Monthly Archives: September 2015

Over and over and over, night after night.

“Do  you have enough money to pay the people?”

“Ah…. what people?”

“The people who own this house, if we are going to stay here all night.” or, “I don’t know if we can stay here all night. The people might come back and they might be angry.”

To this basic conversation, I have experimented with a variety of responses.

“We own this house, it is paid for. Everything is all right.”

or, “Yes, I talked to them and it’s ok.”

or, “Well, I think it’s ok for tonight.”

In all cases, the response is apparently unsatisfactory and the record repeats several times, until there is a break, an astonished pause and a look around the room, and with a smile, sheepishly, “Oh this IS our house, there’s my chair.”

This conversation has lately had me musing that perhaps Dementia Care would be a good alternative to Chinese water torture if the State wanted to broaden its repertoire.

On a more serious note, it may be that these kinds of conversations, which make it blindingly obvious that Don no longer knows where he is, have made it easier for me to accept the “respite” that the system has offered. The word in caregivers’ circles is that caregivers are “entitled” to four weeks respite a year. The system keeps a few beds open for the purpose of trying to save the caregivers, by giving them some safe time off.

I have never tried to take a long respite until now. I just couldn’t figure out how to get Don to go, but, desperate times (and high blood pressure) lead to creative thinking. I also noticed last year how very comfortable Don was in my father’s retirement residence. The Lodge is of a similar atmosphere — although with a little less luxury and a lot more staff.

This morning, we got up, ate breakfast, and as I helped him dress, I explained that he had to go to “The Lodge” for a week. Blithely, I lathered on the therapeutic fibbing – I was going away to a meeting in Calgary, and The Doctor wanted him to go into The Lodge for observation to make sure his pills were right. All this seemed to make sense to him, and his only caveat was that we not go to “that place I hate.” We had tried to send him to the Adult Day Programme at another Lodge with dismal results, although he allowed the other “old men” in the group were ok.

So, somewhat surprised at how easily this was going, I whisked him and his bag into the car, and we headed off.

As he contemplated his fate, he cautioned me, with great love, not to let the people take advantage of me. I kissed him and reassured him, and then, we were in!

The nursing staff took over, and Don bravely responded, sometimes with little jokes, and lots of patience. An hour or so later, I left him, hopefully making new friends as they all waited for lunch.

The nurse hugged me as we walked out, and I got back to the car, and burst into tears.

At breakfast, Don is staring intently beyond his plate. There is a library book there but it is sideways to him. (He often tries to read upside down, now.)

I ask, what are you looking at?

La…Va…LaVerne, he says, naming a cousin and best friend from his boyhood, and pointing to “Vancouver Island Public Library” on the book cover.

Brightly, I announce, “That says ‘Vancouver Island,'” and brush away a few unexpected tears.

Later that day, returning from a little light-hearted shopping trip with a friend, I was met by towering anger, and sad gestures from the caregiver, “He just flipped – everything was fine until 10 minutes ago,” and once more my heart twisted, this time in fear and impatience: “Oh no, not again!”

The next morning, I thought bitterly of Briony Penn, when she rode a horse near-naked through the streets of Vancouver to save a forest, as she told the press, “I have a Masters decree in biology but you don’t want to talk about that.” I thought to myself, “I have a Masters degree in English literature and social change,” and I have just spent half an hour convincing my partner that the two legs in his pants go one on each of his legs.  Got up at 8, and by the time we had breakfast, showered, and got dressed, I was completely exhausted.

But earlier that morning, we had spent a lovely half hour in bed, not talking, peacefully holding hands and drinking our coffee.

As I hopped into bed last night, after a pretty good day, a small voice from the blankets beside me asked, “Who are you?” I looked to see if it was a joke, because “Who are you?” has been a joke/defense that Don has used for years, ever since diagnosis. But no, this time it was serious. I explained that I lived with him as his wife. A blank stare was my only response. I went into the bathroom, hoping that things would “reset” if we started over.

No such luck. My introduction and explanations were met with more blank and slightly suspicious stares. Finally I said, “Well, I don’t have anywhere else to sleep tonight. Do you mind if I just lay down beside you?”

This was greeted by a reluctant, “I guess that’s all right,” and he turned away and went to sleep. I lay awake most of the night, wondering what the morning would bring.

The next morning was very normal and he knew who I was, except he had no idea what my name was. Interesting.

Overall, the last two weeks since the doctor lowered the dose of donepezil, as part of taking him off it altogether, have been a major improvement. No major blowouts, and much less anxious repetition. I can even clank a pot in the kitchen without him rushing to ask, Are you hurt? Now he asks, Is everything all right? indicating less ominous dread. He is however, still convinced that something mysterious is going to come out of the clouds and kill us all, but is resigned that there is nothing we can do about it.

All the caregivers are reporting better times, sometimes even enjoyable times, and the few blow outs have been minor and quickly averted, sometimes with a small extra bit of quetiapine.

We are not walking on eggshells anymore, so the stress levels are going down. But there is still an underlying madness, a delusional anger that sometimes suddenly pokes through. One caregiver describes it as just as if something “flipped” out of nowhere. He can be fine, sunny, even enjoying himself one moment and the next, scowling and irritated, potentially ready to blow.