Monthly Archives: May 2015

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.