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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2 responses to “Days in the life

  1. Grace Clarke

    Awesome description! Wow! You are amazing! How precious to be able to describe and share the ups and downs and changes in memory and responses for us!. To learn with you and realize we are not alone in this journey with a spouse with dementia.


  2. nattanya birkhaven

    Hey there wonder woman, love this new book happening. More singing. Love to you and don.