My dad (83) passed away in December. In mid-January, my mom (77) went from stage 4 to stage 5 or end stage renal disease and started dialysis. Then had a stroke during a procedure on her heart, then had two months in rehab, followed by 10 days at home where it was proven she cannot live alone or care for herself.
The only thing she had to look forward to was the prospect of moving in with me. I have realized with the state of her health and home prices in the pandemic, there is no way I could economically and with peace of mind, provide her the level of care she now needs. (Forget that it’s an interstate move hundreds of miles from where I grew up.) She keeps saying rehab needs to make her stronger, so she can walk out of there, etc.
Why aren’t these doctors levelling with her and setting realistic expectations? I tried telling her as gently as I could that she really can only maintain what she has, not likely to start walking without a walker. I told her that she is in the right place for the care she needs. She said a lot of nasty passive aggressive stuff to me. I told her I loved her and hung up.
12 hours later, she’s crying at dialysis and telling them she plans to stop soon. She told my brother I need to come visit quickly or I won’t see her before she dies.
I talked to my brother and now they are going to have a hearing to determine if she is of sound mind. The nurses say she is sound enough to try to trick them (she lies when asked if she is a fall risk) and to say pointedly nasty things to her kids. My bro and I think it could be the perfect passive aggressive last move.. “ok you kids can off me anytime now by stopping dialysis.”
What a mess! What if my mom gets ruled of sound mind and goes on hospice and two days later says, no I’ll go to dialysis... and we are in a loop with her.
I don’t even know what questions to ask you all... I just can’t believe things have reached this point!!
At the very least, she should be getting some grief therapy. What you see as passive-aggressive behavior (and granted, you know her better), I see as someone who could be grieving mightily.
I think it is important that she make her own decision. I think that decision should be made after a full psychological workup. You need to be assured that her dialysis is not being used as a tool of manipulation for forcing you to say "please don't stop; you can live with me and I will quit my job and care for you till the end". You need to know she is well and truly tired and ready to go. Tell her that you will support her stopping dialysis if she is certain that is what she wants but that you cannot help her make that decision, that she should discuss it with her MD.
I doubt seriously that the MD, if she does refuse dialysis, would put her back on while in hospice. He may request psychological testing, which her POA can also request.
I don't really understand why this is a court case before she says she is quitting for sure. But know that, if she is competent enough to say she doesn't want it and is tired of life, she will likely win. If she says "No one wants me anymore; I don't have anywhere to go. Life isn't worth living" the court will likely order psychological review and testing. If she says "I will do it if my daughter lets me live with her" they will likely understand also that this is being used as a tool by her. They may leave it in her and her doctor's hands.
Why has her doctor not ordered any psychological exam before this came to a court case?
If your Mom is competent they may leave it in her hands. Then the doctor and your Mom are the only ones involved and you should stay out of it until the doctor or your Mom or both ask that you be included. The doctor needs to make clear to Mom that dialysis isn't something you start and stop and start again, not a game to manipulate getting her own way, but is a matter of life and death. I believe at that point you should stick to your love, your willingness to help, but your insistence that your Mom will not be living with you. Make it clear to your mother that you are loathe to lose her, but that, if she is tired of dialysis, you would support her wish to stop and to accept the death that eventually will come to us all. That may stop this real quick IF it is manipulation. Also reassure her that death won't come really quickly necessarily. Some adapt and adjust and live quite some time. Some pass quickly. Not something that can be predicted.
Saying you will "quit soon" isn't quitting.
I am not certain how this is going to court already with her not have said "I want to stop NOW". It sounds as though she may be using this as a tool.
However, if she ever truly is ready to stop I hope you will honor that wish, as I is something I would never START, let alone stop.
Wishing you the best with this. Hoping you will update us on where it goes.
Yes, I think its up to the doctor to sit down with her and tell her how things are. If she can improve, what she needs to do to improve. You need to be there too. What he says and what she chooses to hear are 2 different things. At 77 she really isn't too old to bounce back. Maybe, if she can afford it, placing her in an AL would be good.
If this is a Care Meeting, the ones I have been involved in were the staff telling me what was being done for my Mom in 15 min. Did not leave any time for my questions. So, go in there with a list of questions and make sure they are answered.
Remember that Mom has had a stroke. There has probably been some kind of damage. I really think she is too overwhelmed and scared to make a decision concerning dialysis. At this point I may talk to her about staying with it a little while longer. I had a friend who after about 600 sessions, he said no more. He passed 2 weeks later.
I don't expect you to have her live with you. I understand how hard it would be to get and give her the care she needs. You have some big decisions to make. Hopefully, after this meeting you will have some answers to help make those decisions easier. Also, I know passive-aggressive tendacies. My MIL was good on using it on her boys. Didn't work on her DILs.
Does someone have power of attorney for health and finances? That certainly needs to get done before a hearing.
Has your mother been seen by a geriatric psychiatrist to assess her mental health, separate from her competence?
My aunt went into the hospital with kidney failure.
Dialysis was mentioned to my aunt and she became very upset. She had seen a close friend suffering while they were on dialysis.
My aunt (my mom’s sister) did not want dialysis. She refused it and she died within a month in a month.
My aunt fell backwards in my mom’s arms while mom was propping up her pillow. It was quick and I believe my aunt would have preferred to die quickly rather than prolonged suffering.
Can you or your brother talk to your mom’s doctor to see how she can become calmer? Maybe meds or clarification of her condition. Possibly both.
Do you think she would share her concerns with her doctor or a therapist?
I've personally known 2 people who had to resort to dialysis, and each of them hated it. One grew so fatigued and weary from the repetitive dialysis sessions that one day he decided he had just "had enough", and refused to get any more dialysis.
That was certainly his right. And I would support that kind of decision.
I'm not sure I completely understand the need for a hearing to determine soundness of mind, unless it's a generalized hearing not specific to the dialysis issue.
This is one area where I think governmental intervention can be helpful but can also be harmful. I'll probably be criticized by the religious people here, but I firmly believe that we should have controlling decisions over our rights and refuse treatment w/o family or government interventions. It IS in fact, the individual whose competency may be questioned, who may have to undergo undesirable treatments, not the family or the court.
I don't completely understand the issue of whether or not she may need dialysis; is this one of the issues of not getting accurate and adequate information from the doctors?
Personally I think that there is FAR TO MUCH medical intervention that keeps people breathing with no thought about them having actual lives.
She did tell the nurses today she wants a CoVid shot, so she musta changed her mind already.
thanks, everyone, for sharing your perspectives. Mom swears no one told her what dialysis would be like, that it is every other day for the rest of her life. I am pretty sure that is not the case, because I sure as heck heard the doctor say that it needed to be everyday for rest of life! No doctor has described the hell that patients go through however.