Paul, who wrote this poem, has been residing in a long-term care home for two years due to a degenerative physical condition. He has been waiting all this time for a transfer to his first choice of a long-term care home so that his husband of 38 years, who doesn’t drive, can visit him without having to travel by bus for several hours each time. Paul now believes that, at this rate, it will take another 5 years or so before he can move to the home of his choice. This is just heartbreaking.
IN LONG-TERM CARE (in the style of John McCrae’s “In Flanders Fields”)
By Paul Gregory Leroux
The wait lists longer daily grow
And move excruciating slow;
We seniors have no place to go
For long-term care.
We only ask for our fair share;
But the resources aren’t there,
No room for seniors anywhere
In long-term care.
Our parents fought the war and won;
Our battle’s only just begun,
As Baby Boomers now they shun
From long-term care.
We, it seems, no longer matter.
Politicians just get fatter,
As our dreams they blithely shatter
While we despair.
Bereft of dignity and pride,
We have no hope left deep inside,
As if already we had died.
The only thing we haven’t tried
Is mass assisted suicide.
But do we dare?
More about Paul’s journey to appear in a future blog post.
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Taking the time to care
In 2011 Brian was diagnosed with dementia. Last summer he died after being in long-term care (LTC) for 4 1/2 years. I tried my hardest to care for him at home but Lewy Body Dementia defeated us.
I will always feel guilty: nearly 20 years ago I retired from my working life as a therapist which included visiting residents in LTC. I knew how unhappy he would be there.
I was right. Little had changed in the quality of life of the residents: the way staff worked was still hierarchical, the medical model firmly in place. Care plans barely took into account the life experience, interests and personality of the resident. Front line staff did their very best but were dominated and constrained by “Ministry” regulations.
The time is rapidly approaching when I and thousands of “baby boomers” may need a place in LTC.
Culture change is needed now and is possible through putting each resident’s emotional and social needs at the core of their care. Change: to make living spaces home like and comfortable; time filled with companionship and meaningful activity, change to give staff the time and satisfaction of taking care of a resident known for who they were and are now.
Should I need a place in LTC I don’t want to be in a home where I am kept alive: I want to be helped to live.
Submitted by Janet
Elizabeth Payne’s series of articles on long term care has struck a chord with The Citizen readers as evidenced by the many letters to the editor.
“Focusing attention on long term care issues like increasing the number of available beds and the discussion about more or less oversight by the province is important. However, it is even more essential to emphasize a complete culture change, transforming long term care homes to provide loving, home-like environments for their residents.
There are a number of models for long term care that would accomplish this transformation which have been developed in the UK (Butterfly Model), Holland (Hogewey Village) and the USA (The Eden Alternative & the Green House Project). Some of these are currently being piloted in Peel County, Hamilton and are under consideration in the City of Toronto.
Newly elected City of Ottawa counsellors must review the benefits of these models and include a pilot project at one of Ottawa’s four city-run long term care homes in their next budget…….”
Excerpt submitted by James Sonley whose wife, Linda, had frontotemporal dementia for 16 years and passed away in May 2018. Linda lived in a long-term care home for 20 months. Consequently, Jay experienced firsthand the uncertainties of providing appropriate care for a loved one at home and in long term care.
Many newly elected City Councils in Ontario will likely be determining their 4 year priorities over the next few months. PLEASE take a few minutes to send messages to your local councillors urging them to put transformation of our long-term care home system on their priority agenda. Residents and staff cannot wait another 4 years!
Recently published in an Ontario newspaper:
“I recently met a group at the National Gallery of Canada, Ottawa. We spent time in front of the controversial Chagall painting that was to be sold abroad. The auction was stopped due to public outcry. The result? The painting was returned to the walls of the National Gallery
One of the group remarked on the freedoms Canadians enjoy, such as voicing an opinion, being heard and respected. This comment got me wondering: Why is there no public outcry about our long-term care (LTC) homes in Ontario? How do we change our apathy, demand not just an incremental change but for a change in the model of delivery?
We must exercise our privileged right to be heard. Our most fragile and vulnerable population deserves our outrage. Address your concerns to your new city councillors and your MPPs.”
Submitted by Rose Ann, a caregiver (Rose Ann is pictured above with her spouse, Ron, who has since passed away)
“After many years of accessing services in the community, I finally had to place Stewart into a long-term care home. My husband was among those least compliant. A different environment could have made an incredible difference. Even with all the improvements that are being promised, long-term care homes remain a desperate last resort for the loved ones of exhausted caregivers. My long-term care home experience led me to firmly believe we need an innovative model.
Your blog presents compelling evidence that can change the way care is delivered in the final years. I fervently hope that I will have a better option. Thanks for your hard work to change the way care is delivered in long-term care homes. It is very important. Anything less is not going to make a substantive difference.”
Our blog has now highlighted 4 innovative models – the Butterfly Model, The Eden Alternative, The Green House and the Hogeway Villages. All have been shown to enhance the quality of life for residents, families and staff.
If you agree with Judith, please make this a municipal election issue in your region by urging the candidates running in your Ward to champion innovation in long-term care homes – either by attending all candidates meetings or by sending those running in your municipalities a letter or email. Search for “certified candidates for 2018 municipal elections in your city “(i.e. Hamilton, Brantford, Kingston, Ottawa etc.)
And please share this with all your contacts and ask them to become “followers” of our blog too – to show support for this initiative.