I need advice on giving advice.

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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.

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Top Answer
Flashpoint, I think someone needs to sit with sister and have the discussion about whether or not she is willing to continue her treatments, or if she is ready to consider hospice. Maybe BIL should have a talk with the social worker in the renal unit about what he is experiencing.
Just had a friend go thru this after months of dealing with dialysis that he was having the stint keep moving so hard to hook him up. They did the home thing then he ended up hospitalized then in a nursing facility. He was a diabetic. He finally said he was tired. Just wanted to go home on Hospice. He felt it was his time. He passed a week or two later. He was 63. 25 yrs is a long time to be on dialysis. I personally would not talk to a Social Worker. I don't think they r trained in this kind of situation. See if there is a Phycologist associated with the program. Your sister needs to talk to someone who will listen to her. Your BIL is too close to the situation. She may be ready to go. That is her choice and it should be honored. Hospice will keep her comfortable.
This is a very sad situation. Hugs to you and to her husband!

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?
I feel for you & your family as this is such a tough situation.
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.
If she has chosen to discontinue medication and dialysis that is her choice.
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.
I see she is legally blind, but that doesn't necessarily mean sightless. Could she read large printed words on a contrasting background?
Sometimes we have to accept the fact that loved ones choose to give up, choose to die on their own terms, and choose to do it teir way. What can you do about it? Very little. The first step is to accept their decisions, It's not easy, but it is, what it is. God bless you.
What a sad situation. Do you know if anything else has changed for her recently healthwise? I say this because a dear friend of mine advised me that when her COPD gets to a certain point she plans to discontinue her dialysis, a decision she'd come to after very frank discussions with her doctors regarding end of life/quality of life issues.
She is tired and ready to go home.
Flashpoint, does she have hearing aids? I think the first major issue is finding a way to communicate.

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.

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