CaringCV

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.

I started writing this blog as a kind of desperate move, realising that I probably never would get around to writing the book I had been carefully keeping notes toward. Now it has turned into a therapeutic exercise for me, and I feel comforted in knowing that many people are reading this and, in that way, keeping me company as this story unfolds, to its inevitable bleak end.

Also, before I figured out how to get Seniors Health (VIHA) more heavily engaged in our problem, and before I found the great caregiver help I have now, thanks to the CSIL program, I spent a lot of time feeling sorry for myself. I thought the partners of those with dementia were expected to just bury themselves alive with their dying spouses, a kind of living “sati.”

But enough of this — I am doing what writers tend to do best, “not writing” about last night’s episode.

After a rather challenging day, including several hours spent at Emerg  (good news – no problem), Don went to sleep at about 10.

I stayed up for awhile and was just at the sink, tidying up the kitchen, when I heard a loud “crack.” I turned around to see my love, standing with his walking stick upraised ready to swing again. I cried, “Stop, Don. Stop. It’s Delores, I am Delores,” but for many seconds there was no recognition in his eyes. Then, slowly, there was puzzlement, and then, he lowered the stick.

I took a deep breath and we went to bed.

Accidents happen to people all the time, but this morning, I realize that I could easily not be here today, comfortably blogging about this close call.

It’s been a long time, it seems, since I wrote, and a few episodes I meant to record have now floated down the river of time.

But yesterday was memorable. We had a visit from our geriatric psychiatrist from Seniors Health – another example of the health system actually working wonderfully. As we settled down, my love explained earnestly about all the dangers in the clouds, the weird colours and things that get dropped from them, and then the doctor did the usual — the mini-mental test used to gauge the state of mental deterioration.

All of we caregivers have been aware that my partner was getting worse (and  quite irrational, angry and anxious – well, obnoxious to tell the truth – about the whole situation. Sometimes downright abusive.

The evening before last he had asked me five times if I “knew where Delores was?”

But as the test proceeded, my jaw dropped and I fell into a kind of stunned silence.

He remembered his name and birthday, although somewhat unsure of the year. Did not, of course, know the current date or the month, he knew we were in a house, and he could name the pen and the watch. He did take the paper and fold it and put it on the floor, but the rest was pretty well complete incomprehension. One question asks the subject to read and do what the sentence says. Printed in huge letters was “Close your eyes.” The silence lingered, and then my love – the writer – ventured, puzzled, “cloud” and “E Yes.” Altogether, a score of under 10 out of 30, indicating severe dementia, whereas he had been scoring 25 for the first 6 years of the disease.

As for drawing the clock, (another  standard test, which he has always done, although less and less well) not only did he not draw it, he didn’t understand the instructions.

The nurse said Don seemed definitely worse than when the nurse was last at our home a month ago.

Later the psychiatrist gently explained that it was time to withdraw the donepezil (Aricept) since there was no longer enough brain cell messaging for it to do any good. The drug might now be causing anxiety rather than helping.

And. he said, the time had come to focus on my own health. That it seemed Don was on a steep decline now.

As we sat that evening, my love asked, “is something wrong? you seem different?”

“Yes,” he continued, “you seem sad.”

These days short term memory is literally non-existent when applied to the activities of daily living. It is rather eerie. Also longer term is pretty hooped — My love asks to be directed to the bathroom almost every time now. But when it is a matter of emotional impact the memories linger, no  matter how distorted.

And then there’s pie. The pie sitting on the counter was not only remembered after a nap, it was remembered in the middle of the evening, TWICE…It was remembered over and over until it was all gone. The memory of eating that same pie for dessert, however….that memory was ….well, let’s just say it was proof of my insanity to even suggest he had already eaten pie that day!

This morning, after a very agitated yesterday — downright nasty to the long-suffering caregiver — my love slept over his morning coffee for an hour or two, so still it was as if he was absent. Then he staggered softly into the kitchen and said, “I’m dying.”

He has said this often over the last year or so, and our usual response has been some sort of bracing, “Oh, everyone dies eventually, but we don’t know when.” I tried that, but he looked at me and the words on my lips evaporated. And I said, “Yes.”

He asked, as he so often has, if the doctors could help, and this time I said, “No. They might be able to fix your pills so you feel better, but they can’t stop the disease. It’s like cancer – sometimes the doctors just can’t do anything.”

He nodded sadly, and said, “I’m afraid.”

I suddenly wonder if the terrible anxiety, the refusal to let me out of his sight, the visions of fires, and the constant fear are actually based on his fear of dying. I wonder if therapy can help those with dementia?

“Sometimes people just die quietly in their sleep and it really shouldn’t hurt at all.”

After a long calm silence, he said slowly, “But I wanted to help you.”

“Oh my love, you have helped me, for thirty-five years you have helped me. And we have had a good life together.”

This prompted a startled look — “Three years? That long? I thought it was only a year we’ve known each other.”

By now I am crying and I told the truth, “I don’t know what I am going to do without you. But …” (remembering that he needed to be set free), “life has a way of going on. It will work out. You know how life does.”

“Don’t cry, babe.”

[This is a fuller account of a phone call I referred to last week.]

Last night my agitated love’s oldest son phoned. He’d read the blog and was checking in, out of concern. After we talked, he said he would like to talk to his dad, and they talked quite awhile.

Don came back happy and relaxed and said, “That was Clarence, my dad.”

“Oh,” I said, “It was Kevin, your oldest son.”

“Well, my grandfather then.”

“Uh, ok.”

“It all changes around all the time you know.”

I finally calmly agreed, and he nodded off peacefully.

And stayed happy and content all night. No more lectures about cars or leaving for home.

And the son shall be father to the man. 

Last night Don’s oldest son phoned and they had a long talk, I don’t know what about, but Don was calm when he got off the phone and quietly went to sleep. I thought: “And the son is father to the man….”

But this morning he was right back at it, worrying about the car and the garage and how we would get the car into the house and how to get the gas out etc. At 6:10 am.

As soon as possible I phoned the Seniors Health nurse and he came out to the house for a visit. This too seemed to calm Don. The nurse advised on medications and arranged some other interventions, like encouraging me to take more respite. Later I told Don we needed to take separate holidays and he needed to go the care home for a week so they could observe him and he said, yes that makes sense. So we’ll see.

Takeaway is that VIHA does have some things right — and the system works. Just a few months ago I was wishing there was someone I could phone during unusual occurrences, and — loo and behold, there is!

Help is there and that makes me feel much better too.

Now I have to go because my love is back in the garage again this evening, “looking at the car” and slamming doors.

The next morning, despite almost a doubling of all the meds, we – he – continued on about the car, and going to get our car, and what kind of egomaniac was I to leave our car (at some undetermined location.) This slowly evolved, after breakfast, showers, and other diversions, into a simmering temper and a cheerful determination that we were leaving for “home” soon. Home at some unknown and unspecified location, of course. And accompanied by an explanation that he was very very afraid of just about everything (which is true and must be an awful way to live).

By then I was torn between getting him into a care home as soon as possible or just dropping him off at the Emergency Room immediately. Too bad they don’t have boxes for unwanted dementia patients like some of the churches do for abandoned babies.

I felt myself getting quite sick, and that calmed Don down again, although — Note to would-be nurses – being asked if you are ok every 2 minutes does little to help the patient!

Some Gregorian chants helped calm my stomach and his overactive fear factory. But did nothing to change the determination to leave for home.  As well as pity and anger at how stupid I was not to know what he was talking about.