Parkinson's with diabetes and dialysis end of life...

Posted by hotfooted @hotfooted, Feb 28, 2020

My 54 yo son is in a skilled nursing facility as of 3 days ago.. he had been hospitalized for unable to keep food down the past almost 2 weeks. When he went to clinic for dialysis he had a bad seizure, first one for him.. that’s when they took him to hospital.. While there he began hallucinating too.. He is still being taken for dialysis as of yesterday, but he cannot even hold his head up or lift his arms.. his hands are clinched tight, so he has to be fed.. At this new “home” he is suppose to make progress to be able to take care of himself.. that’s impossible for him… I’m sure they will want to move him to a different “home” very soon.. He always told me that when he couldn’t take care of his bathroom needs that he wanted to just let life go.. I know that he doesn’t want to continue living with all of these things gone so bad… If he stops dialysis he will die… The decision to stop is about to fall on me, his mom.. I hope that it doesn’t come to that, but know very well that it is… To complicate things even more, his daughter my granddaughter, also has serious kidney issues now.. She was in hospital with sepsis 3 months ago, then out and working for 2 weeks, then back with another serious infection.. Doctors found that she has 2 small shriveled kidneys on one side and 1 kidney working at 80% on the other.. She gets reflux that keeps reinfecting her, thus has to go on periodic antibiotics for that.. She is also bipolar… Besides my husband, these are my only close relatives.. We are in our mid 70’s and I am also diabetic and have serious neuropathy in my feet and legs.. Husband is emtionally fragile, so I always try to protect him from any stress.. I guess, after writing all of this down in what seems to me as a logical order, I can see the handwriting on the wall.. and know a bit better how to handle our situation..
I appreciate any responses to my situation… and thank anyone for listening to me..

@hotfooted

Hi Ginger.. and thank you for your kindness in responding to my cry for help… Things are moving along rather quickly.. Of course, we knew these days were coming, but still it seems so sudden… There are so many things that we have to deal with besides the immediate health change for our son.. He lives in a house that we purchased for him to live in when he first got too sick to continue working.. It's in one state and we live in another, 500 miles away.. so there is that… Also, he had 2 little dogs.. one was very sick with a tumor and had to be put to sleep. the other is a wonderful little guy, but he has a few things that make him unadoptable, I'm afraid.. He's an indoor/outdoor doggie door pet, but was never socialized to be around other dogs or children, plus he pees anywhere.. My son has been sick all of the little dogs life and never taught him manners.. All of a sudden little PJ's world has been turned upside down.. and he's all alone… So this is one more terribly sad event for Mom to take care of… It really hurts me…

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Hello @hotfooted,

I am so sorry for what you are going through. I would like to applaud you for the great care you are giving to your son. You have been encouraging and supportive in so many ways since he became unable to work. I have no doubt that you have no regret for what you have done to help him.

As @gingerw said, it is important to give yourself some care now. Take a break every now and then from this journey and allow yourself to take some deep breaths, a short walk and enjoy some of your favorite music.

In what ways are you finding the hospice care to be helpful to you and your son?

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@hotfooted

Hi Ginger.. and thank you for your kindness in responding to my cry for help… Things are moving along rather quickly.. Of course, we knew these days were coming, but still it seems so sudden… There are so many things that we have to deal with besides the immediate health change for our son.. He lives in a house that we purchased for him to live in when he first got too sick to continue working.. It's in one state and we live in another, 500 miles away.. so there is that… Also, he had 2 little dogs.. one was very sick with a tumor and had to be put to sleep. the other is a wonderful little guy, but he has a few things that make him unadoptable, I'm afraid.. He's an indoor/outdoor doggie door pet, but was never socialized to be around other dogs or children, plus he pees anywhere.. My son has been sick all of the little dogs life and never taught him manners.. All of a sudden little PJ's world has been turned upside down.. and he's all alone… So this is one more terribly sad event for Mom to take care of… It really hurts me…

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@hotfooted Everything sounds so difficult for you and your family. I haven’t got much helpful advice that others haven’t already expressed. But, I can maybe help with the dog. We just adopted a dog that sounds very much like your son’s dog. He’s very small, toothless, blind and has a terrible skin infection. He was in a hoarding situation and then was a stray on the streets. How could I not adopt him?! We bought dog diapers and have been teaching him to go outside on a regular basis. After 1 month, he’s a different dog! Find a rescue group near you—they will help. That will set everyone’s mind at ease, especially your son’s.

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@becsbuddy What a great idea! Animal rescue groups have great resources to help animals. They even have "foster parents!"

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@becsbuddy

@hotfooted Everything sounds so difficult for you and your family. I haven’t got much helpful advice that others haven’t already expressed. But, I can maybe help with the dog. We just adopted a dog that sounds very much like your son’s dog. He’s very small, toothless, blind and has a terrible skin infection. He was in a hoarding situation and then was a stray on the streets. How could I not adopt him?! We bought dog diapers and have been teaching him to go outside on a regular basis. After 1 month, he’s a different dog! Find a rescue group near you—they will help. That will set everyone’s mind at ease, especially your son’s.

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Becky, we have called everywhere about Dan's little dog and they all say that because he pees indoors, hasn't had his shots, or been neutered that he's unadoptable and they will not take him in.. He is a wonderful little dog other than those 3 things.. so I still don't know what will happen to him.. it's heartbreaking…
My son is on hospice now and with morphine and being out of pain at last he is resting well, even has his apetite back altho he cannot handle a fork or spoon. He did hold his hamburger and fed himself, after I cut it in two pieces.. He said this is the first time in such a long time that he feels good.. Too bad that it's so near the end of his life.. The hospice nurse told us, including my son, that by stopping dialysis he wouldn't live more than 2 or 3 weeks now.. It hurts so much to be losing him…
OMG!!!!!!!!!!!! My husband just called from the nursing home to tell me that the young man we talked to this morning about doing work on son's home … called and said he has found PJ a home, he thinks! That his neighbors dog just died and they want to meet PJ… I thank our God for the wonderful way he works for good in our lives! AMAZING GRACE!!!!

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My beloved son has gone peacefully into that good night now… Hospice came to the nursing home and kept him as pain free as he would allow.. He lived one week after beginning hospice care.. It was a blessing to see him relieved of the pain that he's lived with for so long and I sat many hours by his bedside..
He was loved and revered by so many many friends from his school days especially.. My granddaughter posted his passing on FB and there has been a huge outpouring from them, which is helping her… with even her own friends telling how much he meant to them.. His former wife is arranging a day for everyone who loved and admired him to come together and share a few hours together… It's what he would have loved, being with his friends…

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@hotfooted

My beloved son has gone peacefully into that good night now… Hospice came to the nursing home and kept him as pain free as he would allow.. He lived one week after beginning hospice care.. It was a blessing to see him relieved of the pain that he's lived with for so long and I sat many hours by his bedside..
He was loved and revered by so many many friends from his school days especially.. My granddaughter posted his passing on FB and there has been a huge outpouring from them, which is helping her… with even her own friends telling how much he meant to them.. His former wife is arranging a day for everyone who loved and admired him to come together and share a few hours together… It's what he would have loved, being with his friends…

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Hello @hotfooted,

Please accept my condolences on the loss of your son. He sounds like a wonderful person who will be missed not only by his family but by a large group of friends. You must be very proud of the way he lived his life!

I trust that this empty place in your heart will be filled with love and great memories!

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@hotfooted

My beloved son has gone peacefully into that good night now… Hospice came to the nursing home and kept him as pain free as he would allow.. He lived one week after beginning hospice care.. It was a blessing to see him relieved of the pain that he's lived with for so long and I sat many hours by his bedside..
He was loved and revered by so many many friends from his school days especially.. My granddaughter posted his passing on FB and there has been a huge outpouring from them, which is helping her… with even her own friends telling how much he meant to them.. His former wife is arranging a day for everyone who loved and admired him to come together and share a few hours together… It's what he would have loved, being with his friends…

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@hotfooted May the peace of knowing your son is relieved of suffering, buoy you in these difficult days. I like your words that show he was in control of how much pain medication he would allow.

May you be comforted by all the positive things that have happened, and the messages of support.
Ginger

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@hotfooted

My beloved son has gone peacefully into that good night now… Hospice came to the nursing home and kept him as pain free as he would allow.. He lived one week after beginning hospice care.. It was a blessing to see him relieved of the pain that he's lived with for so long and I sat many hours by his bedside..
He was loved and revered by so many many friends from his school days especially.. My granddaughter posted his passing on FB and there has been a huge outpouring from them, which is helping her… with even her own friends telling how much he meant to them.. His former wife is arranging a day for everyone who loved and admired him to come together and share a few hours together… It's what he would have loved, being with his friends…

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@hotfooted
I am so sorry to hear about your son. From what you have said, he tried to live his life as best he could without being a burden. If it’s any comfort to you, the outpouring of love from so many people, says it all. You and your family have been an inspiration to us all.
Thank you for trusting us in this difficult time. Becky

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