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 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. :)
You sound more cheerful. I am glad. This is not easy!
(((((((hugs)))))
Joan
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.
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!
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!
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.