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My mother suffers from kidney disease, among other health issues including CHF. Her kidney doctor has advised that she is in stage 5 & will eventually need dialysis probably sooner than later. She’s doing ok right now but he’s scheduled an appointment with my mom & family to discuss. She is adamant that she does not want dialysis. I’m working but will need to retire to become her primary caregiver (with help) any ideas what to expect? Thank you.

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My dad, rest his soul, had dialysis for a couple of weeks in his late eighties. He had a bad bout of pneumonia and something happened to his kidneys after his hospitalization from the pneumonia. He had to go into a rehab for two weeks after leaving the hospital for the kidney treatment. Dad called me everyday whie he was in the rehab. He did well for awhile after the treatment, and later the prostate cancer went out of remission again, and he had fourth stage prostate cancer with the bone metastasis. He refused the chemo treatments because he didn't want to be bedridden. The doctor didn't want him to do the treatments either because of his age. Chemo treatments and some treatments in general are not good for older people. Their bodies are not equipped to take the harsh chemicals. I'm a firm believer in letting them live out their days in peace and to enjoy the time they have left with family and friends.

My brother, who recently passed did the treatments but they didn't help. His cancer had progressed to the bones. He stopped fighting and died this past February, 2024. He didn't last as long as dad and passed at eighty three years old. Dad was ninety three when he passed.

If your mother refuses the treatment, this is her choice.
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Reply to Scampie1
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If she is adamant about NOT wanting dialysis, DO NOT MAKE her do it. Her body, her choice!

Dialysis is a brutal treatment and should NEVER be forced on anyone.
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cwillie Jun 7, 2024
OP is asking what to expect, not how to convince their mother to do dialysis
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I am a retired RN 81.
I have already LONG AGO written in my advance directive that I do not wish to have dialysis even temporarily under any circumstances, and that in the instance of kidney failure I would like first palliative care, then Hospice care.

Your mother, if not suffering dementia has a right to this decision.
Her doctor will almost certainly understand and not fight this option.
Feel free to have an advance directive done stipulating this.
I also refused any artificially administrated sustenance such as PEG, TPN, or tube feedings. Also chemo and radiation.

These are very valid decisions for us elders.
Please honor your mother's wishes.
My family has long known and agreed to honor mine. My MD has as well and my wishes are scanned to my charts.
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MidwestOT Jun 7, 2024
I couldn’t find how to respond directly under your questions to me, so putting it here. We knew for years that dialysis was a likely eventuality so were somewhat prepared and he had a fistula created 2 1/2 years before he needed it(surprised everyone). He was 75 when he started dialysis, unfortunately under traumatic circumstances, long story. But he wasn’t ready to die and had always wanted to try dialysis even though he didn’t want other invasive procedures.

It was a challenging year, including a diagnosis of likely Lewy body dementia(not a surprise to me), which fortunately never progressed significantly. Other medical issues arose, but that’s where palliative care was so helpful for us. He was hospitalized once but the hospitalist understood palliative care and got him out of there ASAP without a lot of testing. Likewise, his NP knew he did not want to go back to the hospital so there was no push for diagnostic testing when he started to significantly decline.

Long story short, we were both glad to have that final, though heartbreaking year together with palliative care improving the quality of both our lives during the last six months. He knew that I was prepared to care for him at home as long it was safe for both of us, and my health was not significantly impacted. I had a back up plan with Visiting Angels, but fortunately never needed them nor had to make the difficult decision to seek placement.

Personally, I am with you AlvaDeer, in terms of medical measures I want for myself. I’m still fairly young, but need to get it in writing as my MPOAs are a little older than I am. I certainly hope that Wo8myte’s
mother isn’t pressured by a physician to start dialysis when she is adamantly against it, and frankly at 84 I would hope she wouldn’t be pressured anyway. Even though my husband didn’t regret the decision, dialysis is an invasive procedure with its own set of difficulties.
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Oh, I as an 81 year old RN soooooooooooooooooooooo agree with your Mom. I have so long known I do not want dialysis that it is scanned into my chart for more than two decades now. I don't want tube feedings either.

Listen you your mother.
Give your mother the dignity of not having dialysis.
When the doctors suggest Hospice then it's time for hospice and the "good drugs".
We all die. There's no reason on earth to be TORTURED to death if that isn't our wish.
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ElizabethAR37 Jun 11, 2024
Absolutely agree!!! (87 Y/O here.)
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Dialysis is complicated for older people. It has a benefit, and a price. Advance kidney failure itself can either make people feel sick, or can be dangerous (have trouble breathing or dangerous levels of certain electrolytes in the blood). The benefit is that dialysis prevents these things, and is usually only started when one of them becomes urgent. So can improve symptoms or can prolong life, depending on which was an issue first.

The price is that some of that life is then spent getting to dialysis, doing dialysis, and recovering from dialysis, and the process can be quite exhausting for an older person. There may be a surgery or a special permanent IV to start also.

Many people say (and should be offered the choice to) they are just not interested (as she is). In the same way they wouldn’t go for another round of chemotherapy or a surgery or something like that. So I would respect her wishes, as long as she feels like she knows the options.

At 84, a lot depends on her other quality of life issues and what she wants to gain. Many people of this age say no thanks. Some people start and though the process is annoying, they do better than expected. Some people start and are miserable.

I’ve seen people also be unsure, and decide to start with the option to stop later (which is 100% an option) if it’s not for them. (Most people who do this keep going though – not sure if that’s because it works for them and it’s not as tough as they thought, or just through inertia).
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Isthisrealyreal Jun 7, 2024
Dialysis is exhausting for the person no matter their age.
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My husband was in stage 5 for quite awhile before starting dialysis. His nephrologist looked at symptoms rather than just lab numbers. He was on dialysis for a year before he died so I have quite a bit of experience as his caregiver I can share. Are you asking about caregiving information while on dialysis or palliative/hospice care or both?
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AlvaDeer Jun 7, 2024
It's wonderful you can share this information, Midwest. We once had a caregiver member named Becky who was on dialysis; gone for some time now, but I do not think she passed of kidney problems.
Do you have an opinion to share with us? Do you feel that your husband was overall HAPPY with this time, or relatively so? That is do you feel it was worth it to have the extra time?
Would be so interested to know. As an RN I saw in hospital all of the failures, few of the successes over a long career. I will say that's the problem with being an RN is you see those who end up in care. For instance I am DEADLY AFRAID of blood thinners given what I saw from the old ones in terms of deadly side effects. Yet I did not see those who thrives, if you get my meaning.
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If your mom doesn’t want dialysis, honor her wishes.

My aunt didn’t want dialysis. She died suddenly so she didn’t even have the chance to do dialysis. She was only in her 40’s.

I wouldn’t try to convince your mother to do this. Your mom’s wishes are more important than her doctor’s recommendation for her.

I am so sorry that you are going through this. I wish you peace during this difficult time.
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woe8myte Jun 11, 2024
Thank you
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I am surprised dialysis would be recommended whenv person has CHF. From what I understand dialysis does a number on other organs too.

I had two friends, both diabetics, both their kidneys had shut down. One was juvenile diabetic and could not do dialysis. She passed 2 weeks after going on Hospice. My other friend, he quit dialysis and passed in a week. Kidneys filter out toxins and when those toxins build up in the body it causes Dementia type symptoms. The body becomes septic and this is what causes death. With Mom, her heart may go first.
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I’m late to the game on responding to this one but as someone whose almost 91YO father is still on dialysis after 2 ½ years, I wanted to provide my 2 cents. My dad’s nephrologist met with dad and mom (who has since died) when my dad was 88 and told my dad he was at Stage 5 and needed to go on dialysis immediately. My sister and I were not included in this conversation and my mother wanted to keep him alive at all costs while she was alive, and my understanding was they were not presented with having a choice or allowed to go to the dialysis center and see what dad would have to endure. Here we are after 2 ½ years still making sure he gets to and from dialysis 3 days a week. Sister and I are both still working FT and she and her husband have moved in with dad. He has mild cognitive impairment now and although his PCP has made it clear that he can stop at any time, we don’t think dad is going to make that decision because it’s become part of his ‘lifestyle.’ And we don’t think he can remember between times how exhausted he is. My sister is unwilling as POA to force the issue, and neither one of us thought he would still be around. I wish someone had told us what we would be getting into, or had encouraged mom and dad to see what dialysis patients experience.
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Anxietynacy Jul 25, 2024
Good information yaya, thanks.

Sorry about your dad 😔
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If your mom is of sound mind and she doesn’t want dialysis, then she doesn’t need to have dialysis.
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