Long Term Care Parkinson's

Making Decisions

The last week has been a turbulent time for me and I had to make many difficult decisions without having all the facts. My friends know what had happened and they all tried to give me their best advice – I really am grateful for my friends.

The Main Objective

After several years of living well on my own with Parkinson’s, with Fraser Health providing home support, my disease progressed and after several falls I moved to Kiwanis long term care home, my first choice on the Fraser Health waiting list.

I started the process by arranging a meeting with the Director (this I thought would be the normal thing to do – see, I was still thinking like a business person with status in society, rather than just Resident #X123 that I had now become), sent her a copy of Parkinson’s Canada’s guide (Every Victory Counts) and explained what I understood what was required:

Canadians living with Parkinson’s, their care partners, and the families and friends of those living with Parkinson’s want reliable and practical information that will help them live well with Parkinson’s. The Canadian edition of Every Victory Counts® is the gold-standard resource to do exactly that.”

I wanted to know if Kiwanis was in sync with the EVC standard of care and what my obligations would be, ie what they would require of me. My understanding is that in principle they are, but there are the realities on the ground to consider.

Once one moves into long term care, one is by definition a late-stage Parkinson’s person. It does sound scary but one has to face the reality. One looks, talks and moves like a person with limited intelligence.

For me the main issue is that in the final stages of the disease, the traditional Parkinson’s medication is less effective and needs to be adjusted regularly if one is to achieve some level of quality of life for how ever little time one has left.

This requires access to knowledgeable healthcare with fast, flexible care arrangements. And this is where the realities on the ground come in…

Whether anyone has read or looked at the Parkinsons Canada guide, I don’t know but I have yet to find anyone willing or interested to discuss it with me.

Other than tremors, most of the Parkinson’s symptoms are non-motor and not visible. In my case pain is a major factor, sleep is limited, and the “off”   periods frequent and longer.

By way of illustration of the system’s inadequate response, my physician had referred me to the Parkinson’s clinic at UBC. After being on the waiting list for years (my referral got lost several times pushing me to the back of the waiting list again) I finally got an appointment. The specialist gave me a new prescription and I was expecting to feel much better, they are the experts after all – I felt worse not better so I knew I had to go back to the clinic. It took several months of agony until I finally got to see the nurse practioner at the clinic. She would not comment on why my prescription was not working but gave me a new prescription. Then followed the saga of trying to get the staff here to use the new prescription correctly, not their fault as it was confusing, but it illustrates the inflexibility of the system. In all this time I have yet to be asked by anyone, how I was doing, how was the new medication working out, etc.

As I wrote elsewhere this last round of incidents left me entirely demoralized and I could see no other option but to leave. I felt I was better off when I was on my own in spite of the risks, if I died in the process at least I left with my dignity intact. I made my own decisions, managed my diet and medication thanks to my smartphone helping me. And at least I could have a shower every day rather than once a week.

A friend suggested that I stay in an hotel for couple of days to regroup. I was really tempted – she knows how much I like to soak in the bath and feel the pain drift away. I could not afford that luxury. I am facing a heavy dental bill that I have been trying to postpone to the new year but has become urgent.

So back to the decision. I had a long talk with my son, I am so proud of how mature he has become. If I left, where to? Would it be any different elsewhere? Should I stay and try and talk to management, or would I be seen as a troublemaker?

The whole healthcare system in BC is in trouble, this is the new normal I guess. There is a shortage of health care staff and specialists in particular. I am just a very small cog in this system, and resource-strapped on top of it all.

One must be grateful for the things that do go right. It is a lovely facility and I’ve met some friendly people. For the most part I am allowed to do my own thing which I appreciate. I will continue to offer my skills where I can. As to my aches and pains…

It won’t be long now!