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My father is an unusual person. He would have probably been diagnosed with Asperger's if such a diagnosis existed when he was younger. As he has aged, his separation has deepened. He communicates almost nothing, so one has to be psychic to try to figure out what he wants. It has been made worse by his loss of hearing.

He has never been very happy and had no social contact with anyone other than my mother. He has been "doomed" since he was around 50, when he was diagnosed with high bp. In recent years, the doom has worsened. He is completely agoraphobic at 91 now and it is a battle to get him to a doctor. He doesn't want anyone coming in. Any trip to the doctor or visitor in the house stresses him so utterly it is hard to describe.

He wants to die -- that is apparent. He throws his food away and does nothing to help himself. Two weeks ago we went to the doctor. It was a day that was so terrible that I don't even like to remember it. He goes into melt-down and becomes paralyzed and helpless. Since that trip, he acts like each day is his last. He eats almost nothing. He throws it out when he thinks we're not looking. His legs have swollen, but he refuses to elevate them. We need to get a doctor and health services to come into the house, but going through this with him is a nightmare.

Tonight he apologized to me for being such a problem. I wasn't my normal sweet self and told him to stop it. I told him the grim reaper wasn't anywhere near, so he needed to get back to trying to live.

I pondered the right to die today.I have always thought people had the right to die with dignity if there was no hope. However, I also realized that the others around the person had a right not to be subjected to it. It is torture watching someone slowly kill himself by not eating or neglecting himself in other ways. Plus there are legal ramifications, I'm sure. We can't just let him slowly kill himself. I'm sure to do so would be elder neglect.

I know many people here have dealt with this type thing when their parent is ill. Putting my father in a nursing home would probably bring his death quickly, so I do not want to do that. I don't know what my mother would do without him.

Does anyone have any advice on how to handle this without a NH? I never thought I would be dealing with the right to die issue. There are so many moral and legal considerations. Besides it is just upsetting, depressing, and sad to deal with everyday. I am so angry at him for being so selfish as not to consider what he is doing to others. But then, the autism has always robbed him of the capacity to know his effect on others.

As I wrote this, the answer dawned on me. The choice to him will have to be either eat or go to the NH. He may have the right to die, but we have the right not to watch him do it. Right?

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I'm going to offer up a story that has meaning to me, but may offend some readers because it not about humans. Nevertheless, I would appreciate your patience as this was a lesson to me.

This is an animal story about a cat that lived on my street many years ago. He was white and the general understanding was that he had been left behind, at a very young age, when his owner moved. This cat, to our knowledge, lived for more than 17 years. He had a great life; panhandled on our street and several blocks in each direction. We called him "White Kitty", but we learned that others called him "Casper" or "Surgar"; he had many names and many friends.

We really loved this cat, as did many others, and when he reached an old age, he honored us by coming into our home and spending the nights with us during the winter months. When Spring came, "White Kitty" left our home, without so much as a glance back, and went back to the usual life that he loved.

We would see him often, as he always awarded those who supported him with a visit, but there came a time when several days went by with no sighting of White Kitty.

One day I went all over the neighborhood looking for him. I finally found him in some bushes. He was just lying there and could not get up. I took him to the vet and he was quite dehydrated. So everyday I would take him to the vet and they would inject fluid under his skin and eventually he got better. Other than dehydration, there was nothing really wrong with him.

I became very vigilant at keeping after his care. Another lady on our street was equally vigilant and eventually, White Kitty went to live with her full time. He was the only other inhabitant in her home and I guess he found that restful compared to our home that had several other pets.

Time went on and soon he would no longer eat and was suffering. We, me and my neighbor took him to the vet and had him euthanized. It was heartbreaking to do this, but the vet agreed that the time had come.

My point is that White Kitty knew when his time had come and if we had let him determine that he would have left this world at a time that was truly best for him. He had lived his life on his terms, the terms that made him happy, and at some point had come to decide that he would rather crawl into a bush and die rather than go on. The efforts we put into keeping him going; the loving care that we gave him did not give him the life he wanted.

I don't know if anyone can take some sense of humanity from this story, but I often think of White Kitty and my own demise. I hope I have the chance to make a choice that is respected.
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At age 91, does your farther have medical issues beyond his high blood pressure, the Aspergers and the agoraphobia? Not in anyway to minimize those conditions, but does he have other additional problems? I'm just wondering if his doctor could decide upon a diagnosis that would allow Hospice to intervene. You dad will die somewhere. Would it be possible for that to take place at home with proper care and assistance and in a legal and open manner? Would it be possible to give him a choice between Nursing Home and Hospice care so that he could be kept comfortable at home?

There is a legitimate medical condition called, "Failure to Thrive", and it happens sometimes because people no longer have the will or desire to continue on in this world. It's part of the dying process. They are tired and no longer hold or want to hold on to the thread connecting them to this world.

Your father is 91 years old. How much longer does he have to live before it's ok to pass on and who should make that determination? Maybe he would feel loved and blessed to spend his last days at home without stress and have his wishes honored.

It may be that you have already discussed this approach with his doctor. If not, maybe you should do so. It never hurts to gather more information. It just gives a greater perspective of the possible options.

Good luck and blessing to you in this difficult time.
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A lot of your fears come from concern about your legal responsibility. Why don't you check out what those responsibilities are so you don't feel like you're operating in the dark. Start with the National Center on Elder Abuse at http://www.ncea.aoa.gov. Among their FAQs it says that many cases of elder abuse are actually self-neglect. If I were you I'd call one of their counselors and say, "I can't stop my father from self-neglect, I'm scared that makes me liable?" They are the people to help you.
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((((((jessie))))) I do agree with checking out your legal responsibilities. Once you know where you stand in that regard, you can deal better with the emotions that are aroused by seeing your father failing through self neglect.
Personally, at this point in time, if I were in my right or usual mind, which in your father's case includes autism. I would want my wishes to be respected. His quality of life is not good. There are times when one ailment or another (and none of them life threatening) descends upon me that I grow in sympathy for those who want to shed their earthly coil. However, you do have to protect yourelf regarding the law, and what you are obliged to do for your parents.
"Death is a friend of ours; and he that is not ready to entertain him is not at home." - Francis Bacon
I see various questions on this site about how to make a 90 year old more interested in eating and in activities, and I wonder for whose benefit this really is. Seeing a loved one die - quickly or slowly - is never easy. As for the right not to watch them, I am not so sure. When rights are mentioned, I tend to look at what responsibilites are attached. I think your solution of eat here, or you will have to go to a nursing home is responsible. In NHs there are people who are professionals in the care of failing seniors, and will know what the appropriate actions/treatments are. I watched my youngest son, age 23, die after being assaulted. We did what we felt was responsible which was to agree with the doctors that the plug be pulled. Rights seem to fly out the window ar these times. A friend if mine in his late 50s was in his last days of cancer and in a hospital. One morning he said to the doctors he couldn't do this any more. It wasn't that he was in such pain, as that he was just exhausted and miserable. I was staying with his wife at the time to give support, We went to the hospital, and watched while they put him on a morphine drip. Before that, they asked him if he knew what the implications were. He said yes, and indicated for them to proceed. As the morphine took effect, his body relaxed and for a while he looked his old self, with good colour in his cheeks. The end came easily. I had another friend die of cancer in her 40s, and they gave her nothing, and she suffered horribly before dying
No doubt, there are grey areas Are seniors, who are in poor health and miserable, choosing a form of suicide by refusing to eat? Or is their mind and body simply winding down from the accumulated stress of living and illness? Was giving a terminal cancer patient a lethal dose of morphine, ethical?
Jessie, my heart goes out to you, the responsibilities you have with your dad and your mum, and the emotions you are facing. Even when the relationship has not been close , a parent is still a parent.
Let us know what you work out.
jo
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When a person is very old and in pain and their quality of life is poor I see absolutely nothing wrong with letting them die with dignity. The people around them who will be "affected" need to understand that it's not their life. Sure, I didn't want my mother to die as I went to work, went out to dinner, went shopping and she was at home, suffering with nothing in her life. I realized how selfish of ME. My mother decided it was time to "go" and I understood and I love her for it. She didn't need to stick around because her death would have devastated ME. My wish for her to keep living was selfish and not fair to HER. I say, let our loved ones go in peace. I will see her again.
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I don't know, Jessie. This is a very serious, very profound question. Individual beliefs have a lot to do with our attitudes, I'm sure.

I was in ICU once for several days, with a life-threatening condition. They came around frequently to assess my pain level. They'd show a smiley face chart and ask me to rate my pain from 0 to 10. I was never in any physical pain at all, but I was extremely, deeply miserable. I wanted to know where was the anguish chart? How come I wasn't asked about that? I wanted to get better and I expected I would. (And I did, obviously.) I did not want to die. But having had that small sample of mental anguish, I tend to be a little more sympathetic to folks who are in that state and who have no hope of a cure.

Your father does not communicate. He is agoraphobic. He has lived almost half of his life in a "doomed" state. Forced contact sends him into a melt down where he is paralized and helpless. He must spend much of his life in deep anguish. I'm not sure that his misery is brought on by his own choices. If a terminal cancer patient in great pain decided not to eat, would that be bringing misery on herself? I really don't know.

People have a right to die with dignity. But not if others have to watch them? So only people who live alone have this choice? Sigh. This is really complicated, isn't it?

My husband feels VERY strongly about not being resusitated in the case of a heart attack. His health care directive also specifies no feeding tube. Since swallowing becomes an issue in the later stages of his disease I realize I may watch him not eat as his body shuts down. Would I feel differently about that than if he could swallow and simply refused to? I don't know, Jessie, I honestly don't know.

My heart goes out to you.

On a somewhat lighter note, a few years ago my husband was in ranting about never going into a nursing home. If it ever got so bad I couldn't take care of him just put him out in the back yard (this was Minnesota in the winter) and let nature take its course. We've had very calm and serious discussions on this topic, but that day I was low on patience. "If I did that, a neighbor would report me, I'd be hauled off to jail, you'd be hauled off to a nursing home, and you wouldn't even have me to visit you. So quite talking nonsense!"
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My father at 91 also wanted to die for the last year of his life -- he hadn't been well for a couple of years, all of his friends had passed, etc. One day he seriously told my mother that he wanted to die and she gave him permission -- please understand this had been a long process and she finally accepted that he'd had enough. The next day he had a massive stroke. He didn't die, but he was 'gone' . He had a living will stating that no extraordinary measures be taken in such a case and we gave him what we felt was a loving last gift, we let him go. Seven days later, he passed away. That was five years ago. Strangely, I felt immense relief and an odd sense of happiness for dad when it was over - we miss him every day, but his time had come and he knew it before his body did.
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My mother has terminal cancer. she has two colostomy bags, a fistula and a lot of pain - and she wants to die.
Many times she refuses to eat, but what we noticed is that when her grand children come over she is in better spirits and they encourage her to eat, even if its a snack. She refuses to watch her favorite tv shows or listen to music, or visit the doctor. She cries if we discuss Hospice care. She thinks she is a burden to us, no matter if we tell her otherwise. She just wants to lie and die in her bed at home. We try our best to give her whatever she wants, although it pains us to watch hers suffer so much, but in the end we want to believe we did the right thing. We don't want to wonder later on if we should have done differently.
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Suzi, I have the feeling that she does love you, she was just angry because she lost so much and was losing her home. Sometimes late in life, people lose thought of the personal costs of keeping them at home. I know that your younger mother would not have expected you to sacrifice your life the way you were doing. I don't know why older people often lose sight of this. In your mother's case, I'm sure the dementia and misery played a large part.

Sometimes things are said in a moment that are not really meant. You did nothing wrong, but I understand why you feel guilty. We all do when we are forced to do things against a parent's will. I know you didn't have any other option.

My thoughts are with you. I recently had a friend going through what your mother is with the dialysis and diabetes. It was very difficult. I hope your mother will forget what she said and enjoy your visits with her.
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The agoraphobia and fear of going to the doctor complicates everything considerably. I have been able to get him to a doctor of some type four times in the last two years. The doctor visits ended up not being meaningful and probably took a year off of everyone's life that was involved. We called the other day about getting home health to come in. His doctor said that first he would have to come in to see him. My father didn't want to go and responded by being in a most foul mood and not eating. The idea of going to the doctor again made him ill. I wish we still lived in the Marcus Welby era when doctors would make house calls. :)

I don't think Hospice could help because there no doctor has given that death was near. My father could probably live 10 more years if he wanted to. I just don't think he wants to. I feel like he has painted himself into a corner... well, it actually more like he walled himself off into it. Knowing my father, I believe the thing he fears most is having to get outside his comfort zone (chair), where he is able to control the environment around him pretty much.
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