Monthly Archives: February 2015

This is just an account of a few days of tough sledding, nothing unusual really but I sometimes find it easier to write on this blog than in my journal.

The last few days were a bit chaotic. We had a small family visit (5 people) on Saturday, which was very nice, but pretty exhausting for Don, who slipped in and out of knowing who was who, and by the end could hardly walk.

That evening, despite his wobbliness, we coaxed him out to dance with our favourite band, Celtic Cargo, at Zocalos, which is a small enough spot that everyone pretty well knows him, and he is safe in the space, allowing him to dance around the room. He danced all night, although taking rests and enjoying the party. One of our caregivers came with, so that I actually get a chance to relax and enjoy the music too.

The next day, the last of the family visitors left, and Don slept, as expected. But by Monday afternoon, things went a bit haywire. He confused opening the mail box at the road with starting the car, as far as I can figure out. After mucho discussion about keys — which, where, what — and several demonstrations that the car really did start, he came to the startling insight that “I must be losing it.”

And that night became another night from hell, especially for him. I gave him the evening half quetiapine, but at 1:30 am he was wide awake and terrified. Shaking with fear, prowling the house with his stick thumping, looking for intruders. Totally afraid of the dark, and absolutely sure he was going to die, or be killed. Couldn’t quite make out the scenario playing in his head because it shifted all the time, but the fear was real (and to be honest, exasperating). Another half quetiapine made no impact.

“I know they are coming for me. They are going to take me away”

“Who?”

“The police — they will either send me to jail or an asylum, I don’t know which.”

Two hours later, I gave in (and up) and gave him a lorazepam and by a quarter to five we were both asleep. As the sun started to peek through in the early morning, I quietly turned off the light.

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.