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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In our case, about half of the family was able to come to terms with the refusal to eat, the others continued to urge him to eat right up until he lost conciousness. It's a very individual thing. There's no right or wrong way to feel about it. Don't assume your dad won't qualify for hospice. Hospice does make housecalls and they will support your whole family in coming to grips with the situation. It's definitely worth doing an evaluation.
Don't assume that your dad will pass quickly if he enters a NH. As his condition worsens, he may wind up going in and out of the hospital from the NH, undergoing one invasive and intervention after another (with your family dragged through each heart-wrenching ordeal), if he enters the NH without being under hospice care. The NH has to respond to the patient's condition and if it becomes life-threatening, he would be rushed off the the hospital (over and over again). Considering how he reacted to a simple doctor visit, that would be torturous for him.
Best of luck.
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That is the only way you can help him.
And....as a great by-product, you lessen your chances of being caught inside your mind in your later years.
As the saying goes "get out now!" ....of your mind, I mean!
I lost my mother in April. I hadn't found Agingcare.com until after her death. I wish I had known about it before she passed as the articles and commentary would've been helpful in making decisions and dealing with one of the hardest journeys we face in life. Better late than never. The marvelous feedback from all of you has been comforting and inspiring to me in looking back at what transpired with my mother...and looking forward.
You all are angels...thank you for your time, your words, your thoughts, your compassion!
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.
You sound more cheerful. I am glad. This is not easy!
(((((((hugs)))))
Joan
I am starting to wonder if he just needed some positive attention. Maybe he just needed reminding that someone does care about him. I have to figure out something to get him from Mom on Valentine's Day. It is not an easy task when someone is 91 and doesn't like candy. :)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.