Long Term Care Parkinson's

Eventful Time

A lot has been going on since I last posted here, some good and some more problematic.

On the medical side we have a truce for now. I had explained to the doctor many times that key to my care are two books, one describing the standard of care and the other actual treatment protocols to be followed.

Eventually I got verbal agreement, “don’t worry Heidi, we’ve got your back”. But I could see there was no real understanding of what I was saying. It was way out of their comfort level. Somebody who moves randomly all the time, drools, and struggles to speak properly surely is retarded and cannot participate intelligently. It has never been done like this before…

Management Style

So I have nothing in writing confirming what was supposedly agreed upon. This seems to be their management style, put nothing in writing.

I understand the risk of litigation, but it leaves the resident totally unprotected. They can always say they did not say X or that Y did not happen like that. Then it is their word against that of a demented old resident whose head is bobbing, and can’t pronounce words properly, if she can find them at all. I think it is a cowardly management style. And it stiffles innovation, responsiveness and inclusivity and thus prevents Kiwanis Care Centre from achieving the excellence that it set as a goal for itself.

It encourages a self-preservation outlook more typical of civil servants, who tend to protect their jobs by not sharing information they fear would no longer make them necessary, they don’t take on work that they think is not theirs or that would make them work in their own time. Because of their insecurities they won’t admit they don’t know something. They crave praise and don’t take suggestions from others kindly even when they might learn something new. They would often put the person with new ideas down, even disparaging them using blatantly false information typically in their absence so that they cannot defend themselves.

You end up surrounding yourself with a team of people avoiding innovation, inclusiveness and being responsive when new situations arise. And as a result your organization becomes mediocre, often not able to survive when faced with new challenges. This malaise is beatifully described in the now classic text “The Peter Principle” and in Peter Drucker’s “Managing the Not for Profit”.

Dr. Burns Availability

In the discussions about my proposed treatment system (pts) based on the two books that are the gold standards in the movement disorders medical community I had mentioned typical health concerns that persons with Parkinson’s have and why there should be easy access to clinical oversight.

In passing I said that implementing the pts at Kiwanis under difficult circumstances would be worth a paper or two. He had no interest in publishing papers as he would be retiring soon. So back to the drawing board…

For example, owhen the symptomatic response to levodopa suddenly becomes irregular or hardly working at all, it is typically caused by an underlying medical condition like pneumonia, covid or a UTI rather than by Parkinson’s because it progresses slowly. So they had me tested and indeed I have an infection. Maybe he is really going to be “having my back”!

Another problem area that I have complained about was constipation. I have been trying to do the normal stuff: exercise, drink lots of water, I have nagged the staff to get laxatives, prunes etc.

But you know you have a problem when your stool is so hard and compacted (Bristol scale 1), your last bowel movement was more than a week ago i.e. there is no bowel movement, your stomach is swollen and painful,  you have fever.

The doctor said I should take responsibility and ask when I need something. So I asked the nurse for a suppository. That did not produce anything. I could still have tried an enema, you know of who’s there, friend or enema fame?  But the cramps had become quite unbearable.

So I cut my fingernails short and applied liberal amounts of polysporin ointment (which was all I had as a lubricant) and over next half hour I cleared the anal passage manually. It was very difficult and painful, but I took it very slowly. I sat on the floor to avoid falling when I faint. So I took responsibility for my own problem. Doing it this way gives one an understanding of what Bristol level 1 constipation looks like.

Getting Things In Writing

I have constantly been on the local news, i.e. the watercooler. People talk and let comments slip. Or they come and make casual conversation but then ask questions about something they really should not have known about.

So when the Social Worker came and asked if I enjoyed doing the newsletter, several red flags went up. She as been  missing in action in my treatment although she was tasked with the implementation of the Parkinson’s Canada EVC Manual (I was to blamed for that as I tend to just do things). I had formally, in writing, requested that the EVC Manual by used for my care. I have not had a written reply or a formal approval/plan of action.

Seeing the red flag, I was very careful in my answers. She could not know about the newsletter saga – unless she had been sent by presumably management, I assume to sound me out. Management could easily have followed up on my written email, but rather opted to do it verbally, which to me is the cowardly way.

The Newsletter Saga

Let me give a quick summary of the newsletter saga. I had proposed a monthly newsletter for the residents. Several editions have been published and we were getting ready for a flashy end of the year edition with Winter as the theme. This is such a broad topic that I thought it would be fun. There are also religious festivals during Winter and we have some residents who believe that Jesus was born in winter and one could put some colourful Christmas design elements in the newsletter.

However I have been experiencing more and more reticence, even animosity, from staff, I knew I had to get it in writing. I wrote a letter covering the big picture of where the newsletter would fit in the overall strategic planning of Kiwanis and where it contributed to the day to day operations. I described my understanding what we had agreed to for the newsletter and stipulated which points I wanted confirmation on. It worked in that the manager so badly wanted out of the project that she responded, in writing, that I was completely wrong in my understanding of the big picture position of the newsletter in the overall Kiwanis operation space, and what we had initially agreed on during the planning stage and that made the points I wanted confirmation on, totally moot/irrelevant.

As I had sent my correspondence with a copy to the director, there must have been some discussion, and that was why the Social Worker, and several other staff members that I am known to be friendly with, suddenly came and visited with a sudden interest in the newsletter.

Of course a possible explanation is that the organization really does not see the larger value or potential of the newsletter, and therefore does not consider it enough of an issue to pursue and people were asking about the newsletter out of idle curiosity.

I like to think more of management, and myself, so I will remain an optimist. I have not forgotten that I have not had any reply to any of the other proposals that I have submitted. It might be they don’t like me personally or the fact that it is a new way of doing things, we’ll see.

RIP Newsletter

So the newsletter is formally dead. I regret that I was compelled to force the issue. The newsletter has huge potential but has had to pay the price. I am sorry for the staff who had believed in it and worked so hard to make it possible. I believed the newsletter was valuable enough that it at least merited a follow up meeting, which I was quietly hoping for. 

The manager gave me the only option of carrying on the newsletter on my own. Of course I could do that. I would have to bring my laser printer in. I would have been willing to do that if for example management said that they approve the project but because they don’t have resources now, would I run the project until say April when they would be able to allocate resources.

Parkinson’s Care Framework.

As I mentioned, I have not made any progress with the parkinson’s care model that I had proposed in writing. Eventually my Health Advocate and Power of Attorney suggested the a formal letter of complaint was the only way to get a reaction. As always she was right!

So we now have her 1) letter of complaint in writing. The director of care came to see me about the letter, again nothing in writing. But I wrote 2) a follow-up letter of clarification confirming that I was in agreement with the letter of complaint, that we had no objection to the doctor as a person but that the problem was his unavailability, and for the sake of completeness stated again that my treatment model was based on the two books mentioned. The issue of taking care of my own medication, while in terms of the Act under which Kiwanis is licensed, was legal, and operationally and technically possible, it was not the main issue.

The doctor came and saw me again. As I mentioned before that I rather liked him as a person and feel inclined to accept that he was genuine and meant “I have your back, Heidi.” But again there is nothing in writing from them. Do I write another follow up letter? I really don’t have the energy – Parkinson’s really takes it out of you.

I think I have covered the main issues. There is still the table seating problem, Pat breaking into my room, and a few other such problems, but we will discuss them next time.  On the positive side, my son Roland came to visit and he is doing better, Andree came later which was nice too. I have been pushing the exercise thing and my dystonia and neuropathy pain seems to have improved 🙂