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.
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.
I wouldnt wish that for anyone, let your mom make that decision, without making her feel bad for it. I know how hard this is , we all here know. Your not alone.
Best of luck on this horrible hard journey
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).
Dialysis is a brutal treatment and should NEVER be forced on anyone.
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.
How long did the kidney doctor say your mother had if she does not do dialysis? They would be the best person to ask this question. But based on what you wrote the kidney doctor doesn't seem to think at stage 5 that mom needs to be on dialysis like yesterday (which is really weird).
If mom says no to dialysis with stage 5 kidney disease one can assume she would qualify for palliative or hospice care. Best to start looking into that now for mom.
I would hope you aren't going to try and convince your mother to go on dialysis at this family meeting with her doctor. ALL side effects of dialysis should be asked about and life expectancy on dialysis. What her dying process will look like if she allows this to take her life, etc. Many doctors like to sugar coat things like side effects - don't let them.
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.
https://www.kidney.org/atoz/content/ifyouchoose
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.
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.
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.
first & foremost, thank u for all the caring & helpful responses. I’ll add a few more details about my mom-her quality of life is ok at the moment-She is somewhat independent, she dresses herself, she cooks her breakfast, she’s not incontinent & she has help, including my sibling who is her paid caregiver, she arranges her own medical rides to/from appointments & she goes to PT 2x a week. She is on several meds for her health issues & was recently diagnosed with mild dementia.
She wants to get a second opinion because she’s not comfortable with her current doctor (her other kidney doctor retired a year ago) & feels he’s pushing her towards dialysis. My sibling & I tried to explain that the diagnosis would still be the same even if she gets a 2nd opinion.
She’s selling her house (my dad passed in 2022) to move back to her birth state (in the South). She may consider dialysis once settled there but overall she’s really against it. So when we meet with her doctor next month, we’ll go over all options.
As for me, I have a health issue (knee replacement) that I must address before retirement because if I’m going to be the caregiver, I have to be in good shape physically.
My concern is how the dialysis would affect the quality of life she currently had. She says she’s feeling good & likes having her independence & doing some things for herself. She fears how the dialysis will affect her ability to live her remains years.
If I were you I would follow her lead. I don’t blame her for wanting another opinion. As you said the diagnosis may be the same but it might help her accept it and best for her to be satisfied. It is a major decision.
I also had a first cousin on dialysis. He was very overweight, diabetic. Much younger. He did not do as well as my aunt but was on it for a few years.
Thanks for the update.
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.
I’m sure you will support your mom in her choices and not let any physician unduly influence her. My husband‘s nephrologist was honest in saying that “you’re going to hate me” when you eventually start dialysis. He went quite a long time with a very low GFR so if your mom is still feeling well, she may have a fair amount of quality time left. Dying from end stage renal disease is typically pretty peaceful and not prolonged. Please keep us posted.
Sorry about your dad 😔
If she doesn’t want it, the best course might be to work on how she can best enjoy the time she has left, and thank her lucky stars and your own.