Sorry You Can't Occupy Two Beds

Government Budgets Win Over Human Rights & Mental Health

The shit has hit the fan this week, so please forgive me for my digression from my usual format. But given that my publication is about Mental Health Matters what better place than here to raise the subject of a particular legislation for long-term care homes in Ontario, Canada?

I have either been at my mother’s hospital bedside or I’ve been trying to find a solution to this problem which started on Monday when I got a call from her long-term care home advising me that because she’s been under hospital care for more than 30 days, they are discharging her.

BOOM! Just like that she no longer has a home. She again loses her home, friends, and relationships with the staff, whom she sees as her friends.

What is the point of having the “Fundamental Principle and Residents’ Bill of Rights” if it expires after 30 days? This Bill, Fixing Long-Term Care Act, 2021 (ontario.ca) is supposed to protect our seniors or anyone living in long-term care of their basic human rights;

1.     Right to be treated with respect;

2.     Right to freedom from abuse and neglect;

3.     Right to optimal quality of life;

4.     Right to quality care and self-determination;

5.     Right to be informed, participate and make a complaint.

How can this bill be completely ignored once 30 days have gone by and a resident is still receiving medical care or after 60 days if they are receiving psychiatric care?

This Bill states that “every resident has the right to participate fully in making any decisions concerning any aspect of their care, including any decisions concerning their admission, discharge or transfer to or from a long-term care home…”. My mother suddenly finds herself homeless and must remain in hospital care once she's ready to return home because she has been discharged without any such conversations.

This doesn't happen to a regular citizen paying rent. This Act also states under the Right to An Optimal Quality of Life, “every resident has the right to exercise the rights of a citizen”. It's not as if she was late or behind on her lodging payments.

Nowhere in this bill does it indicate that these basic human rights should be dismissed after 30 or 60 days? Yet long-term care directors are given the authority to do just that. I ask, how can the lowest representative have the highest authority? Why have laws at all if they fail to protect our citizens?

The very first article of this legislation states, “…a long-term care home is primarily the home of its residents and is to be operated so that it is a place where they may live with dignity and in security, safety, and comfort and have their physical, psychological, social, spiritual and cultural needs adequately met”. There was no dignity, no respect, and no concern for her psychological welfare when she was abruptly kicked out of her home.

While my mother’s survival remains uncertain that is not cause to discharge her from her home because her death is equally uncertain. At a time when all her energy should be focused on her recovery, shouldn’t her long-term care home support her efforts and sense of safety instead of adding to her stresses (or mine)?

I am outraged at how the very people who are trained medical professionals or organizations that provide long-term care fail to recognize the dangers and impact of removing someone with dementia and Alzheimer’s from their home. In her long-term care home (not all homes have the same allowances) we could decorate her room with her personal belongings. Her personal effects give her that feeling of being safe at home. Her personal effects trigger her long-term memory and maintain her sense of identity and personal history, as well as her sense of security.

When she's put into a hospital situation, without familiar faces, without personal belongings, then she has periods of paranoid delusions which is sometimes part of having dementia. The longer her stay in the hospital the more difficult it is to maintain her cognitive baseline and her very will to continue to live.

Being discharged from her long-term care home, having to remain in hospital care for who knows how long, to being transferred to who knows where or how many times does not support her mental well-being. Instead, it’s a trauma. How can someone with short-term memory loss develop long-term memories if their environment keeps changing? This is not supportive of a quality of life and I fear it will kill her.

So, when the administrators of this policy tried to comfort me with “We HOPE she can go back to her long-term care home”, I just want to tell anyone who uses the word HOPE to “fuck off”! Hope doesn't fix a damn thing. The reality is that now she has to wait for someone to die because all the beds are filled. She waited for 4 years to get into her long-term care home in the first place. The only difference now is that she's on what they call the “critical waitlist” because she's occupying a hospital bed. It's crazy that a person becomes a priority from a crisis they created. So, don't try to console me with, “She'll stay on the waitlist list for her first choice of long-term care homes”, the home she's just been evicted from, “and at some point, she can go back”. What they don't say is, “if she lives long enough”. Knowing full well this will have a negative impact on her mental, social, emotional, and overall quality of life. I say they know this to be the case because the administrator of this policy advised me NOT to inform my mother of this development.

We may as well be governed by artificial intelligence if our leaders (our decision-makers) can't use common sense or compassion. In my humble opinion, it comes down to ledgers and money without any regard for the statistics on the lives of the residents this is impacting; meaning how the death rate of residents goes up when they lose the stability they had in their long-term care home.

Why is this not a concern for the government? I suspect it is because the government saves money when our citizens die and therefore no longer require medical care or care in a long-term care facility. Why else allow legislation to be overruled by long-term care home directors?

Everything this bill stands for should be evaluated before the decision is made to discharge a resident from their long-term care home, and I emphasize the word home.

This was her home. She's lost her home. She's lost the care of the staff who she saw as her friends. She has lost the friends she has made in the year since she’s been living there. There is no compassion here for her, for someone with dementia who has already lost so much. This should not have happened to my mother. Nor should it happen to anyone else.

I am not one to normally share my opinions. I don’t normally share my political views. However, in this particular situation, I have to speak up when I feel human rights are being violated. The problem is larger than just my mother. This is happening to other residents and their families.

Why I'm such an advocate for Human Design is not just for us on an individual level but it’s also relevant on a collective level. In terms of Human Design, the fundamental problem is that our leaders are making decisions from their minds. They are not using their inner authority and they are not using their outer authority correctly. We need to be governed from a place of respect, and love for our neighbor, to honor our humanity.

To my readers, who also have loved ones with dementia, Alzheimer's, or other cognitive limitations or have family members living in long-term care homes, whether you're in Canada or elsewhere in the world, I am curious to hear from you. How does your health care system support your citizens?

If you know someone who would like to receive my newsletter please share and let’s get the conversation started about Mental Health Matters so that no one ever feels alone.