Monthly Archives: April 2015

Tough Times

Things are getting a bit tricky here.

After a weekend of wonderful family visits last week, complete with beautiful grandchildren, partly to mark my love’s birthday, we settled down, and things went well.

But Monday I had a busy work day with people talking in the office, and then a friend came for a week long visit. All ok, but by Tuesday he was acting a bit suspicious, and I gave him a little more of the quetiapine hoping to shift the direction.

Fat chance.

By Wednesday he was unwilling to accept that my friend and I were going out for a walk in the woods (despite the fact that he just won’t and/or can’t do a decent stretch) and then out to dinner. Perfectly normal thing for two girlfriends to do. He was angry with his caregiver, and ran away looking for me many times. The caregiver conjoled him back over and over. But the mood never shifted.

She says, “I disengaged and went into the bathroom at least a half dozen times. He would get quiet for a little while then begin again.  I have seen him very very agitated but never for so long and never running out the door over and over. All the meds and a glass of wine and he never sat down in hours. Kept reminding me he wasn’t going to hurt me even though he was a welter weight champion and easily could. Made sure I knew that.  He pretty much told me how awful and stupid I was and how sorry he felt for me.

“Earlier he had his shoes on backwards and we had a heck of a time sorting that out.

“As I left I saw remorse at the door. We hugged and he even blew a kiss as I left.”

He calmed as soon as I came in, and we looked at some pictures. After a short evening we all went to bed, still adding a tad more quetiapine because he was obviously very upset. All was well until about 2 AM when he woke, agitated and afraid, wanting his children, and calling me stupid (well, that goes without saying!). Prowling the house looking for them, all confused between his children and his brothers and sisters, and accusing me of killing and eating them. He was afraid of me and did not believe I was Delores.

Eventually after about an hour, he settled into “well I love you but you have lost your mind,” so there was a good deal of sadness and pity, and we went to bed, because I was able to convince him that he could sit up all night in bed and keep watch on me which he said he had to do because I was so dangerous.

This morning he said, “so what are we going to do? Just die or try to keep going?” He only knows something was wrong, but not what happened, and of course, there is no “why” to it. We settled on keeping going, sadly.

I phoned the psych nurse and there will be some adjustment in medication. They say they are going to put him on The List. The dreaded, useless list for long term care. [Actually it turns out it doesn’t work that way. That that is a choice I have to make, but the waiting is so long and the need so urgent that it is probably worth even worrying about. The creaky system only works at points of extreme emergency.]

I am crying, and, strangely, in shock.

Nice holiday for my friend. No wonder people don’t like to visit those of us struggling with dementia. It must be exhausting.

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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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What was this?

After his usual breakfast with gusto, Don lay down for his nap, and steady snores soon took over the living room.

An hour or so later I heard rummaging and thumping and calling, and went to investigate. I was met by a very frightened man, his limbs shaking and his words incomprehensible. He didn’t know where he was or, at first, who I was. The extreme unsteadiness and fear continued for an hour, and finally he said, clearly, “Now I know what’s happening. I am insane.” I replied, “Oh darling, you are not going insane, it is just the Alzheimer’s.” (I always just call it Alzheimer’s — can’t imagine how I would explain the word dementia at that point in time!)

“No,” he said clearly, “Not going insane, I am insane.” A little later he added, “You need to be careful for yourself around me because I’m insane.” I assured him I was very careful for myself and he soon went into a deep deep sleep that continued for hours. He got up to have lunch with his caregiver friend, and then went right back to sleep for another 3 hours.

All this behaviour sounds somewhat normal, except it was all extreme, including the unsteadiness and the jumbled words. Was it a mini-stroke? Is this to be expected? How I wish I had a nurse on call to come and see episodes like this.

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