Long-term care isn’t just for the elderly

It seems that those people with some of the sunniest dispositions have the shittyiest lives.

Yesterday there was a funeral service for a 68-year-old woman who was in care all of her life.

This woman was born with physical challenges. Her parents, using the term in the sense of genetic suppliers, immediately put her up for adoption. Her childhood and teenager years where spent in foster care. At 18, when she was too old for the foster system, she was moved into a long-term care facility.

For the last 46 years her world was a few hundred yards of hallway and occasional visits into the facility’s gardens. She was lucky in that she was in a well-run, compassionate facility where staff went beyond basic professional care to give her as much of a life as possible. They decorated her room and wheelchair for the seasons. They called her by her first name. They touched her, joked with her, talked to her. In short, they treated her as a person, not a patient.

One of the other residents at this facility was a man, who in his 40s suffered a stroke that confined him to a wheelchair. Unable to live on his own, he was warehoused in a facility set up to care for people 30-, 40-, 50-years older.

The particular facility is also the only long-term care facility in Atlantic Canada for high-needs children!

Their situations highlight the massive gap in our care system and philosophy. Our long-term care is built on warehousing people. What little focus there is is to move people out of expensive hospital care beds into lower cost long-term care beds. There doesn’t seem to be a policy, funds, resources or thought for rehabilitation and life enhancement. It’s just warehousing, providing the basics needs of life, waiting for death to open another space.

The current focus is to keep people in their homes versus expanding our bricks and mortar facilities. But many people can’t stay in their own homes. Many don’t have homes. Others are being abused in their homes – in Nova Scotia we have recent cases where the elderly have been sexually assaulted in their home by outside health care professionals, and where care givers have taken financial advantage of them by charging things to credit cards and raiding bank accounts. In terms of delivering home care we don’t know what other terrors take place behind closed doors. Plus, we have the challenges brought on by extreme winter storms from the interruption of the delivery of care to jeopardizing the safety of those delivering that care. (I know that not all visiting care givers abuse, but it only takes one rogue care giver to hurt, harm and abuse numerous others. Think of the abuse of children by rogue priests.)

What we’re doing now is based on false economy. With younger people going into care facilities geared for an older demographic we are spending money delivering a type and style of care they don’t need and which, given their ages, is delivered over longer time frames than it was designed for. A 70-year-old in care may have a decade ahead of them, while a 20-year-old could face 60 years of care. Do they both require the same type, style and level of care?

We need to rethink long-term care because it’s not just the elderly who need it. We have children and teenagers as well as men and women in the prime of life who are hurt in accidents or hit with catastrophic illness who need constant assistance or a different type of assistance than we currently provide. This is an opportunity to be innovative.

One woman who lives this has launched Independence Now Nova Scotia (INNS).


Once again, change doesn’t come from the professionals rewarded by the status quo, but from those who live it and truly understand how the system fails to perform.

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1 Response to Long-term care isn’t just for the elderly

  1. Bubbie says:

    I have been having this conversation with health authorities for years, through meetings with Health Ministers, bureaucrats, politicians and health administrators.

    Recently, the mother of a young, 21 year old, disabled daughter in Ontario, expressed her concerns for her daughter saying that being placed in long term care facility with elderly residents suffering from dementia was not the place for her daughter. The elderly are mixed in with the homeless, physically disabled, mentally ill and even people transferred from the prison system. A year ago the Chronical Herald printed a series titled, “Health Care in Crises” that touched on this very subject. One young disabled resident residing in a nursing home in Halifax, featured in the series, stated she felt the elderly and people like herself should be in separate facilities because she was tired of seeing people leaving the facility on a daily basis never to return. It is not fair to the young disabled person because they should not have to endure seeing someone that has passed away on a daily basis going to the morgue and it is equally unfair to the elderly residents because they do not receive the specialized care that they deserve. She even wrote down the names of the people and showed it to the reporter.

    Recently, I attended the Dementia Strategy presentation given by Leo Glavine. This strategy calls for keeping people in their own homes as long as possible as a way of reducing costs for the Long Care Health System. It is my opinion that the Health Minister is offloading the cost of long term care onto the families of loved ones needing a long term care bed, but that is another story. No one is talking about the inefficiencies of keeping someone in their own homes as long as possible. No one talks about the loneliness experienced by the elderly often left alone. They don’t talk about the elderly not receiving daily personal attention like bathing, being fed, entertained or a caseworker not able to get to them because of inclement weather. How many of the elderly died in their own homes as a result of this past brutal winter because no one was able to visit them? The Dementia Strategy has mainly outlined programs and education as the focus for their highly acclaimed first of its kind strategy in Canada. There is one small reference for caregivers and nothing for patients centred care mentioned.

    Immediately after the Dementia Strategy Presentation was given I wrote a letter addressed to Leo Glavine and the Alzheimer’s Society expressing my deep disappointment for the lack of support for caregivers and patient centred care missing from the Dementia Strategy which prompted the Alzheimer’s Society to contact me that led to a meeting that happened yesterday (July 21, 2015).
    During the meeting I expressed my thoughts on their Dementia Strategy to which they agreed that at some point keeping a person in their own home becomes impossible and the only other option is long term care in a facility. They also agreed that there should be more support for caregivers. They did not seem to be receptive to the idea that there should be separate facilities for the elderly, even after I expressed my concern for a mixed population in with the elderly and how it can lead to to their demise.

    It is my hope that we can convince the government to remove people from long term care facilities that do not belong in them so that the elderly can get the quality of care they deserve, In saying that I would like to see better facilities for the disabled and the homeless because being lumped in with people suffering from dementia can be debilitating to them, leading to greater bouts of depression lessening their feelings of well being.

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