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

Posted by hotfooted @hotfooted, Feb 28 11:58am

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..

Wow. This is such a difficult situation. I am so sorry that you are going through this. I will leave the words of wisdom to others with more experience in this type of caregiving, but please know that my thoughts and prayers are with you and your family.

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I agree with coloradogirl. I’m caring for my mom with Alzheimer’s but my experience is nothing like yours. You are in my thoughts and I’m wishing you and your family peace and comfort as you face your daily challenges.

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Hi @hotfooted, Am I understanding correctly that your son has been at a nursing facility for some time now, but was recently admitted to hospital due to further complications. In other words, failing health has been on the horizon but has taken a sudden, unexpected turn for the worse. Did I read that right?

Do you and your son have access to palliative care in the region he lives? Do you live close by?

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Dear @hotfooted, your story reminded me of my moms long battle with kidney disease and stroke. She died in 2018 when her lone kidney completely failed. She had dialysis several times at the end of her life and had also been blind for nearly a decade from one of several strokes. Your family is so fortunate to have someone like you caring for them. You have been gifted with the unique ability to shoulder their burdens as your own. Not everyone can do what you are doing which is so commendable! I too was in a similar situation with my mom as you are currently with your son. During her decline despite that fact that I have other siblings who could have helped take charge of her end of life issues I was the one who was with her when she passed along with my dad.
I often wonder why I was the only one there at the end for her. I now believe it was because I was the only one who COULD be there for her physically and spiritually.
Sincere thoughts to you and your family as you make important decisions on their behalf. They undoubtedly have a dedicated caring advocate they can trust in to do the right thing for them.
Bless you.

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@hotfooted Your story is such a difficult place to find oneself. Has your son been able to do a living will of any sort, that puts his wishes down in writing? I don't know if the state where you live might not accept a video of him stating his wishes? This would alleviate some of the stress on you having to make a decision. What a burden, having a granddaughter and husband also with health concerns, beyond your own. Is there a faith community that you could lean on for support, palliative care group, even reaching out to hospice in your area? I think any of those groups might be of some assistance as you journey through this. How can we support you today?
Ginger

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@colleenyoung

Hi @hotfooted, Am I understanding correctly that your son has been at a nursing facility for some time now, but was recently admitted to hospital due to further complications. In other words, failing health has been on the horizon but has taken a sudden, unexpected turn for the worse. Did I read that right?

Do you and your son have access to palliative care in the region he lives? Do you live close by?

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Hi Colleen.. My son has been living alone in his own home, but with a caregiver who lived next door and would come any time he called for help day or night.. She came every day to take care of him and the house for several hours, plus took him to doctor visits, appmts. and did all the shopping for him.. It all came to a halt less than 2 weeks ago when he went into a seizure at his dialysis clinic. That's when they transported him to the hospital.. After a week in hospital he was moved to a skilled nursing facility. Today he was taken back to dialysis, but he's now wearing a diaper and can't control his bowels.. had a very emabarrassing episode.. He was returned to the nursing home, cleaned up, but refused to go back for dialysis.. When I got there I met with the head nurse, we filled out new DNR etc to stop dialysis. I signed all the papers and bear full responsibility now. Monday I will speak with Hospice about controlling his pain level and keeping him comfortable. His dad got here last night from our home out of state. They spoke of Christ and our beliefs.. thankfully, our son is a believer and has been for many years.. He is at peace now with what is happening to him, but since he does hallucinate off and on he isn't always fully with us in the moment.. I'm holding up okay so far.. but it's been a blessing having my husband here with us today.. and I'm keeping careful watch on him, too.. He couldn't stay with Dan very long today and there are enough things to keep him busy at Dan's home.. He is best kept busy and removed from the emotional pain and stress.. Our granddaughter called her dad yesterday and said she was coming to see him at the nursing home, but he told her not to.. She has taken family leave time and we are keeping as much sadness and stress off her young shoulders as we can.. She realizes that it's necessary, too.. I am so very thankful for my loving family and that we live with faith in our Creator, whom we call God… I so appreciate the kind thoughts and words that so many have expressed on this forum for us.. It's a help and relief and eases my pain to be able to express my thoughts and feelings.. Thank you all so very much…

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@gingerw

@hotfooted Your story is such a difficult place to find oneself. Has your son been able to do a living will of any sort, that puts his wishes down in writing? I don't know if the state where you live might not accept a video of him stating his wishes? This would alleviate some of the stress on you having to make a decision. What a burden, having a granddaughter and husband also with health concerns, beyond your own. Is there a faith community that you could lean on for support, palliative care group, even reaching out to hospice in your area? I think any of those groups might be of some assistance as you journey through this. How can we support you today?
Ginger

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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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@kandc317

Dear @hotfooted, your story reminded me of my moms long battle with kidney disease and stroke. She died in 2018 when her lone kidney completely failed. She had dialysis several times at the end of her life and had also been blind for nearly a decade from one of several strokes. Your family is so fortunate to have someone like you caring for them. You have been gifted with the unique ability to shoulder their burdens as your own. Not everyone can do what you are doing which is so commendable! I too was in a similar situation with my mom as you are currently with your son. During her decline despite that fact that I have other siblings who could have helped take charge of her end of life issues I was the one who was with her when she passed along with my dad.
I often wonder why I was the only one there at the end for her. I now believe it was because I was the only one who COULD be there for her physically and spiritually.
Sincere thoughts to you and your family as you make important decisions on their behalf. They undoubtedly have a dedicated caring advocate they can trust in to do the right thing for them.
Bless you.

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Hi.. I appreciate your kind sharing of your mom's kidney failure and know how difficult it had to be for you to be the only child your parents could count on at the end of their lives..
Tonight at the nursing home my son made a comment about the male nurse and myself trying to get him changed and comfortable in bed for the night.. He said that we were quite the trio with him blind, my deafness, and the nurse didn't speak English… It's good to be able to laugh at that now… smile…

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@coloradogirl

Wow. This is such a difficult situation. I am so sorry that you are going through this. I will leave the words of wisdom to others with more experience in this type of caregiving, but please know that my thoughts and prayers are with you and your family.

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Dear coloradogirl… Your precious prayers are most appreciated… Thank you, that's a wonderful gift!

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@providence1960

I agree with coloradogirl. I’m caring for my mom with Alzheimer’s but my experience is nothing like yours. You are in my thoughts and I’m wishing you and your family peace and comfort as you face your daily challenges.

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providence1960… Alzheimer's is a dreadful thing to have to deal with… I'm offering a prayer now for the two of you…
Blessings on you…

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@hotfooted

Hi Colleen.. My son has been living alone in his own home, but with a caregiver who lived next door and would come any time he called for help day or night.. She came every day to take care of him and the house for several hours, plus took him to doctor visits, appmts. and did all the shopping for him.. It all came to a halt less than 2 weeks ago when he went into a seizure at his dialysis clinic. That's when they transported him to the hospital.. After a week in hospital he was moved to a skilled nursing facility. Today he was taken back to dialysis, but he's now wearing a diaper and can't control his bowels.. had a very emabarrassing episode.. He was returned to the nursing home, cleaned up, but refused to go back for dialysis.. When I got there I met with the head nurse, we filled out new DNR etc to stop dialysis. I signed all the papers and bear full responsibility now. Monday I will speak with Hospice about controlling his pain level and keeping him comfortable. His dad got here last night from our home out of state. They spoke of Christ and our beliefs.. thankfully, our son is a believer and has been for many years.. He is at peace now with what is happening to him, but since he does hallucinate off and on he isn't always fully with us in the moment.. I'm holding up okay so far.. but it's been a blessing having my husband here with us today.. and I'm keeping careful watch on him, too.. He couldn't stay with Dan very long today and there are enough things to keep him busy at Dan's home.. He is best kept busy and removed from the emotional pain and stress.. Our granddaughter called her dad yesterday and said she was coming to see him at the nursing home, but he told her not to.. She has taken family leave time and we are keeping as much sadness and stress off her young shoulders as we can.. She realizes that it's necessary, too.. I am so very thankful for my loving family and that we live with faith in our Creator, whom we call God… I so appreciate the kind thoughts and words that so many have expressed on this forum for us.. It's a help and relief and eases my pain to be able to express my thoughts and feelings.. Thank you all so very much…

Jump to this post

@hotfooted Your journey is a trial, no doubt. You are a strong woman, and all family members are looking up to you to assist them. In those dark times in the middle of the night or whenever they come, please remember we are here for you. Take care of yourself, too.
Ginger

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@hotfooted

Hi.. I appreciate your kind sharing of your mom's kidney failure and know how difficult it had to be for you to be the only child your parents could count on at the end of their lives..
Tonight at the nursing home my son made a comment about the male nurse and myself trying to get him changed and comfortable in bed for the night.. He said that we were quite the trio with him blind, my deafness, and the nurse didn't speak English… It's good to be able to laugh at that now… smile…

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Reading your post…there is a relief in humor and laughter. My best wishes to you and yours on the journey.

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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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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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