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Advocating Christine Thelker © 2020 Dementia

Dementia Care/Long term Care What it is and what it isn’t

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My career was spent working in long term care and dementia care, dementia care, and Palliative care were my passions. They still are but sadly with a diagnosis, your career is stripped away. This even though many with Dementia still have much to offer, and perhaps we couldn’t do the same job, but we most certainly could have and for many still could be contributing in many ways.

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It was so humiliating and demoralizing to get a call one day from the same people who stripped me of my job about a year after my diagnosis, to say that with my knowledge and skill set it would be great if I would come and volunteer and help the residents and staff alike. I believe it was ill-thought-out and may have been even a well-meaning carrot, but truthfully it was hurtful and left me devasted. So my point is I am fully aware of all that goes on in long term care, and still have a good pulse on it, knowing many who are still in the system working, and with having the ability to assist others with their loved ones in care. I don’t come at my thoughts with nothing to base it on, actually quite the opposite.

Long term care homes were meant to be places where people could live, for their final years, they were meant to be homey, comfortable, enjoyable. For a time they tried to do models of Eden philosophy, Gentle Care, but then, they realized that if they cut all those things out ( and they weren’t perfect but definitely better than the current practices.) they could save a lot of money ( or at least that’s what they like us to believe), They stripped away anything that looked like a home environment, went back to the institutional look. They stopped having food made in house, trucked-in food made in big facilities( cost-effective they say. I wonder how many of them would be happy to sit and eat what is nothing more than slop day after day.

Nurses no longer nursed, they buried them in paperwork, gave them so much red tape to maneuver through, everything looks great on paper. So many reports, no time to do care. The Rn’s became case managers, the LPN’s were taking the lead on care, but because of all the paperwork they too are required to do, they relied more and more on the Nursing Assistants. The nursing assistants are the ones who spend most of the time with the residents, but know they too are struggling to get their “tasks done”.

This means it would not be uncommon for people to be gotten up at 7 am, put back in bed to rest??? until lunch, gotten up for lunch, back to bed until dinner time, told to “pee in their briefs because no one has time to toilet them. If they are at all anxious or pacing, give them Ativan to settle them down, because the staff has no time to actually know what is driving that agitation on anxiousness, because they have tasks to tend to. If you speak up you will quickly come to understand that things will not be actually heard, they will find ways to justify everything, after a while many stop saying anything.


The big problem with all these changes they made in the years, they overlooked the single most important thing when deciding how to deliver care. The human element lost and forgotten, instead, looking at cost savings, time savings, and ways to gather statistics.


Levels and levels of management, many of whom have never worked on the floor in long term care. Most only show up on-site if and when something goes terribly wrong ( like in the case of one of our residents who I said was going to jump out of the second-story window, for days I brought it forward ( I’m overreacting, I was told,), he jumped, he waited until I was on a coffee break ( and they say people with dementia don’t understand what’s going on), That brought managers on scene, and very quickly I was told I couldn’t talk to anyone about it not even other staff. ( Never were any of us working that day given any help for the trauma we endured). Just get back to work. These were the times the layers of management were seen, they swooped in to manage the crisis, to ensure the public perception was has they wanted it to be.

It was easy to place the ( unfortunate event on this man and his dementia when in fact the truth is it was a system, that was failing him and was not meeting his needs.


What’s wrong with long term care, they have become human warehouses, nothing more. This is a tragedy that for me defies words a lot of time, the stress on workers who can no longer care for people, who go home day after day in tears because they can’t provide the care they know and want to, ( stress is taking its toll on workers in long term care, and COVID is going to bring it front and center. People are rushed through meals ( I wouldn’t actually call them meals), laid down, after lunch, put to bed after dinner, so the workers can get their jobs done, except their jobs are not meant to be tasks, their jobs are meant to be taking care of the residents. The human piece of spending time with the residents is gone, paperwork has to be done, a whole array of tasks to complete.


In years gone by, there was a charge nurse, the whole team worked together, from the kitchen and housekeeps to the RN, everyone worked together, no one died in their room alone, you took care of the family and the person in care. They have to know caused so much division amongst workers, “ that’s not my job” happens, in the past from making a bed to feeding to doing wound care, everyone helped, RNs taught nursing assistants ( a lot of the nursing assistants from years back have so much knowledge, from being able to dress and pack wounds, changing dressings, the list goes on,), they are no longer taught these skills ( it’s not their job), it was not a “ job” in the past it was a career, you were proud to be in.


There are so many great people working in long-term care and instead of helping them provide quality of life for our most cherished people, we have created an environment that most of them are just trying to survive. These people are stressed, these people deserve us standing up and saying this is not good enough. the worker needs us to stand up. they have gag orders they are not allowed to speak openly or publicly. they need our help because they can’t do the job they want to do if we don’t help. Our Seniors in Care, need us to fight too because they fought to build the country that we live in, they need us to fight for the workers and for them, so they can have the quality of life they deserve.

They know and feel the stress of the workers and that was there before covid, so they tend to comply ( even when they shouldn’t), because they worry about causing anyone more stress, so they sit in silence. It does not mean for one minute that they don’t know or understand.

We spend so much money running the bureaucratic machine that was created in an effort to save money, and in the end, it is costing us much much more. It is costing us the lives of those we are supposed to look after, it is costing us the health of those working within it. It is no longer care.



By Chrissy's Journey

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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