Long Term Care

Quality of Life

There has been some excite in Heidi’s world, particularly in the area of long-term care homes. I have been asked by my friend Rainy to assist her in the development of a resident and family council. I jumped at the chance!

Rainy played an important part in making this community possible

Some Background About Us

Rainy Kent
First some background, I met Rainy and her husband many years ago when they attended a class on web design that I was teaching, we used MS FrontPage in that course and WordPress was still a dream.

I have since been working with her on many projects, most notable was the Giro di Burnaby. She is so great to work with because she understands the importance of community and commercial sponsors trusted her because she delivers – she really puts her shoulder to the wheel. As a child I was taught that if the wagon or coach you were traveling in was stuck in the mud, you got out and help by putting your shoulder against the wheel and pushing the wagon out of the mud.

Putting shoulder against the wheel
Modern equivalent

Her mother is quite elderly and has some level of dementia and now lives in a care home in Burnaby. The is very stressful for family and caregivers as people suffering with Alzheimer’s for example (which is one if four type of dementia, there is also Parkinson’s dementia which is waiting for me personally) can be very difficult, and often become very aggressive when they object to being treated without respect.

At the funeral of my best friend Pat (I seem to have a lot of Pat’s in my life. Her favorite care aid was participating in her eulogy. He recounted how this very short frail woman as chasing him down the street still in her nighty brandishing a broom “don’t you dare young man!” He was 50 – what she was thinking we really don’t know but it was real to her, and to him too!

So understandably Rainy is concerned about her mother and knows staff are busy and under pressure so are not always feeling up to being understanding. So what to do? Hence the establishment of a resident and family council at her mother’s long term care home. If anyone could do it, it is Rainy!

Heidi Mueller
Readers of this blog will have some knowledge of who I am so I will only cover what is relevant to this project, I was diagnosed with Parkinson’s disease over 10 years ago. I continued working but after a few rather serious falls I too moved into a long term care facility.

So Rainy and I ended up experiencing long term care from both a resident and family member point of view. Rainy is concerned for her mother’s well being, and I have been issues of my own as I have written about extensively in this blog.

My post-graduate research was in health technology assessment in developing countries where one looks at how a technology can improve the quality of life for a patient. Being knowledgeable in the determination of quality of life is helpful when one looks at the quality of life of LTC residents.

Ministry of Health
The ministry of health has done a review of the many things that have gone wrong in long term care homes during the Covid pandemic and rightfully so. You can read the gory details in Andre Picard’s excellent, if depressing book, “Neglected no more: The Urgent Need to Improve the Lives of Canada’s Elders in the Wake of a Pandemic

A New Approach
The Ministry announced the results of the review in a news release on November 3. You can view this on the BC Government News Archive.

The News Release has a byline: “Residents, family will have stronger voices in long-term care homes” so it is very timely for what Rainy and I are working on.

It is a news release, so it is still thin on the details, but the key approach to improving the quality of life and safety of residents living in Long Term Care is to strengthen the resident and family councils. The Ministry wants every long term care home to have such a council:

Resident and family councils
A resident and family council is defined by the ministry as a group of people that 1) meets regularly to 2) promote the collective interests of residents, and to 3) discuss issues of concern.

How will meeting together and chatting about issues of concern avoid the horrors that were seen in the recent Pandemic as mentioned in the ministry newsletter as the raison d’etre of these councils? When I asked senior staff at my LTC they expressed in rather strong language “It Won’t!

They are quite right. The Ministry is currently amending the regulations to describe the role of and how to fund these councils.

There is still a lot to do, and we are keen to get involved by contributing our experience and skills the identifying and fleshing out the systems that will be needed to turn the Ministry’s earnest objective into an effective reality – but I will report on progress as we go.

Oh dear, I was wondering why I had not heard back from her I had spent a lot of time analysing the newsletter and what could be done to make it work. She felt it was too theoretical, pie in sky. One should start with what you can do now and work up from there – and she’s right. I like getting the big picture right and fill in the puzzle pieces starting small but you have a plan, the picture on the box to guide you, also start small but you have a vision which is easier to budget for and measure your progress against.

But Rainy and her council is getting known in the community and they have identified one particular problem and have a suggested solution – I have nothing, so whose method is more effective?

That’s why I like working with her!

But I know from experience that putting a system in place gives better results in the long term and it is more sustainable.

I have been struggling to improve my I own quality which has plummeted since moving to long term care. I had been following a care system based on WHO definition of quality of life:

Quality of life (QOL) is defined by the World Health Organization as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”.[1] Standard indicators of the quality of life include wealthemployment, the environmentphysical and mental healtheducationrecreation and leisure timesocial belongingreligious beliefssafetysecurity and freedom.[2][3][4] QOL has a wide range of contexts, including the fields of international developmenthealthcarepolitics and employment. 

I have gone to great lengths to explain and/or discuss after all it is my field of expertise! But I have learned the blank stare that I get is not because they don’t understand my explanation, they aren’t listening the are waiting for their turn to speak.

I believe we have a much more insidious problem that is not unique to my case or LTC facility. I will discuss it in a separate post.