The last few days have left me aware that the biggest failing in this dementia care picture is that we just don’t know what to expect and when. I wish I had a nurse on call 24 hours a day so I could see what certain behaviours mean, and what they portend. However, I don’t suppose it would help, since as the saying goes, “You know one person with Alzheimer’s; you know one person with Alzheimer’s.” Each person, each brain, is so different.
So what HAS been going on? I guess I would call it as a sudden drop in perception. Here’s the overall picture.
A month ago, on medical suggestion, I upped Don’s dose of quetipine, adding a half pill when he went to sleep at night. This seemed to bring some peace to our nights and for a few weeks we both slept through the night, and it was lovely. I hadn’t realised how stressful it is to be constantly awoken and greeted with paranoia and hallucinations, until we had those couple of weeks of sound sleep. But that was to change.
A few nights ago I was grieving for my father who recently died (a “soft landing,” in the end, so as these things go it could have been much worse.) Somehow, Don got the idea that I had a friend in Ottawa who was dying and I would be going to visit. (Now, if I had been quick- witted enough, I might have grabbed the opportunity to take another long break, because life is such that even a quick trip to attend my dad’s bedside was a relief from the constant pressure here at home — a holiday.) Anyway, after Don finally understood that I was not going away, he slept pretty well straight through for 16 hours, waking up to be with his caregiver a little, and to eat. He said he thought he was dying.
The next night, all hell broke out. Hallucinations, anger, and a complete loss of words, leading to more frustration and anger. Trying over and over to ask questions and express great fear about something wrong, something broken….
After a while he mumbled something about being afraid of the animals watching “Can’t you see them? What’s wrong with you?” And a little later something about them watching to eat him when he died. Horrible vision.
He finally went back to sleep, but awoke in the morning utterly unable to form a sentence. Finally about 10 am, a clear sentence came out, and his ability to speak sensibly, although simply, returned. Was this another mini-stroke? It sure seemed like that — so sudden and extreme a loss of ability, and then the recovery. Somewhat like what happened after the first ones so many years ago, when at first he could not write properly but the ability returned within a day or so.
Last night was just tiring, not so extreme, but to be honest, annoying.
He seems to have lost huge chunks of understanding or knowledge, getting lost in the house, not quite remembering food, just generally being very confused almost all the time.
So we go on. All lights shining bright, but not so bravely as before.