:44:00.001-07:00

.. but sometimes the things that Ron does are so funny, so endearing that the humour overrides the sadness.

All of us

Sublime Callebaut Chocolate Mousse cake ( Saison!)
- now on my hips!

Nothing less than a dress from NYC!

Cam in what Dave calls " Mein Kampfy Chair"

Watch out Cowichan Girls, the boys are in town!

Ron's handwriting, August 2011. Glyn got him to do the hug and kiss

On Saturday I hosted a wonderful 50th ( yes, believe it!) birthday party for self. Anyway, yesterday, as part of the cleanup of the debris, I gave Ron a few of the paper gift bags for wine bottles, and asked him to put them in the TV room. Not unexpectedly, they were not in sight when we went later to watch Titanic, but it certainly wasn't worth looking for them. I found them this morning, they were all opened up and balanced upside down on my clothes drying rack ( my green effort) It looked so festive! A few days back he was to do his usual round the block walk with Mr B. ( this he still manages, same route daily, and everyone round here knows him) anyway, after 10 min or so, I noticed Mr B still in the passage. I sent Dave out, telling him Dad had forgotten the dog. Dave reports that Ron was on Chippewa road, leash in hand, with that look like he knew something wasn't quite right with this picture... but not knowing what element was missing! Last week he had a treat for supper, prawns on a skewer- which he enjoyed though I think he ate quite a bit of the shell.... anyway, then he got confused and used the skewer to eat his salad, slice of bread etc... Last night, when I took him to bed ( I have to lead him by the hand, room to room, much of the time now) I got his gown and slippers off and told him to get into the bed, and he went into the walk-in closet even though the bed was right there. Speaking of the bed, Ron has lately developed a penchant for piling on the blankets etc - this, in the middle of summer, so it's some kind of an obsessive thing. Last week I found he'd added 7 (!!) extra layers on top of the duvet and sheet - 4 blankets, a sleeping bag opened up, another duvet and a fleecy sheet! So now I'm hiding the bedding as it seems he scouts around the house finding extras.

It's great to have Dave home safely from his global gadabout, - and lovely to have him here last week. There has been such a marked decline lately with Ron, and very sadly, even though Dave was here, in person, Ron didn't know his name. Ron now needs me to shave him, shampoo him, generally lead him by the hand to the right room, and he needs direction constantly. He will take no initiative, defaulting to standing statue-like, near me, in his own world. The overriding phrase I use is " Come, Ron." Unfortunately he still seems depressed, though without the meds, it could be worse... sometimes saying, lucidly, "I want to die" or " It is all nothing." I am now going to hire help in the house for some of the personal care stuff- just waiting for extra funding for this.

I am certainly feeling like we've moved into a challenging phase and I just want to do the absolute best I can, and be a good wife to Ron. Years ago, I read the book Saturday, by Ian McEwan. There is a powerful paragraph where the lead character is flooded with guilt when leaving his confused mum after visiting her in a care home- and the words impacted me so much that I copied them down. They now poignantly reflect my own guilt and thoughts. Here is the quote from the book-

Saturday – Ian McEwan

"The hard part is when he comes away, before this visit merges in memory with all the rest, when the woman she once was haunts him as he stands by the front door and leans down to kiss her goodbye. That’s when he feels he’s betraying her, leaving her behind in her shrunken life, sneaking away to the riches, the secret hoard of his own existence. Despite the guilt, he can’t deny the little lift he feels, the lightness in his step when he turns his back and walks away from the old people’s place and takes his car keys from his pocket and embraces the freedoms that can’t be hers."

Carry on Caring

2011-08-07T08:08:00.000-07:00

Ron has now been on the Celexa for over two weeks- I think it is making a bit of a difference but melancholy breaks through periodically... I do my best to comfort and reassure him, and thankfully Glyn has a lot of experience to draw on, for helping people who are feeling low.

Ron now needs more help with the practical aspects of personal care- I shampoo his hair for him, put the toothpaste on the brush and oversee him cleaning his teeth, lay out his clothes, and yesterday shaved him... these things are tiring but manageable for me. It helps if I get a decent night's sleep and am not distracted by any other worries. Decided to take a head in the sand approach to the latest financial turmoils as there is not anything I can do right now anyway, no point in selling off mutual funds at this stage!

A few days ago, Ron arrived back with Glyn and had in his hand a rather bizarre cellophane-wrapped glass plate with candles, made to look like pieces of sushi, with a pair of chopsticks attached to the top of it. I accepted this offering with a small degree of enthusiasm. Anyway, the following morning, after breakfast, Ron, with a glint in his eye, started to unwrap this and proceeded to try and eat the candles- he'd thought it was real sushi! I had a good chuckle over this, and Cammy kindly took him that day to get some sushi, which clearly he was wanting.

We had a wonderful long day out yesterday, it was my mum's cousin - William Pike's-70th birthday celebration - which involved seeing lots of family, a delish lunch, tennis matches, cake and a hike to the local river for a swim... we both had a great time. I ate like a piglet. Anyway, upon arriving home, after reading the paper and doing the cryptic, I lay on the couch for a snooze. I may have mentioned that Ron sometimes speaks nonsensically - and this happened again. This time I wrote down exactly word for word what he said to me " You should, because when you do get there, it goes back and you're not anywhere anymore again. You need to get it going because otherwise you're going to be here forever" I am a #1 Ladie's Detective, even after the first sentence (the second holds a little more logic) I knew he was actually saying to me, " If you fall asleep on the couch now, you may end up there all night" !!

I am so looking forward to Dave coming back next weekend- finally! He's been traveling all over the globe since January, including delights such as North Korea, The Trans Siberian Railroad (entirety in third class- with vodka drinking, card playing, chain smoking Russians, who spoke no English at all!), a month at Doone Village with my mum, and more recently, Serbia, Bosnia, Croatia. Many other places were also covered. It will be great to see him and have some meaningful conversation on Chippewa Road. He will be arriving in time for my 50th birthday festivities.

Progress report

2011-07-24T09:28:00.000-07:00

A quick update. The psychiatrist saw Ron last Tuesday and it was very evident that he is significantly depressed. It took a few days to sort out getting the medication, something called Celexa - which hopefully will kick in sooner rather than later. There was a heartbreaking lucid moment a few days ago when Ron said to me " Why can't I be a normal boy?" Then this morning he accidentally wet his pants when out walking with Mr B. It is all incredibly difficult.

I have had some conversations with friends and family regarding bringing in extra help into the home- only those of you who have faced this decision would understand how monumental it is. It's not like one decides to do it and acts on it the following day. It will take me a while to reconcile to having a stranger live in the house, I really don't want it.... I am also not opposed in theory to placing Ron for care, but I really only want this to happen when he's at a stage where he doesn't really know or care where he is. In my mind he's far to aware at the moment for me to be contemplating this... even when I consider placing him for respite- a couple of weeks in the fall, as strongly recommended by the psychiatrist- I actually feel physically ill thinking about it. I do appreciate that this is a difficult stage, and hope that it will be easier emotionally for me when Ron is less aware of his challenges. Right now it is the most wrenching time I've faced so far. I thank God for my dear friends and family. It is the love and support of others that is keeping me strong.

Refreshed

2011-07-18T20:38:00.000-07:00

Well, I had the most amazing time in France and have returned home restored and refreshed. The trip was just glorious, very relaxing and indulgent, with much wine, cheese, baguette and pate eaten. It was lovely just stopping off at the small towns, cycling in for supplies and enjoying the relaxing long evenings on the boat. The scenery in rural France is just gorgeous - old crumbling buildings, narrow cobbled streets, churches up on cliffs, chateaus and vineyards, remarkable ancient bridges and beautiful summer flowers all over. I so enjoyed Jane and Craig's company, along with their children and the other to families that joined us - it was so refreshing to connect with adults and enjoy long evenings with delish wine and food. I haven't dared step on the scales yet! It was so special to have some time not being responsible for anyone - in fact, being that one that was looked after and taken care of so well. How wonderful to enjoy the company of dear friends, and to feel valued and appreciated.

Coming home has been an adjustment. Ron presents new challenges almost daily. He's been getting up at night, I hear from Glyn, on two occasions, showering and dressing at 2 am, and worryingly, I learned from his mum that he actually went outside in the middle of the night when he was in Vancouver. Then he's having trouble with personal care details - when asked to brush his teeth, he filled the basin with water and put his head in, or this morning couldn't understand what to do when I gave him his undies to put on....Last night when he was to put on his pj's he ended up dressing in a pair of shorts and daytime shirt - it seems he is unaware of the time of day and what's appropriate. I have also been increasingly concerned that Ron may be depressed, he sometimes seems lucid about his condition, and has been tearful on occasion - I find this very distressing and difficult to know how to manage. Tomorrow the psychiatrist is coming to assess him, with a view to trying out medications. My mind is increasingly turning to thoughts of getting a live-in care giver, or even - as suggested by my mother-in-law today- placing him into care. It all seems quite overwhelming and exhausting to me to navigate these waters. My primary concern is Ron's well being - and what would work best for him. I am going to look into getting some councilling to help me with managing the turmoil of emotion I am in.

Summertime

2011-06-15T06:23:00.000-07:00

Well here we are already almost at the solstice- Matty turns 22 today. I know the summer is Ron's favourite as he loves swimming outdoors, and is still easily able to manage it. Makes for a wonderful trip out with the caregivers - far easier than having to fill the time on a dreary winter day.

I took Ron to the mainland and we had a couple of days with my dear friend Lisa at her lake house in Merritt, BC. She is so caring and was thoughtful and compassionate with both of us, just what I needed right now. Though it was too cold to swim, Ron really enjoyed paddling with her and he managed so well with that. However, it was so evident how compromised his understanding is, I think Lisa as shocked - her words to me " It's continual... I don't know how you're going to manage" Stuff like Ron not understanding how to take off his wet swimsuit and put on his dry shorts, not able to do his seatbelt in the back of the car, having trouble putting on sandals, getting very moody because he didn't like our movie, unable to follow simple directions etc. I think for me it put a new light on it, seeing the situation from Lisa's point of view. I am thinking of looking into hiring a live in caregiver in the fall. Will see how it goes.

Also, I met the psychiatrist and a clinician councilor and, after hearing some of the day to day challenges that I face here, they are concerned about the situation and feel I have definitely moved into that grey area between managing fine at home and needing professional care for Ron. There is no way right now that I would want him anywhere but at home - so will do what I can to sustain that. My formula is getting help and taking regular, decent breaks. Speaking of which, in just over a week I go on a long-anticipated boat trip on a canal in France, with my dear friend Jane - this is her 50th birthday gift from Craig, her husband, to have me join them!! It's brilliant, of course I am delighted!

There have been some incredibly wrenching emotional times lately - Ron has had some moments more lucid than he's had in ages. He said to me the other day that I am a wonderful person - a lovely affirmation, though I feel I fall far, far short. Then yesterday, it was awful, on the ferry, when he was battling with the logistics of eating a wrap with a dip, he looked up, his eyes filled with tears, his lip quivering, he said " Why is this happening?" I was filled with such love, tenderness, compassion and deep sadness... I could only stroke his cheek and say " I don't know, it's so very unfair" And told him what a wonderful father and husband he'd been, and how much he meant to us. Then, and this was awful, he said, " What have I done?" - I sensed he felt he was being punished. It is so totally unfair, he is such a good, caring person, this should not be happening. I find it so very difficult to reconcile this with a caring God. Life is not easy!

Well on to cheerful things, let me post some pics from the weekend. See how slim is self? Have been more watchful in anticipation of lolling on a barge in the bikini ( diverting men from France or other parts of Europe?!! ) and in prep for my mid life crisis of turning 50 in August.

Ready for morning coffee

Some interior views

Nicola Lake

Serving up outdoor lunch after a wonderful hike above a string of lakes

Good news

2011-05-20T17:36:00.000-07:00

Well, such excitements on Chippewa Road- Ron and I are going to be grandparents - Cammy and James are expecting their first baby in late December this year. My reaction was of delight which immediately turned to tears of joy and thanks that Ron will have the chance to hold his grandchild. It is fantastic to have some positive news in the family for a change.

It's great to have Matt home at the moment, he's so mature and so very good with his dad - I left him in charge and had a short break - a wonderfully restorative visit with a dear friend, Anne- and was totally pampered and the one looked after, rather than doing the looking after, for the whole time I was away. She has an ensuite for guests, and most wonderfully, sets up a tea tray for morning tea in the room... and I had the most exquisite afternoon naps I've had in ages- For sure I'll be returning to her on a regular basis, it was heavenly! I have come to realize that breaks are my coping mechanism, and a very fine way it is to cope too ... I think I may have some of my dad's restlessness in me.

With Matt here, the house is filled with music, sometimes guitar, sometimes his fiddle, or his DJ equipment, or, my personal favourite, his piano playing. Ron pulls out his flute too, from time to time, and it has moved me to tears to hear him joining in- not always on note, but sometimes just perfect - it's really moving to hear, and a treasured memory for Matt too.

I value moments - rare as they are now, when Ron strings together a few words into something lucid. Last night while Matt and I were pottering in the kitchen, he looked up at me and said "Who's that pretty girl?" What a lovely compliment - it will sustain me for ages - compliments are lean on the ground around here!

Moving on....

2011-04-22T07:48:00.001-07:00

Seems to me in the last couple of weeks Ron has actually taken a fairly steep step down, rather than that pretty gradual slope I'd become accustomed to.

This blog acts as my diary of this journey, so that's why I record some of these things, so I can refer back and remember when they happened. I don't intend for it to be a depressing list of more and more losses. So in the last week I have now had to put his clothes out for Ron every day - that was becoming more and more of an issue, and it was a real challenge/struggle for him to make selections and actually dress too. He seemed happy when I asked if it would be easier if I picked out his clothes. Then yesterday he put on two different shoes - though they looked similar, they were from different pairs. Last night, I served his supper on a tray and said we'd have it downstairs and watch a movie - well he went through to the bedroom with it, and looked totally lost. Then this morning, making conversation, I asked the kid's names, and he says, Matt, Cam, Grandma. oh dear! I suppose two out of three ain't bad! He also couldn't add 2 plus 3 ( it has been over 2 years since I have "quizzed" him on anything, and was curious) He had absolutely no idea - just said two and three? Say that again? ( I did) Two and three? In an extremely vague way. So sad, this from a man who could do square roots in his head, multiply two three digit numbers quickly and accurately in his head, and what always amazed me, he could very quickly calculate what day of the week any given day in the calendar year would fall on!

Ho hum, it's getting harder for me now... very, very tiring, it is continual, relentless, there's never a day when he "gets" what's going on. I thank God for breaks and the kind people that enable them. I would not wish this on anyone. So for now it's each day as it comes, but I am concerned it's wearing me down, not so much the physical stress, but the emotional. I do what I can to keep strong. Thank God, too, that Ron is so sweet, if there was aggression or swearing or stuff like that, the end of my rope would have been reached.

Reflections on four years

2011-04-03T18:21:00.000-07:00

Tomorrow is the forth anniversary of Ron's diagnosis, so I thought I'd reflect on my journey through the time. If you're one that enjoys the amusing or touching stories of things that happen on Chippewa Road - this won't be the right post for you!

I do realize this is a public blog and it is hard for me to express my feelings at the best of times, but at the same time I know that those who read really do care about me, many have said so, and also there are some that read the updates because they are in a similar situation. As humans we all struggle through life and meet the challenges presented with our frailty - and every so often, our strength. Of course I second guess myself, wondering if I've provided Ron care in the exact right way, but I do know that I've done my very best, and the "for worse" and the "in sickness" parts of the marriage promises have proved way more challenging than I had imagined when I said those words at twenty!

With writing the blog I generally put a positive spin on things- always fearing that gloomy thoughts do not make good reading. I will be honest today - it has been the most difficult four years of my life - a journey of continual and increasing loss for Ron, but worse, a journey of increasing isolation and loss of self value for me. (More on what counter-acts that later in the post.) When a spouse suffers any other disease, there is still that connection, that interaction and support, and most of all, affirmation for the care given. This has all but disappeared, I have clung onto small scraps of affirmation, a while ago, while I was cleaning and cooking etc, Ron said "you do so much." He saw I was busy with the tedium of running the household, but has no insight as to how much I do for him now- his care needs are much higher now, he needs continual direction and help through each moment of each day - here, Ron, sit down, here's your drink, here, put on your sweater, let me find your ipod, how about you use the loo? etc etc, never, never lets up. He is very vulnerable and confused now - and I am protective and have to continually guide without verging on bossy - a hard balance, not to mention, exhausting. He cannot reliably name our children, doesn't know our town, our phone number, couldn't add 2 and 3, cannot express a thought... There has been an evolution from husband and wife - equally involved and engaged, to carer and cared for. I am married, but it is not a marriage. It is so awfully sad - and it is never any easier, because there is never any improvement, and I am practical enough to have accepted the inevitable outcome of this deterioration so that now, when changes happen, I am not surprised or depressed, it is what it is.

The creative energy that enabled me to paint is not there for me - and nor is the desire, because painting is very isolating and my deepest need is to feel engaged and connect with other humans. There is never any meaningful conversation in our home, indeed, most days not even a hello for me- many times now, Ron sits staring at space, or stands lost, statue like, so I am involved in the community to get those interactions that I so need. Thankfully, the CSIL program provides funding to cover some care costs so that we are able to provide Ron with wonderful care and allow me to have breaks 4 days of the week. I imagine if Glyn was not in our lives, I actually wouldn't be coping now.

It's well known that when things get tough, some people just vanish out of your lives, this happened for us, and I have long ago stopped feeling upset. In many ways the Medical community and the Christian community disappointed me deeply- though there are some precious exceptions. Kind friends and family, who walk with us on this journey are more treasured than they can imagine. Lately I have realized that my relationships with very special people in my life - some very recent - affirm me in who I am, give me that human love and conversation, and enrich my days to strengthen me for the times ahead. I think that's what life is all about, helping one another through the struggles and rejoicing together in the good times.

Another - and this may seem bizarre- huge help to me is the fact that we exist in this age of technology. What would I do without the PVR box? - Ron really does enjoy the tv and it keeps him content through each evening. I talk at length on the phone to special friends and family, and have lately discovered the allure of skype! To see a loved face from across the ocean really brightens my days! And whatever would I do without the internet and email? These things fill my evenings - cheap, cheap entertainment!

When Ron was first diagnosed, the doctors spoke to me at length about building bridges, about accepting that I will survive this and will still be young when I am widowed. I am slowly realizing the wisdom in their words and making sure that I don't feel guilty thinking about what the rest of my life will hold. On a recent visit with Ron's case manager she spoke very directly with me about taking time out to get away on regular, decent respite breaks, or I would burn out. There is a huge danger of the caregiver actually getting seriously ill with the stress, and I am shrewd enough to realize it is in the interest of the Health Authority to keep me strong and well, and of course, for Ron, far better the longer he can be at home. Placing him for professional care is a thought that I have always pushed away as something far into the future - but I am now hearing from the medical professionals that it may need to be considered in a year or so. Hard to imagine, but I do hope that those that love me will speak bluntly if I am wrecking myself by trying to carry on beyond what I can manage.

So now, instead of feeling like my life is on hold, I will enrich each day for Ron and for me, as best I can. I will make plans and dream dreams and embrace joy when it comes to me. Life is good- maybe God does have some plans for me after all....

Oh my...

2011-03-28T14:36:00.000-07:00

Last night we enjoyed a wonderful meal with my friends Sharron, Kaye and Lisa- Ron was content with the feast set out on his plate and indeed, seemed to be enjoy the company of so many beautiful ladies. Then Kaye asked him a question, I can't remember, but it was something pretty routine, about Barkley or something familiar. Ron answered, and not one word was English, the whole lot was absolute gibberish... I was gobsmacked, it was just such a shock, he couldn't even say one word correctly, but spoke for a while. He did seem to realize that it wasn't quite right, but wasn't too fussed. We overlooked it and Lisa quickly moved the conversation on. It is alarming to contemplate having to deal with this more and more as time passes.

On to a funnier note, Sharron reminded me today, she's got a lovely drawing she did of Cammy at one of our sessions, and when we were helping her move, she'd showed it to Ron, and said " Do you see who this is, Ron?" and Ron answered " It's not very good, is it?" I was doubled over with the giggles at the time, and again today as Sharron recounted the story. Then something similar happened this past weekend, we had a gorgeous supper out with new friends in Maple Bay - Ron put a forkful of chicken into his mouth, and announced " It's not very nice!" I was so taken aback - I suspect (hopefully!!) he had a bit of bone or something in his mouth, but still.... it's all quite mortifying.

Anyway, my spirits are very high and much joy and laughter comes into my life from special relationships,some old and some very new.

Jiggedy Jig

2011-03-16T21:36:00.000-07:00

Lindy's two lovely girls, Caroline and Catherine

Lindy and I

With my mum and sisters

At Monteseel - valley of 1000 hills, KZN

Mum at Doone Village

Well, a quick post now that I'm settled back at home after the most amazing trip - it was a fantastic blend of visiting with family, friends and having a good relaxing " holiday" break. I really was not keen to come back to Canada. Somehow each time it just gets harder to say goodbye to my mum - I know my visit would have been the highlight of her year.

I went via NYC, and had that absolutely brutal 18 hr flight JNB -JFK coming home- it's such a long haul - but thankfully as things worked out I did have some extra seats to spread over, that's unheard of these days! I had a wonderful time in Manhattan too, fitting in a visit to the Met and the MoMA as well as lots of walking on Broadway and in the Park.

Things seemed to go pretty smoothly here while I was gone - Glyn settled in with Ron and developed a routine with him and kept him fed and happy and out of mischief. I am so very grateful that it all worked out fine.

Coming home has actually been a shock- I can't really say whether or not Ron has declined much in my absence, but after being three weeks with chatty and engaging adults, the contrast is stark and depressing to me. The challenges in communication are enormous. Here's an example - after supper Ron said to me, while making a circular motion with his hand- " I want what the normal people are having" - I know you may find this hard to comprehend, but I was delighted when I figured out what he was trying to communicate to me- he wanted to watch the NCIS that I'd taped for him on the television yesterday. He had wanted me to tape some "normal" shows- maybe as opposed to his space channel shows, and it was only because it was the time of day when he usually settles down to watch tv that I was able to deduce that's what he was trying to say. The other night too, he had no clue about where to go to bed... and yesterday morning didn't know about putting his socks on.... so there is more overseeing needed now in so many little ways all through the day.

Most nights I have dreams where I have to sort out problems for Ron, or help him in difficult and frightening situations - nightmares really- and incredibly stressful. Last night I dreamed I was in a big, deep and glorious bath tub, and he came in too, and sat at the opposite end and we had a conversation, it was such a joy to me to dream of him as he was, and not as he is.

post from paradise

2011-02-24T21:54:00.000-08:00

This post has nothing at all to do with how things are with Ron, because I am actually quite blissfully unaware of the happenings on Chippewa Road, other than the fact that there is an inundation of snow, and if the Times Colonist is to be believed, expected temperatures of -16 degrees tonight! Having said that, I did have a short chat and all is well, and Ron and Glyn will be enjoying a milktart that my dear friend Nicki dropped off for them.

My adventures have been going so very well. I had two stimulating but exhausting days in NYC - a full day a the MoMA, and then another at the Met where I took in a couple of interesting docent tours, one on Near East ancient civilizations, and one on Greek and Roman sculpture. I could actually spend a week there drinking in all the treasures. For me there is always a sense of sadness though, that the world's treasures are not in their home countries, but in these wealthy western museums - and so many were pillaged to get there. At any rate, it was brilliant. I also walked through the park, which was glorious with the angled light and the snow and the leafless winter trees.

I then suffered the endless haul to JNB and unfortunately was next to a large woman who lifted the arm rest to enable her bulk to encroach on my meagre seat - and the plane was full so no escaping. I had a night with Lindy - gorgeous array of salads and spinach stuffed chicken followed by plum and apple cake. yum. Then the following day she treated me to a massage which was just perfect after the ordeal of the flight. ( 15 hrs in the air) Then on to Durban to be with mum. She had, of course, a number of things to get done while I am with her, and happily we had a successful day- took her too the King's speech - now bear in mind, she's totally blind, so I had to narrate for the duration.. I made sure we were far from the other theatre goers! We also did some shopping, found her a table and hosted a happy hour for some Doone village mates. How wonderful woman friends are and the conversation was every bit as stimulating as my happy hour, hosted each Tuesday with very special friends. But ma's friends, some of them in their 90's were actually just as much fun to be with! Bodes well for the future.

The following day I had a coffee out with an old friend and it was amazing to pick up after thirty years and enjoy a couple of hours of conversation and memories. I felt 15 again. Then on to lunch with Janet and Mom - to a lovely nursery in Assagai with delish food and a cooling breeze under the canopy. The next day after time with mom, off to the coast to stay with an old school friend, Jenny, and it is from her beautiful home that I'm doing this update. I feel so warmly welcomed, and we have talked for hours and hours about so many details of our lives. For the first time since leaving home, I feel completely relaxed - we went on a long beach walk yesterday and happily the natural geography of Ballito bay remains unchanged, because I wouldn't recognize the town, it's so built up. Then I luxuriated beside the pool at her home and enjoyed the warm sunshine and music. Far and away, hers is the most beautiful home I've ever entered, and it's such a treat to be here, - I did theaten never to leave, but sadly today, I must. The sisters, mum and I will go for a night to a game reserve on Saturday, including a game drive, which is my pre-emptive birthday gift (50th!!) Then on Monday I'll be seeing my most long standing dear friend, Jane, for a trip to the midlands before returning to Joburg for a few days with Lindy and a lunch out with another old school friend before facing the homeward journey.

This trip is proving to be so restorative and wonderful, I know I won't want to go home- yet because of it I will face challenges ahead with renewed energy and peacefulness.

Up and away - to taste that big apple

2011-02-13T07:19:00.000-08:00

Dave, the day I said goodbye

Ron's 56th birthday

Updating this blog is something on my list of things to get done before I leave for South Africa to see my mum and sisters. I am going through NYC - I'll have two glorious - though cold- days there, and plan to spend much of my time in the Met, taking in some of those very informative docent tours offered. In SA it will be pretty low key, spending time with family, no doubt eating and drinking too much, but do have a side jaunt planned to an old school friend, Jenny, who lives in Ballito Bay, and another trip to the midlands with Jane for an overnight, as well as one night up in a game reserve with family. So it should be a fantastic visit.

Ron will be home, as dear Glyn is moving in here for the duration. I am so grateful for the funding in the CSIL program ( choices in support for independent living) I don't use all my monthly allotted amount and have built up enough to be able to pay Glyn pretty fairly for stepping in and being me. If only someone would pay me likewise!! I have evolved to viewing Ron's disability income as a salary that I've earned, and I do deserve it.

Ron is ok, I would not say great right now- I think there has been more of a decline and he is quieter, less engaged and verging on the sullen sometimes. I had been warned this is the course of the disease, but am concerned he could be slipping into depression. Our doctor is away this week, and so I've written her a note and Glyn may take Ron in if he's worried - I am open to meds being tried. It could also just be this grey weather, and Ron not cycling, swimming or running much because of it. He is in no way upset about me going, indeed, I think he enjoys Glyn's company more than mine, as Glyn represents fun, coffee out, hiking, guitar playing, futzing on computers etc, and me, I'm just boring, every day life, house cleaning, chores and sometimes a bit of shopping with him....

Dave is now in Beijing, and to my horror I see it's about -14C today, and his coat that he went with is very light weight. He will travel another month or so in China before heading to Vladivostok and the Trans Siberian Railway trip. Cammy and James are in Mexico for an all inclusive week, and with Matt in Halifax, I feel like the family is scattered on all corners of the globe.

I'll include some recent pics with Ron for your interest. Doesn't he look well?

Mini breaks and maxi breaks!

2011-01-18T16:10:00.000-08:00

I am just back from a two day stay at my dear friend, Sharron's, in Victoria. It was so restorative and relaxing just to be responsible only for myself and to have the time alone- Sharron is in Mexico, and kindly let me use her home. I went for long walks, out for coffee, watched DVD's and did a bit of shopping - though trying on bras is not exactly in my relaxing category. I am also going to SA to see my mum, sisters, family and friends in Feb - dear Glyn will be moving in on Chippewa to hold the fort here with Ron. I have allowed time to connect with friends when I'm there, as I don't want to switch from caregiving for Ron, to the same for mum for the duration ( she's totally blind, so I know there'll be all kinds of jobs for me there!)

I like to document stories of the things that happen in this blog, because for sure I'll forget them later. On Christmas eve, I had the bread machine going with the dough for the Christmas morning cinnamon buns. Well, the machine is an older one and makes quite a racket. It was so funny- clearly annoyed by this, Ron picked up the TV remote and aimed it at the bread machine and clicked the volume button! I said, what a good idea, Ron, but I don't think that will help! Ron is having more trouble with understanding words now- not just remembering names of things. We had his cousins over, and Vicki asked for a spoon - ( I was on the phone, in another room) Ron said he'd get it, and came back with a knife, then when she repeated she wanted a spoon, he came back with a fork. At least he went to the cutlery drawer, a year from now he may not do that much. Also during their visit, we went to a new coffee shop in Chemainus. Ron said he remembered when he worked there - I asked, you mean this coffee shop? He replied, yes. Of course I just kept quiet - I try to let things rest when he is wrong, though I slip up sometimes. Dear God, I try my best, but I do slip up... but not in the getting cross dept.

I was so touched to receive an email from a couple we met at a dinner out recently. She wrote so warmly and kindly to me, complimenting me on the way I managed through the evening with the " never ending role of caregiving" - this meant so much to me, and we're going to connect later this week. It is rare that what I do is recognized in this way, and it was so affirming. She is right, it is never ending... ordering for him,watching that he takes his drink and not someone else's, giving him his cutlery, putting his napkin on the lap, escorting him to the loo, and most of all, doing the talking for both of us, trying to be normal when nothing is.

Christmas Merriment

2010-12-24T12:21:00.000-08:00

I laughed this am, or rather was so exasperated, not much I could do. Phoned home from town to talk to Matt ( he's recovering from the wisdom extraction, was asleep when I had to leave house with him and R there). I wish I could transcribe exactly the conversation with R that actually took over 5 min before I gave up...

Self - hi Ron, is Matty there?
R- who?
Self- Matty. Silence.
Self- Can you look in his room?
R-Who's room?
S- Matty's.
me, waiting..
R- He's on his bottom.
S-You mean down the stairs?
R- yes.
S-Can you go down? Silence. Self- Where are you? Silence. S- Are you in the good lounge?
Ron - Upstairs?
S- No, downstairs
R- must I go down more?
S- No. Are you in the tv room?
R -where?
S- the tv room. Can you find Matt?
R- who?
S-Matt... is he sleeping?
R- No .
S- Where is he? Can you give him the phone?
R- I don't see it.
S-You're holding it, it's by your ear.
R-What?
S- the phone. Can you give it to Matt?
R- where is it? I don't see it.
etc etc... went on for ages, in the end I gave up, when he still didn't understand he had the phone in his hand. I heard from Matt that he had been in his room sleeping. Thank heavens it wasn't something urgent that I really needed Matt for!!

I think I need a holiday!!

a bit Bah Humbug!

2010-12-14T16:19:00.000-08:00

I don't feel overly festive or ready for the big day yet. Maybe things will change with Matt's arrival on Sunday - I really should root around and at least get that wreath out. Also, this year, instead of the hassle of sending out Christmas cards, it's going to be an e-greeting, and instead I'll donate money to the Nepal Education fund ( women's literacy) that I support.

I had a chuckle this morning, went out to the recycling, and saw Ron had put in a pineapple top! Little things like this help me to see the funny side of life. Not so good was his latest cognitive testing result, it's down to 3/30 - which is significant. He battled in every task, couldn't name the year, month, address, phone number, our kid's names, couldn't name simple animals from drawings, had no clue with drawing the clock ( a bunch of stripes and v's is what he drew) etc etc. It made it so clear just how compromised he is now. Then the other night I left him in his pj's watching a show, when I went out to tai chi. When I got back, an hour or so later, he was all dressed, and kept telling me Chuck was here. Anyway, it turned out that Chuck had phoned, inviting us to the symphony for another night, and I realize that Ron thought we were going out that night, and so got ready... he was hovering and quite anxious for me to come back. I have become accustomed to everything taking forever these days. This morning, I gave him his jeans to put on. Then I got fully dressed, brushed my teeth, washed face, put on my touch of makeup, even plucked a few stray hairs from the eyebrows, and then saw he had only just finished putting on the jeans, during the time I'd done all that. There is no way to hurry him, and that's hard for me as I'm really efficient ( or at least like to be!)

Anyway, I'm looking forward to the boys being here, it will be lovely - and I've booked for one night for all of us ( incl Cam and James) to go to a swish hotel in Victoria, as a mini break, on the 29th. That will be special, our first time all of us away together, given that Dave is going to be traveling for 4 or so months in the new year. ( wants to do the Trans Siberian railway in it's entirety, 3rd class! He'll probably survive on cigarettes and vodka)

56 today

2010-12-05T11:51:00.001-08:00

Today Ron is 56. I am not sure that he really has much of a grasp about the significance of birthdays now. We are seeing good friends for a bit of a hike and treat in Cowichan bay this afternoon, and then will be taking Cammy and James out for supper in Nanaimo tonight.

I find I am developing a lot of patience, and learning to let most things go. It's always a balancing act, what to involve Ron in - because he never will initiate doing anything, and when asked to do anything, there is a huge chance he won't manage anyway. Last night, after I put the dishwasher on, I asked him to wash up two pots and a mixing bowl - that I knew he could manage. Then I went to have a bath.... and heard him unpacking the still running dish washer. So I called him, and when he came, I told him " Don't unpack the dishwasher, it's not done yet" -so he said " I'm not!" - and off he went. A few minutes later I heard him unpacking the dishwasher - so had to get out dripping wet and go through to the kitchen.... and there the pots were, still unwashed... so is it better to not involve him at all, or let these things happen and not be fussed? In some way he must have known he'd got it wrong, and I really couldn't let him unpack dirty stuff into the cupboards ( though that's happened before!) - so by involving him is it helpful or harmful? Oh well, I muddle along as best as I can, probably getting it all wrong and full of human failing. But at the end of the day if we're both still breathing, I can pour self a glass of wine and think, "Cheers, I made it though!"

Insights

2010-11-15T19:10:00.000-08:00

Some days lately, Ron has some insight into what's happening - and that's not always easy for me. The other day he was singing along in the car as I was driving him out to Saison. I turned to him and said " You're happy, aren't you?" He looked at me, and said " How could I be?" My heart broke and I told him how wonderful he was and how brave he was to handle it all so well. Then a few days ago when I was cleaning up in the kitchen, he said " You do so much" This is the first affirmation of my role that I've had in over three years, which was nice. And he's dead right, sometimes I feel overwhelmed with all I have to manage. There were a few days last week he seemed depressed, and said " Nobody cares about Alzheimer's any more" Possibly he was feeling low because Glyn is away for a week.

There are ongoing challenges related to Ron's lack of vocab, and sometimes I'm quite the detective. He was looking at a flyer for a grocery store a while back and said " It's that nasty stuff again" and I realized what he was telling me is that it was Halloween time. Then walking with David in our neighbourhood, he saw a magnificent autumn display on a tree, and he said " Look at the thing on the thing" - meaning the leaves on the tree. Quite often now I just can't work out what he's trying to say.

Lost...

2010-10-28T07:19:00.000-07:00

I'm having to keep a closer eye on Ron these days, there's been a couple of incidents of him getting lost. The first was a couple of weeks ago, on a glorious Sunday afternoon, I went for my usual walk with Barkley in the forest. Upon my return, Ron wasn't home, I wasn't at all worried, I assumed he'd just be having a walk in the neighbourhood. After a while, the phone rang, and it was Ron - he said " Hello?? It isn't where it should be." I knew he'd got lost and must have got someone to ring me, so I said " Can I talk to the person who's phone it is?" A couple had found him, he'd gone over the cleared land for the golf course, and was wondering in Lakeview Estates - anyway, they'd realized something was wrong, and taken him to the home of friends of theirs and from there, they'd contacted me. I was so grateful for the help... anyway, I told Ron that it's not good if this is happening, and that I want him to wear an ID bracelet. He was very cross with me for this, and thinks it's unreasonable and that he's fine.( he can't articulate any of this, I knew from his manner) I still need to order the bracelet, but will emphasize that it's for my sake, that I'm such a worrier. I did stress to him that he must just stick to our neighbourhood, the Properties ( many people know him here) and that even I get lost if I go to unfamiliar areas. There is no way I could stop him, and he absolutely doesn't want me with him, that would be like babysitting to him.

Then last weekend, I took him on a date, out for lunch, and to see the movie Red. Part way through , he needed the loo, and I thought I'd let him go, as it's a small theatre, but told him to be sure to come back to the right one - there are two cinemas in the building. Anyway, quite a long spell passed, and I got increasingly anxious, though he is known to sometimes take ages in the bathroom ( I hear all men are that way!) but anyway, I grabbed my handbag and went out in search of him. Eventually found him in a completely different section of theater two, happily watching some awful Disney film, quite unaware that he wasn't with me or viewing something different! But now for the funny part, in my haste, I'd grabbed my bag, but actually, it belonged to the lady next to me, and there she was bustling up the aisle, when I came back with Ron, in search of her property. I felt like a thief, and then I saw her furtively checking in the dark that her purse was still within! I actually had quite a giggle to myself about all this, and didn't find it upsetting or stressful, which was good, there are enough stresses in my life right now.

smile... or cry

2010-10-07T13:22:00.000-07:00

I found a note that Ron had written to himself - it read " ned to use the fone"

On Saturday night we went to a community event in a gymnasium that included a mirimba group performing after supper. I know Ron enjoys the music and was quite pleased when he got up and walked towards where people were dancing, so I got up to dance with him. He stood, a bit lost on the dance floor for a while, and then went to one of the vacant mirimbas and started to play - this was during their performance. I had to gently tell him no, and guide him away but felt so sad for him- it certainly would not have been appropriate to leave him playing, esp as it's not an instrument he knows.

I do still leave him home alone for short periods of time, and sometimes he'll decide to walk the dog. It absolutely wrenches my heart if I drive onto our road, and see him walking Mr B, with his ipod and singing aloud, and his altered gait, in his own world... of late I've been quite wanting to be in that world, absolutely no worries, no responsibilities and a very simple and peaceful life.

Back home

2010-10-04T19:38:00.001-07:00

Relaxing in Geneva

Lugano

Lucerne

With Lindy in Zurich

Well, it was an amazing two week trip. I started with a night in Zurich, pretty shattered after the long flight - so just a lot of walking around that day to clear my head and stretch the legs. The following day I went to Geneva, to stay with my school friend, Carolyn. It was lovely to see her again, and have a few days gadding about with her mum who was staying with her for a few months. We bussed into Geneva a couple of days and also walked to a nearby village for a delish cup of coffee on my last day there. Following that I had four days alone, one in Fribourg, and then three in Bern ( from there I did a side trip to a medieval walled town, Murten) The days alone were just wonderful, I was so relaxed and smiling, enjoyed a few Rick Steve's walking tours, explored all kinds of small cobbled side streets, climbed stairs instead of using the ferniculars, read or snoozed on park benches, and enjoyed a few stops at coffee shops etc. I felt totally safe traveling alone in Switzerland, the train and bus systems are so efficient and easy to manage, it was the perfect place to visit. Then I headed back to Zurich where I connected with Lindy, from there we went to Lugano and Lucerne. That of course, was the highlight of the trip, having the time with her, non stop talking, walking and our fair share of eating and some memorable glasses of wine too. It really was a fantastic break, though home was always on my mind... I knew that because, oh dear, many a night Ron needed me to help him out and sort out problems for him in my dreams! Anyway, it all went very smoothly here, huge thanks to dear Glyn, and Linda, his caregivers, but also Cammy and Dave helped out, as well as other friends. Ron didn't seem at all put out that I'd traveled, and Glyn said he'd be happy to help out again, so in all it was the perfect experience.

some pics

2010-09-10T22:18:00.000-07:00

A few pics, taken with my new little camera.

Switzerland!!

2010-09-07T07:01:00.000-07:00

Exciting news for me, I leave in a week for Switzerland, to have a short visit with an old school friend who lives in Geneva and also to meet up with Lindy, my younger sister from South Africa. I will be gone for just over two weeks - I know the time will fly but it will be lovely to be duty free for the duration. My doctor advises strongly that I need to take regular, proper breaks, so hopefully this will go smoothly for Ron. Dear Glyn is coming to be "me" while I am away, so Ron will stay home and there won't be much change to his routine. It's a hectic week ahead for me, I need to finalize the arrangements for care for Ron for every day while Glyn is working, I want to bake, cook meals,clean the house and shop for them both. Also some dear friends will drop off a meal for the bachelors while I'm gone, and I've made plans for Chippewa to be cleaned weekly. I've got a list the length of a full sheet of paper, and updating this blog is now something I can cross off!

Short on short term memory

2010-08-30T11:13:00.000-07:00

A couple of days ago, I was on the phone to David, and then passed the phone to Ron saying "Talk to David". He put the phone to his ear and right away said "hello Toots" ( our name for Matt) and then after a minute or so of chat, put the phone down, and looked at me, and said " Did I talk to David?" Ron's mum and sister visited last week, and we arrived at Romeo's for a dinner out, and all piled out of the car. No sooner was he out, than Ron got back in, and did up his seatbelt, thinking we were actually leaving when we'd just arrived. We had a lovely day out last week with our friends Bob and Donna, going to Qualicum beach, Coombs and the huge trees at Cathedral grove. It is always such a treat for me not to have to drive, and to have a day with some adult conversation.

Good times

2010-08-18T13:37:00.000-07:00

I've had a lovely last couple of weeks - Matt was home for a short break from Halifax, and it was just so enjoyable to have him here, someone to chat to. He's doing so well there, and we were delighted to learn he's got a job placement for next semester with a fantastic contemporary architectural company. Somehow it wasn't that awful seeing him go when I know he's following his dream. But Canada is way too large a country, for heaven's sake!

I had a fantastic birthday bash last Friday night, with lots of dear friends over, and all the kids too. Enjoyed wine and snacks on my front patio and then moved to the sundeck area when it cooled down a bit. Oh dear, was left with - amongst other stuff- the most divine cheesecake and chocolate mousse, which now sits on my hips. Ron did not enjoy the evening at all until Glyn came, when he perked up considerably. I realize I need to make the effort to entertain more, even though it's not easy, and R doesn't really like crowds, it still is just lovely to have an evening with good friends.

Sometimes I just let R do his thing and don't interfere - yesterday I put out a wrap for him to put his choices into for his lunch. Here's what he had - corned beef, cut up olives, broken up pieces of white bread ( put into the wrap!!) and globs of mustard. I actually couldn't look, but thought oh well, that's his choice. He was very happy with it.

I need to sign off now, big job this arvey - I can't find the melon I bought for the party last week - Ron has put it away Somewhere! in the house- and I need to find it before it rots and we are inundated with more fruit flies. A good reason to actually clear out the kitchen shelves and clean them. It's cooler too so I can bear to be in the kitchen through the afternoon.

oh, by the way, the wedding was brilliant, and I was like Lady Di in my own hotel room, first time ever, all for me, and Ron had a good time on the motorbike with his brother, Barry. yay!!

Quite a drop

2010-07-20T20:13:00.000-07:00

I've been quite upset in the last week after Ron had another Mini Mental assessment. He'd dropped from 19/30 to 13/30 in three months, and the average rate that people with Alzheimer's fall is 2 points every year, so this signifies a significant decline. He could not name the date, the month, year, season, our address.... all of which he could do three months ago. So that was hard to see. How can one be upbeat and positive about a diagnosis and a decline like this? He has also taken to sitting in the chair, staring at space... I had been told this would happen but could never envision it, and now he's at that stage. I guess the two main positives that I focus on are these - he can look after his personal care, and his character is not changed - he is very, very calm, so those are good things. He does enjoy the river, the outings, the dog, Barkley, the treats - so I am very grateful for Glyn being such a huge part of his life now and for the fun they have together. Yesterday they went to Saltspring Island for a day trip - this is all fantastic. It's probably easier for Glyn to be taking him out rather than me because of the men's washroom thing, which is a problem for me. So the new program is working out very well, and suits us perfectly.

My life is quite full with the usual summer time pursuits, and also I am doing ESL with a wonderful Iraqi refugee family that arrived in our valley about 10 days ago. I am just loving that and am dreaming about maybe doing this sometime in the future, I mean, in a more formal way, perhaps even in another country. Will have to see how things play out here with Ron. I also began today with cleaning down the walls to repaint Matt's room in time for his short visit next month. It's the one room I didn't get to last year. So keeping out of trouble....

Summer Heat!

2010-07-08T12:13:00.000-07:00

Whew, we're suffering with a heat wave right now, it was 34 degrees yesterday as I came home from Victoria at 5 in the evening. So not much energy here, but I realize I haven't posted in ages... it's really because not much of significance is happening in our lives.

Ron is spending a lot of time in the river with Glyn, they go for a short hike and then visit one of their favourite swimming spots... he just loves this time of year, and it's fantastic for me to have someone that can take him out and about. I shifted Glyn's hours so that on Monday evenings Ron has supper with him, and this allows me some time to see friends for supper or a happy hour, or indeed, last week I went for an overnight to Victoria which was wonderful.

I hope this is not a trend, but in the last week Ron has lost some significant things, his ipod and now his wallet is missing, which is more of a stress than the ipod. I think if it is found it should be kept safe, and I will set up for him an "everyday" wallet with only cash and his visa card in it. It is such a hassle to get all the other cards replaced.

Towards the end of the month, Dave and I will be heading to Dallas for three nights to attend my cousin, Alex's wedding. I am really looking forward to this, it will be lovely to get away and have a chance to visit with family that I dont' see very often. Ron's brother, Barry, plans to come up on his motorbike and take Ron to the Sunshine coast for a couple of days. Ron is so looking forward to this.

Change with caregiver program

2010-05-31T17:18:00.000-07:00

I can't remember if I mentioned I was switching Ron over to a different arm of the support program for caregivers, it's all under the Vancouver Island Health Authority umbrella, but he's now with a program called CSIL - Choices in Supports for Independent Living. This now means that the funding goes directly into an account, from which I write cheques for caregivers of our choosing. The advantage is that Glyn can work more hours and be paid more equitably, with pension plan, and holiday pay etc. I did also secure another lady, Linda, who has known us for quite some time and is part of the choir Ron sings in - and often drove him to practices, so it is re-assuring to have people familiar with him doing the caregiving. One has to do over 6 months with the home support program, and to through an application to be considered eligible for this other program. There is the hassle of the paperwork, but I have a feeling it was the right decision.

Sometimes I just have to chuckle at the things that happen around here. Yesterday, R was finished his walk with Mr B, and they'd come back in, and I said that it wasn't quite time to take him to church yet, that he should just relax. Well, 20 min later he was nowhere in the house, dog gone too, I realized they were out walking. He'd obviously looked down, saw his shoes on, jacket on and thought, well, I must be going for a walk, so out he went, forgetting that he'd immediately returned from one! Thankfully ours is a quiet neighbourhood, and he knows it well and all the neighbours know him, so I feel very unfussed with him out and about on Chippewa road etc.

Another incident - I asked him to help unpack the cutlery from the dishwasher. He put the whole lot into his left hand and then started trying to pack the machine with the other hand. So I said "Put the cutlery away, Ron" Well, he didn't get that, so I said " Open the drawer" ( he was right in front of it) three times, I may as well have been speaking Greek, so had to go and open it for him, then he was fine sorting it out. Very hard to not have simple instructions understood (even giving a husband instructions, directing them all the time, is hard) I've to weigh up every time just how much to ask of him, when really it's easiest to do everything myself, but do want to keep him engaged. Hard.

Looking forward to a break in the rain one of these days and some warm sunshine, and R can go back to the river and lake spots for his swimming.

Dear oh dear!

2010-05-09T07:04:00.000-07:00

What part of " Open the car door" is so difficult to understand? I despair of it all sometimes. Thankfully Ron doesn't - just calmly standing and unfussed - walks backwards away from car door, reaches hand toward handle, but does nothing, oh dear!

May flowers

2010-05-07T12:59:00.000-07:00

Thought I'd post some cheerful pics of myself and Mr B at the wildflower reserve which is just a short walk from our neighbourhood. I am trying to get a walk in the forest each day now, I find it is far more restorative than walking with the dog on our streets, where there are cars, dogs and people to distract. I feel so fortunate to have such a safe and beautiful place to go to, so near at hand. BBC Radio 4 podcasts while I walk keep me in touch with the rest of the world.

Not really a whole lot happening with Ron - though lately he's been a bit moody and has been known to stand with his arms folded just watching me... yesterday morning I told him he must not do that, he could sit and look at the paper, or eat his breakfast. I think he's been a bit unsettled and out of his usual routine as we've had quite a bit of company lately. Having said that, it is wonderful for me to have the company and the conversation, and I would not want to discourage guests just because of Ron. It was a lovely treat to see Matt last month for a short visit- he has to do a summer semester in Halifax, so it will be quite a while till we see him again. He had noticed quite a decline in Ron since Christmas - particularly with him not being able to find things... and that's not like searching for things, it's like him not being able to find the drink he'd just put on the counter, and we'd say it's right there, on the counter under the microwave - but he'd look up high, almost to the ceiling, eyes scanning everywhere but the countertops, trying to find it. Strange. I don't think he's understanding what we're saying when this happens. Scary.

3 years now

2010-04-05T18:26:00.000-07:00

Ron was diagnosed exactly three years ago - I am so grateful that he has really been able to retain some of the things that give him pleasure - his involvement in the church music and community choirs has been great - they have been so kind and accommodating, and helped him carry on participating, and I do understand it must be a challenge. Three years ago the doctors told me that someone of his age at diagnosis would have about 5 years on average of life left... it has been hard to slowly witness his abilities decline, his awareness of what's happening fade away, and his vocabulary seems to be diminishing particularly quickly. I am grateful that he can still manage his personal care, and physically is very well, though he does often seem tired and needs to lie down, sometimes even at 10 am after walking Barkley. The unknowns, particularly the unknowns regarding the rate of progression of the disease, make it hard to plan ahead and force one to live one day at a time. It is wonderful to be in Canada, it would be such a stress being in South Africa with this, he very often leaves the door and garage door wide open when he's out of the house, for sure we'd have been cleaned out long ago!

I've got a couple of days alone at home, as he's on the mainland with his mum and sister, but sadly I'm not 100% with a niggling sore throat and ear. Oh well, nothing a bottle of wine and a movie won't take care of. Cheers!

Some deterioration

2010-03-23T13:15:00.000-07:00

Well, the day came, I made the decision that Ron should not be out on his e-scooter any more - it had been in storage through the winter, but with the weather cheering up now, I knew he'd be wanting to take it out, indeed, had even mentioned it. Ron is just so very vulnerable now, I never felt it was a safety issue, but if something were to go wrong with the scooter ( and that has happened a few times ) he would be unable to phone me, unable to tell me what street he was on, and if someone tried to help, he would not be able to articulate the problem to them... so it is very sad to take this from him, but I felt it necessary. Davey was over a couple of weekends ago and broke the news to him. I have assured him that between Glyn and myself, we'll be able to take him to the river many times in the summer.

I finally got the photos together to make up a small album for him of all the people ( and pets!) that are significant in his life. Before labeling the pictures, I asked if he could name the people ( all very familiar) and I was quite shocked to see he didn't know his brother's wife or children, I had been sure he would remember them upon seeing the images. The saddest, though, which really hit me in the heart, he didn't recognize his own father who died just over three years ago, he said " who is the old man?"

Simple instructions, one goal instructions, even give him trouble, he couldn't understand what I meant when I asked him to close the door last night, he walked out and started looking all over the floor, not knowing what he was looking for. Also, hopefully this is a one off, when he shaved he did a really, really bad job, with a huge chunk of his beard missing now, oh dear, I just smiled to him and said, "don't worry, it will grow back" - but is this the beginning of him having to need help with personal care like shaving? Dang! I am just so very grateful for Glyn's support, and dear Cecil from home support services. I could not manage this all by myself.

The drawing group has resumed, which is such a joy, as are my happy hours volunteering at the Childcare centre. Foot still not good, but I am managing to wear my shoes now and have even walked the length of Chippewa Rd.

Anniversary Wishes!

2010-02-27T10:10:00.000-08:00

To myself. Oh dear, Ron has no clue. I gave him a wrapped gift this morning ( his favourite Purdy's dark choc gingers) and said, "it's a special day". He said - " your birthday!!" I said no, it's our Anniversary. There was totally no response-maybe pleasant surprise at the gift- but no wishes, no thoughts that he should have got something.... so there has been a decline since last year, since it was a similar scenario, but last year he said back to me, "Happy Anniversary", and "I should get you something." I am trying hard not to get tearful over this incident, it's not unexpected given his confusion, but I do feel alone and sad. 28 years it's been.

Mayhem and Maple leaves

2010-02-23T13:03:00.000-08:00

Well, I had a lovely day out last week with my friend, Kaye, soaking up the spirit of the Olympics in Vancouver, but boy, I have never seen the ferry or the streets so crowded. To get into any of the pavilions, or indeed just to shop the Olympic wear at the Bay store, was at least a two city block line up. There was rampant patriotism there, with every second person in red or wearing the maple leaf in some form or other. But not me, as you see! I didn't take Ron, the ferry ride is not easy with him, as he has got lost every time, and then with the crowds in the city, I knew it would be too stressful for him, so he was here and I got extra help in from home support over the supper hour. He really would have difficulty microwaving a prepared meal, and remembering to have a drink, etc.

I am somebody

2010-02-01T13:40:00.000-08:00

Thought I'd write an anecdote that amused me - the day will come when I won't remember all these little incidents. I took Ron out for lunch on Saturday, and, as he had ordered a lot more than I had, he was taking longer to eat than me, so I told him I would just nip to a shop over the road to check out a sale, but would be back within 5 minutes. When I got back, he told me that Thanya had been there, I was most impressed that he remembered to tell me, and her name. ( she's a close friend) Anyway, in conversation later, with Thanya, she told me she'd seen Ron and asked him who he was with, and he'd looked vague, and said "somebody" !!

much needed mini-break

2010-01-29T14:46:00.000-08:00

Well, it went by so quickly. I had not had any nights alone since June, so it's been a fairly long haul, and with the surgery and confinement in Dec and Jan, I really felt I needed some kind of a pleasant distraction. Cam and James took Ron over to the mainland last weekend, and my dear friend, Sharron A allowed me to have a couple of nights at her lovely apartment close to the centre of Victoria. It was simply heaven, to be there without housework or laundry luring me, to take self out for lunch and for a movie, indeed two, one Imax on Africa, and another Up in the Air, which I didn't actually enjoy that well, though G Clooney is easy on the eyes. It was just so relaxing and special, made even more so by the surprise gift bag Paulette, who had Sharron's key, made for me. It included wine, choccy, bath treats and hot choc, I felt so touched I almost cried. So all in all, I felt much like Lady Di at her Kensington Palace appt, though without the gentlemen callers.

The caregivers that see Ron on a regular basis have both remarked to me that they've noticed a decline in the last months. Not unexpected, I suppose, but it still sometimes comes as a shock when I realize how confused he is. His choir had a performance on Friday last week, and afterwards, I was talking to one of the ladies from the choir, and Ron came and joined us and said " have you seen my.... have you seen my..." then he pointed right at me, so I said " wife?" "yes" so he was trying to introduce us, though clearly we were already talking, and he didn't use the word met, and he didn't know the word for wife... one small example of how it is.

This weekend is the fundraising walk for the Alzheimer's society, and Ron is the honouree for the region, consequently there was a write up and picture in our local paper, though, as is typical, a number of the facts were incorrect in the story. Many people have kindly come forward with sponsoring Ron, over $1000 raised for the cause. Here's hoping for some most welcome sunshine.

Mobile, more or less!

2010-01-12T15:12:00.000-08:00

Finally, in the last couple of days, I have been able to drive into town in the smart car, so I feel like my life is getting back to normal again. It is a great joy to have the hard cast off, and to be upgraded to bandages, so much more comfortable. Still a few more weeks before I can walk on the foot properly, though.

Otherwise, not much more news, it is very dull and gray here, hard not to let the damp, cold weather make one feel gloomy. I remember this time last year I researched and booked the three day Vegas trip, but honestly, with the way Ron is now, I would not even consider taking him somewhere warmer, just for the sake of the holiday. The case manager has spoken to me about how important it will be to take a break sometime this year, I am thinking in the fall...

A development - though maybe it's a one off - is Ron had an incident of "layering", which I'd heard about but didn't believe it would happen - he dressed himself in two collared shirts, one on top of the other. That same evening he wanted to put on one of my flowery t shirts with his pyjama pants... but since then, there haven't been any further incidents. I am told it is not uncommon for them to wear two pairs of trousers, one on top of the other! Oh dear.

House arrest!

2009-12-30T15:21:00.000-08:00

Well, the surgery went smoothly but here I am, over a week now and not having left the house. It is an exercise in patience - the foot is in a cast and I am able to hobble about, weight on the heel, but even so after a minute or so it is throbbing and hurting badly, so I have to put it up, - consequently feel like nothing can get done! Thank heavens for knitting, the ipod, and the little dvd player, portable, that has been a fantastic diversion. I am feeling though, enough of this, and want that cast off, as the foot seems to often have pins and needles, or cramps within it, or is swollen and the cast feels too tight. Anyway, thank heavens home is a lovely place to be so I can't complain too much. Added to this, the last few days Ron has been bad with a sore throat and cough, so I've been having to tend to him, make his tea, medicate him, help him with supper etc, so it's all rather dire. Matt has been in and out, trying to fit in a bit of last minute socializing with his mates here before he's back to Halifax, but thank heavens he was around, though the nursing care was erratic, with him only getting out of bed at about 11! I am so very pleased that I am getting this over and done with now, Ron is so confused - even to try and get him to fill my glass with water was a challenge, so it would be harder to cope if he was worse. There were times he'd just walk into my bedroom and look lost...

Well, I'll raise my glass to dear friends tomorrow night, and wish everyone well for 2010.
Cheers!

The tree, done!

2009-12-08T14:52:00.001-08:00

Wishing all my readers and dear followers a warm and Merry Christmas!

55 years

2009-12-05T20:17:00.000-08:00

Well, it's the Happy Birthday for Ron today. 55. Way too young for all these challenges. We had a pretty good day - went to the market and the dog park and out for lunch today, just him and I, as we'll be seeing Cam and James tomorrow to celebrate with them. After he'd opened his gifts today he got a furtive look and said " I'm just going downstairs for something" I knew exactly. He was going to look for the ( Christmas) present he'd got for me when he was out with Glyn. I told him I didn't need a present today - he didn't really grasp that, thinking that I should get one because he'd had presents. He's having a night out tonight with our dear friends, Bob and Donna. Bob is in a community band, and it's their end of year performance tonight, so Ron will sit with Donna and enjoy the show. I was intending to go to the Tai Chi Christmas party, but am battling with a migraine headache so decided to have a quiet evening at home.

I'm trying to be organized cooking meals ahead of time so it will be easier after having the foot surgery. We're having a non traditional Christmas this year, finally, I get my way, an Arbutus branch in a pot with the wire and beaded African ornaments, and the decision has been made for Moroccan Lamb in the crock for Christmas supper. Since the kids will be in charge, this is more straight forward than the traditional turkey meal.

Not much news to report, it's been pretty cold and grey here, and I've been very low on energy. The instructor at curves was saying to me that these days, no matter how much one eats fruit and veg, the nutrition in them isn't what it used to be in the past, so a multi vitiman is important. So for the first time in my life I went and got a bottle, which include Vit D to make up for the lack of sunshine at the moment. Hopefully I'll feel more up to snuff as it all hits my system.

Mz Marpole

2009-11-20T20:39:00.000-08:00

That's me!! Because Ron has difficulty with remembering words, I am finding more and more I have to try to figure out what exactly he's trying to say to me. I'll give a couple of examples. The other morning he was looking v lost in the bathroom, opening drawers, cupboards.. so I said what are you looking for? He said " my.. my... tong." Tong, was it tweezers, scissors? Tong? So I said what's it for? He lifted his arm and looked at his armpit. Ha, deodorant? Yes! Then he'd been out with the caregiver, Cecil, so I asked what he'd had for lunch. "Indian" I knew the Spice Shack had closed so asked where it was. He said, " there on the corner" So I said, can you tell me more? " There on the corner where the big pink things are where the rich people go" Dang. But I figured it out... he meant Berkie's Corner, a turning circle with a little clutch of shops, where there is a large pink house ( East Indian family) across the soccer field. Today I'd been out, and he said, did you see the ....I knew he meant the rainbow, but waited, and waited... he didn't mention colours, or sky or anything, he just had no words, so eventually I said, you mean the rainbow? It was lovely, wasn't it! I felt so sad. To not know a rainbow's name, it's so very sad. Awful disease.

I am slated to get the bunion surgery just before Christmas. Thankfully for the first 9 days, Matt will be home for the running errands, but I will be counting heavily on my friends for visits and help. I am told the first 3 or so days it's basically either in bed or hobbling to the loo, after that 6-8 weeks recovery with crutches... and with it being winter it's hard to get out with only a woolly sock pulled over the cast, so I will be pretty house bound, and, as they say in Canada, suffering from cabin fever. It will not be easy to manage, Ron can't even make coffee, has trouble serving himself food, etc, but I'll muddle through. Think I'll look into getting someone to help a bit with the housework. I am actually pleased that this will happen in the winter, it's not so bad to be confined to barracks when it's miserable out. That way, too, the kids will have to look after Christmas, which, we've decided, will be a Moroccan Lamb in the crock rather than the traditional fare. Finally, I've also got my wish for a non traditional tree, which will be an arbutus branch sprayed black, with my lovely beaded African ornaments. Step aside, Martha S!!

Home from Halifax

2009-11-01T15:43:00.000-08:00

Peggy's cove

Ron and Matt, at a coffee shop at Peggy's Cove - Expresso on the Deck

Nova Scotia Fall colours

Matt, the photographer

After our pub lunch, Mahone Bay

Well, we made it, there and back. Whew, Canada is far too huge a country in my opinion, it takes forever to get across it, it's actually quicker to go to Europe than to get to the opposite coast. It was lovely to see Matt, and his room and studio space - he's happily settled there and working very hard at his course. I am pleased that we did it, though it isn't easy traveling with Ron - he is so very unaware so I was always having to watch out for him. There is also the language problem, his vocab is so reduced now, and his memory is so poor, he hardly talks, and things like ordering at a coffee shop are a problem - it's difficult to have to be taking over more and more for him. Not unexpectedly, but sadly, he made no attempt at all to talk to Matt, not even one question in the 4 days, all the conversation was between Matt and I, with Matt maybe asking Ron a few things, but no back and forth conversation. They were understanding at AC and it was good to board early, and in fact the security stations were quiet so it went smoothly. It was a very good idea on my part to stay in the self catering unit, made it so easy for morning tea etc, and also I was able to take the couple of meals from here to serve to Matt, which he really enjoyed. The trip cemented in my mind that the days of traveling for fun or holiday with Ron are over, the only reason to take him anywhere would be to see family.

Other news, the Olympic torch passed though Duncan yesterday, and Ron's choir sang a couple of songs as part of the ceremonies. He was very happy to receive a pair of red Olympic mittens for the occasion. That will be the extent of our involvement in the games, it was well supported but I find all the speeches by countless dignitaries a bit tiresome.

angel

2009-10-22T12:48:00.000-07:00

There is an angel in this world, his name is Glyn.

Up and away!

2009-10-21T19:57:00.000-07:00

The bags are - somewhat- packed, ready for our long weekend to Halifax to see Matt. Would you believe, it's cheaper, and quicker, to fly into Europe, than to go to the opposite side of Canada! Because we're within the country, I've made up a Vij's chicken curry( the Vancouverites will know it) and a babotie ( the South Africans will know it) which are both frozen, and will go in the checked bags, to allow me to feed Matt a couple of home cooked meals there, without the hassle of cooking. It's also a lot cheaper and less stressful than eating out each evening. I hear from Matt that we timed it well, he's just completed some mid terms and assignments this week, so will have time to spend with us over the weekend. I am so excited, though have been sick all week and am still feeling the throat and ears lingering as I type this.

What news of Ron? Not a lot to say, just sometimes now, it's quite desperate, his confusion. I asked if he would carry the chairs down from the deck to the storage, which we do each year, and he kept trying to go downstairs, sans chairs, and I kept calling him back, saying "You need to take the chairs Ron", and he was getting exaspirated with me, saying, " I know, I know!" but still heading downstairs without them - he knew he had to go down for something, but it didn't penetrate what... then also forgetting common words, like for keys, saying " I can't find the things for my pocket" His world is getting smaller, it's hard to keep mine broad without the guilt.

thee beauties

2009-10-09T13:51:00.000-07:00

our gorgeous view

beautiful Mr B, our handsome lad

the v fine new front door

Cruise photos and update

2009-10-05T07:12:00.001-07:00

Ron's brother, Barry, and his family

Marnie, Dave and Self

Ron and Barry

Mom Jarvis, Ron and Barry

Dave on the lido deck

I had not been very organized with taking photos on the trip so it was nice to get some from my sister-in-law to post on the site. See how handsome is our Dave, still single!

Not a whole lot of news or changes here. The two choirs that Ron is part of have re-started for the fall, so he's busy on Monday and Wednesday evenings and seems to be enjoying it. He is dedicated and practices quite a bit - I think Glyn put the music on the computer for him so he can play it and sing along.

It was a good idea to get the dog, even though he can be a pain with his demands for walking. Ron enjoys taking him out, and talks to him, and knows the neighbourhood very well, so doesn't get lost around here. Quite often we just do a little nip into town to take Mr B to the dog park, it makes for a nice outing and I feel we should be making the most of this glorious weather while it's with us.

I'm back at the daycare, and trying to go every day, so with that, and the transcribing work, the stuff around the house, and also a project of getting a lot of bibs sewn for the kids, I am kept out of mischief. Ron now has caregivers from home support on Mondays and Wednesdays, and then Tues and sometimes Thursdays he's with Glyn, so he is kept busy, though I do wish there could be more of a role for him in the community.

I am very much looking forward to our short visit with Matt in Halifax, just a long weekend really. Air Canada points were about to get lost, so I made the decision to take Ron there - I was advised by a friend to get a wheelchair, physically Ron is very able, but the whole security process is very stressful and difficult, so this way we will be slid through pretty smoothly. He was ok with this, he knows that he has a great deal of trouble with the security, and you don't want to mess around with those people! He can't manage to follow their instructions, like he'll try and carry the bag himself, or walk through before he's told, and he couldn't understand to keep his arms up while being searched etc. This time I will double check his hand luggage to see he hasn't sneaked in a water bottle, or pen knife, like what happened the last two times! Probably I'll take a pre-emptive Ativan too. I have booked into a holiday appartment, right on the harbour walk, and it actually was hardly more expensive than a simple hotel room, so it should be very fine.

I keep up with all my dear friends, thank heavens for them, because there is so very little conversation around here, I need to connect with people. Also, I so appreciate the times I live in, I can be in touch with people all over the world on the Facebook, I listen to many BBC radio programs on the ipod, and enjoy watching the telly with no guilt ( Ron spends each evening watching his space channel shows till all hours, I'm relegated to the small screen in the kitchen!). Thank heavens for technology, it stops a person from being isolated.

Cam and James are home, we saw them briefly, they had a wonderful time seeing family in the UK.

Thank you to my very dear 6 followers, how exciting! Others please sign up, you need to be signed in with a google account, but many of you are anyway, very easy to follow the steps, and they won't bother you with my updates or anything. It encourages me to see that people care.

Last vestiges of summer

2009-09-19T14:17:00.000-07:00

Well, we're into the fall now and making the most of these glorious warm days while they keep coming. This was with friends at the Averill Creek winery here in the valley - it's lovely, you can bring your own picnic lunch and enjoy their wine from the patio. A crowd this size is difficult for Ron, he is not able to follow the conversation too easily, and I was not overly pleased when there was some banging on about a new study that shows that exercise can grow your brain cells. I thought it pretty insensitive, to speak this way in front of him, and actually said, " well, Ron disproves that theory" There are very few people who exercise more vigorously or often than he does. He's getting in those last few times at the river before it's too cold.

Another loss this week, the caregiver mentioned to me that Ron is just not managing the debit card at all - so I had to have the conversation with him about putting it aside, I could make light of it and tell him he's moving to a cash only society, like Zimbabwe. My life seems a constant juggle of how much to allow him to do, ask him to do, when he so often can't manage. Today we were heading off to the market, and I realized there were no shopping bags in the car. So I asked him to get some out of the smart car to bring ( we were in the 4 runner, with Mr B for the dog park) so he right away went to the back of the 4 runner, the car we were in, to get the bags. So I said, no, they're in the smart car. So he walks right past the smart, into the house where he's gone for a good 5 min. I was pleased that he did actually come out with a bag, but the whole thing can be exasperating, and of course it's always easier to do things myself, but he does like to feel useful. I was patient and made no comment. I know these incidents seem small, but it's the fact that they are not isolated, there is never a time when he's "sharp" that makes it so hard.

I am delighted that I have booked to go to Halifax to see Matt in October, trading in AC points. Ron will be coming too, and I have learned I will take the Ativan before we go to the airport, as that security part is totally confusing for him, stressful for me. It's nice to have something to look forward to.

Quiet around here!

2009-09-07T19:26:00.000-07:00

A family picture taken the night before Matt left for Halifax.

The house feels very quiet and empty, Matt left for university yesterday, and Cammy and James left to go to the UK for three weeks today. We did have a wonderful long weekend all together, and I pulled out the tripod and camera and we had fun getting a timed shot of the whole family.

Become a Follower!

2009-09-02T19:24:00.000-07:00

I know there are some faithfuls out there who read this blog - I have now set up so that you can become a follower, though what exactly that means, I'm not sure, but it would mean a lot to me to see that the blog is actually read by someone! Follow the procedure, it's easier if you are already a google member.

Thanks so much for your support and care.
Anne

Good to be home

2009-08-26T10:28:00.000-07:00

Well, it's lovely to be home - the cruise was very difficult for Ron, my worst fears were realized as he was lost so much of the time and overwhelmed with everything that was happening and all the crowds of people on board. I think even being part of the family group of 9 people was too much for him - he didn't say one full sentence all week, and was very withdrawn, I know he felt overlooked. Thank heavens Dave was on board, and took him hiking and cycling in a couple of the ports which he really enjoyed, he's so much better doing something with just one person. On the way home on the ferry he told me he had not enjoyed it and didn't want to go again. I can fully understand that, in fact for me it was really obvious, being with him 24 hours a day, on that ship, just how compromised he is. It hit me hard that I am watching someone dying, his brain is dying, and that was very difficult for me. Stresses had built up over the week and on the way home on BC ferries I found myself crying. Ron reached out and touched my arm, not saying anything, but the gesture was lovely and upset me further because I know there will be a day when I am crying and he won't notice. I feel like doors are being shut and our lives are becoming more restricted and activities more limited. I need to remind myself it won't be forever...

Matt leaves for Halifax in a couple of weeks, and since we had Air Canada points that were going to be lost if we didn't use them, I decided to redeem some to take Ron to Halifax for a long weekend late October. As Matt's course is two years it's important for him to connect with his dad as much as we can manage over that time - who knows how Ron will be when the two years is up? I am looking into renting a holiday apartment for the time, it's easier for Ron than a hotel, and we'll have our own little kitchen and living space.

I think we're just going to lay low for a while, Ron was completely drained after the trip - I even turned down an invitation to go with dear friends to Merritt, as he just wanted to be home. It's lovely right now on Vancouver Island so we'll enjoy some river or lake trips and just pottering around here.

Off to Alaska

2009-08-15T07:10:00.000-07:00

Well, we leave this morning for a cruise to Alaska with Ron's family, though unfortunately it was scheduled at a time when Cam, Matt and James are not able to join us. I look forward to the days with no cooking, cleaning or house painting, but feel stressed already as we're to be on a massive ship, so Ron will be confused and get lost. I had felt strongly that we should be on a ship that he at least was familiar with the lay out - he'd worked a number of years with Holland America line, so was at home in their smaller class of ship, but the sailing dates didn't suit Ron's brother's family, so that was overruled. In some ways, it's easier to just be at home. As Lindy remarked,( when he got lost on BC Ferries, even the smallest!) he's WAY better in his home environment.

The last days have been a bit rough, regarding communication problems. There have been a number of instances where Ron has not understood words that I've used. For example, he was looking for the powder for the dog's paw, and I told him it was on the window sill, he just didn't know what a window sill was. Then he'd lost his wallet and went out with the carer. I found the wallet and phoned to let them know, so they turned around and came back. I was painting, so had left it by the front door, but Ron came in the garage way. I shouted up it was by the front door, and some minutes later he was still looking, I went up and he was in the garage... I told him again it's by the front door, and he said " How am I supposed to know which one is the front door?" Oh dear! It's a continual balance between doing everything myself, or letting him be involved and often not managing simple things. He wants to be useful, but needs very simple, and clear directions, and even then can forget, or not manage the task. Then there's also the problem of him being aware that he's not managing. I was so touched by Lindy's words, after two weeks with us - " You're so good with him, Anne, you're doing so well." Made my year!

Summer Sweltering

2009-07-30T11:38:00.000-07:00

Ron and Mr B at the river

Cam and James outside their cute new house

Matty

Lovely Lindy

Ron, Dave and self on Pender Island

I don't imagine hell could be much hotter, it is blazing here, and has been for 6 days. The only cool place to escape to has been the cinema, so we've been to two matinees this week. We had a fantastic visit with my sister, Lindy, who had two glorious weeks with us. I took Ron and Lindy over to Pender island for a mini break - stayed in a beautiful old farmhouse bed and breakfast, and really enjoyed the relaxed pace of life and divine breakfasts served there. It's called the Corbett House Bed and Breakfast, and comes highly recommended by all of us. We met Dave there, so it was a great break.

Barkley is settling in well and is a great character and faithful pet. Ron loves walking him, or just brushing and petting him, and Barkley is so affectionate with all of us. He's a clever dog and already knows which is our house and turns into our drive which will be a help with Ron.

I know things are progressing along with this nasty Alzheimer's - quite often now it is hard to get the gist of what Ron is saying - especially if it is more than one sentence. He is also quite confused with everyday simple stuff - sometimes we get to the car and he just stands there, I have to tell him to get in, or he'll forget to close the door when he's got out, these things seem to me to be automatic, so it's scary that he is confused about them. We ate out at an Asian restaurant with Lindy - it was the arrangement where there were communal dishes and we each had our empty plate to serve to - that was too confusing for Ron, he kept eating directly from the communal plate, though we'd help serve him some in his own. Then he was leaving his own food for the rest of us to have some as he said he didn't want to be greedy and eat that. Lindy noticed quite a change from when she last saw him in October 07. I am still so grateful that his personality hasn't changed, and he's easy going and calm and fits in with the day's activities very well.

New dog!

2009-07-06T12:47:00.000-07:00

Barkley, who can resist a dog with a name like that?

Well, I gave in! Ron had been wanting a new dog ever since Patches died last year - so I went to the SPCA in Nanaimo after having seen Barkley on line. He's an 8 year old, collie x chow, so medium sized, and perfect for our needs as I really didn't want a commitment of 10 years or so. The major concern is that he is terribly overweight, and a bit of an old crock, slow to get up, slow moving, but otherwise the vet said he is in good health. He is on a strict regime of dieting and exercise and hopefully this will be a whole new life for him here. Either that, or he'll just enjoy his last days in our Happy Tails retirement home on Chippewa road. He is so sweet natured and friendly, adores us already and is very controlled around Pebbles, the cat.

I had a wonderful week long visit with my mum for her 80th birthday. She so enjoyed having me and I was able to sort out drawers and cupboards with her, and just enjoy lots of tea drinking and talking. Though it was such a long way to go for so short a time, I am very happy I did it.

Ron is enjoying the summer, and the river and lake trips. I am increasingly concerned about his ability to communicate, and words that seem to me to be common, he doesn't remember at all. It was 'door' last night he didn't know, and then the other day he said " Do the mites worry you?" So I really didn't know what he meant, I guessed fleas, so asked if it was on the dog, and he said no, they have legs... somehow, I guessed rightly, he was meaning ants, as there had been one or two come into the house lately, so I was able to tell him that they were ok, they always come this time of year.

For nearly two weeks now, I've stopped taking any pills at all for my headaches, and am managing ok, but am using my lovely hot pad quite a lot. I really felt I was taking way too much medication, and felt if I stop altogether the head might ease on it's own, and I think it is a bit better. I manage anyway. I've also been very busy re-painting quite a number of rooms in the house, it is rewarding and affirming to do jobs like this, and would have cost a lot to get someone else to do it.

My younger sister, Lindy, arrives this time next week for two weeks here with us. I am so delighted, and have booked for us and Ron to go for three days to a farmhouse Bed and Breakfast on Pender Island. What a treat!

Safely home

2009-06-16T07:22:00.000-07:00

It was a marathon journey home to South Africa, long flights and delays- one leg actually took me 27 1/2 hours door-to-door! I so enjoyed a week with my mum and was able to help her do a lot of sorting out of her stuff, take her for lunches and coffees and bra shopping too! The 80th birthday celebration went off very well - myself and my sister, Janet, having to give short speeches which thankfully, was mainly reading out greetings. A high point of the trip was a meal out at the new restaurant, Deeson's, in Canterbury, owned by my cousin and her husband.

All seemed fine back here at home- Matt very capably making some quite complicated meals like Cuban stringy beef. Ron has swum at the river a few times though unfortunately the carers from Home support are not insured to take him there.

My veggie pots are doing well and we've been thrilled to have a few salads from the home grown leaves, what a joy. Gem squash seeds from South Africa were planted yesterday, and that will be a complete treat for me if we are able to get some squash.

Not a lot planned for this summer, Matt starts the life guarding this week and won't be able to get away at all, nor will Cam and James, so I think we'll stay around here. A highlight will be a two week visit in July from my sister, Lindy.

Mum's birthday

2009-05-27T07:15:00.000-07:00

My mum is turning 80 on June 1, and Matt has been great and is willing to be here with Ron so that I can get away and have a week in South Africa to be with her on her big day, and her birthday lunch the following Saturday. I go through the UK and will visit Lindy and my uncle and aunt, Brian and Mandy, on the way home. A big treat will be enjoying the delights of the new family restaurant, Deeson's, in Canterbury, owned by their daughter and son-in-law. I'll be away just over 2 weeks - going to South Africa is such a long journey, it is not really feasible to go for less. I have made plans to increase the time with home support services, and they are able to step in if Matt is called in to work or has other commitments.

Ron enjoys this time of year and is looking forward to swimming in the lakes or rivers, his favourite thing to do. He has been pretty confused lately, not knowing what is happening, and yesterday, my heart sank, his shirt was on backwards when he came home with Glyn. It's funny how one adjusts to the new reality - and I inately understand his limitations, and also what he's trying to communicate even when the words are muddled. It certainly brings out the protective nature I have, and it's very seldom I am annoyed. I feel sad, and alone, and helpless, but not often irritated, though that may come! Ron doesn't have a clear insight into what is happening to him, and is consequently quite peaceful, which is such a blessing.

Cam and James have moved to a dear little yellow house in Duncan - it is lovely to have them closer by for now. It will be nice for Ron to visit there from time to time.

2009-05-02T15:19:00.000-07:00

A friend wrote lately to me that she never knew if it was good news or bad news if I had not updated the blog for a while - probably it's more disorganization! If it was bad news, I wouldn't wait a long time. This time it's more really that not much is new.

The month ended beautifully with a couple of nights in Seattle with my dear auntie, my dad's sister, Ruth, who lives in LA. It is lovely to have someone so closely related on the same continent, and I wish we could connect more. Though I only really had a full day with her, it was a wonderful break. My treat, of course, is a shopping trip to Trader Joe's to get all the favourites.

Small things happen with Ron which are worrying - a couple of times he's left the door to the outside wide open, with keys still in it. I have been encouraging him to use the garage door coded key pad - possibly it's hard for him to remember, but it's not ideal to have our security so compromised, as the open door, and keys are easily seen from the road, as they're at the side of the garage, he won't use the front door as the lock is very sticky. If we'd been in SA we'd for sure have been cleaned out, if not murdered by now, thankfully we're in a safe neighbourhood. Then yesterday I found he'd put the full envelope of house insurance renewal papers in the recycling, which I discovered by chance, which scared me. The cat food tin had been opened, and a plastic lid put on and then it put back in the larder cupboard, so it was all grey and rotten and swelling the lid - all these little things are wearing, and it's hard to be pre-emptive and check on everything. It's more than just caring for his needs, it's sorting out this kind of complication and all the heavy responsibility that comes with only one person thinking clearly.

Home support services are more involved in our lives, for better or worse. Generally it is one man who sees Ron, and they get on well and Ron is comfortable with him. Sometimes, though, it has been someone different, and it doesn't go so well, one woman refused to take him out to help at the food bank, stating he was "too big to fit in her car" - the fit was on my part when I got home to learn this!

Anyway, Matt is now safely home from Thailand and it will be lovely to have some chatter in the house for a while.

Happiness

2009-04-06T17:11:00.000-07:00

I know the last post was sad. Yesterday I took Ron to Victoria in the afternoon to see "Duplicity" - a great distraction, not only the locales, but Clive Owen is totally divine. Anyway, we stopped on the way home at the Millstream Market and got elderflower juice and s&v crisps to tide us over till supper at home. Driving the Malahat highway, in my smart car, music playing and the glorious sunshine and yummies to consume, thoughts of Clive Owen and Ron beside me, I experienced a very unfamiliar feeling - pure happiness in the moment. It was heaven.

Two years today

2009-04-04T20:59:00.000-07:00

It's exactly two years ago today that we sat in Ron's colleague's office and learned that he is no longer to practice medicine. It was an awful time of so many uncertainties and so much pain. And neither of those have eased in any way with the passing of time, they are just different. For many reasons, this has been a particularly difficult week, I'm happy to be at the end of it and hope next one is better. Ron goes to his family on Wednesday for Passover, I'll stay here as I have Tai Chi on Weds and then on Thursday it's the fourth of a six session course I'm attending in Nanaimo on Dementia and Grief. The course has been helpful - last week I learned that it actually is theraputic and part of the healing to feel sorry for one's self, to grieve what is lost, to be sad about what's happening. I'd always kept saying to myself to pull myself together and not go there, that it would be negative and unhelpful. The very hard thing is that the spouse with the diagnosis has little or no insight, so can't help with the pain, like would usually be the case, so it is very solitary. I had a good cry in the bath, and hopefully I'll feel better for it, though not right yet.

gizmos and grieving

2009-03-13T12:23:00.000-07:00

Well, sometimes I am so very grateful to be living in these times. I got Ron a fantastic new cell phone a couple of days ago - it has only four buttons each linked to a pre-programmed number, so it's very simple to use. For a long time now he's had considerable difficulty using the cell phone, whether accessing of the phonebook feature, or dialing the numbers, both were too complicated. Then the phone got lost anyway, and so it was a good reason to sell him on this simpler version. Thankfully he didn't argue, and it's not too juvenile looking, so he's actually quite pleased with it. I also got Dave to sort out a timer on the pannini maker plug, as after 4 times of it being left on, I realized it was a problem - so now that plug only functions from 12-2pm anyway, so problem solved!

I have signed up for a 6 week workshop on Dementia and Grief in Nanaimo and had the first session yesterday. I learned that with every loss (and they are countless) there is grief, so I am going to be in the grieving process for a very long time. I know I try and keep busy and not address my emotions much, for fear of falling apart and not coping. Perhaps this course will help me work through things a bit better. My spirits lifted when I saw two people who were about 60, as opposed to late 70's or 80's - but then sank when I found out they were actually caring for parents, rather than spouses. Seems like Ron is the only one in all of BC with this at such a young age!

He had a doctor's appointment this week, just a general one, and she said to me afterwards that there is a marked deterioration, especially with language. This I knew, but it's hard still to have it confirmed by a professional. Still he has little, if any insight into the condition and feels he's pretty good. Indeed, he managed pretty well with the choir performance last weekend, though I learned afterwards, the director had to mouth each word for him and he watched her so intently that a number of audience members had thought he was blind. He does tend to have a blank or unengaged look about him now. It's kind of hard to come to terms with the fact that to people he "doesn't look quite right", though that may make them more understanding when he has difficulties.

I have a little mini break coming up - four nights with a very dear friend in North Carolina. I've increased the home support hours and sorted with the kids and Ron's mum to have him. Just need to get rid of this headache now to really enjoy it.

Happy at home

2009-02-22T08:47:00.000-08:00

Well, we survived Vegas. I think I was mad to book, it is a very stimulating and busy place to go, and in fact, when we were there it was chillsome, being 10 degrees, as opposed to the 22 on the day I'd actually booked the package! It was good, though, to have a distraction in the middle of the winter, and we enjoyed a lot of walking outdoors. My favourite American shop is Trader Joe's, and having researched on line prior to leaving, knew of one in the vacinity. Turned out it was a 12 km walk! But quite interesting to walk through the neighbourhoods and see that within a couple of blocks off the "strip" the housing was quite dire and seedy, run down with dusty front lawns, broken plastic chairs etc, all so close to this incredible opulance and over- consumption on the strip. Clearly little of the money pouring in is filtering to the local communities for parks and schools, which is very depressing. Someone is doing well out of it all, and it isn't the locals. We did have an incident at the hotel which was unsettling, Ron went to check if the pool was open, and then didn't remember our room number ( 1959, an easy one to remember - which I'd tested him on before) anyway, he went up and down the hall with the key, trying it in every door. Of course security was called and I am assuming they realized he has a problem and they were able to escort him to the correct room after contacting front office. I had been getting progressively more worried in the room but had thought the best was to stay put.

But it's way easier to be home, to eat and drink when we want and keep ourselves busy with the ususal life. Ron went again on Weds to the food bank with Cecil, but I hear had difficulty, even with an attendant, and they only want them once a month to do a specific job. So now I'm faced with what can fill his time the other Wednesdays.

On Friday at our gym there was a blood pressure clinic, and I had mine taken ( was excellent), and learned for the first time what those two numbers are. Anyway, then I picked up R where I'd left him to have coffee, and told him about this. I asked him to guess what my BP was - having practiced medicine for so many years, I thought he'd be interested. Anyway, he was hesitant, but finally said "sixty". I said, "It's two numbers you need, Ron" So he said, " yes, six - zero" I felt ill when I realized this was lost, one of the basics of medical practice.

This is my only written record of these times, so that's why I write down these little things that happen, so I can keep a note of this journey. I do hope, dear friends, that you don't feel I'm forever dwelling on the shortfalls. I certainly appreciate all Ron is able to manage and value that he is calm and gentle and much the same person.... though the losses are so very saddening.

Crazy?

2009-02-08T16:42:00.000-08:00

I wonder if I am!! Ron and I will be leaving on a three day trip to Las Vegas on Tuesday. It was during the worst of the fog, damp and cold that I felt I wanted to get somewhere warm and bright. Financial concerns limited me, Cuba or a cruise somewhere warm would have been first choice, but they had good deals on for Vegas, so I decided to go for it. I woke in a cold sweat the night after booking, thinking "What have I done?" then I thought, no, I can cope, it's only three days. Traveling with Ron through the airport security and in busy situations is very stressful and can negate the purpose of taking the break, which would be to relax. Anyway, I know he'll enjoy the hotel and the pool, we're at the Paris hotel, fake Eiffel tower and all, and when we're walking around I'll just have to be very vigilant not to lose him.

I was thrilled to find my old immersion heater, so have packed mugs and we can make tea in the room, and also will have cereal for breakfast - hopefully a litre of milk will fit in the mini bar. I'm hopeful it won't be too busy there and we'll be able to pick up reduced tickets to a show as well. If nothing else, the fountains at the Bellagio were fantastic and they're just over the road from the Paris hotel. It truly is an outrageous town, not real life at all, in fact, last time I found it desperately sad under that glitzy exterior, seeing these old ones hunched over the slot machines at all hours. Have no fear, we don't gamble at all, I don't think I've ever spent a dollar gambling or on a lottery ticket so there are no worries of losing the life savings!

Photos

2009-01-29T09:16:00.000-08:00

With my dear friend, Jane

Ron, Cam, James and self

R and I at Cowichan Bay

Eyeing the goodies at Murchies in Victoria

Moving on...

2009-01-25T12:19:00.000-08:00

Well, a few more steps are taken on this journey. Home support services are now involved in our lives. Thankfully, because of Ron's age and circumstances, there is some flexibility, and we have permission for them to take Ron out and about. The plan for now is for him to go each Wednesday with a caregiver to volunteer at the local food bank. I do so hope that he finds it enjoyable and is keen to go, then hopefully we can look at increasing this to twice a week.

Last week was a very special one - a dear childhood friend, Jane, came here and we had a wonderful week full of food, laughter, chat and gadding about. It made me realize that there is an extra difficulty here for me, I don't have old childhood friends or family close at hand, right at the time when it would be fantastic to have their support. Except for sweet Lisa, but it's a 5 hr trip to her.

Ron's language continues to be my biggest concern. One night when Jane was here, she and I were watching the TV downstairs. Clearly the noise bothered Ron and he came in quite crossly and closed both doors. I went to him later and said " Are you cross about something? You seemed angry when you closed the doors?" He replied - " I had to open the window because of the noise" Then last night he said - exact words - " I re-inscovered my facey" Me - " What are you trying to say?" R - "I don't remember what I said" Me- " You said you re-inscovered your facey" R - " Yes, my grey facey" while rubbing his legs. I realized it was clothing, figured out it was his fleece hoody, and of course the re-inscovered was supposed to be re-discovered, or more accurately, found. So there's me being Miss Marple again. This scares me so much I don't like to think about it.... what to do when he can't communicate? It is very, very hard to live through this, the witnessing of his brilliant mind shutting down, and even simple language being lost into confusion.

I know I must enjoy each moment, and for now, Ron's gone 3 nights to his mum's and I've got a whole lot of friends coming for dinner tomorrow night, and then we'll go on to the movie, the Duchess. So I better go and get started on that veggie curry.

A New Year Begins

2009-01-02T14:59:00.000-08:00

Well, this is how our view looks at the start of 2009 - a clear, bright and beautiful outlook - let's hope the year is much the same.

We had to say goodbye to our lovely Matt as he's off to study in Thailand, just outside Bangkok, which has not been without it's troubles either! I hear via email, after a grueling journey, one flight over 20 hours, that he arrived safely but his bag is lost somewhere between here and there. Hopefully it will materialize soon. Thank heavens he listened to me - against his wishes - and put his good camera in his hand luggage, he was all for checking it because of the weight.

I had a wonderful short break with the family in UK. Here is self and my two sisters, Lindy and Janet, about to go into London for a day out to celebrate Janet's 50th. A bit of shopping, lunch out and the show Chicago, it was a fantastic day.

The kids, particularly Cam and James, were fantastic with watching out for Ron and being with him while I was gone. They had a good Christmas with dear friends in Victoria - that was the one day when traveling was possible, by all accounts, the snow was relentless for the duration of my stay in England. I hear that Ron was quite chatty but very confused. I think it was quite a reality check for the kids to spend the block of time with him - they understand better now what it's like to be with him all the time.

A "first" I noticed upon return, that had never happened before, R didn't understand a word - I asked him to please get a gift bag from the wrapping paper cupboard, but he had absolutely no idea what a gift bag was. Until this point he has only had trouble remembering the words, not with word recognition. For example, talking of his bicycle yesterday, he said he couldn't find the pusher thing ( the pump, I worked out) and talked about the spinners being loose ( the pedals)
Cam was alarmed one day he was unpacking the mugs, not into the empty cupboard, but put on top, right up there by the ceiling.

Another first this new year will be the involvement of home support services. I went though the lengthy registration process early last month. The plan is for Ron to be taken out and about with someone, it's important right now to keep him communicating and engaged, and hopefully this will help. Anyone who's been through this will know that as a spouse, this is a difficult step as it formalizes that more care is necessary. To think he was practicing medicine a couple of years ago, it is very upsetting to compare how he was then to now.

Communication problems

2008-12-05T06:51:00.001-08:00

Lately there have been times when it has become clear that Ron has trouble with his language. To me, the main objective of any therapies or activities would be to maintain his ability to communicate for as long as possible. I feel the problems are a combination of two things... his loss of some words, particularly nouns, -fairly common objects( like the words glasses, dish liquid) and his general confusion over the thread of a conversation.

I will transcribe a recent conversation to illustrate the kind of confusion he has. The kids were all home for the weekend, so I'd made the effort and cooked blueberry pancakes for breakfast. After that I was driving in the car with Ron and was happy to hear him say " That was a nice breakfast" I replied " Yes, I felt with every one here, I should cook something" He said " What did you have to cook?" Me - " The pancakes for breakfast" to which he said " But I've already had breakfast" When I related this conversation to a friend, she observed it's like he's got this beaded necklace, and the thread is broken but the little beads are still intact. I thought this was a fantastic way of describing it.

So often people meet Ron and tell me he seems fine - that they wouldn't know there's a problem. A couple of nights ago we had some of my mum's cousins and an ex-colleague of Ron's over for supper. They commented exactly this to me, but after they'd left, Ron could only name 2 of the 5 people he'd spent the whole evening with. I hadn't pressed him on this, he was trying to remember himself.

Today Ron turns 54 - we're going out for supper with some good friends, which will be lovely.

I leave just before Christmas to have 9 days with family in the UK. It will be so lovely to see my mum and sisters over that time... Ron will be here with the children who all have some time off and are more than capable of looking after their dad for a time. They'll have Christmas lunch with very dear friends in Victoria.

We're still here!

2008-11-19T16:55:00.000-08:00

Plodding on with life! Had a lovely weekend last weekend, a visit with Ron's mum, then on for a night with Lisa and Stef in Abbotsford and a night in Chilliwack with old friends, Richard and Ling. It was lovely to have time away and visit with good friends. Enjoyed excellent company and exceptional food!

Well, the question I have is where does the money disappear to? I had a shock yesterday, meeting with my advisor - here I've been so careful, every month, to put away $1000 and I see it's all vanished into the vapours! I'm down now, to less than the initial savings I'd been adding it all to. Well, we're all in the same boat, and here in Canada our sturdy little Economic Tug seems to be chained to the Titanic. Anyway, it was all enough for my resolve and I've now sold off half of all the higher exposure mutual funds in our RRSP and switched to cash. Right now a 3% return sounds brilliant. Probably I'm sleeping better at night than that lot from GM. I just saw on the BBC that they were asked to raise their hands if they would sell their private jet right away that they'd flown to Washington in, and return economy class, and of course none of them did!

I have so much to be thankful for, and times like this make one realize just how blessed we are. I leave now to do nice roast butternut squash and chicken for supper.

Rough times

2008-10-11T17:27:00.000-07:00

Well, we're all in it together, these turbulent financial times - a worry when we have a fixed income and it's all dependent on Sun Life financial doing ok. I know it doesn't help to be thinking about it but somehow in those early morning hours when I can't sleep it's very much on my mind. I had just been feeling like I was coping ok with R and his problems, and now this...

Ron has his ups and downs too - sometimes I am gobsmacked by the confusion he displays. The other day someone called for me ( I was resting, mid afternoon, having had one of those nights) Anyway, Cammy was in, and after answering the phone, Ron looked confused and asked Cam, " Is Anne here? I thought she was dead." Poor Cam was so taken aback she didn't know what to say. It was only days later I realized he was thinking of Anne Muller, a good friend who died in 2001, but why he thought the person on the phone wanted her, not me, is a mystery. He's enjoying having the new pool open - there's a lovely lengths pool and hot tub, and for me, what's fantastic, is there are family change rooms, which I've told him he must use, as that way I can walk in and call for him, whereas if he's in the men's that's not possible. He has been rebellious, though, and the last time went to the mens even though he knew I didn't want him to.

I've now started my volunteer work at the daycare - 1 1/2 - 3 year olds, so it's very busy and physical, and I'm enjoying it very much. It's good to get out and feel that I'm giving something back to the community in a small way. I go twice a week, for a few hours, I am not able to get away for too long. Ron stays home alone, pottering... downloading music and anti viruses on the computer, or doing his nintendo. Somehow he doesn't notice many many hours passing, and will forget to eat or drink if I'm not around. Sadly, I am never one to forget to eat!

Quiet round here

2008-09-09T13:49:00.000-07:00

With Matt back at UVic, it's been pretty quiet round here lately, as he's not come home for the last couple of weekends. He has a position as residence supervisor, so has to work some weekends.

The job at the gym all fell through as the place went under, within a couple of weeks of myself being hired! So much for that idea... anyway, I decided to do something to give back to the community, I will be volunteering a couple of mornings a week at a wonderful childcare place which takes in children of teens trying to finish their high school courses. The facility looks very well run and equipped, and the staff are lovely, caring people, so I'm looking forward to some time will little people again. It suits me well as I won't have to leave Ron too long to do this, and being a volunteer position it's fine to miss for appointments or if we're on the mainland or something.

There is no news really to report with Ron... he did attend a local choir last night, and really enjoyed it. I was pleased to see there were a couple of people that know him there, so it's a wonderful help, as I will leave and he'll be able to get a ride home. That will happen every Monday evening. Other than that, he's looking forward to the new pool opening in town, and will enjoy getting back to the length swimming there. I am hoping something will work out for him to do on a regular basis during the week, it's not great having him at home all the time with me, it would be better if he were more engaged. Perhaps the time is not too far away when I'll have to pay someone to take him out and about in the community, shopping, to mini golf, out for coffee, etc. All these steps requiring further care are quite big milestones and I know I have a hesitancy about moving on to the next stage.

Good times ( and a bit bad too)

2008-08-18T07:45:00.000-07:00

These pics were taken by my dear friend Thanya, at the mirmiba show, unfortunately there isn't one of Cam and James, but you can see how gorgeous my boys are.

Well, we had a wonderful visit with Ruth and Roger, my aunt and uncle who live south of LA. They have a gorgeous second home in Mammoth, a ski resort 6 hours drive inland, and we went there with them. It was lovely to hike, relax and shop a bit. Roger was just fantastic with Ron, taking him biking, horse riding and even boogie boarding when we were in LA. It was lovely for me to know he was being well cared for and having such a good time. Their kindness meant so very much to me. It was also important for me to hear from Ruth that she sees that Ron has deteriorated in the last year, that it really is a huge challenge for me to manage him and that I'm doing a good job. Sometimes I feel I should not be finding it as difficult and as stressful as I do. Ruth noticed how confused he was, how unaware of what is happening, his problems with word finding, and indeed his lack of talking and engagement - so it really helped for another adult to be understanding of my situation. I feel that people who see him briefly don't really grasp the effect of the disease on him. The airport security situation was again a nightmare, with Ron having sneaked his penknife ( on the way there) and a bottle of water ( on the way back) into his hand luggage. This meant he needed a body search, and he had huge difficulty following the instructions ( eg turn around with arms up, don't touch your pocket... etc) I will just take an ativan before the security next time, as those people are so on edge and tense anyway, and if they feel he is hiding something, or unco-operative, it could be awful. An concrete example of his type of confusion would be when we got back to his mum's with our suitcases, I caught him with his case open, and about to take off his shirt. I asked what he's doing, and he said " I have to change my clothes for tomorrow" - ie, he wanted to put on tomorrow's clothes today! Oh dear!

I had a lovely birthday this past weekend, and all the family were together. On Sat night we went to an outdoor Zimbabwian mirimba performance which was just fantastic, with as all dancing and having a great time. It was lovely that it worked for all ages, even Matt, who would tend toward DJ music and raves, had a blast. I'll try and add some pics, but don't have the holiday ones yet.

Summer trip

2008-07-23T10:27:00.000-07:00

We're just back from a 4 day trip to the interior of BC to stay at a beautiful lake house in Merrit. Our good friends, Stef and Lisa have just finished having it built, and it was such a treat to be able to go there and relax. Ron loved swimming in the lake, he amazes us all how he can go well over an hour, flat out, and not freeze or get exhausted. My concern is that Ron is so quiet, he does come across as anti-social, to the point of sullenness. Thankfully friends understand, but it is difficult when he doesn't even thank them, or greet anyone in the morning. Matt was with us and loved wake boarding and trying out the windsurfer with the other teens that were there. For me it was a holiday just to read on the beach and enjoy adult company through the day. Good food and wine in the evenings also ensured a relaxing time. It was such a help to have Matt with us, to take turns with the driving, which always exhausts me. The interior of the province is so devastated by the pine beetle, great swathes of forest are dead, and the fire hazard has to be extreme. On the island, we don't realize the extent of the damage.

I will be taking Ron early in August to LA,( flying) where we'll stay with my aunt and uncle, and travel with them to their cabin at Mammoth ski resort. It will be lovely to hike and swim in the lakes, and see an area we haven' t visited before. I am so grateful for this kind of opportunity, it is by far the easiest for me to manage with Ron, and he enjoys swimming so much- it's just perfect. So that is all that's planned for the summer, it's otherwise lovely here in Duncan, I'm quite happy to stick around town.

Summer at last

2008-07-03T07:07:00.001-07:00

Summer hit Vancouver Island this week with glorious sunny days and the temp up to 35 degrees! Ron has been enjoying swimming at the lake and rivers - it always amazes me how well he is physically. He can swim, non stop, for over an hour - going way out into the lake. Long ago I gave up worrying about him, when the kids were little I always panicked that I'd be widowed!

I begin training on Friday with my new job at the ladie's gym that I attend. I am really looking forward to doing two or three shifts there a week, it will be good to get away from the house, be distracted and mix with other ladies. The shifts are short, about 4 hours, so Ron will be fine left here at home. I am also doing some work transcribing interviews for a friend - this can be done from home in my own time. I realized the biggest obstacle to painting is the isolation of it, I just can't face that right now, I need time with others.

I've had to become a Miss Marple as sometimes his speech is hard to make sense of - not the words as such, but just trying to get the gist of what he's trying to say. At least he's still talking, though he has really become so quiet. With Matt around the house for the summer it's lovely to have some chatter and company.

Small changes

2008-06-09T08:20:00.000-07:00

I realized it's been a while since I wrote in this blog about how Ron is actually doing. I suppose when changes are gradual, it's not as obvious to me. Matthew is now home for the summer and he told me yesterday he's seen a deterioration in Ron. We chatted about the kinds of things that have been happening. Ron is more child -like than before, he's keen to see what's in the bags when I'm home from shopping, in case there's something nice to eat ( I always pick up something which is a treat for him) To me, he's eating strange combinations. This is an example, we had some lovely cranberry and apple bread. He spread one side with salsa, one side with apple and ginger chutney. Then on the sandwich was crabmeat and saurkraut. It did seem very odd to me but he ate it with relish. He also said the other day that he'd forgotten to drink all day - I always make him a coffee in the morning, but often it will be forgotten on the counter or microwave. Ron has also taken to wearing his ipod and singing very loudly when he runs, cycles etc, without worry what others may think. Matthew also remarked on his language, often now when he is talking it's hard to grasp what he's saying - though we manage, the word combinations are not correct, and his thoughts confused. The other day Dave was on the phone to him, and asked to talk to me. So Ron calls to me " Mum!" instead of Anne, obviously because Dave had asked to talk to Mum. Having spent time with Lindy, who has a 6 year old, I came away knowing that Cath, at 6 is functioning at a higher level in terms of general understanding of day to day stuff, than Ron is. Very often Ron has difficulty knowing what day it is, or what's happening, even if he's been told a few times.

Having said all this, I am feeling stronger, and well, and it's seems like a total miracle to wake up without a cracking headache ( that lasted 50 days) and I don't want that back. It's hard, but I know I mustn't get upset about these changes, absolutely heartbreaking as they are. It's a hard balance, and not easy to force oneself to become unfeeling ( by necessity) and not uncaring.

Back and Better!

2008-05-27T08:17:00.000-07:00

What joy now, for 4 days I have been without the headache. I now see for 50 days straight there were only two days when it was gone - so it is wonderful to feel so well and also be sleeping properly. I know the trip did me the world of good and I have returned refreshed and strong.

It was great to see family again, especially my sister, Lindy, and also have the time in Ireland with two good artist friends, Kaye and Sharron, from here. My very kind cousins Phillip and Libby let us use their family cottage at Portnoo, on the west coast, not too far from Donegal. It is the most peaceful and gentle place I know of and I felt so restored being there. The beaches in Ireland are so magnificent - a well kept secret. I will post pictures from the trip with this blog.

Ron had a good visit with his brother - they enjoyed some motor biking together - nice for Ron to be on a bike ( though as passenger) It was lovely to have him so well cared for while I was away. I could not have done it without the children who have been just fantastic with their dad.

So now we're settled into the summer and Ron will enjoy going to the lake to swim and I look forward to my after supper walks in the neighbourhood.

A beach in Ireland

Sharron and Kaye having picnic lunch
The Cottage at Portnoo

Lindy, Gordon, Caroline and Catherine
With Lindy outside Natural History Museum

Scan clear!

2008-04-24T08:02:00.001-07:00

I was happy to learn the CAT scan read normal, good news, but not so good is that the headache is still a constant and unwanted companion, every day now, for nearly a month. It is horrid to wake up to a cracking headache and have to take meds just to manage the day. I have been referred to a neurologist. Anyway, enough of that.

Otherwise life is going well - we had a good weekend in Vancouver with Ron's family for Passover - after a trying journey over ( nasty snow and me in the smart car, and R getting lost on the ferry) I had a lovely mini-break of a day with Lisa - so nice to have time with a friend and just the change of place. Ron enjoyed the day with his mum, they went out for a nice lunch in Steveston. The day prior, Monday, Dave took the day off and he, Ron and self went to Bellingham, mainly to visit Trader Joe's my favourite shop in the US - where I stocked up on all kinds of treats not available in Canada - some Chilli-lime cashew nuts, papaya and mango salsa, cilantro and jalapeno hummus, etc.

I've got to get the place sorted and packing done as I leave in a week for the trip to UK to see family and have the few days in Portnoo, Ireland. If the fresh air and calming green of Ireland can't take away this headache then I don't know what will. Ron is looking forward to a visit with his brother, Barry and family in Eugene. The logistics of getting him there and back are quite a hassle ( for poor Cammy, who has more than enough to deal with right now)

I will hopefully get a chance to update this blog from the UK, however, when I tried from Vancouver, the site said my email address was invalid. This computer at home logs in automatically - but I will try.

CAT scan tomorrow

2008-04-14T07:44:00.000-07:00

But this time it's for me. It's now 18 days and the headache has not let up at all, so I'm to be scanned tomorrow. I have been very annoyed about this, but just yesterday the annoyance is starting to turn to concern. We CAN'T have two heads not doing well in the family....

Ron is fine but there have been some worrying things happening of late. On Saturday I had to go out early and left a note for him to walk Patches while I was gone, as we needed to head to Victoria mid-morning. Anyway, when I got home, I asked if he'd managed to walk P, and he said "No" I said, " Oh dear, we needed to get her walked" and then he said " But I just walked her" ( he had, but had said no instead of yes, getting the words confused.) Wah! Then there have been a few incidents where he is "missing" things socially -We were shopping at the veggie shop, and he helped unpack the trolley, as I was packing the veg into my bags. Anyway, before we were rung through, he started loading the veg directly into my bags. I think the lady at the till thought he was stealing. Awkward! Then in Victoria, after lunch, Ron's mum and sister nipped us into the hotel lobby that they'd stayed in, to see it, and he helped himself to an apple from the bowl. He would never usually have done something like that if he were not a guest. I feel like I now have to be constantly vigilant. The doctors are right about me needing breaks, it is all very draining.

Headache

2008-04-08T07:35:00.000-07:00

Usually I write here about things happening with Ron. But this time it's me. I'm now in day 11 of a severe headache, nothing has helped remove it. I've tried T3's, my migraine pills, advil by the spoonful, Tramacet, now another from the doctor who's name I forget( I forget the pill's name, not the Drs!).... Anyway, a cat scan has been ordered which will hopefully happen promptly. It is not easy when I am feeling poorly too, with Ron not driving, not managing to cook, or do anything with money, having trouble now with even simple tasks. I have to stay on top of things and keep well. These past few days I've not been able to do much at all.

It's been a year now since his diagnosis. Maybe this has caused extra stress for me, or maybe it's just the cumulative effect of all these months of never having a block of time when my mind is totally at ease - there is no escape and no getting away from what's happening - even when I am physically away, Ron is on my mind.

Aside from the headache, I did have a lovely time in Denver with Caroline. I so wish she lived closer. My friends are such treasures, I am so blessed with them and I know will need them more and more as time goes on. Same goes of course, for the 3 wonderful kids. Matt in particular, has been so responsible,( considering his age) and checking up with me exactly when I need him to be with his dad, sorting out summer work already etc.

Dancing with Dementia

2008-04-04T13:58:00.001-07:00

I am reading an amazing book right now, Dancing with Dementia, by Christine Bryden. She was diagnosed at age 49, and is a very articulate and literate person - so was able to publish a book about what it's like to live with dementia. I was very moved to read her account, and it has certainly given me a fresh appreciation of how very difficult it is to manage day to day activities, and conversations, when one's brain is compromised. An image that struck me was she described herself like a swan, to the observer, gliding effortlessly across the water, but beneath that body, the feet are frantically paddling to keep it all going. I realized that so often things are very hard for Ron, and I praised him for just how well he is managing. After reading this book, I feel I have a deeper understanding of the struggle to cope. I hope to buy a couple of copies and hand them round to family and friends.

Ron is finding the remote control for the TV very difficult to manage. Every night I have to help him with it, it's so sad, as these kinds of things always challenged me, not him. Yesterday, I asked him to replace the ice in the trays in the freezer. This proved too much for him, I needed to prompt and help him step by step - he didn't seem to know at all what he was meant to be doing. Times like this worry me - what I think of as obvious or simple isn't to him.

I had a really wonderful time in Denver with Caroline- once I finally got away with the snow! - such a good break. I really don't want it to be three years till I get there again. I came home much refreshed and much poorer ( we visited the outlet mall!)

Things going well

2008-03-26T06:16:00.000-07:00

There really isn't much news right now, things are going along pretty smoothly. The kids were back for the Easter weekend, which was wonderful. Ate far too much, particularly during an Easter day brunch with good friends, John and Christine. Then Ron traveled back to Vancouver with Dave on Monday afternoon. It was a treat for them - they went on the float plane that leaves from Maple Bay, which is so convenient. Ron returns today, Wednesday, but did fit in going to his support group yesterday. It is my hope that he can connect with them once a month, he really enjoys it.

The ebike is back and running fine - kind friends Willie and Sandy picked it up from Nanaimo for us, as they have a truck. I look forward to warmer weather so Ron can use it more.

Sorry this is a bit boring, but no news is good news.

Success!

2008-03-13T19:06:00.000-07:00

Oh good, oh good! The time with Mike went off very well indeed. I am so delighted about that - it's really such a relief to me that Ron wasn't resentful. They went for icecream at Cowichan bay, and also tromped round the forest to find one of those Geocache things with Mike's GPS system. I had a pleasant coffee out with a friend. Also, the e-bike is fixed and waiting to be picked up. So all is well in the world. And to top all this off, I slept for 8 HOURS last night, a miracle! So life is good.... not perfect, but still good.

Mixed feelings

2008-03-11T11:51:00.000-07:00

Today is another milestone - a caregiver, Mike, will pick up Ron after lunch, and take him out for a couple of hours. I am thankful that we have this opportunity, it will be good for Ron to interact with someone new, and good for me to have a definite break. This will be a regular thing, working up to twice a week. The hard part is the reality that less than a year ago he was practicing medicine, now he's going out with a caregiver. It is premature, I know, but I am told it's far better to introduce a caregiver earlier than really necessary - if it's left too late the adjustment can be very hard. It is my hope that Ron has a good time, that he looks forward to the time spent with Mike. They will go out for coffee or icecream, and maybe do some hunting for hidden clues using Mike's GPS system. I knew nothing of this, but sounds interesting.

I didn't want to just snooze or do housework, so have arranged to see a friend for coffee while this is happening. It's actually upsetting me far more than I thought it would, in fact, I have felt quite ill and weepy through the morning. Oh well, one just copes. Life is actually good.

Found

2008-03-05T07:45:00.000-08:00

Ron found the cell phone yesterday in the bottom of my side of the closet. So that was happy news. Pity it's not so easy to find the other things he's lost!! E-Bike is going up to Nanaimo today with my good friend, Donna - hopefully it won't be long before it's sorted.

Losses

2008-03-04T09:58:00.000-08:00

I knew one day it would happen - yesterday was the day. Whenever we've been out and about in the car, I stop on the way home at our mailboxes and hand Ron the keys to get out our mail. Always, without hesitation, he goes to the right box. Anyway, yesterday he had no idea which was ours. It was hard to see. When he got back into the car, he said " I'm not getting any better, am I?"

Also, last week he lost his cell phone. I have a thought that if we got a used one his number could just be switched to it. I'm wondering if any kind soul out there has one we could have? The older ones are less complicated, so easier for him to use. Can you contact me if you do?

Another loss is on my part - I have no creative energy or inclination to paint. It's enough for me to do the life drawing once a week. I have decided not to be hard on myself about this, will just accept it, and not allow guilt to make things worse. Easier said than done. Makes me wonder, though, who I am. I had always known I was an artist, now I'm not so sure. Perhaps it's enough to be a caregiver and do the best I can for Ron, and to try and hold onto a bit of myself at the same time.

Good week

2008-02-25T08:50:00.000-08:00

There isn't much news, really, but I know there are people from time to time who check for new posts, so I thought I'd write.

We had a bit of a hassle on Weds - Ron went off on his ebike to go and swim, and unknown to me, got a puncture at the bottom of our hill. He ran with the bike - it's heavy - all the way to the closest gas station, about 3 or so km away. Thankfully my kind friend, Sandy, saw him and phoned me on her cell. Matt and I went in to sort things out, and unfortunately, the local tyre people can't fix it, as they are only insured to work on cars. This means I've got to get the bike up to the place where we bought it in Nanaimo, all rather a pain, and I don't like Ron to be without it for long.

Ron and Matt went to Vancouver for the weekend to have a day's skiing with Dave at Whistler. They all had a really fantastic time and Ron only got lost once. I joked with Matt that we should pull out his old red ski pants, and yellow ochre jacket so that he can be easily spotted. Dave is pretty sick, and I hear had to vacate to the car to rest up his chest. I think I'll pester him to go to the doctors, it's been an on-going chest problem for months. Ron is staying on with his mum so that he can go to the support group on Tuesday. I phoned earlier in the weekend, and, after chatting to Matt, he gave the phone to Ron and said, " Mum wants to talk to you." So R gets on the phone and says " Hello, Mum" to me, even though he was in the kitchen with his own mum. Funny but very sad.

I've had a lovely time, with a trip to Victoria with Linda - my dear friend who's husband died from dementia in 2005. We had an indulgent evening of watching the Oscars with wine, tons of cheese and breads, with another friend, Tracey. Also over the weekend, I visited with a lady, Nadia, who is a full time caregiver for her husband with MS - she is incredible how she is managing under very difficult circumstances, he is unable to attend to ANY of his needs, and they are in a small trailer home in Duncan. My problems paled in comparison to this. She is a wealth of knowledge about how the system works here in BC, so I'm very grateful to have connected with her.

Back home again

2008-02-16T15:59:00.000-08:00

Well, it's good to be back home and settling in to normal life. What a wonderful time of year to escape from BC - now we are back, it won't be long before Spring. The trip went well - Ron is very familiar with the layout of the ships after all those times of working on board as ships' Doctor - so that really helped me. He enjoyed the food, the movies and the shows very much. For me, the best part is walking laps on the promenade deck with the gentle wind and sound of the waves and the fresh sea air, and my new pink ipod with books on tape! Of course I ate too much too, but was chuffed to note only a pound and a half gained. The hard part for me was the tangible difference now, between Ron and his brother, also a practicing doctor. Sometimes it's very difficult when I realize how much Ron has already changed - his level of confusion has definitely increased, and his range of vocabulary and amount he speaks is much reduced. Traveling with a group is better for me, as it means there's someone to talk to, alone with Ron, nearly every interaction is initiated by myself. It can be very quiet and lonely. I count the days till the weekends when I see Cammy and James, and Matthew.

Here's a sampling of pics from the trip. It was a cruise from Fort Lauderdale through the canal to San Diego. From there we trained up to LA to have a couple of days with Ruth and Roger ( Ruth is my late dad's sister, and very, very special to me)

Ron and mum waiting at YVR to go!

Ron, Mum, and sister, Marnie, at Las Olas area of Fort Lauderdale

R and self at Riverside Walk, Fort Lauderdale

Ship and sister ship at Half Moon Cay, Bahamas. Just heavenly.

R with three-toed sloth, Colombia

Self transiting the Canal

Barry( Ron's brother) and Pam ( his wife)

Jesse, their son

Anne and Ruthie relaxing - if that's possible- at DisneyLand.

Now in LA

2008-02-10T07:12:00.000-08:00

I thought I'd do a quick post from my Auntie's in LA as I know it's always a few days of laundry and shopping etc before I get down to this type of thing after a trip.

The cruise went off wonderfully, it was really a special time for all of Ron's family to be together, just relaxing and no one had to do any work. The decisions on board the ship are so taxing, should I have icecream now or later, should I read or do my sudoku, or walk the decks.... oh the life of Riley! Ron knows the ships well from those years when he worked as physician on board - the layout in that class of ship with Holland America is all the same, so it's much easier for him as he knows where the library is, or the pool deck or whatever. Even so, there were a few times when he was meant to go to a particular place to meet us and he went somewhere else - with the short term memory being compromised he just falls back on something that is familiar but may not be right. I enjoyed a bit of time by myself - Ron did a couple of snorkeling trips to beaches with Barry, Pam and Jesse, and I wondered round town or went back on board. Sometimes I needed to rest in the day time, having been awake since 3.40 or so which is a real pain - but oh well, I had the time and was relaxed through it all. It really is lovely to have some other people around for conversations. I do hope we are able to do this again - Ron's mom's health is amazingly good at 86 - but she does worry that she won't be up to it again. I know Ron loves it so would want him to enjoy this kind of thing while he is able to.

So we have two more nights in LA - tonight we're going to a Choir performance, a black Gospel and Blues group, should be fantastic, and then an ambitious day planned for tomorrow, Disneyland, with Ruthie. I'm equipping self with Advil in advance and refuse to do the lurching rides! I'll leave that to the kids amongst us!

About to go!

2008-01-18T07:07:00.000-08:00

Thought I'd better post on the site as we leave on Monday for the trip. First the ferry to Vancouver, then on Tuesday, we'll go with Ron's mum and sister Marnie, by train to Seattle. From there we fly the following morning to Fort Lauderdale, where we have a couple of nights before boarding the ship for the Panama Canal. It's always wiser to be at the port in good time, I've heard too many horror stories of delayed flights and people missing cruises! Anyway, Ron's brother, Barry, and wife, Pam and son, Jesse will join us on board. It's a 15 day trip through to San Diego. I'm really looking forward to the warmth of the sun, and having all the family there - I think it will be really good for them to have some time with Ron. From San Diego, Ron and I train by ourselves up to LA, where we'll spend a few days with Ruthie and Roger ( aunt and uncle) before heading home round Valentine's day.

I had a wonderful very long appointment with my kind psychiatrist. She is very knowledgeable about drug trials and will research this particular one carefully - she is in a good position to advise me about it. Thankfully nothing has to be decided quickly.

Ron is now finally over the flu - he developed a stye in the eye on top of the other infections, so has basically been under the weather since his return. The week has been fine on the whole, except for a minor melt down on my part - it was one of those instances when there's a lot of small things causing stress, then Ron fiddled with the new TV and it became a complete snowstorm - my kind friend, John sorted it out and calmed me down. It is hard to continually be upbeat and strong and capable - sometimes situations just overwhelm!

2008

2008-01-09T07:19:00.000-08:00

Well, the start of a New Year. No resolutions really - just a hope that I don't age too much!

Ron returned safely from the Mexico trip - I think he enjoyed it but he said he found it too much. I believe it was a busy schedule and quite physical. The lady in charge of the group told me he was often bewildered. I was mortified to see that early on in the trip he'd decided to shave off his beard of 30 years and had taken the razor to it. Swathes were missing, other parts full, as he'd found the razor wasn't up to the task, and had just left it. Without the dementia, for sure he would have recruited someone with a pair of scissors to clip it first - but he just left it like that, and no one intervened. Oh dear! I got it sorted out right away.

He had only one night at home and then I had to take him over to Vancouver for his UBC assessment. I learned nothing new - there has been deterioration, particularly in the Frontal Lobe area. They still would not tell me how quickly the disease is progressing. Now I am faced with a dilemma - whether to involve him in one, possibly two research projects. One for FTD would give him a PET scan, which he otherwise could not get, but we would not be told any results. PET may give clarity as to whether it's FTD or AD - if it's more AD then he could be part of another new study with experimental drugs. Another man from the caregiver group had his wife in such a study, and the drug made the world of difference to her. After two years, the study was stopped as they felt overall it wasn't successful, and she wasn't allowed any more pills (they were destroyed) and she regressed terribly. As you can imagine this must have been wrenching. Also there is the 50% chance Ron would get a placebo anyway. There is the extensive cognitive testing to consider too, that is so hard on him. Even extra trips on the ferry are stressful for me. Anyway, I've some time to think about this and chat to my psychiatrist and good friend who's traveled this road. I had had such a good week, with the trip to Seattle with Cam, and I was feeling strong and positive and able to cope, and now I feel down - with the heavy responsibility of having to make major decisions about Ron's care,and medical proof of his decline. The relentless progression of the dementia is hard to live with.