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 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!"
Plus, it is hard to watch your parent wasting away when it is a choice, however deep the misery.
For now all is well. Cross fingers.
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
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.
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.
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."
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.
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.
After my Father had the big storke 2 yrs ago, he went from hospital to NH Rehab to full time NH. He was refusing foods and meds, took out his feeding tube. I asked him was he ready to die? Fearing what he might say I prepared for the worse but he said no, he just wanted to be left alone. Well the NH couldn’t chance his behavior, Dad was placed in Emergency Hospice, 2 weeks later he went to a different NH for Hospice care, 6 mos later taken he was off of Hospice care.
Dad is still here, eating when and what he wants to eat on NH schedule. He does not like the food but apparently, he gets enough to satisfy him, he’s not loosing weight anymore and he has regained some of his independence. I take him some of his fav foods or treats…ones he can swallow, he loves that.
I’m thinking, have a conversation with your Dad to find out where his mind is then maybe you can fit eating back into his life. Maybe he needs an appetite booster, or a meal replacement like boost that comes in different flavors. Perhaps a dining companion, or meals brought in? I’m really back to asking him what does he want.
I hoping you find an answer soon.
I know that you miss your mother. It is a terrible and helpless feeling to watch a loved one wither to nothing when there is no clear reason.
My father ate fairly well today. I hope that it will keep on like this so we won't have to make any drastic decisions. Fingers still crossed.
He used to supplement his meals with abundant sweets and ice cream, but he stopped doing that. I cooked him a peach pie, but he won't eat it. Nothing tempts him anymore.
As long as he eats like he did today, I won't worry. Maybe he is getting over all the upsets of the past couple of months.
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.
You truly did the best you could and when your mother's care got over your head, you made the best decision possible. I am hearing a lot of guilt for nothing that you have done that is morally or legally wrong.
Speaking of resentment, does your daughter have any resentment over not having had a mom for a while and sometimes not even having her own home from time to time? Since a husband is not mentioned, I guess you are a single mom which makes your life even tougher.
The crying may be anticipatory grief and or even depression which you might need some professional help with. I wish you well.
I think the best way to prepare is to let our choices be known through a living will and make sure others know about it as well as where it is.
I have taken care of my parents for the past seven years. My mom passed away three years ago. My dad, age 89, now lives with us and needs 24/7 care due to a stroke he suffered last July. He was a very independent person, very much a White Kitty type of personality. I wish he would have made it clear what to do in the case of a critical situation. To my shame, I didn't press him on that matter. I was so tired from the trials and tribulations of my mom's care that when she passed I just was worn out. In all fairness to myself, my Dad could have volunteered his thoughts about the end of life issues and I think he did in some ways, but not clearly enough for me to rule out intervention during his stroke.
I don't necessarily regret the decisions we made, but let me qualify that statement: At the time of my dad's stroke, I felt he was doing everything he could to prove he wanted to continue to live, so I supported that. If he had told me in advance to let him go if such a medical issue occurred, I would have honored that, but he didn't. And since he was trying so hard to get better, we supported that. He spent 3 months in rehab and then we brought him home.
In retrospect, it would have been better, in my humble opinion, if he had NOT gotten all the extra care, feeding tube, etc., because this is NOT the life, or what's left of it, that he would have ever wanted to have. On the other hand, if I had not done the medical intervention, I would have always felt like I betrayed him.
Sometimes us humans only know what we really want when we are well. We know we don't want to suffer. We know we don't want to be something that can only eat and eliminate waste. When life gets to that point or has a high probability of getting to that point, then we need to have some clear directives to let those closest to us know that we chose to go, RATHER THAN TAKE THE CHANCE, that we will continue on in a state that is so much less that what we would have wanted to endure.
The choice to end a life or continue the fight is ALWAYS the major issue. How do you know when enough is enough. You don't!!!! There is no perfect answer. You have to proceed on the wishes of those you are honoring.
White Kitty's life was simple. He just knew it was time. Being a cat, he didn't need a lawyer, he just found a bush and decided to die there. Unfortunately for him, those of us who loved him pulled him back to live on in a manner he had not wanted.
I hope that those who follow our generation are given more concrete guidance as to what our wishes our in our later years. I will be 63 this month and I know I don't want the life my Dad has at this time. I need to make sure that my family has a clear understanding of what my wishes are. They should not have to agonize over choices and then spend God knows how long taking care of me or putting me into a nursing home. Personally, I'm with White Kitty. I should probably put this example into my medical directive. It may be too late for our parents, but it's not to late for us.
Excellent posts. When my mother stopped eating, several weeks before her death, I too thought of a cat, an 18 year member of my life and family, who suddenly stopped eating. I was told by the vet, it could be a temporary thing but keep an eye on her because it's common that cats stop eating when they're ready to go. Except for some arthritis, she was healthy. Her teeth were in good shape and there were no obstructions to prevent her from swallowing. I put her down within the week, as her eating didn't resume.
I am not offended that you use the White Kitty story to guide you, that you learned from it, or that you shared the story with us in order to make comparisons. I get it.
I will take the comparisons further. I can remember having a hard time getting the words out of my mouth at the vet's office, to give them the directive to euthanize Lilly. I wanted to make sure I was doing the right thing because the decision is so final. I wanted to know...needed to know...that this decision was best for her. I remember telling the vet assistant, who was assisting me in coming to terms, I don't want to do what's best for me. I want to to do what's best for Lilly. That was what was causing turmoil in my head.
JessieBelle's father, IMO, is giving signals, perhaps subconsciously, that he's tired with all his medical hurdles he's had to face. He maybe feeling guilty (especially common with men) and doesn't want to express it. Or, it's an instinctual thing that he himself is having to come to terms with. In other words, he didn't wake up one day and say...I'm going to stop eating. It perhaps is/was a natural thing that he doesn't need as much, doesn't have the desire for food....perhaps he doesn't know. My mother couldn't and didn't explain her lack eating.
Whether or not one intervenes and tries to thwart the continuance of non-nourishment, and the decline that will follow...is the tough question. I agree, his desires should be the guide.
The different situations do bring up the problems with the right to die issue. In cases of assisted suicide where a drug was administered, I've wondered why the person who no longer wanted to live involves people he/she cares about. If the courts decide to pursue it, murder charges could be brought against the helper. In a case such as ours, elder abuse charges could have been brought because he was not under medical supervision in his decisions. Very tricky issues involved here. I did not want to risk going to jail because my father decided he didn't want to live. This is why I decided if he chooses to starve himself, he should do it under supervision in a NH, or at least under the watchful eye of a doctor.
I appreciate that you are in favor of a right to die with dignity, but I think that you might be a tad partial to judging what that means for different people. In some states, people are given the right to chose to end their lives. Why do they involve people that they care about? They just may want permission from those they love, some support, understanding, forgiveness, and the opportunity to say good-bye. Your father is not asking you to assist him in suicide, he is just saying that he does not have a desire to continue living. There is a big difference.
If he is eating better now, then I am happy for you and hope that it continues. My guess is that the issue will come up again and how you choose to respond will make a difference in the comfort he feels at the end of his life.
My heart goes out to you and to your parents. It's no fun to have to face these issues with them, but how we do it does make a difference in their passing.
You have to do what is right for you morally and legally, but examine your heart and ask yourself if you don't lean more to the moral aspects than the legal ones. Get some guidance on the legal issues. Your father will not eat forever. The moral issues and the desire to spare yourself from seeing your father die may be the bigger obstacles for you in the end.