Monthly Archives: August 2015

I started writing this blog as a kind of desperate move, realising that I probably never would get around to writing the book I had been carefully keeping notes toward. Now it has turned into a therapeutic exercise for me, and I feel comforted in knowing that many people are reading this and, in that way, keeping me company as this story unfolds, to its inevitable bleak end.

Also, before I figured out how to get Seniors Health (VIHA) more heavily engaged in our problem, and before I found the great caregiver help I have now, thanks to the CSIL program, I spent a lot of time feeling sorry for myself. I thought the partners of those with dementia were expected to just bury themselves alive with their dying spouses, a kind of living “sati.”

But enough of this — I am doing what writers tend to do best, “not writing” about last night’s episode.

After a rather challenging day, including several hours spent at Emerg  (good news – no problem), Don went to sleep at about 10.

I stayed up for awhile and was just at the sink, tidying up the kitchen, when I heard a loud “crack.” I turned around to see my love, standing with his walking stick upraised ready to swing again. I cried, “Stop, Don. Stop. It’s Delores, I am Delores,” but for many seconds there was no recognition in his eyes. Then, slowly, there was puzzlement, and then, he lowered the stick.

I took a deep breath and we went to bed.

Accidents happen to people all the time, but this morning, I realize that I could easily not be here today, comfortably blogging about this close call.

It’s been a long time, it seems, since I wrote, and a few episodes I meant to record have now floated down the river of time.

But yesterday was memorable. We had a visit from our geriatric psychiatrist from Seniors Health – another example of the health system actually working wonderfully. As we settled down, my love explained earnestly about all the dangers in the clouds, the weird colours and things that get dropped from them, and then the doctor did the usual — the mini-mental test used to gauge the state of mental deterioration.

All of we caregivers have been aware that my partner was getting worse (and  quite irrational, angry and anxious – well, obnoxious to tell the truth – about the whole situation. Sometimes downright abusive.

The evening before last he had asked me five times if I “knew where Delores was?”

But as the test proceeded, my jaw dropped and I fell into a kind of stunned silence.

He remembered his name and birthday, although somewhat unsure of the year. Did not, of course, know the current date or the month, he knew we were in a house, and he could name the pen and the watch. He did take the paper and fold it and put it on the floor, but the rest was pretty well complete incomprehension. One question asks the subject to read and do what the sentence says. Printed in huge letters was “Close your eyes.” The silence lingered, and then my love – the writer – ventured, puzzled, “cloud” and “E Yes.” Altogether, a score of under 10 out of 30, indicating severe dementia, whereas he had been scoring 25 for the first 6 years of the disease.

As for drawing the clock, (another  standard test, which he has always done, although less and less well) not only did he not draw it, he didn’t understand the instructions.

The nurse said Don seemed definitely worse than when the nurse was last at our home a month ago.

Later the psychiatrist gently explained that it was time to withdraw the donepezil (Aricept) since there was no longer enough brain cell messaging for it to do any good. The drug might now be causing anxiety rather than helping.

And. he said, the time had come to focus on my own health. That it seemed Don was on a steep decline now.

As we sat that evening, my love asked, “is something wrong? you seem different?”

“Yes,” he continued, “you seem sad.”

These days short term memory is literally non-existent when applied to the activities of daily living. It is rather eerie. Also longer term is pretty hooped — My love asks to be directed to the bathroom almost every time now. But when it is a matter of emotional impact the memories linger, no  matter how distorted.

And then there’s pie. The pie sitting on the counter was not only remembered after a nap, it was remembered in the middle of the evening, TWICE…It was remembered over and over until it was all gone. The memory of eating that same pie for dessert, however….that memory was ….well, let’s just say it was proof of my insanity to even suggest he had already eaten pie that day!

This morning, after a very agitated yesterday — downright nasty to the long-suffering caregiver — my love slept over his morning coffee for an hour or two, so still it was as if he was absent. Then he staggered softly into the kitchen and said, “I’m dying.”

He has said this often over the last year or so, and our usual response has been some sort of bracing, “Oh, everyone dies eventually, but we don’t know when.” I tried that, but he looked at me and the words on my lips evaporated. And I said, “Yes.”

He asked, as he so often has, if the doctors could help, and this time I said, “No. They might be able to fix your pills so you feel better, but they can’t stop the disease. It’s like cancer – sometimes the doctors just can’t do anything.”

He nodded sadly, and said, “I’m afraid.”

I suddenly wonder if the terrible anxiety, the refusal to let me out of his sight, the visions of fires, and the constant fear are actually based on his fear of dying. I wonder if therapy can help those with dementia?

“Sometimes people just die quietly in their sleep and it really shouldn’t hurt at all.”

After a long calm silence, he said slowly, “But I wanted to help you.”

“Oh my love, you have helped me, for thirty-five years you have helped me. And we have had a good life together.”

This prompted a startled look — “Three years? That long? I thought it was only a year we’ve known each other.”

By now I am crying and I told the truth, “I don’t know what I am going to do without you. But …” (remembering that he needed to be set free), “life has a way of going on. It will work out. You know how life does.”

“Don’t cry, babe.”