CaringCV

A bad day all around. Started off ok, sleeping in a bit and then a  good breakfast, but after that I started thinking about the situation and, feeling vulnerable, spent a little time crying and sniffling. However, as the rain softened the day, we got in the car and went off to buy potatoes at the farm stand. To my surprise, this went really well, with Don helping carry the basket and being very helpful and cheerful.

However, a few hours later, it was all to change with strange delusions about the car and the neighbours’ garage, and I don’t know what all. I tried all kinds of things to reset the broken record – from food to music, but nothing worked. Extra medication made a little difference and to this time, 6 hours later, delusions, rambling, and fear continue. I am just about at the end of my rope! Certainly the end of my patience.

A peaceful, pancake-stuffed morning. After breakfast I am taking a few quiet moments with my jigsaw puzzle, when my love looks up and earnestly asks, “What is your name?” “I’m Delores.” “de… DeGlorious?” (we have a friend we affectionately call “Glorious.”) “Delores.” “Oh.”

*

“What’s this?” my love, the former carpenter asks, picking up a tape measure. “It’s a tool to tell you how long things are.” “Oh that’s interesting, how does it work?” “Well there’s a tab you pull out, that gives you a measuring stick.” “Where?” Much fumbling and pulling at various bumps and edges ensues. “Here,” I say, having pity and losing patience at the same time. “Oh,” he casts one glance at it and puts it down, turning to talk about breakfast.

Ironically, one of the first indicators I had that things were going sideways was when he began to cut boards incorrectly. He had annoyed me with his insistence on measuring to the sixteenth inch, but suddenly he was usually out by inches, or even feet, and often requiring a trip back to the mill for more boards.  I started dropping whatever I was doing and rushing to help him, every time he had to measure and saw. That was about 5 years before diagnosis.

*

There is a gentle stroke on my shoulder. I open one eye and see it is 4:30 in the morning. “Are you okay?” he asks. “Yes,” I say, “I’m fine,” and I roll over and go back to sleep. Four minutes later, the scenario repeats. And again. (In retrospect I realise I should have used the word “Okay” instead of introducing more confusion with “Fine.”) Twenty minutes later, the scene repeats, but this time I mutter, “Well, I would be okay if someone wasn’t waking me up to ask me how I am.” “What?” “Oh just joking,” and this time we sleep for an extra two hours. That morning, he hugged me and said, “I am so glad you are okay. I was so worried. Oh boy, (affectionate chuckle), oh girl!”

*

In the old days, I often had tough deadlines and a lot of work, and my love would scope out the scene and quietly cook dinner and then clean up, while I went back to work. Last week, just as I was packing up my papers for an important meeting the next day, I discovered an accounting error. My love wrung his hands and said, “I wish I could help you but I just don’t understand.” I cooked dinner, and then got up from the table and went straight back to the computer to track the error. My love came in, surveyed the scene, and silently went out.  In a few minutes I heard him, quietly, slowly, and steadily picking up one dish, washing and drying it, and picking up another, and washing and drying it. Over and over. When I emerged, problem solved, I found all the dishes arrayed on the counter, each one separately laid out. How happy I was to tell him that he had helped me very much.

I owe it to those who read this blog to note that the last 2 weeks have been very peaceful, in comparison to the previous month. There have only been a couple of tiny upsets, and we have mostly been sleeping through the night (Hooray!). Except of course for Don’s habit of getting up at six, wanting to get the coffee, occasionally spilling it, and then falling fast asleep again. Maybe he feels that with me then awake and alert it is safe for him to sleep. That is kind of tiring, but nothing like the scary events of earlier.

This peace is brought about by drugs. I know the Alzheimer’s Society is very against drugging patients, but, frankly, what else are you to do? If it wasn’t for drugs (an anti-depressant and an anti-psychotic) my love would be in the hospital waiting for a secure care placement and raving his life away. That unhappy situation will come, I suppose, eventually. There is the tension that one never knows at what time, day, hour, the drugs will stop “working” and we will spiral into fear and delusion again. But in the meantime, life is bearable and he is almost happy to be here with me at home, although somewhat unconvinced that this is “home.”

I, on the other hand, think I can see a precipitous decline in his mental capacity — oh it is more than “think” — he now asks directions to the bathroom in this house where we have lived for 8 years. Thank goodness he asks! I suspect this is the payoff for my long standing policy of trying to never show surprise at what he says or asks. I always wanted him to be comfortable asking, rather than hiding whatever was going on – or not – in his head.

Seeing this decline, I know that in a year or two, at most, I will be freed of this heavy burden, when he does have to go into long term care, and that gives me a sad sense of relief ahead.

Comment (JM):

I visited Ken yesterday, when he saw me he said “where’ve you been” as he always does. He lives in the moment & feels he has not seen me in ages. We went to happy hour and listened to the music. I told him my birthday is tomorrow! Then they played “The-Tennessee Waltz & he asked me to dance. It was just as if he was well again, he swept me around the floor, never missed a beat and sang me the song word by word. For a moment in time it was as it was. I have loved him since I was 17 (well mostly!!). Many times he is still my old Ken, but each moment like this is so precious and I am so grateful for all the years of fun and adventure.

After breakfast my love sat down for his usual morning nap, but woke up in a gloom: “I’m afraid.” (This has become one of his most common statements and I find it very sad.)

I asked what he was afraid of. “I’m afraid we are going to have to kill some people.”

This was a bit startling, but his caregiver arrived to take him to the Day Program – he cooperating somewhat unwillingly – and the day progressed, although he was “edgy” for most of the day. In the afternoon I lay down with him for a nap, hoping that would switch the channel, and it did, but in the wrong direction.

The problem emerged full-scale, sputtering and urgent: “We have to stop killing people. What is wrong with you? Why can’t you understand?” I was absolutely unable to respond in any effective way at all, quite stunned, my mind numb. I did get him dressed and out to the living room, knowing and glad that my friend Sue was still in the house. I was somewhat frightened, foreseeing hours of facing this anger alone, because she would have to go home at some point.

Sue came out and did a bunch of affirmative listening…”Yes bad things do happen in the world.” “But there are lots of good people too.” Sort of interrupted the growing spasm of irritation I was facing, perhaps feeding.

The monster rumbled off, and in a half hour came back, chastened, and pulled me aside to say, “I don’t know what happened. I was thinking about eating, but of course everyone has to eat.”

But he ate very little mac and cheese for supper that night.

We had been feeling very hopeful around here in the last few days. After the last serious episode, I phoned Seniors Health for help, and promptly got a major increase in the quetiapine prescription. Don almost immediately returned to his character of earlier days, child-like, sunny, mostly cheerful, and cracking little jokes. A joy to be with, actually.

His caregivers and I were thinking “We can handle this at home; after all a care home will only give him drugs,” until I had a serious chat with the family doctor. She said, “Hmm, yes but there are other considerations, including your own health. But more than that, these drugs won’t work forever and he will need more and more physical care.” Which of course, I have been quite clear I do not want to do, and most possibly cannot, not being very strong. We also talked about Don’s weight gain and she pointed out that if he enjoyed his food, that was great, and he should be allowed to have whatever pleasure he can get. Before that, she had checked in to make sure I understood and remembered that this was a fatal disease.

All rather difficult and thought-provoking, but nothing like last night. We had just been discussing Habilitation Therapy, where caregivers try to join the patient in their reality, in order to keep them calm. So it was ironic, when last night my love and I spent an hour searching the house for possible animals that might be lurking in the woods waiting to eat him. He was pretty calm about it all, although I was actually afraid to do anything else except join in the search because there was a layer of mad irritability underneath. (Saw that with my dad too – if you contradicted him his eyes kind of glittered and he got mean.) I had to sadly say, over and over, that we did not have a gun while being ever so thankful that we don’t! He started looking for a stick but kind of forgot – I think because it was all so eerily calm – and eventually we returned to bed.

Worse, this morning he actually remembered the scene and nodded matter-of-factly at how we had been up last night looking for animals. Perfectly reasonable thing to do.

One of the first things new caregivers are advised is, Keep a journal. Record drugs, events, actions, so that you have a record to share with your doctor and case manager.

And, I would add, that record is very revealing for yourself too. Glancing over my journal for the last four months, I was startled to realise the number and intensity of what I am now calling “Blow Outs” (Guess that’s the oil and gas influence!), a BO being a fit of rage, intense fear or delusions, waking nightmares, and general calling out of we the caregivers. We all really appreciate being called whores and liars. Makes for a lovely day. several of these incidents are chronicled here, but there were, according to the diary, many more.

Oh sure, there is the week in January and another in April, where surprising calm and gentle peace prevailed, to everyone’s surprise and enjoyment. But along side those good times, there are 3 BOs in January, 7 in February, 4 in March, and 6 in April. I haven’t gone through the caregivers’ day books, so there may be even more. That’s a lot of stress for everyone and much more than I realised as I run-in-one-spot to cope with daily life.

“I had a big fight with Debbie today.”

“Oh, that’s too bad.” (Our friend and caregiver Debbie had already told me that she no longer felt safe driving in the car with him because he had gotten so angry.)

“I told her I was leaving.”

“Oh, sounds like you were angry. Why?”

“This and that, I don’t know.”

The next day I mention that he had had a fight with Debbie, and he became worried: “I sure don’t want to lose her.”

Earlier that morning he had insisted, “You are hiding something from me, there is something you are not telling me.”

So I took a deep breath and said, “You’re right.” I told him a very short version of the evil evening: “You kept asking me how many people I had killed.”

“I must have been dreaming!”

“Yes, but you wouldn’t wake up. We sat up for over an hour….”

After a long ponder, probably about an hour, he came back. “Well, I don’t know who did that, but I guess we have to just go on. It is going to ruin my good name, but what can I do?”

I can hear folks now saying, Why did you do that, why tell him what he can’t understand? But we have been partners for 35 years, and I feel so much better now for having told him there was something wrong going on. He is forgetting it as I write but my conscience is lighter. And I know he understood that this was a bad and dangerous situation even though he could do nothing about it.

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.