What do you do when an elder parent decides that they no longer want to live?

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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?

Answers 1 to 10 of 44
If your father had terminal cancer and was in pain, would you feel differently about his "rights" in the situation? This is a sincere question, not meant to be argumentative at all.
No, I would feel the same. I believe in the right to die with dignity, but it is clouded in this circumstance when the process of dying is a choice made because life has become miserable. And when the misery is brought on by personal choices -- in this case, loss of vitality because of not eating and self neglect. It is also clouded because people around him are affected by what he is doing. What compassionate, moral, and legal things have to be considered by the people caring for him?
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!"
Your lighter note hit it right on the head. It is not just him making the decision for himself. He is dragging others into it. For example, what if he did die because of starving himself and I was arrested for letting him do it. My mother is old and not of very sound mind, so they would probably let her off. Me, I might be in trouble.

Plus, it is hard to watch your parent wasting away when it is a choice, however deep the misery.
mom eats all her food when hospitalized or in nursing home rehab, but when at home with stepdad taking care of her, he depends on meals on wheels and doesnt cook for her. she is malnutrition, but nothing I can do about it. That is her caretaker and her husband.
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.
Thank you so much. I got on to my father and told him to just quit it. It is a bit better now. I am bookmarking the link to look into everything later today. The right to die issue is very complicated when other people are involved. If he had visited a doctor and the doctor gave him a week or two to live, it would be one thing. But since he won't visit a doctor, it leaves people around him very vulnerable legally when it comes to making choices. If he begins starving himself again, we may have to take him the hospital for admission to a NH because of liability issues. I wouldn't want to do that. Maybe someone at the link will have some good advice.

For now all is well. Cross fingers.
((((((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
I also had a similiar situation also! My 72 yr old mother who is already on dialysis 3 days a week and 4 hours at a time. She has to be stuck by these HUGE needles into her Fistula that they have installed thru surgery to do her dialysis. Then she contracted C-Diff in her stool. She also is a diabetic, who now has a Necrotic Toe, and has breast cancer on top of all that! She has already had 1 lump removed right after Thanksgiving. She still has to have the surgery to remove the toe and needs to have the surgery to remove more cancer cells in the breast! She is also blind and now has a diagnosis of Dementia!! I had no choice as her care requires 24/7 care and putting her in a Nursing Home was the last thing I wanted to do! I was taking care of her at home and I have 1 14yr old daughter who always had to sit with a sitter, or could not let a friend spend the night or even go over to spend the night anywhere! It was rough and Mother resents me more than ever and cannot see why I made this decision! It really hurts when I tried so hard not to have to put her there! She does not love me anymore she sd! I just hold on til I get to my car and then the waterworks begin! Lord, Jesus, help me!!!
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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