Hello all, my mom has been on dialysis for a year now and is only 58 years old. Her kidney failure is the result of a bowel perforation that lead to sepsis. She is her own POA, and rightfully so (her doctors agree she is in her right mind still, despite being extremely stubborn and at times emotional). She has a multitude of other issues, including damage to her heart, hypoglycemia, chronic UTIs that keep leading to blood infection (she regularly messes herself and insists on wearing diapers and also refuses to shower). The nursing home cannot force her to get up and walk to the restroom if she doesn't want to, nor can they force her to shower (they do keep her cleaned up to the best of their ability). I am just at an absolute loss as to what I should do here. CAN I do anything? She will neither commit to dialysis, nor move on to hospice. I have tried to reassure her that I want her to make the best decision for herself and won't judge her either way, but she still just states she wants to live. She ALREADY takes the max dose of xanax that she can in order to try to calm her during dialysis. She says she can't sit still, even when they give her this. Also I am not allowed to visit any more than I already do. I bring her all sorts of snacks and goodies all the time to try to keep her spirits up.
**She also does not want a kidney transplant. She does not wish to deal with the potential complications or the plethora of medicines that will be required.
Then it is up to her. She knows, but she doesn't really want to "go there" if you know what I mean. So she uses denial to say "Oh, yes, I want to live, but I don't want to do dialysis".
This will follow the course it will follow. Without the regular dialysis she will die. But in all truth with it she doesn't have a long prognosis for living, and it is making her miserable. She is in care. I would leave it now on your Mom. She knows your feelings and your opinions. As you said, all agree that she is of sound mind to make her own decisions. You know the likely outcome of the decisions she is making, and that will come as it comes in the time it comes. I have seen people actually refuse dialysis and live on. That is rare. But as you said, this isn't your decision to make. And your Mom seems to feel that the life with dialysis is somewhat a torture.
Rest your own mind. Let your Mom make her own decision once you are certain she has been told the truth by her MD..
A little woman I knew lived well into her 90's and subsisted almost entirely on Lindt Chocolate balls. Ate about 50 a day for over a year. Died weighing less than 100 lbs.
That may be extreme, but she was dying and her family just gave her what she wanted.
IF she decides to be compliant with the plan to lengthen her life, OK, then maybe cut back on the goodies. But not before.
I sure don't want my last thoughts on Earth to be "gee, I'm glad I didn't order the cheesecake".
It sounds as if she has made a decision, but is afraid to go ahead with it.
Not doing dialysis on the regular basis will hasten her death, and i'm sure she knows that. Maybe she's just hoping to 'sort of' make a decision, which is a decision.
My Dh had a liver transplant 14 years ago. A MUCH more complicated procedure than kidney--you can live w/o kidney function, you cannot live without liver function.
Kidney TP's are different animals than livers--but the 'healing' and susbsequent meds are not that bad. DH takes ONE tiny dose of ONE anti rejection med. If mom gets a donor kidney from a family member, her odds of doing well are pretty good. Some of the other health issues could be made much less awful if a kidney transplant were done. Just MHO.
Nevertheless, you really have no option but to support your mom in what she chooses to do. Make sure she has EOL wishes spelled out so you don't have to guess what to do when the end is near.
I'm sorry--she's very young to have so many health issues.
IF she chooses hospice, they will keep her anxiety under control. There's 'kind of' no limit to the dosage of Valium and Morphine, if she's in pain.