I need advice on giving advice.

Flashpoint ....SORRY FOR YOUR LOSS,I have not seen your post but can tell from others post,prayers to you

Thank you for updating us Flashpoint, I'm very happy I read through the whole thread and I too am sorry for your loss, what a remarkable, strong and loving person your sister must have been. Not only did she know, consciously or not, that it was time, she found a way to care for her DH through the end as well as herself. Care for both of you really but especially him by the sounds of it because he wasn't ready yet to accept the time was near even if she was. But she circumvented the need for him to suffer through all of that and you to suffer through making him face it, she kept you both from having to make impossibly hard decisions and watch her suffer more by going quickly or relatively so compared to what it sounded like you were facing. As sudden and hard as it was and is, your sister and whatever higher power you and she draw from cared for all of you and went out on her own terms by making it quick, peaceful and comparatively painless (painless is not a word I would use for the last 25 years for her), I have no doubt she takes great pleasure in being able to do that and it brings her much peace. I hope you, your BIL and family find great peace in that as well.

I am so sorry for your loss. Thank you for updating us on what happened. Your sister is now at peace. I hope you and your BIL can find some comfort and solace in that.

I'm so sorry for your loss Flashpoint. Your sister is now at peace,

Flashpoint only found this thread today so first condolances on your loss. In the end your sister was able to die in peace in her own bed which is very comforting. For anyone else facing the death of a loved one on dialysis. I have never seen it as a painful death. it is not particularly pleasant because of the extreme nausia and fluid retention associalted with renal failure.

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.

Flashpoint, I'm so sorry for your loss. What a sad journey.

Thank you for letting us know what happened. It must have come as a shock, being so sudden, and I'm very sorry for your loss; but I'm sure you were right in believing that her life was becoming unbearable.

How's BIL?

Flashpoint;if your sister does get on a hospice sometimes there is donations available for the family to help with money so you can travel to be with her ,my Hospice is probly the BEST answer I've heard ,all hospice organizations are usually wonderful!

Flashpoint;if your sister does get on a hospice sometimes there is donations available for the family to help with money so you can travel to be with her ,Hospice is probly the BEST answer I've heard ,all hospice organizations are usually wonderful!

Flashpoint;awwww so sad I send my prayers to your family...PLEASE DO not get offended ,but maybe it's time to speak to Hospice for pallitive comfort care .Your sister can still stay on dialysis for comfort but everyone will have more support And your sister will see a trained social worker a Chaplin, nurses will come to the house ,CNA will come to help her with personal hygiene.Please do not let the word Hospice frighten you it does not necessarily mean it's the end ,hospice also means your family will have more support ,your sister is a survivor 70 years old and on dialysis for 25 years WOW SHE'S A ROCK STAR!!!! All of you have earned the right to have the comfort of hospice .I know it is completely covered by medicare..GOD BLESS YOU!!

Dying because of no more dialysis is supposed to be very painful; this must have been better, don't you think?

I also offer my condolences, but she no longer has to battle against such insurmountable odds. And thank you for sharing this updated news.

I'm so sorry for your loss, now she is at peace.

I need to update you all on what has happened. First, I want to thank you all for responding and for your heartfelt concern. When my sister refused to let anyone clean her access, they went home. That same day, sister slipped and fell (wearing socks on a smooth floor) and skin on her non-access arm tore wide open (really thin, fragile skin). Back to hospital via ambulance. Glued her arm back together and ex-rays for broken bones (there were none). Next morning nurse came in to wake her and she had passed away. Not expected, but I am glad that she is at peace now. Her quality of life has not been good for the last several months. Thank you all so very much.

Lets see. . . dialysis for 25 years, legally blind, almost deaf, skipping dialysis, throwing her meds away . . . I'd say she is trying to tell people something! I agree "he can't drag her there" and the Dialysis Center giving him a hard time about it is mean. I'd say it definitely is time to talk about hospice with her, and I definitely agree with Jeanne Gibbs about getting legal paperwork done. I've been close to trying to force an ill person to do something - and it just can't be done. My heart goes out to you.

Your poor BIL.

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.

Someone should sit down with the sister because perhaps she does want to stop treatment. She has that right.

I hope she has a POLST (Physicians Order for Life Sustaining Treatment) It is much more detailed then a DNR
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.

She is tired and ready to go home.

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.

I see she is legally blind, but that doesn't necessarily mean sightless. Could she read large printed words on a contrasting background?

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.

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.

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.

I can't talk to my sister directly on the phone as she can't hear. I can only talk through her husband. He has to yell so she can hear and it doesn't go too well. He said this morning that he went through h*** to get her ready and to her appointment and then she wouldn't let them do the procedure on her arm.

Dear Flashpoint,

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.

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.

Thank you for responding. Cwillie, that is what I told BIL that maybe the social worker could have a talk with her to see what she is feeling. He responded by changing the subject, so I'm not sure he wants to even deal with it.

SnoopyLove, I don't know that she has any new health problems. She is supposed to go in tomorrow to get her access cleaned.

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?

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.