Monthly Archives: March 2015

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/