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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 support Isn'tEasy in reminding you not to assume stuff. Among other things, don't assume you know that "the grim reaper is years away." You made comments like that a couple of times in your various posts. You may use such a comment to try to cheerlead people into taking actions that could prolong their life, but they may experience it as a denial of the reality they are grappling with. So, so SO many times we need to figure out how much of what we are doing in the name of care for someone else, is actually for ourselves. Often it's entirely legitimate to be doing it for ourselves, don't get me wrong! But it's much easier to solve problems when we're clear on what they are. You did a great job of that when you realized you needed to investigate the legal issues. Keep clarifying what's really at stake for yourself as things develop ..... Good luck.
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It is extraordinarily hard to watch a loved one refuse food. Our family recently went through this. It is a fact that loss of appetite is a part of the dying process and I truly believe that everyone has a right to die with dignity and without intervention if they choose. So many are robbed of a good death in our country.
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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Become more present yourself. Learn to live in the present moment. (People like Eckhart Tolle and Byron Katie seem to be the best teachers of this currrently.)

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!
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I'm sorry about Hospice,I'm glad Home health care came in.tho. my brother's are coming home since my mom is not doing well .Family visits are helping my mom pep up.It does help knowing your family care enough to come see there parent.so I hope for everyone that family will care enough to show up to show thier parents or parent how much they are truely loved.just never throw in the towell never give up and never give in.Just hang on to hope.Hugs to all of that are caring for their parent it is not easy.especialy the ones that are caring for their parents or parent.We pray and do the best we can!! I would never put my mom in a nursing home,my mom I will charish she took care of me when I was growing up now it's my turn,and it's everyone that their parents or parent raised them,show as much love as we can while we have them ,even make movie video of them that's what I tell my mom,I tell her their for my memorys I need that and her grandchildren need that.Even pictures are good.Hugs to all the ones that care for thier parent be patient,not easy beleive me I have been there.Keep on keepen on.make sure you tell your parents or parent that you love them! I always tell my mom how much I love her.Everyday not just once a day it brings a smile to their faces! Something you can cherish forever! Hugs everyone!
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Living wills are so important but most elders prefer not to make that decision it is easier to let their adult children make that decision -I was glad it was in place when after years of poor health he became critical when it seemed like the other times during the last weeks in rehab that he would become unresponsive for 15 min then be fine again we did keep him on life support for a few days until it was evident that his brain and heart were damaged beyond repair and then stoped all measures and he died 12 hrs. later but in the end it was what he had requested so they was no guilt on our part and his death was very peaceful and he did not suffer-if a family member has not made the decision ahead of time the person having to make that decision can only do their best with the advice of a M.D. and not feel any quilt.
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I wrote a response to JessieBelle earlier in this thread. But, I wanted to direct a comment towards everyone who has written here.

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!
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My mom is the same way and she is only 74yrs.old and does not care to live longer,smoking herself to death.But now she on Hospice 850-689-0300 They have been alot of help.If you need to get away for acouple hours so you can take care of situations they can get someone thier that can stay with your parent untill you get back home,and they can help with your bills anything you need help thats what there thier for..God Bless You!!
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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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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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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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JesseBelle, Does your father like watching movies? I have gotten my SD sets of old cowboy movies, and also travel DVDs...where they show and talk about places around the world. I have also given cologne, and "nice" toiletries to my SD...even gave him a shoehorn with a long 2 foot handle...he really liked that! :-)
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That sounds good, Jessie - and hopeful. I don't think they need much food at that age. Mother has had to cut back on what she eats due to stomach problems, and she is amazed how little she can manage on, and not lose weight. She has always had a good appetite (all of us do.), Hmm, thinking of a Valentine's gift. Does your mum have any ideas? Would he like a card or flowers. I know they are mostly for women, but he might enjoy having something to look at, or a special pillow, or something else to make him comfortable - even slippers. I.m running out of ideas here. maybe someone else has some.
You sound more cheerful. I am glad. This is not easy!
(((((((hugs)))))
Joan
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Hi, Joan. Dad seems to have a new lease on life. We have home health coming in for three weeks. It was the longest Medicare will pay now. We were hoping to get someone to give him baths, but we will have to pay for it OOP, it seems. He doesn't qualify for Hospice. We're just taking one day at a time right now. He is eating fairly well for him. It isn't much.

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. :)
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jessie - how are things going?
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I take care of my mom,my dad past away 2010 it's hard ,I know what you are going through,my mom is 74yrs.old she has C.O.P.D.her Doctor has ask her repeatedly to try and quit smoking she is now on Ox. she has heart trouble ,osteoperoses and may have throte cancer.And she is diabetic,I got her on Hospice so she has nurses come out twise a week and a aide to come twice a week sometimes she doesn't want anyone to come see her or to get a shower.She is only 84lbs.she is getting to where she doesn't want to eat anything,Now Hospice says she has anywhere from 1 to 3 months to live.I am not ready to lose my mom,She's my mom and my best friend in the whole world.It hurts my heart to see that she won't eat .Her nurse says to not forse her to eat.Her nurse has been trying to sign a paper to not be ressesatated if she dies.Tho she is not ready.The nurse is telling her what could happen to her bones like they can break if C.P.R. is used because she is so thin.I love my mom too,And feel for you,Be comforted tho your dad is 90 yrs.old and has lived a long life.I will pray for your situation.Maybe you could get Hospice involved they are very helpful,they can even come sit with your dad for 1 or 2 hours if you have things to take care of or have to shop for grocery's they also help with her prescripions ,and check blood pressure and for swelling,and tempature.So think about it.My mom didn't like the company at first but now she likes to see them sometimes.Hospice has been a true blessing they also help get thier phone bill and electricity bill lowered and for funeral arangements.I'm so glad I called for their help.Your dads doctor can also put in a request for Hospice.
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I appreciate your concerns about legal issues and can understand that you don't want to be held responsible for your father's actions. As others have mentioned, talk to your local Area on Aging group and get some legal and medical guidance. It's just a phone call away and you can do it. Talk to his doctor. Talk to Hospice. They are a great source of information. Don't just dig your heels in and say it has to be your way. Educate yourself, even if you assume to do so may go against your principles. It may not and you have nothing to loose in talking to those that have more experience with these issue than you do.

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.
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Thank you for the discussions, everyone. I am in favor of the right to die with dignity. I was more concerned about the legal problems involved because my father refuses medical care. There are liability issues in allowing someone to die through self neglect who is under one's care. My father is eating now. In fact, today he was even hungry and asked for food. I'm not so worried at the moment.

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.
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JessieBelle, take a look at compassionandchoices dot com. It is a website for people who chose to die on their own terms rather than prolong a life they don't want to live. They promote a process called VSED, Voluntarily Stop Eating and Drinking. My mother-in-law followed the process successfully when she was taking 600 mg of methadone a day for her pain. She chose VSED as an alternative to bankrupting her estate paying for pointless and ineffective care designed strictly to postpone death and rake money into health care providers. If the shoe fits, by all means put it on. Good Luck. God Bless You.
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On reflection, the simple answer is, let them go. They're going to find a way to go anyways. You or anyone trying to stop this is just going to make more agony (all forms) for everyone involved. Usually, being brutally honest, trying to keep someone alive against their will is selfishness. It doesn't matter what the diesease(es) is. I think the American culture of saving everyone of everything for any reason complicates the issue beyond reason.
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Cattails...

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.
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Thank you cmagnum. White Kitty is a lesson I will always remember. We are responsible for making our choices known. White Kitty did, but he was just a cat and we ignored his wishes; purely out of love and kindness, but he knew best and had a basic instinct that many of us forget or ignore.

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.
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Your white kitty story makes a lot of sense and raises some important issues.

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.
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Suzi, when you say that your mother resents you more, I gather she resented you earlier before going to the nursing home? I think her dementia has a lot to do with this.

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.
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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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Emjo, thank you for sharing your personal experiences with us. This is a very difficult topic, and it can be very helpful to hear about how others have approached it.
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sumlerc, it sounds like you had good success with your father. Communications with my father are more difficult. He is deaf, so we have to write notes. And he does not communicate very well even when asked. If I ask him what he would like, he responds that he will have whatever we want. But he wants just a little. I've gotten so tired of the phrase "just a little" that I won't to strike the words from the dictionary. :) His meaning when he says just a little means about three bites of food -- not enough to live on. So I give him just a little, but make it enough he can live if he eats it. Most of the time he sneaks most into the garbage when he thinks no one is looking.

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.
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waddle, what you wrote about being alive and living is so true. It made me sad to read about what you went through with your mother. I know how painful it was. I've known several older people who just lost their appetite for some reason. They weren't anywhere near death, and some had not even lost the will to live, but without eating, their bodies just couldn't keep going. That your mother chewed and then didn't swallow the food reminds me so much of some of the eating disorders that young women face. I don't know if we will ever understand the complex human animal.

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.
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Jessiebelle,
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.
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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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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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