CaringCV

After his usual breakfast with gusto, Don lay down for his nap, and steady snores soon took over the living room.

An hour or so later I heard rummaging and thumping and calling, and went to investigate. I was met by a very frightened man, his limbs shaking and his words incomprehensible. He didn’t know where he was or, at first, who I was. The extreme unsteadiness and fear continued for an hour, and finally he said, clearly, “Now I know what’s happening. I am insane.” I replied, “Oh darling, you are not going insane, it is just the Alzheimer’s.” (I always just call it Alzheimer’s — can’t imagine how I would explain the word dementia at that point in time!)

“No,” he said clearly, “Not going insane, I am insane.” A little later he added, “You need to be careful for yourself around me because I’m insane.” I assured him I was very careful for myself and he soon went into a deep deep sleep that continued for hours. He got up to have lunch with his caregiver friend, and then went right back to sleep for another 3 hours.

All this behaviour sounds somewhat normal, except it was all extreme, including the unsteadiness and the jumbled words. Was it a mini-stroke? Is this to be expected? How I wish I had a nurse on call to come and see episodes like this.

We had a home visit from the Seniors Health psychiatrist a couple of weeks ago and in the course of that visit and one with our family doctor, it became clear that there is one last task I need to carry out as a loving caregiver. I need to somehow get my love feeling comfortable with long term care, so that when the time comes that he can’t stay at home anymore, he is more comfortable with the care situation. I have heard before of many people with whom this helps.

Getting my guy to set foot inside a care home — for the day program or for respite — is something I just don’t quite know how to do. There was the time a few years back when we went to check out a day program and he recoiled in horror at the people sleeping in wheelchairs and said, “I just don’t think this is for me.” Ever since he has accused me of trying to leave him there.

Worse than the tactical problems though, is the emotional ambivalence it sets up in me. Having an outside estimate of two years for him to stay at home with me is both an overwhelming relief (after all I have done eight years hard time now) and a resonating horror. I swing from one to the other, and in between I stop at a place where I think, oh no, it is far too soon, we need more time together. Then I go to the place where I wonder how I have managed to survive so long, and whether I will have any of my own personality and feelings intact after another two years, and I swing back to relief at the promise of release or at least, parole.

Don, rolling over in bed, (gloomily): “I suppose I’ll have to go see the doctor soon. I’m certainly not looking forward to that.”

Adding (with apprehension): “He’s going to eat me.”

I always wondered why he would (aggravatingly) grin through his teeth and assure every doctor that he was just fine, even if he had asked for the appointment!

My partner with dementia and I are the recipients of funds from the Vancouver Island Health Authority to pay for caregivers to give me some respite from the daily grind. the Choice in Supports for Independent Living programme was designed for those who were disabled but needed flexibility with their caregivers, in order to go out, or change times of shifts etc.

In our case, as is true for many with dementia, the regular home care programme did not serve our needs very well, although the vast majority of the workers were caring and talented.

Here are a few of the problems we had:

* Workers changed from shift to shift (not a good idea for dementia patients, who have trouble enough tracking)

* Workers  could only come in the afternoons unless extraordinary arrangements were made

* Workers were not allowed to take the patients away in their cars

* When Home support was short-staffed, respite care was the first to be cut on an emergency basis, because obviously, getting pateints in and out of bed and medicated took priority

You must be recommended for the CSIL programme by your case manager. You will then have to do an interview or two, to establish need and that need, and the amount of care, is based on the need for physical assistance of the patient. (There is a formula by which they score this.)

If accepted, you will have to set up either a not-for-profit society to supervise the case, or exercise a power of attorney to do that. You will need to register for Revenue Canada (an Employer’s account) and Worksafe BC. You will need to open a separate bank account into which the VIHA money, and your contributions, are deposited. You will receive an official contract for providing this caregiving, which you must sign before anything happens.

You will need to set up a back up care plan in case you are incapacitated, and the workers you hire will have to have a criminal records check.

The fund will pay for a bookkeeper, so in reality, once you have taken these first steps, all you have to do is hire staff, keep track of their hours, and send those hours to the bookkeeper, who will do the rest. You will have to send a monthly report from the bookkeeper to the fund administrator in Victoria. The fund will not cover travel expenses or meals, only the workers’ time.

That’s about it.

The advantages for dementia care are:

* Ability to select staff, and keep the same people over time

* The availability of unusual work hours such as weekends or evenings, which is sometimes when you the primary caregiver would like to do things, and which are very difficult for home support to cover.

* The ability of staff to do unusual things — ours have taken Don to concerts, to dancing, and for many walks around the city, as well as accompanied us when I know Don will want to go home part way through a meeting.

* The right staff will do more than care give — they will cook, nourish remaining skills, provide exercise opportunities, research client interests for entertainment,  (records, movies, books), and with any luck they will fit into your home space comfortably.

Addendum, 2022: a welcome and needed non-profit in Vancouver, Individualised Funding Resource Centre, has resources, uincluding accountants and other help to get you through the process of applying and running a CSIL fund. https://www.ifrcsociety.org/

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.

We were lying in bed with our coffee, waiting for the house to warm up. This early morning coffee-in-bed time used to be my treasured meditation/get-ready-for-the-day private time, but lately I have been encouraging my love to stay in bed with me and enjoy the early morning light. That way, I can relax because I know what he is doing.

So we were quietly lying there, and I had slipped off into memories of old friendships, when he said, haltingly,

“These….faces….I suppose the doctors did that.”

“Hmm?”

“When I look, I can see myself all right.”

“Mmm. That’s good. Mirrors only show what is there.”

Thirty-five minutes go by, and I slip back in a doze.

“All these faces, did they do that to you too?”

“HUH?”

“When you look in the mirror, what do you see?”

“Me.”

“Oh.”

After about another ten minutes, there ensued a short discussion of age and the inside and outside of mirrors, with me promising, “I will show you when we get up,” as I wondered just where this was going.

We had a nice breakfast, and then the subject came up again, and we trekked off tot he bedroom to make faces at ourselves in the mirror. Actually in both mirrors because he wondered if it would be the same.

It was, and that satisfied, and then it was time for another nap.

However after about 20 minutes, he woke up and started talking about the two people “over there,” and it took me over an hour to realize what he was remembering.

This post is one I have been promising myself for months, so New Year’s Day seems a good time to do it. If you have additions to this list please get in touch and we will try to keep it up-to-date.

Support and information

Comox Valley Seniors’ Peer Counselling runs caregivers’ groups for those struggling with caregiving for dementia patients. They have been an amazing help and support to me here in the Comox Valley.

Alzheimer’s Society of BC provides occasional workshops on dementia, communication, these are invaluable, especially for those starting out. Highly recommended.

There are also a series of caregivers” teleworkshops by phone and/or on your computer. They are useful and they are available online, so you can glean information from past ones.

There are many more workshops and lectures and resources available on the Carering Voice Network, which carries information from organizations across Canada.

Financial aid 

There are a host of grants and tax credits available for people disabled with dementia.

There is a federal Disability Tax Credit — you should register for this as soon as you can, but it does allow for backtax adjustments to when the disability struck.

BC Ferries has a special fare for the disabled and their travel companions.

Via Rail allows the caregiver to travel free if the disabled person needs a companion to manage the trip.

ICBC offers a discount on automobile insurance IF the car is in both your names. To qualify for this, you have to register for the BC Gas Tax Rebates for the disabled.

If the disabled person was a Veteran in the Korean war, you may qualify for some Veterans aid – Health Care or Independent Living  especially if you are low income.

 Home Care

Health care and home care are administered by regional agencies in British Columbia. In the Comox Valley, you need to get your patient onto the Home and Community Care caseload and then the workers will assess you for home care assistance, which will increase as your need does. This leads me to other factors around home care, and I will write about the Community Support for Independent Living (CSIL) program in another post.

This is just a top of the head list, so there may be other programs that people should know about – get in touch and I will add them to the list.

Yesterday we went to a wonderful Celebration of Life for our activist friend Gwyn Frayne, who we both loved.

After the roar of the crowd settled down for the songs and speeches, (crowds overwhelm and frighten him) Don was very very attentive. He cried in a few places, but I did not see him laughing at the jokes, I think because a joke requires a long serial attention. Because our friend Norleen was with us to help with Don, I was able to chat with a few folks, and many people came up to speak with Don, who was happy at all the attention. He always was at his best surrounded by women!  People were asking about him, what he is able to follow, and I think they might find this interesting.

This morning he said, “So she’s dead now, our friend?”

“Yes, yes, she is.”

“Was she there yesterday?”

“Well, in a way, yes, she was, sort of.”

The lines between life and death are becoming blurred.

After a nap this morning he woke up a bit confused about where he was, and said, “I hope my mother doesn’t get lost here too.”