I am feeling the emotional burden of having people I love locked up in the human cattle yards for dementia and aged care. One friend is as many of you know quite young. If I was well, there is no way I would be able to have any of them live with us, not even one of them. Not even if my husband and I were both retired, would we have the physical ability to do it. If I was rich, they would need individual care for 24 hours a day with two staff all the time, so that they wouldn’t have to be locked or strapped in. It is tragic that ageing and chronic illness has been allowed to go on like this for so long. They don’t want to live like this; I find it intolerable and unbearable watching them live like this. They have medical directives that state clearly and legally they do not want intervention if they have something like a stroke or heart attack. One has started refusing medication, and when it is forced, then waits for the nurse to leave the room before spitting it out. I don’t know how long this has been happening, but I don’t blame him. I feel I should speak to the doctors of all of these friends about ceasing all medication, other than pain relief. Why at this stage of their lives, sitting in continence aids (yes, also known as nappies) living unfulfilling and completely undignified lives, should they be medicated for illness or disease when by doing so, all that is happening is it is prolonging their lives, but with NO QUALITY OF LIFE, and NO CHANCE OF THAT CHANGING. Is this not the same as giving them a gastric feeding tube if they can’t swallow, or resuscitating them if they have a stroke? We wouldn’t treat our beloved animals like this, and in fact if we did, we would be on the front page of every newspaper in the country for cruelty to animals. What is wrong with stopping basic medical intervention when we don’t have quality of life? This could not possibly be considered euthanasia or suicide, surely just taking back control of our life. Surely to prevent a stroke that may well shorten our life a little, but would save us from this hideous type of existence is the right thing to do. A blog I wrote late December likened the human cattle yards for dementia and aged care to prisons. They are prisons. These people are locked in. We save our own souls by saying it is for their safety. We have got it wrong. It is no way to treat the people we love. But right now, I don’t know what else we can do, but my speaking out about this globally feels the right thing to do. Perhaps a global voice will take hold, and from one small idea or conversation seeking change and being willing to write about the truth, we can and will build on a solution. I don’t know, but I’m sure as hell going to give it a go.
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Yes, it sure is very difficult and upsetting having to ‘lock’ your neareast and deareast up. If i didn’t have to go to school and didn’t have to work, i would be looking after my Grandad 24/7 until i had a health turn myself or it just got to much for me that i couldn’t cope anymore. It is very demanding physically looking after someone-i have heard countless times before that the partner in ‘good’ health then has a health turn. Unfortuantely, like most people, my family can’t afford 24/7 care. If my parents are ill when i retire in many years to come-i would spend my first few years or months of retirement looking after them, until either they died, or it got to a point where it was too much for me. Sometimes, Kate, people can’t look after there parents because of distance, or living overseas, or for financial reasons. Being in a rest home is definitely like a ‘guardhouse’. I sooo wish dementia was a relatively quick illness, rather than a long illness, Kate, because it is heart breaking watching them go on for so long, especially when there quality of life is decreasing dramatically. My family have no idea how long my Grandad has left as dementia is an unpredictable illness. If my Grandad ever has to be fed in a tube-i would be devastated-probably would be the worst day of my life. Being fed basically means they have no quality of life and there quality of life is obviously going downhill rapidly. I find it so frustrating why there life are prolonged, and yet, there quality of life is just getting worse-nowhere close to better.
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Agree with everything you’ve said Sam…
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Religion has a lot to answer for! It is only belief! Nothing wrong with having beliefs, so long as you don’t give them the status of fact, and subsequently applying them forcably on others.
I favour voluntary euthenasia. Suicide isn’t illegal!
There is more on the media about the achievement of reaching 100, as if there was something worthy about having an old body, long past its ‘use by date’.
Who are we, who are people like Jeff, to dictate that based on their own value system that so long as there is trace of a persons DNA remaining they should be forced to live unwholesome lives, undignified lives, lives without senses and feeling, without quality interaction with others. If that is want these people want for themselves alone, that is fine by me, and I would support their right to get any health care they needed to achieve that. Why isn’t it equally acceptable for someone with different needs to be treated with similar respect,dignity and support of their decision?
I dread this happening to me. I am single, no family in Australia, my friends are through activities I enjoy, including philosophy cafe. What would happen to me, would I be forced against my will to live in a home, being prodded and pushed around, without intellectual interaction, without, physical interaction, fattened up, just so that the needles would be easier to insert!
Paul
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Hi Kate – I can totally relate to what you are saying – that’s my fear too.
I’ll end up having to commit suicide and die earlier than I’d like because I’ll have to do it while I’ve still got the physical and cognitive means. And if it ever happens that I’ve got to buy something by “mail order” because I can’t travel to get it, how will I know that it’s OK to use? I’ll have to be cognitively well enough to go through the testing procedures.
Hopefully I’ll have time to plan ahead, but many people don’t have time and don’t plan ahead.
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Oh Kate, surely everyone hates the thought of being in a care facility? Including each and every poor soul living in one? If the carers were properly trained, and truly cared (as many do), the homes were sufficiently staffed and the carers adequately remunerated THEN things just might be different.
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Dear Kate,
I have been there with those decisions, and you need to remember that the human body is a survivor regardless of dementia or medication. That body carries traces of someone you have loved and still care about. It is important that there is no pain, suffering, or demeaning of that persons self. I don’t know where you are going with your plan, but I don’t want to go with you.
The prisons you describe, are the prisons we create by our own perceptions of what we see. If you want to see a prison, then you will. If you want to see someone cared for in the best possible way, then there are no walls.
Jeff
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Hi Kate, I have been advocating on this issue for years. Last year I made a powerpoint presentation for a subject I was doing for my Grad Dip on Human Rights. The title was “Please dont lock me away”. It was about residents suffering from dementia who are locked away. The class was mortified. If you look at how these people are treated it does not meet the Human Rights Charter. Anyway I have many other issues and solutions on this subject, but it is just so bloody hard to get this on the agenda of the powers that be. Hope and Love Robynx
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Very thought provoking post.
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My mother is 94, and she told me she feels like she is in prison. And she is in her own home!!! Can’t even begin to imagine if she were in a “home”. Oh, what a scary thing this is.
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