Long Term Care Parkinson's

Quo vadis again

My health advocate sent a letter via email to the director of care expressing her concern about my deteriorating condition and the lack of access to a physician. This letter was intended to draw attention to what she perceived to be a problem.

As my health advocate she was fulfilling her function – it certainly drew attention! But it also ruffled some feathers. I can still here my mother say, “if the shoe fits…” They wanted to know if I wanted another physician?

Of course not, I replied, I just want access to a physician!

I really don’t like conflict and now I have this added to my plate in addition to all the other issues that I have already written about.

My son came to visit me today. He is recovering from hernia surgery two days ago. I wished he would have stayed away and rested a few more days but I could not wait to see him. He asked if I had written this up in the blog. I realized that I have neglected my journaling – I have done a lot of other writing as you can imagine – but back to the journal.

Because the letter was taken as personal criticism I felt compelled to write a follow-up letter. No one is perfect, so one needs to be prepared to accept that someone points out a perceived problem. It may be a specific individual is implicated, or it could be a system problem. In this case I believe it was mostly a system failure but also an organizational culture problem, which is of course reflected in the system.

Organizational Culture

On the culture side, I was told by a staff member that 90% the patients here are demented, you can’t expect them to contribute anything! It certainly is true that many people here have some level of dementia, it is one of the reasons for being in a care home. However dementia is not a disease it is a symptom. The amount and type of disability depends on which part of the brain has been damaged. It is important to understand that dementia is really a spectrum. Different people fall on different parts of the spectrum.

In my case with Parkinson’s the nerves in the brain stem seem to be affected first resulting in loss of smell and appetite, poor control of facial muscles (my table companion lamented that I should smile – I said I was smiling), double vision, and difficulty with speech, poor balance. But I still read medical research papers in English, Dutch, German, French, and Spanish. Where does that put me on the dementia spectrum?

In summary, we are not patients but residents with varying degrees of disability.

It is often difficult for people to relate to me if they only look at my physical limitations. I am also very aware of them so I tend to withdraw to avoid making people uncomfortable. Yet like so many of us that I have spoken to, we want to feel useful and have skills and experiences that we would like to contribute. But instead we are often spoken down to. Does one just give up and let them treat you as 90% demented?

My situation

When I moved here I submitted a copy of Parkinson Canada’s guide for the treatment of Parkinson’s Disease (Every Victory Counts) to management and asked if they were aware of the document and what they would expect of me.

As a result of a difficulty of accessing appropriate medical support I identified another book, a guide to assist people with Parkinson’s and their physicians to identify the best treatment regimen for your particular stage of Parkinson’s and how to address any complications.

So for the record I stated that I wanted to use the EVC document as the standard of care and the The New Treatment book as the methodology to implement it.

While I am very knowledgeable of brain physiology and the pharmacology of the drugs currently available for the treatment of Parkinson’s symptoms, I am not a physician and would need the assistance and care of a medical doctor.

I presented this to the director of care in response to their concerns about my health advocates letter.

During the discussion it was pointed out to me that of all their patients I was probably the healthiest and there were other patients with real serious problems. That there are people with serious medical conditions is certainly true and when one’s resources are limited at a point in time some prioritization of treatment and services may be necessary, many of the Parkinson’s symptoms are not visible. I have been working hard at improving my symptoms in spite of dealing with constant pain and lack of sleep. This lack of understanding of Parkinson’s is not uncommon, it is still rather disappointing to still have to experience it here.

It is not all doom and gloom though. I stressed that I was grateful for how Kiwanis has accommodated my rather odd eccentricities, and that I had some business and technical skills and experience that I would be glad to make available to Kiwanis staff and residents for as long as I am able.