Guess I am wondering if there is a way to die with dignity

These are only my thoughts -....and excuse me if this is maybe not what you have asked.....

I work with older people - predomiately dementia sufferers (also having had a grandparent that suffered from this and saw the effect of my mother in coping with this). Of course this is not the same as HD but I have been around end of life care (albeit in a care home enviornment) and how hard it is (esp with dementia ) to 'truly' know how that person is feeling, their needs, their wants as time progresses

But I learned that it is about treating the person with dignity at every stage - and not losing site of 'their' personal dignity.

I dont know if you can die with dignity - but with anyone who hs an illness - you can live a life with dignity and in the people that are around you, who care/support you can aid and help you to live in a dignified way.

Dece

My thoughts on this issue are very much influenced by a book called "How We Die" by Sherwin Nuland. We like to feel that we are in control of our lives. We set goals and standards and in modern times, we have decided that we will die with dignity and we have thus set ourselves yet another goal that may be impossible to achieve.

It's not that we shouldn't expect to be treated with dignity but we don't know how or when our life will end. Yes, we might slip away in our sleep or in comfort, supported by Hospice care and surrounded by loving family or friends. My mother died at home in the presence of a Hospice nurse, my husband, and me after a battle with cancer, her pain under control. My father died in intensive care with me holding his hand until he died, after his third heart attack. I let go of his hand while resuscitation efforts were being made. Although those efforts hadn't a chance in working because so much of his heart had died, he wanted to go out fighting and he did.

Were those deaths with dignity? I think it's about as good as it gets although some might disagree. Perhaps some people would be upset at having to receive personal care from nurse's aides and from me although I feel very strongly that we should all accept care with grace. We have all needed care and we have all given it and we will need it once again. This is part of life and I never resented caring for my mother. I was glad to do it.

Some might feel that my father did not die with dignity because he had tubes and was on a breathing machine. I disagree because he was made comfortable and he knew that no one wanted him to go and we were all fighting with him. These things were part of that.

Many people are afraid of being left bedridden, unable to speak, mentally impaired in some way because of resuscitation efforts attempted when it would have been best to let the dying process proceed. None of us want this for ourselves. But here's the thing.... modern medicine has enabled us to live longer and in greater health than ever before. How can we always know when it's time to stop using it? Certainly with my mother it would have been ridiculous to try to resuscitate her and she didn't want that. Someone with end stage HD is likely not to want resuscitation efforts either. But it is not always so clear.

My mother in law had HD and shortly after she went to a nursing home, she had trouble swallowing, lost weight precipitously and slipped into a semi-coma. We made the decision to have a feeding tube put in. We did so because we were not convinced that it was end stage HD. It had happened so quickly and she had also been given a new medication.

I wrote about this online and I remember someone's response was, "Let me get this straight. You allowed her doctor to put a feeding tube in a comatose woman? What is wrong with you?!" As it happens, we made the correct decision. The medicine was discontinued, she regained her weight with tube feedings, and she absolutely astonished the doctor when he came to visit her and she was sitting up and talking. She was able to eat pureed food and the feeding tube was removed. She lived another five years, enjoyed the nursing home and her long time boyfriend took her out for lunch three times a week. But we could have been very wrong and our critic correct and I imagine that we would have felt pretty guilty if she had remained in that semi-coma for a long period of time without the quality of life we were hoping for. It would not have been what people call death with dignity.

It's a trade off. We call on medical intervention to prolong our lives because we enjoy them and we want to go on living them. That necessitates a risk that we will do so when prolonging our life will not result in renewed health or a quality of life despite a chronic illness. For me, the risk is worth it. And honestly, the older I get the less I worry about my dignity anyway. I am going to dance like nobody is watching and grab onto life as long as I can. If I go out surrounded by tubes and machines, well at least someone was hoping to have me here a little longer. If I have a stroke and don't have any awareness any more than I won't know what's happening anyway.

We did the same Marsha. When my husband was hospitalized in January with pneumonia, he failed his swallowing test. It was such a sudden change. The infection and lack of nutrition for 5 days had likely left him encephalopathic, which in people with HD, leads to more difficulty controlling voluntary movements. He had lost 30 pounds in the month leading up to this. We decided to put the feeding tube in and bring him home.
He has gained all of the weight back. We have not used to feeding tube except for once since February. That once was only because he had slept a great deal that day and I had to get a meal and meds into him.

Though we do not currently use it, the source of his dysphagia has not gone away. It is not medically prudent to take it out unless we have a problem with it. It is there for another rainy day if that comes. In the meantime, he is enjoying his iced coffee and smoothies (though thickened) and meat and potato meals (ground up.) even frozen pudding as an ice cream substitute. He is home. He is enjoying life.

I would call that LIVING with dignity.

Patty

Re Dignity its two parts - YES its the part about not forgetting that person is a human living being person and ensuring at what ever stage that person is treated with respect (opinons, involvement, likes, dislikes) AND the more practical side (toileting, helping to feed etc)which may seem undignified but can be handled in a dignified -even matter of fact way.

Im thinking my post is quite simplistic but it actually for how I have viewed it re dementia I dont know if you can die with dignity - but with anyone who hs an illness - you can live a life with dignity and in the people that are around you, who care/support you can aid and help you to live in a dignified way.

I have HD and watched my father go thru the entire cycle till the end. Like Marsha was also their at the end holding his hands. His last
few years were sorta rough he had chorea really bad as they couldn't seem to get his meds straight. When I saw him thrashing around in the
Hospital bed I decided that was not really living with dignity and I didn't want to go through the later stages with my HD. I term it as a
self imposed passing instead of dying with dignity. Seems it's OK to put a animal down when it's not able to function properly but we are not
allowed to have the same happen to us.