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My 72 year old wife with limited mobility is on dialysis. I suspect early dementia. She has not been diagnosed as such. She is currently in rehab to regain leg strength as we lost the ability to transfer at home due to a recent UTI sepsis infection followed by COVID. I have been her full time caregiver for over a year and am fit enough to handle the task as we have a lift, sliding shower chair, all that stuff. If she progresses to later stages of dementia and is on dialysis...what do you do??? I imagine you can't know till your there. Anyone been there???

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I am not "going there". That is to say, I as a retired RN have long ago said I would not accept dialysis to keep me alive either temporarily or permanently. It is an awful way to live in which you are three times a week giving up an entire day with transit to, then dialysis, then transit from. Meanwhile your days BEFORE it you are weak and exhausted and your days after you are weak and exhausted. It is an awful way to live.
This to me is torment. I have declined it. I would go first onto Hospice care, and an ending to a life in which a major system, my kidneys, had failed.

If your wife is unable to make her own decisions only you now can make them for her and only you know what she would have wanted. If she would have wanted to fight to the end for every last breath, then that is what you help her to do. If she would have wanted to skip all these last stages of life heroic measures, then that is what you do for her.

You know her.
This is your decision.
I trust you COMPLETELY to decide for your wife what quality of life is/means, and what she would want.

I am so sorry for this decision now put upon your shoulders, but I would trust my man, who knows me utterly, to make my decision for me.
My heart goes out to you both.
I am so sorry.
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Reply to AlvaDeer
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Backwoods Dec 16, 2024
Thank you for your honest reply! This journey has been hard and your reply helps me to confirm that I haven't gone crazy yet.
Thanks again
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I do. My husband was on dialysis for a year and diagnosed with “likely Lewy body disease” about ten months before he died. Fortunately, his uncharacteristic anxiety/depression was well controlled with medication prescribed by a neurologist, and his hallucinations were generally benign.

He wanted to continue dialysis, but was also very clear about not wanting to be hospitalized again. We had started palliative care which your wife would be eligible for. This is focused on symptom relief, minimizing doctor visits—a practitioner will come to your home who can prescribe medications. I will gladly answer any questions you might have about this.

When my husband started to medically decline earlier this year, there was no push by his providers(or us) to go to the hospital, etc. While you can seek any treatment on palliative care, most people have decided that they don’t want drastic measures taken.

He was able to make the decision to stop dialysis himself, but I was prepared to make it for him if I needed to(he had seen people going in on stretchers and I know he did not want that). From my understanding, death from end stage renal disease after discontinuing dialysis is generally peaceful and it was for us. He lived for 11 more days at home under hospice care.

Choosing to stop dialysis is an absolute right and should not have any stigma associated with it. I’m very sorry that you and your wife are in this difficult situation.
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Reply to MidwestOT
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I know of 3 people who gave up on dialysis at 63 and 70 years old. All diabetics. Two were doing Peritoneal dialysis which is the last measure. The two on peritoneal chose Hospice. The 70 year old just stopped his regular dialysis and opted for Hospice. They all werevof sound mind but just could not fobit anymore.
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Reply to JoAnn29
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Hi there, I do have experience with this. My 91 YO father has been on dialysis for almost 3 years. Yes, you heard correctly - his nephrologist put him on dialysis at 88, and many in that generation do not question what the doctor recommends. Between my sister, who lives with him, a daily helper, and me, we make sure he has gotten to and from dialysis since Feb 2022. (Our mother passed away last year.) What we have discovered since this began is that dialysis does cause some dementia or at least contributes to it (something about the toxins building up on the days they don't go to dialysis). My dad's dementia has progressed over the past couple of years but he can still 'showtime' and insists that he doesn't want to stop dialysis. We had his PCP have a long talk with him about this, that it was okay to stop "when it became too much," but less than 2 weeks later dad did not remember that talk with his PCP. Your wife is quite a bit younger than my dad, and it's a difficult decision, but at some point it becomes a bio-ethical issue - do you have someone continue to go to dialysis who has another terminal diagnosis - dementia, cancer, etc. The dialysis provider will never tell you to stop bringing someone -- there are only 2 in the U.S. and they are making money hand over fist.
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