I've been reluctant to update this -- for a variety of reasons. But I realize that's unfair to anyone who may have been following this.
    I won't elaborate too much on what's happened to ME, other than to say it's been an up and down summer with a long "up" part which began around the first of August.
      Since May, Joan has been in unit 7Y of  the Edmonton General Hospital which probably provides the city's best AZ care.
      She no longer speaks, has to be spoon-fed and has no idea who I am. It's like she died a year ago without her body realizing it.       I visit every other day, sometimes every three days.  The unit has a washer and dryer for family use so I usually combine laundering her clothes with help at a meal time, usually supper.      When she arrived at the General, her meals were pureed.  I knew of no reason for that. So at my insistence they had her evaluated by a dietician and she was put back on regular food.
      If you wonder why it was an issue for me, I invite you to try a pureed hospital meal.  It's the same as solid food but it looks like wet dog food.      It looks awful, tastes awful and has awful 'mouth feel'. But most at 7Y get it because they could choke on regular foods.     At first, Joan fed herself and seemed to enjoy regular food. But for the past month or so,  she has stopped feeding herself and won't accept solid food.    The unit manager says she's a "lazy eater'; she can't be bothered chewing. So, they switched her back to pureed. I start by spoon feeding most of what's on her plate and switch to dessert. She loves anything sweet and will often take two servings.    She's almost always in a wheelchair and is held in place with a seat belt that buckles from the back. Before we switched the buckle to the back,  she was found on the floor one evening.  Nothing broken, fortunately.
   The unit manager says she can and does walk with assistance at times during the day. They don't dare let her walk on her own. And she does get lots of exercise by sort of dragging the wheelchair all over the spacious, airy unit with her feet.
  I used to have mixed feelings about visits, seeing her like this and having to leave after a few hours.  For many months, she hasn't said a word to me or anyone else.
  When I arrive, she looks up in a vacant sort of way. Do I look familiar? Is she glad to see me? I can't tell. When I leave, she looks up in the same way. Does she want me to stay? I can't tell.   No one else visits other than two or three of her best friends from her circle of  'birthday girls' who sit with her briefly about once a week.
  For all practical purposes,  her intellectual essence, that which animated her is gone.  I think that's what her beloved sister, Peggy, felt when she flew out for a visit from Saint John in May.   I'm almost crying when I write this. But I've had a long time to adjust. I'm getting on with life.     I curl four week days and help at a food bank outlet on the fifth. I go to a lot of jazz and other concerts, talks and occasionally a movie theatre.  I see a lot of  British and some American movies and TV series, using Netflix.  

  I'm gonna spend two weeks in Maui in March and take part in a long distance bike trip in June. Also that summer, I'm gonna paddle the South Saskatchewan River from Medicine Hat to the Saskatchewan border -- for the seventh time  AND...  God or Bhudda or whatever he/she is called has found me a wonderful, very understanding, open, adorable lady friend.

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Those were brave words back then in early December. I was overly optimistic in booking the Maui trip. In the after-Christmas let-down period, it became obvious that there was no way that I could -- or should -- make this last big trip with Joan. She was becoming harder to manage with occasional outbursts of shouting and abuse of her Home Care caregivers. It became impossible to take her with me to my curling games. She would sit quietly and watch for about an hour. Then she would begin getting very agitated and shouting and I'd have to quit the game. And the manager of ElderCare asked me to withdraw Joan from her twice-weekly five-hour stays with them because of her incontinence problems. It meant I would now be caring for Joan full-time, all the time, 24/7. That prospect was depressing and it really started getting to me. By late January, I was seriously depressed and desperate for a way out. I was only sleeping a few hours a night and when I woke up, I would find my hair, my night shirt and the bed sheets soaked with perspiration. When I got up for breakfast, I was seriously dehydrated. Fortunately, Joan's doctor had made an appointment with the geriatric assessment center attached to the Misericordia Hospital. The appointment was for Feb. 1 and I began pinning huge hopes on it, hoping that they would find me a way out. When my daughter, Sarah, learned about the state I was in, she immediately booked a flight from Vancouver, postponing by a few days, a fun trip with her husband to Los Angeles. It was a huge relief having her ease some of the pressure on me. My brother, Garnet, was also a huge help. The four of us -- Joan, myself, Sarah and Garnet -- sat around a table with a geriatric physician and her assistant. I laid it out as strongly as I could that I had reached my rope's end. Garnet and Sarah backed me up on that. The doctor had been expecting to see a patient who MIGHT have dementia. But after gently probing Joan with a series of memory-related questions, she soon realized that Joan was a late-stage Alzheimer's victim. She also realized that unless someone else began caring for Joan BOTH of us might soon have to be hospitalized. She proposed a way out that involved us going straight across to the hospital's emergency centre. There would be a long wait but eventually Joan would be admitted to the hospital. Did we want that, she asked. Yes, I said, emphatically. It's now been nearly three months since Joan was admitted to the hospital. The first month was a big struggle for me. My doctor increased my medication for depression and I began seeing a mental health counsellor. She worked with my family doctor on my mental state and my sleeping problems. I hesitatingly said "yes" when the counsellor asked if I had any thoughts about suicide. I seemed very unlikely that I would ever again feel good about myself or develop any love of living again. Maybe I'm being overly optimistic but I HAVE climbed out of that deep, dark hole I was in. My medication has been reduced, I'm pretty well back to normal sleep patterns and I have resumed a wide range of activities that I had set aside whilde acting as a 24/7 caregiver. There have been other incredibly powerful and energy-giving changes in my lifestyle that I won't get into here. Just accept that I am again happy with myself and excited about what is to come in the last third of my life. Joan had caregivers with her round-the-clock for the first two months. Most of that time, she has been on a ward for long-term care of a wide variety of mostly geriatric problems. It's far from ideal for an Alzheimer's victim because few of the nursing aides have any real understanding of AZ patients' needs. I visit her every day for about 1.5 to two hours, do her laundry and arrange for her special needs such as having sessions with a hair dresser and a pedicurist. As I write this and think back to Feb. 1, I know Joan's condition has advanced quite a bit. I'm not always sure she knows who I am. I'm sure she doesn't recognize Paula, her best friend, when she visits every Friday, usually with another member of the 'birthday girls'. Her round-the-clock care by personal attendants was stopped about a month ago because she can't be assigned to an AZ care centre with that high level of care. I think, consequently, she has had at least two falls. She had an X-ray done that revealed a possible hair-line fracture of her hip. Until that fall, she would never sit for long, always getting up and slowly ambling along the ward hallways. They found they had to put her in a restraint chair so she would sit still long enough for her meals. Now she's in a chair of some kind all the time and isn't straining to get up and go somewhere. There has been no indication from the ward social worker or from the charge nurses that they have a place in mind for Joan. I have provided the requested three best places for her, in my opinion. But I've been told that when she is finally moved, it will almost certainly be to a different facility which may be much further away. And I've been told to expect to have to begin paying for Joan's room and board -- a charge of about $48 a day. After a lot of poking around with bureaucrats and an accountant, I have figured out a way to pay for it without quickly burning through all our savings...

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We got almost 10 inches of snow over the past two days -- the biggest dump in about five years. And it's supposed to get colder -- hovering in the minus 15 to 20 C range. But I love it, even the snow shovelling! We should get in some get good X-C skiing on the Victoria golf course. Will be interesting to see how Joan handles it. We've gone swimming several times lately at the MacEwan U. fitness centre. Joan LOVES it! I strap a foam float around her middle and she happily paddles up and down the family area lanes. She laughs and smiles from the moment we enter the pool until we leave... It's good exercise and fun! I plan to do it least once a week. The fitness centre has lockable family dressing rooms where I can help Joan in and out of her swimming suit. We just got home tonight from the Edmonton Symphony's annual production of Handel's Messiah with a 75-member chorus and four big name soloists. As always, wonderful!! On Thursday, we got back from Calgary and a nice visit with Angela, Joan's best friend from her nursing days at Foothills Hospital. Angela and her hubby have a condo at Canmore. She has offered me the use of the condo in January so I can ski at Sunshine Village while Joan stays with her in Calgary. I'm really looking forward to that as I couldn't do much skiing last winter for various reasons. Have had no major behaviour incidents for several days now. Joan still tends to get a bit loopy when she gets up and at bed time and if we sit around the house for more than couple of hours. This coming week, Edmonton hosts the trials for Canada's men's and women's curling teams for the Winter Olympics in Vancouver. Thanks to a friend with some free tix to give away, Joan and I will spend most of Monday and Wednesday at the Rexall Centre where they've set up the Briar curling ice at the hockey rink.

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... after hesitatingfor about a month, trying to guess how Joan will be a few months down the road, I told myself "to hell with it. Go for it, big guy!" Accordingly, I have booked a two-week trip in February back to Maui which we visited two years ago ago. Last year, at my nephew's strong urging, we went to Kauai, instead. I'm pretty sure I'll be able to manage with Joan two months from now at Maui. I doubt her she will have declined drastically before then. Yes, she's incontinent. Yes, she gets easily confused about where she is and who she meets. Yes, she cannot read and can't follow a complicated TV plot or situation. But I can and I am managing all those behaviours. No, a Home Care persons won't come in every morning to shower her, dress her, brush her teeth and hair and change her Depends diaper. But until I was strongly encouraged to involve a personal care attendant from Alberta Home Care, I already did all that stuff without feeling overwhelmed or "burned out". We'll stay in a bed and breakfast on the outskirts of Lahaina, Maui's main centre. Using B&Bs is how we prefer to travel. Joan will do much better in such a small, intimate setting than in a big, often-noisy, condo or hotel setting. Managing her clothes in balmy Maui will be easy. The B&B has communal, cooking, refrigerator and laundry facilities andis hosted by very knowledgeable long-time residents of Maui. I get excited about watching the maternal humpback whales frolic close to shore and spotting big green turtles grazing on the rocks at the oceans's edge. I have my own snorkel gear and plan to buy a pair of 'slit fin' fins to paddle about in the surf while keeping a wary eye on Joan as she soaks up some rays and the ambience on the beach...

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Joan has markedly declined since June (she's now incontinent and I use adult diapers). She's very antsy when getting up and going to bed, has gained a lot of weight (necessitating getting new clothes) and is becoming a bit paranoic. I still take her out a lot so we maintain some broader interests. EG took her this week to my three different curling sessions, a classics concert, the opera, a jazz session and a musical theatre production. We ate out twice, went for walks and had a busy night with Hallowe'en trick or treaters. My daughter -- a Vancouver nurse -- visited recently and will return about every five weeks. On her urging, I overcame my reluctance to use free government Home Care. (I still don't think it's necessary.) A girl now comes daily to change her, bathe her and dress her. But days when nothing is scheduled are a real pain as Joan gets increasingly restless. I fight feelings of resentment at having to be her 24-hour care-giver. When she is placed -- almost certainly within a year -- it will cost us $15,000 to $20,000 a year which will burn through our pensions and RSP savings pretty fast…

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 Joan's symptoms have followed the classic course since she was diagnosed about five years ago.  

 That bright, vivacious, fun-loving woman who got her commerce degree as an adult and held a senior government position has become a quiet, passive person who has dropped the word "no" from her vocabulary and depends on me for everything.

Her range of interests has drastically declined.  She no longer reads anything, never volunteers anything in conversation and is content to sit in a particular chair all day, endlessly painting and re-painting her nails.

She took the drug Reminyl for about three years. But it was discontinued a few months ago when she was re-tested and scored below the level where it's believed to be effective.

I have no idea if it benefitted her. Hopefully, it did slow the progress of the disease.  But how would you know?

Joan participates twice a week in an AZ activities program offered by ElderCare Edmonton at a seniors centre in west Edmonton.

Such programs are often referred to as "respite care", providing a break for  caregivers.   I don't regard it as such.

I sought it out in hope that she could learn a new craft or something instead of sitting at home doing nothing. 

But I soon realized that wasn't going to happen.  She basically can't learn anything new because she can't remember the instructions.

She strongly resisted getting involved,  claiming it was a first step at 'putting her away'. But she really seems to like it.

They do a variety of things and often have volunteer entertainers. About 15 people usually attend and there are always at least two staff persons.  It costs me $15 a day.

And, I admit,  it is nice to have about five hours to myself to shop or work on my garden on my brother's farm outside the city.

We still do things together. 

Joan always goes with me when I lawn bowl. She goes for short walks around the greens or just sits and watches.

Last weekend, we had a great hike with her sister and husband from New Brunswick up to the Plain of Six Glaciers behind Lake Louise.

This weekend, we'll join the Stettler naturalists' club on their annual butterfly species count at Dry Island Buffalo Jump Provincial Park. 

And we plan to take in all four days of the Edmonton Folk Music Festival (where, by the way, all those 65 and over get in free). 

I do all our meal planning, cooking, grocery shopping, housework, yard care  and help Joan choose what to wear and get dressed.

She has a loyal group of friends who include her in their monthly parties. Two of them frequently take her out to lunch.  They all pitched in to clean house for us before Joan's sister arrived from New Brunswick.

But I know the very sad day is coming -- probably in less than two years -- when I'll be unable to dress her, feed her, toilet her etc on my own and will have to place her in an AZ home.

 It's the shits.

If anyone in the same boat reads this -- feel free to contact me. Maybe I can help you. Maybe you can help me.  Maybe we'll just cry a bit about the unfairness of it.  But somehow we'll cope.

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