Monthly Archives: December 2014

Life and Death

Yesterday we went to a wonderful Celebration of Life for our activist friend Gwyn Frayne, who we both loved.

After the roar of the crowd settled down for the songs and speeches, (crowds overwhelm and frighten him) Don was very very attentive. He cried in a few places, but I did not see him laughing at the jokes, I think because a joke requires a long serial attention. Because our friend Norleen was with us to help with Don, I was able to chat with a few folks, and many people came up to speak with Don, who was happy at all the attention. He always was at his best surrounded by women!  People were asking about him, what he is able to follow, and I think they might find this interesting.

This morning he said, “So she’s dead now, our friend?”

“Yes, yes, she is.”

“Was she there yesterday?”

“Well, in a way, yes, she was, sort of.”

The lines between life and death are becoming blurred.

After a nap this morning he woke up a bit confused about where he was, and said, “I hope my mother doesn’t get lost here too.”


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Alzheimers Research

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

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Days in the life

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.


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