CaringCV

The Mayo Clinic has summarized the current state of research about genetics and Alzheimers, which is probably of great importance to anyone related to a current Alz patient http://www.mayoclinic.com/health/alzheimers-genes/AZ00047

I am mostly writing this for the younger, inexperienced me, who kept trying to figure out what the books and caregivers’ courses meant by their words such as “confused.”

On Thursday evening we had a fight. Don had staggered off to bed, and I had tucked him in and gone back into the living room to finish watching a TV program. Ten minutes later Don came back out, agitated, and thinking the comforter was a fire or was on fire, not too sure which.  I made the mistake of being a bit quick to dismiss his concerns, and the fight was on. I was accused of being bossy, and I did not bit my tongue as I should, and there were tears and heavy hearts.

The next day he was quite distant, (told me somewhere during the morning that he was “broken-hearted”) and at one point told his caregiver, “I need to go home and fight with my woman.” She bought a little time by buying lunch, and the atmosphere cleared a bit.

Later that afternoon he tugged at  my hair, gently, and I smiled, knowing it was going to be ok. It was always a joke between us that little boys who liked little girls pulled their hair. An hour or two later he said, “Well, I think we should just go back to the way things were. That’s the best thing to do.” I agreed, and we did. Just as if a switch was turned.

Next day, my love jumped out of bed early in the morning. As he was leaving the bedroom I opened one eye and muttered something about turning the furnace on, “the little slide-y switch.” A week ago he had been unable to find the thermostat (turned on every light in the house during the search) but the day before he had turned it on with no prompting. After a few minutes I hear water pouring in the bathroom, and go in to find him casting about rather puzzled. “It’s broken,” he said, waving his hands over the bathtub torrent. “There’s no heat.”

For 30 some years my sweet partner has indulged me every morning by bringing me coffee in bed, but it has become more and more difficult for him (I make it the night before, of course) and lately I have been circumventing his lovely intention by casually showing up to get it for myself and him. So I turned off the bathtub tap, turned on the furnace and got him back to bed with a cup of coffee “until the house warms up.”

(The next morning he got up and performed everything perfectly, with little hesitation.)

Comfortably back in bed, we started off our morning with some minute-by-minute reading of the digital clock complete with speculation about what it would show next. (I was going to write a piece called Clock-spotting!) However, the game got a bit assertive when 2s suddenly started being read as 5s and the numbers jumbled themselves. I retreated into “Uh huh,” and “Oh yes,” because he wasn’t up for being corrected.

At breakfast, we got into a bit of a discussion about a bus ride he and his ex-wife took about 50 years ago or so, with many questions which made it clear that I was being confused with said ex. Also his daughters and his sisters are frequently jumbled, confused, as are his sons and his brothers, so that one has to guess who he is talking about by the context: “Where did my brother go?” “You mean the man who was just visiting?” “Yes,” “”Oh that was your son and he lives in Victoria.”

The words are often hard to grasp, because frequently (but not always) the only words he can find are ones that rhyme or in some way resemble the word he is looking for. Furled, or Wide instead of World, Giss instead of Give, wet instead of water. And often, up instead of down or cold instead of hot.

That afternoon a caregiver came and they spent several quiet hours going over the story of his younger life, which he wrote down during the early  stages of the dementia. He found the story excellent and was able to remember some extra aspects of that time. And I was able to get some work done in peace and quiet.

In the early evening we went to a pub for some Celtic music, and there, in conversation with a sprightly 90-year-old, my beloved could not remember exactly where he was born , but indicated that it was Halifax, probably because he was excited by the music and the Maritimes connection. I ordered oysters for him, because he has always been a great fan of oysters, right to the point of eating them raw on the beach, and wanting us to buy some every couple of months. However, now the oysters were a flop because he did not remember what they were, did not remember ever eating them, and the taste did not remind him. He wrinkled up his nose and went back to talking about being born in Halifax.

On Saturday I forgot to give my love his lunch time pill. On Sunday he slept all day and was feeling terrible (“I think I could be dying.” “”Oh? Do you feel like you’re dying?” “I don’t know, I’ve never done it before.”)

 So feeling worried that the little anti-psychotic pill was making him worse, I deliberately left out the lunch pill.

 Monday he was somewhat better but speaking in garble, and I realised I had run out of his pill packs and we had to go to the drugstore to get more. I didn’t want to give him just the little pill in case he realised something was strange.

By about 10 o’clock he was in full meltdown mode — drivers’ license, me taking his car and his life away and all. It is really abusive and nothing to be done about it, except get the pill into him and wait. And think evil thoughts about how sick people are allowed to be abusive whereas if he were well I would be long gone.  

I got his pills, but didn’t feel he was stable yet and I should leave him with another person who has never seen him have a real meltdown. By about 2 he was happy again.

 But I missed my pool exercise.

The Sequel

During the evening he got very tired and confused me with his sister, and then cried because he remembered his sister  was dead.

That night was dreadful, complete with hallucinations of people in the room and then later, not knowing where we were. Repeatedly. We even got up and explored the house and he said he remembered the house and furniture, but after we lay down again he was back to the repetitive questioning about where we were.

At 1:45 I had had enough and gave him a Seroquel for a sleeping pill, and took one myself because by then I was so tense I was vibrating.

Silence descended and we slept until 8 AM.

“Good morning! How are you today?”

“I don’t know. I don’t even know WHO I am.”

And at that piece of honesty, I reverted into the hearty assurances which I have seen so many people give – you know – the “Oh we all have memory problems” – the kind of assurance that leaves my love just looking away – too confused to argue, but knowing full well the assurance is false.

“Well,” I said, pulling out my best psycho babble, “I guess none of us really know who we are….”

He just looked away.

October-29-14

Watching TV last night, after a very cheerful afternoon.

Don had asked a few times what Debbie had wanted (his favourite caregiver had come but they stayed in out of the storm, and he listened to music) and I replied, “oh she just came to hang out with you,” and he nodded, “Oh, Of course.”

Don says, confidingly, “you know, for the last…couple of weeks I have been thinking I wanted to go back to Slate Falls,” (I braced myself for the usual tirade, usually ending in accusations about taking his driver’s license), “to visit my father and mother, but they are gone.” He wiped away a few quiet tears.

Returned to a similar theme this morning. I came out to rescue him from wherever he had gotten stuck (the middle of the dining room) and he said, “but you’re not my mother, or my sister….” and I replied, “No, I’m your wife.” I convinced him to come back to bed to drink our morning coffee, and talk about things. He continued, “I don’t think we should move, I think we should stay here.” I replied, “Well it’s a pretty good house,” and he answered, “yes its a really great house! I was thinking, out in the kitchen, if we moved, where would we get the coffee? We make it here.”

We then went over who was living at Slate Falls now and named all the brothers and sisters, and all Don’s sons and daughters, accounting for where each of them were. He faltered over Dalt, his dead brother, and i held my breath not wanting to deliver that bad news again, but he quickly recovered: “oh yes he has a new truck,” and I said smoothly, “yes Carl has a new truck, a red one.” And life goes on.

Interesting that the transformation of Dalt into Carl remains set safely in his mind, but his mom and dad, he remembers so far, are dead.

I continue to feel calmer after my respite a couple of weeks ago, although very very sad, A strange sort of calm sad.

I’m just back from 3 nights away at the “Zero Waste” conference, (yes, a better world IS possible), my head spinning with ideas from the discussions there. I slept like a log every night — hadn’t realised what a toll sleeping with one ear open for the nightly disturbances takes on one, never mind, I suppose, the continual attentiveness every moment of the day.

My head is also spinning from the shakiness on the home front. Don was almost ok with my departure since his favourite caregiver was coming to stay. Guess that lasted for almost two days, until escalations started. He decided a second caregiver was after his beautiful bod (! What else could a strange woman be doing, hanging around, I ask you!) and demanded that she leave. (She waited outside until her relief came, not knowing, I think, what was coming down.)

The perturbations gradually grew, as far as I can tell, from there. The caregiver had problems with child care which brought even more change into the house, although Don continued to hold it together except for great fear of the dark.

However, on day 3 it all went south, with Don declaring he could drive the car, and leaving the house in anger when denied that tantalising prize. He was quickly found and no real harm done, except to his pride. By the time I got home I was treated to several lectures about how he could drive, and the caregiver thought she was the boss, and questions about what I was up to while I was away.

But he saved the best for this morning. Alzheimer’s, he declares, is just a “hoax to take away my power.”

I dunno about that, but it sure took my breath away!

It happened again the other night — a simple night out listening to folk music, and I found myself in conversation with an earnest young social worker who was batting her eyes and assuring me that this caregiving experience was a “wonderful opportunity for personal growth.” She assured me she knew how hard it was (Not!) and continued, “But seriously, you need to look at it as a great experience.” I explained that putting most of my own personal work on hold for nine years did not strike me as a wonderful opportunity. Then, she started to outline all the wonderful programs we have in the valley to help caregivers. Almost all of which I have, of course, tried.

Oh the humanity.

I happened across this little book in the Vancouver Island Library catalogue — you can download it and read it on the  electronic device of your choice. It is the account of Elizabeth Tierney’s decade-long struggle as a caregiver to her husband. The ups and downs of diagnosis, the tidbits of hope and conversation, the agonizing memories, the crazy-making trauma of it all – it’s all here captured in vivid (but brief) detail.

It also goes with unwavering courage into those mysterious end times, because Elizabeth nursed her husband at home until he eventually just died.

If you are a caregiver you will find yourself nodding and sometimes crying at the agony of this lost love. Because it is the tale of a struggle, but more than that, a love story.

One review in nursingtimes.net concluded: “Any nurse working in dementia care, or supervising health care assistants or home care workers would benefit from reading this book.  But it is strong stuff, so be prepared to weep. Think of the awesome resilience of the author the next time you start to say that a complaining relative is “just feeling guilty”.  It’s always much more complex. ”

You can find the e-book here: http://virl.bibliocommons.com/item/show/896852043_dignifying_dementia

Don seems to be sleeping more and more. I would estimate that 3 days a week he will sleep 12 to 14 hours a day, with a couple of extra small naps. I have checked carefully all his drug reactions and looked through my diaries and it does not seem to be food or drug related. I think the activities of daily living are just exhausting for him. This morning, it being a lovely day and my love’s mind being relatively clear, we went out into the garden to trim his beard. All went well, but when it was time to stand up and get into the house, he staggered in and fell on to his couch for a nap, and has been napping for two hours. I think the stress of holding it together for the hair cut was just so tiring he needed to rest afterward.

Yesterday, one of our caregivers took him to the Farmers’ Market to hear some music, but it was too much for him. When he got home he got slowly more confused and agitated — asking the same confused questions over and over and over — fortunately I thought to give him an aspirin and he went to sleep, sleeping in straight through from 9 pm until 8 am. I think these situations just overwhelm him now.

All this despite his continual agitation to go back to his old family homestead in Ontario. It breaks my heart when he asks, “When are we going?” “Will I ever see Slate Falls again?” (Of course, it is also crazy making.) It makes me want to scream — if you can’t handle a trip to the grocery store HOW are you going to travel? But of course, he doesn’t know, and has no ability to think it through. Kind of a comfortable place to be, I guess.

A follow up to the study reported in January: http://www.ncbi.nlm.nih.gov/pubmed/24473795

“CONCLUSIONS AND RELEVANCE:

Elevated serum DDE levels are associated with an increased risk for AD and carriers of an APOE4 ε4 allele may be more susceptible to the effects of DDE. Both DDT and DDE increase amyloid precursor protein levels, providing mechanistic plausibility for the association of DDE exposure with AD. Identifying people who have elevated levels of DDE and carry an APOE ε4 allele may lead to early identification of some cases of AD.”

The way I interpret this is that, IF it is residual DDT (DDE) rather than all sorts of pesticides, there is some hope that the current epidemic might calm down, since DDT was banned for most uses, in North America at least. in order to save the birds.

Also of course, although the irony is unbearably tragic, this would mean that younger members of families with cases of dementia are not faced with the same grim odds. I remember well my partner saying “Oh yes, we used to have bed bugs, but then they….went away.”

Hmmm – I know how they went away – DDT!

Saving the birds, saving ourselves?