Tag Archives: Alzheimer’s Disease

The Moaning

Time slips by and we stagger, sometimes literally, on. Don remains on his feet but is sleeping much more and both allowed and encouraged to do so.

Fatigue makes him wobbly. A few days ago I was there just as he woke from an afternoon  nap. He was sort of in shock, a bit desperate, shaking, and said, “I’ve got to get out of here.”

Then he started The Moaning. ‘Tis a dreadful fearsome thing. He gets into a kind of evolving moan which takes over his whole being. And nothing breaks through the rhythm into his consciousness.

Even in the face of its piteousness, I cannot help but recall the time at home when he was going on and on… and on.

No diversion worked. Finally I snapped, “Oh Stop that ridiculous moaning.”

In the sudden silence I bit my tongue.., too late, and waiting for the explosion.

“Oh!” he said, “Well, okay.”

And that was that. Silence.

I still laugh. Just one of thousands of delicious memories.

This time however we went out to the nurses station where it was quieter and I got a flannel sheet from the warmer where there is always comfort waiting.

I wrapped him and cuddled him and we sat together until he quieted, then cheered up and agreed he surely was ready for supper.

But what never seems to change, no matter how hard I try, is a secret hidden hope each time I go through those locked doors. Hope that is dashed each day when I see him, tall and skinny, often dressed most peculiarly, as he gets more and more frail and less able to understand this daily world.

“Who are you?” was his affectionate private joke to me for 25 years, but now he really doesn’t know. And the answer makes no sense.

This grief must surely bring some strength, some bonus, some tempering in the fire, but for now all that remains, all that is evident, are the many broken hearts who visit the dementia ward.

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The last couple of weeks have been a very good experience, with my love on sufficient meds, including an anti-depressant at night which helps him sleep. There have been no blow outs, no cynicism or snarkiness. Some dizziness, but overall an attitude of trying to be helpful and co-operative. Even the odd joke, and some improved cognition, it seems to the caregivers. Even picked up his guitar and picked out a tune, which he hadn’t done for ages.

But today we entered another realm. As we were making love, he said, “This is wonderful, it is our first time.” I was understandably startled, and then agreed that it was great, but I mentioned that we had done it before. However, he was not to be detoured, and continued to seek information about me: how old I was, and whether I had other lovers, or children, and joking that some man was going to come beat him up.

I thought showers and daily activity would change this up but no, as I made some food, he said, “Well, I really have to get hold of Delores, I have to tell her what is happening. It’s not fair to her otherwise.”

As the day continued he asked over and over, “How am I going to get home?” and, “Do you know where Delores is?”

At one point as I said, “I am Delores,” he looked right at me and said, “What! You too!”

These questions were sometimes followed by a sort of fleeting startled realisation that something was not quite right in his own mind, and then the understanding was gone. “Have you heard from Delores?”


As this continued I began to feel quite light-headed and dizzy, as if I was evaporating in my own head. Fortunately a caregiver came, and I was able to get out for some fresh air.

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Something to ponder

On Friday we went off to Cumberland Day Program to see if Don would accept it better than he did a similar program a couple of years ago, which he still remembers as “that place you were trying to leave me in.”

We went in the back way, avoiding most of the nursing home vistas, and Don seemed to enjoy the morning although he refused to participate in the games due to fear of failure. (I think after awhile he will be ok because the atmosphere is very kind.)  He came home saying “Those are people who are trying to do a good thing,” but by early afternoon he did not even remember the experience. That is actually good news, because if he had found it traumatic in any way, he would remember.

For me, the shock was watching him in a situation where he had to function somewhat without me, and realising how very handicapped he is. He had to be helped to put sugar in his coffee by another guest (not too sure how that worked out!).

I realise I have been probably hiding the extent of his disability from myself because we are always in a familiar environment and I am always doing things for him. I feel strange, as if we are moving into a whole new experience and I need a lot of time to process it.

I wonder too if he is going downhill faster than I can keep up. It will be interesting to see what other people think after next weekend when we are having company.

I am not even sure if he is well enough for the day program and will have to discuss that with the co-ordinator next week.

Certainly we will try because he badly needs the stimulation and the experience.


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Again and again and again.

I try to count my blessings every day — all the wonderful things we have that make our life easy. Good medicare, and good doctors, wonderful help with caregiving, a nice house, good friends and all the food we feel like eating. This beautiful valley to live in. So many things to be thankful for.

But at the same time, this morning i am obsessed with everything I have given up to this disease, and it is not a small list. Start with our home, our huge market garden, my island community with all its warts and flowers, vast chunks of my lifework (career) gone, the travelling I so enjoyed, both with my partner and, even more, alone. Many of my friendships left stagnant and untended. Most of the stuff we did together for recreation like fishing, exploring, hiking, camping — no, actually all of it now that a 5 block walk has become to him , “Five miles.” My solitude which nourished my soul. Even my privacy. The ability to go for a short walk or take a long shower, or run off to a friend’s house for a quick coffee and a gossip. Sacrificed. All sacrificed for this disease.

Sacrificed while my 80-year-old life partner asks, again, for me to show him how to read a clock. Again and again.

With no end in sight. No relief. No cure. Again and again and again.

Multiply this cost by the millions and millions of families afflicted by this disease. Unimaginable.

Well, the caregiver has come, so now I think I WILL go out for a walk. One small thing that might make a big difference.

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US report on Alzheimer’s

This is a fascinating (well, morbidly fascinating) and up-to-date report on Alz and other dementias in the United States: 2013 Alzheimer’s Disease Facts and Figures. As well as estimates of risk of developing Alz (of great interest because probably the US and Canadian figures are similar) it also includes a look at the financial and physical cost of caregiving.

One sample

• One in nine people age 65 and older (11 percent) has Alzheimer’s disease.

 • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.

 • Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 13 percent are 65 to 74, 44 percent are 75 to 84, and 38 percent are 85 or older.

 Sure makes it clear that our situation is not unique.


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Nature of Things on Alzheimers

David Suzuki’s the Nature of Things (CBC TV – 8 PM Thursday) will focus on Alzheimer’s and Alz research. Turns out David’s mother had it but the family never talked about it.


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