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Long Term Care Parkinson's

Care Home?

Who lives in a care home? Fraser Health defines it on their website as follows:

We provide long term care for adults who can no longer live safely or independently at home due to their need for 24-hour nursing supervision in a secure environment, and their unpredictable or high-intensity care needs which can no longer be managed in their home setting.

Long term care is not a housing alternative but a clinical care service, considered the last option in an adult’s journey.

https://www.fraserhealth.ca/health-topics-a-to-z/long-term-care

My Story

Don’t Judge a Book by its Cover

We are indeed blessed to have such an option for seniors. In some countries seniors are left to their own devices in the community. Long term care homes are not perfect. We often have cases of neglect and abuse on the news. There were many horror stories during the Covid pandemic.

To care for seniors is difficult and expensive. I will illustrate some of the issues of life in a care home by telling my personal story – I cover Parkinson’s more than I normally would but it is necessary for this story about care homes. (I left out important aspects of my Parkinson’s as they are not relevant here, but I am working on a post in the Parkinson’s category).

I always agreed with the concept that one should stay in your home (for me that was Dunwood Mansion) for as long as possible, and bring in care support to help with things you can no longer manage yourself.

I was determined to stay at Dunwood to the bitter end. This was working well for me, but Parkinson’s had other plans. As the disease progressed, it had become increasingly difficult to move about, dress and do shopping for myself.

Then I had my first fall, getting up from the toilet. Often my blood pressure would drop when I got up suddenly and I would black out. I came to some time later, I think it was only minutes but I’m not sure, stuck between the bath tub and the toilet, with my right arm and hand badly bruised.

Then another time when I tried to pick up something that had fallen of the bed, I fell to the floor and hit the back of my head on the window sill on the way down. This was really bad – I had a nasty “egg” on the back of my head and I was nauseous for quite a while.

I kept quiet about most of these incidents because I knew the implications. The worst however was when I was trying to carry a mug of freshly made tea (I so do love my cuppa) to my bedside table. Doing more than one thing at a time is difficult – here I was concentrating on not spilling and negotiating the carpet edge at the same time. It was too much and down I went! My feet seem to get in the way all the time. Not only did I get scalded, it was my favorite mug now all smashed, and I had bit through my tongue, had a broken tooth and was bleeding profusely, but I couldn’t clear my throat. The gurgling sound was awful as I was struggling to breathe. I was lying awkwardly on my hands because I could not try and break the fall with my hands full – and now I could not get up! I had to wait until the Fraser Health support lady came to make lunch. She helped me get up and cleaned the mess. I begged her not to tell anyone as I did not know what to do.

I had been on Fraser Health’s waiting list and had put Kiwanis as my number one choice. It was just across the street and it look so nice. After several assessments I was approved for long term care and Pierre, the director of care phoned to say they had room for me. I would have to share at first. While I could no longer safely clean myself, make food, or things like dressing, brushing my teeth – anything requiring dexterity – these could still be provided at my home by care aids. I was depressed much of the time and just lay on my bed all day. The highlight of the day was when a support lady came to cook! The main problem was the falling. I was fortunate not to have broken anything but it was a matter of time. Falls and not swallowing properly causing pneumonia, are the main causes of death for people with Parkinson’s (pwps).

Mental Abilities

I was talking to a member of staff the other day who said that most residents have dementia. I don’t know the statistics for Kiwanis, but that is a common perception people have of care home residents.

People don’t necessarily know the difference between Alzheimer’s and dementia. The one is the disease and dementia is a symptom of the disease. Other diseases, like Parkinson’s, can also give rise to dementia.

My own experience here has been that often the people who just sit and stare, will end up talking quite intelligently when you take the time and show real interest. And the ones who appear not to be “home” as it were, manage to return a smile if you give them half a chance.

On the other side of the coin, my appearance, which I will explain in a bit, is quite off-putting and some residents would avoid me in the hallway and not share the elevator with me – until they get to know the real me. It so easy to judge a book by its cover…

Depending on which part of the brain is damaged, a person can be quite mobile but suffer some degree of dementia i.e. loss of brain function. The exact nature and location of the loss of brain function could cause different symptoms: memory loss (what’s your name again?), loss of speech, cognitive abilities, and a loss of awareness who or where you are.

The degree of dementia is not the same for everyone and it typically changes over time in neurodegenerative diseases.

Parkinson’s

In Parkinson’s disease the brain cells (neurons) involved in coordinating movement, die off and the person becomes stiff and slow to move, and are often unsteady. Your hands cannot do up buttons like before.

Progressively, neurons in the autonomic nervous system also become affected which now causes sleep problems, constipation, trouble regulating your body temperature, needing to use the toilet often, especially at night, etc.

At this stage, one’s facial muscles no longer work properly so you don’t show facial expressions or blink much. Your speech becomes increasingly difficult and you find that you cannot make your mouth and throat muscles form the words you want to say, quickly enough or words that you have known for years just won’t come when try and explain something. It would be easy enough to assume that I have had a stroke or Alzheimer’s, that I can no longer think!

But no, the areas of the brain responsible for the cognitive functions have not been affected yet. So one is quite capable of thinking clearly and one still has feelings and desires and interests. I am often surprised that people do not take seriously what I say as they did when I looked more human.

People with Parkinson’s are prone to depression. Not only because it is a horrible disease but the production of essential neurotransmitters involved in the mood pathways of the brain are also affected.

When I attend support group meetings on Zoom, I am astounded to see myself on screen, and just how much Parkinson’s has affected my appearance. I am reminded of a Halloween pumpkin with a crooked grin carved out for teeth. But when you look inside you can see a little candle glowing strongly. That is me. I know that as the candle grows shorter, it will start flickering and finally go out altogether. How much time do I have I am not sure, months perhaps – all it takes is a sudden puff of air, and tomorrow will never come.

The moral of the story

As Fraser Health states on their website, ling term care is the last phase in our lives.

The residents are in various stages of whatever ails them. They may have a vacant stare but they may have more cognitive abilities than you think! Many of us suffer from constant pain, that really tires you out and makes you depressed – can you blame us for the vacant stare?

The objective of Kiwanis is to make sure that the residents are safe and secure, but also to make this place feel like your home not an institution. This is achieved with a variety of activities and other more individual interests and hobbies.

As it says in the Kiwanis guideline booklet, our core principles are:

C – Commitment – Believe in what we do
O – One team – Working together
R – Respect – Treat others the way we want to be treated
E – Excellence – Attain high standards through Innovation, Inclusion and Responsiveness

For many of the residents our time here will be short, let’s do what we can (through Innovation, Inclusion and Responsiveness) to make the quality of life in this short period of time we have left, the best they can possibly be.

For a farmer, for example doing some container gardening might be his thing; for an ex-teacher doing new crafting projects might be her thing.

Although it takes more work, one could let staff and residents work jointly on projects like writing a newsletter, creating a website, running a play – that is working as a team! Whatever innovativeness it takes to optimize the quality of life of our final stage should be considered. That is how we show respect.

It need not be the same always, it depends on who the residents are at the time and their interests and the staff and their interests. I would be happy for example to demonstrate, together with a staff member as I can’t handle a hot stove, how to prepare tasty kosher Jewish dishes on a budget, that’s teamwork and respect.

How about a staff member who can type, working with a resident or group of residents to write and publish an eBook about their country’s traditions.

When one is innovative and willing to work as a team and are committed to ensuring quality of life, the list of things promoting quality of life becomes endless.

However there can be times when the staff and resident mix at the time does not allow for the examples mentioned above. That’s OK too, and we adapt to what is possible. And things are going to be financially tight.

Finally, when I am in pain, and I just can’t get the “toothpaste on the toothbrush” (Parkinson’s expression for having all thumbs), I get cranky, and even aggressive, and it is likely to get worse as dementia worsens.

Then when a young girl, and they are all young it seems, speaks down to me, as if I am now the little girl, that is not showing respect. I will strive to show respect to you by taking an interest in your lives, your careers, and your interests, for I am really appreciative of the sacrifices you make to be care aids, the shifts and overtime you have to work, the weather you have to commute in. But I am still in pain, frustrated and cranky and I might just scream at you and refuse what you ask me to do…