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?
I am deeply touched by your comments. Your situation mirrors what my family experienced with my 84 year old mother. We lost her in April. She had early dementia, high blood pressure, poor hearing, declining mobility but otherwise was in good health. No heart, kidney, lung or cancer problems. Shortly before her death she overcame two hospitalizations and the ailments that led her there. But, due to her lack of eating and becoming weak in the hospital she was placed in rehab, ordered for two weeks. This was to strengthen her so that she could return home and have a better quality of life and to help my father and family. She never returned home. The lack of eating took its toll.
There were no physical reasons for her not swallowing. She swallowed liquids. She had an appetite, but would say things didn't taste good. Upon encouragement she might chew food, but then not swallow. She would spit it out. She could not explain why. Two weeks and one day after entering "rehab" (and several weeks of not eating properly) she was gone.
Your father's lack of eating is the major concern here...from my viewpoint. There are various steps that can be taken with him such as...pureeing the food...eating with him (making it an event) and perhaps feeding him...but those would be short term. So then the only other option is a feeding tube. In my family, this was misunderstood by my father and siblings and was declined as a treatment. IMO they confused the feeding tube as an "end of life" decision rather than a treatment to build strength in rehab and go home...which was the goal of placing my mother in the rehab facility.
Feeding tubes can be controversial as part of living wills (end of life decisions). It should not be confused with using it as a treatment with the endeavor of improvement. But, the use and intent of a feeding tube is often misunderstood.
If your father refuses the use of a feeding tube then there is really nothing more you can do. He may very well be ready to go...he's just not saying it...which would be par for the course. You've said he's not a man of conversation. He may also be trying to resolve this with himself.
It's sad and tough to watch someone slowly wither away. (been there!) But, I think there comes a time that they are tired of life's hurdles. Use this time to get your head and heart around what is coming. You will need to be strong for your mother, and that will help you through it. At least that helped me.
I'll close with a comment a doctor told me concerning a life in decline...it has helped me resolve turmoil in my head and letting a parent go...
"There is a difference between being alive...and living."
Here recently, my Mom has been expressing her desires to rest in peace. At first i wanted to dismiss it as her over exageration once again, but I see now that she really means it. On visit with her this past Fri, she told me that she has nothing more to live for and is tired of it. She said she knows its against God's law to commit suicide but she wishes she could just go to sleep and be done with it.
This hurts me like hell! but I also know that my 96 yr old Dad and my 88 yr old mother are tired. They have their disabilites but choose not to work around them, citing every reason why they cannot do anything. I'm tired too of trying to cheerlead a quality of life for them. I only wish they could rest in peace for they truly deserve it.
What's the answer? I dont know but I know there's got to be a better way.
Peace and blessings.
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.
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
For now all is well. Cross fingers.
Plus, it is hard to watch your parent wasting away when it is a choice, however deep the misery.
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!"