My sister and brother in law live 2 states away from me. Sis has been on dialysis for 25 years and really does not have good quality of life anymore. Her husband is her caregiver. A few months ago he texted me and said he caught her throwing away her meds. Today he told me he doesn't know what to do. She skipped dialysis last Fri, went Mon and skipped again today. That is one day in 9 that she went to dialysis if she goes this Friday. She has skipped a day here and there before, too. Dialysis center keeps getting after him to get her to dialysis, but he says he can't drag her by the hair to get her there. I really don't know what to tell him. I can't talk to her on the phone because she is almost deaf and she is legally blind. I think she must be starting to give up and I really can't blame her. I don't know if I could have gone through what she has in the last 25 years. But I have no idea what to say to my brother in law and he doesn't know what to say to her. Sister is 71. If anyone has any thoughts on this situation, I would love to hear them. As far as I know, she hasn't actually said that she wants to stop.
At any point in the last 25 years has there been a frank discussion about end of life issues? Has she filled out an advance health care directive (living will?) Maybe filling out (or updating) the health care directive would be a way to open this topic for discussion. Would her husband be accepting of the idea of her "giving up"?
Another way to open the topic would be to talk about hospice, where she would not have any more treatments but be kept comfortable and as pain-free as possible. Would her husband accept her being on hospice at home?
If sister is 71, you are probably not 25! Could you travel the two states away and spend some time with her? And also be an emotional support to her husband?
SnoopyLove, I don't know that she has any new health problems. She is supposed to go in tomorrow to get her access cleaned.
25 years on dialysis - I would bet she is tired of it.
And it appears from what you said that her dialysis access has clotted or not working well enough for her to get the most out of her treatment.
There is a social worker at dialysis; maybe your BIL can begin by talking with her/him & letting the SW know what is going on at home. Or her nephrologist or PCP.
BIL is correct- he can’t make her go to to dialysis.
Have you spoken with her sister to sister? Maybe she will tell you what she wants as far as continuing dialysis. Maybe she will be truthful with you as it seems like her poor hubby may be in denial that she may be giving up.
Or suggest the husband finds a good therapist for himself and go weekly to discuss and vent his own feelings.
Very tough situation. I wish you all the best.
I'm so sorry to hear about your sister, I can imagine that after 25 years one gets tired of the same routine. I'm sure your brother in law feels worn down as well.
I would try and talk to your sister yourself. I know we all get stubborn, but hopefully you can tell her how much you care and love her and want her to take care of herself. I'm not sure if you can talk to the social worker and see what other supports your sister could access.
While I would agree that speaking with a medical professional would be a good idea to determine how she's feeling about life/death, I don't see that happening until a way is determined for her to hear what a social worker is saying. If she's having trouble hearing your husband, she isn't going to have any easier time hearing a social worker.
Does she know Braille? If so, you could contact the national Braille association to locate Braille trained people who could communicate with her.
Have any hearing enhanced phones been used, and if so, did they help with the communication difficulties?
I wish I had some on point suggestions; I feel badly for all of you and especially your sister. It wouldn't surprise me if she's just decided she's had enough. The question is how to determine if she feels that way.
I think though that if she doesn't want to go to dialysis or doesn't want other treatment and resists it, I would let her make those decisions and abide by them. And consider bringing in hospice.
A tough one for her as well as the rest of the family.
I think this might be a time to call Hospice and have them come in and help her, and the entire family. they will support her and her decision and help everyone be at peace with the decision that has been made.
If she does have a DNR it needs to be kept with her at all times. If she were to be taken to the hospital or if you call 911 if they do not see or have access to the DNR or POLST it does not exist until it can be presented. But until that time they will do CPR, Intubation and anything else that needs to be done to sustain life.
He really does need to talk to somebody at the dialysis centre about the ethics of this and get guidance. Not only for his emotional support, though that's hugely important of course, but because if your sister is skipping dialysis regularly it is going to affect her cognitive and decision-making abilities which in turn will call her competence into question.
The poor man. Does he have anyone to confide in? His changing the subject when you even tactfully touched on it sounds as if he is really dreading the decisions to come. Opening up the discussion among professionals might make it more pragmatic and dispassionate and, for a man perhaps, less painful.
Is there any possibility you could go and stay with them for a short while? Might he welcome that? Conversations like this need time and space, not to mention body language, and you can't really do that on the phone.
How's BIL?
When someone has decided that it is their time to die they should be allowed the dignity of that decision. It really is their decision however much you don't want to loose a loved one. I am not talking about letting someone kill themselves here but rather stoping treatment which includes refusing food and water. Everything should continue to be offered especially medications that contribute to comfort.
Flashpoints sister bravely endured dialysis for 25 years which demonstrates her will to live but finally she knew the time had come and accepted that. Such a sad story but I for one would say it had a godd ending.