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The Forum > Article Comments > End of life care: my life my death my choice > Comments

End of life care: my life my death my choice : Comments

By Bill Alcock, published 4/12/2014

I am scared stiff that I may be confined indefinitely in a nursing home suffering from Alzheimer's, dementia, incontinence and the like.

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Hi Suse,

I agree with your first two paragraphs. But they do seem to be contradicted somewhat by the last two :)

Basically, the 'agreement' has to be between the patient and the health professionals, with heartfelt urging from relations and friends, BUT no authority to be involved otherwise.

Of course, sometimes the 'agreement' is implicit, with the judgments of the health professionals of the patient's wishes paramount. Of course, upping the dose of pain-killers or sedatives may shorten the last few hours of a patient, without any intention to do so.

That seemed to be how it went for my wife, who asked for something to let her get a good night's sleep, and that was that. She may have thought she still had a few more days - the doctors had told her earlier that she had two weeks, but it turned out to be only four days or so. So she may have thought that she still had a week or more, but her system was just too far gone. But she went very peacefully and calmly. We were chatting on her last night about travel and conferences and she asked "How much does a plane tyre cost ?" Her last words :(

She chose, not us. That's how it has to be.
Posted by Loudmouth, Friday, 5 December 2014 8:12:15 AM
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Loudmouth "She chose, not us. That's how it has to be."
Yes indeed, the very definition of voluntary euthanasia.

I am glad your wife had such a peaceful death, but many don't.
There is no way of knowing whether that final medication to help her sleep actually caused her death though, or whether it was the disease process.
Posted by Suseonline, Friday, 5 December 2014 10:38:46 AM
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None of us knows what the future has in store for us and our loved ones. Choosing to refuse food is not a humane or dignified end.

http://www.bbc.com/news/uk-england-19341722
Posted by onthebeach, Friday, 5 December 2014 1:34:55 PM
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My dad passed away at home with all of his family. Daily visits from silver chain and pain management plus his wife and daughters there comforting him. He passed away peacefully.
My mum after being misdiagnosed with secondary cancer spent, her last lucid days in hospital. Besides insufficient pain management, she suffered the pain of a broken arm. While still continent, after constantly pressing the call button to no avail, she attempted to take herself. Her whole arm was black and blue and not treated because she was terminal. In hindsight I should have pushed the doctor for more pain relief. We weren't allowed to care for her at home where she wanted to be. It was horrendous to the very end.
When my mother-in-law became unable to take care of herself, my hubby and I gave up our company house and jobs, packed everything including mamma cat and six kittens for the twelve hour drive to her residence. I was pretty much appointed her carer and worked in with the silver chain nurses. I would administer pain relief if required in their absence. I was a difficult time as I had never had to take on such a responsibility, as well as all the emotions.
I realized once she became non communicative people stopped going in and talking to her. I explained that the hearing is the last of the senses to go, she will hear and understand. There was excitement when sometimes the slightest smile would appear.
She passed away in her own bed, surrounded by loved ones, having had to only deal with minimal pain.
It would be wonderful for terminally ill to be cared for in their own home surrounded by friends and family. Silver chain (or other)nurses are involved and help through out. They are very compassionate and dedicated people. I couldn't recommend them highly enough.
We made a big sacrifice and a little step backwards, but were gifted the opportunity of the two precious months loving and giving the best care possible. A blessing for her and for us.
Posted by jodelie, Monday, 8 December 2014 5:28:42 AM
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Having worked in a nursing home for several years it is definitely not a place I would like to see a friend or loved one live out their days in. I say this, as in my experience the ratio of nurses to residents can be one to eleven. It can be very difficult demanding and definitely frustrating, for nurses, patients and families. The feelings of neglect are high simply because you cannot dedicate the time you would like to. In my opinion all nursing homes should be non for profit and dedicated to providing adequate staff for a more manageable ratio.
Bill you are so correct in recommending a health care directive. Once a person with dementia etc becomes bed ridden has lost all faculties, quality of life has ceased. Having made the decision to refuse life prolonging intervention, adequate pain management and comfort should be provided, meeting the instructions of the health care directive. Being compassionately and humanely eased out.
I wish you all the best Bill
Posted by jodelie, Monday, 8 December 2014 6:05:57 AM
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I totally agree with you jodelie - it is important and wise to have a living will dictating your wishes should you become incapacitated, in a coma, or losing/lost the ability to communicate compis mentis. It's confronting to work in a nursing home.
Posted by HereNow, Monday, 8 December 2014 3:47:21 PM
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