CBRabenecker Asked May 2015
My loved one has decided to stop dialysis. What can we do to support her decision?
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And how long can we expect her to be with us?
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This particular person lived just a little beyond two weeks which surprised everyone. It can depend on whether the person has little to no kidney functioning left. All family members were able to get there to see him and say their "good-byes". We think he may have been waiting for that as it was after a weekend visit from his out of state grandchildren that he died the next day.
One "symptom" that I was surprised about...but later found out from our medical staff was normal...was itchy skin. Not sure what causes it but my guess would be that the body isn't able to adequately filter toxins anymore, so the skin and body reacts to this. For this patient, pain was not a problem, but nausea and vomiting was. Hospice can help work with that.
I agree with Garden Artist about asking your loved one how they'd like to spend their remaining days. Some want to see most everyone they can while others don't necessarily feel up to company or don't want people to see them in the condition they may be in.
Blessings on your Journey, and I think it's wonderful you're asking how you can best support the person instead of spending their time and energy trying to talk them out of it once they've made it clear that this is what they really want for themselves.
old jim jim , wasnt very slim.
jim jim , drank too much gin .
jim jim , receding hair line .
jim jim , too much boxed wine.
the laziest guy i ever KNEW ,
sat on the couch till his kidneys BLEW .
i never did really like jim ,
just another reason for me to write tasteless hymns ..
jim was buried in a rubber vault ,
hes a strategic friction cushion in the san andreas FAULT .
Gather the family as soon as possible because after a few relatively good days the decline will be very swift. Constant care will be needed.hospice nurses will instruct you in how to position the patient and provide an aide to come and give a daily bath. basically the patient can do whatever they feel bale to that is not dangerous like driving and eat and drink at will. At the end they will sleep and refuse food and fluids. There will be little or no urinary output. Pain is not usually an issue but expect some nausia. As others have said be there to comfort your loved one and because it was their decision to stop dialysis they understand they are dying and may want to help with their own obitorry or funeral arrangements. The funeral director can be invited to the house and a minister is religious services are planned. there is no right or wrong way to handle this just the patient's way.
My dad died of kidney failure and towards the end he stopped eating, drinking and just spent his time sleeping. He developed bed sores, so the nurses would turn him over on his side every few hours, and brought in a special air bed for him. The one strategy I did not think was helpful to my dad was rubbing his lips with the ice water - when I did it he cringed and jerked away; obviously too cold and painful.
In terms of how long they have left, the medical team does not give specifics (at least not in dad's case) but will give you warning signs and let you know when it's time to say what you want to say to your loved one. I suspect they can know much more than they will let on, but they will not disclose it.
During dad's last days, the staff let us know that they would take the intravenous away because it would only be drowning him because his kidneys could not get rid of the fluid. When we asked them how long it would take, they said it could take a few days or a few weeks; they were noncomittal. However, he was gone in two days.
The specific signs of impending death, which I observed when I was able to visit him, are restlessness and picking at the sheets; greyish skin tone, more short and rapid breathing, extreme weakness (the nurses had to lift him up to make the bed); very dry lips and skin; and looking into the distance, reaching out and trying to get out of bed (as if he saw someone and was trying to take their hand). Also, he stopped talking, and when he tried to talk, the most that would come out was a gutteral sound, although when I kept saying I love you, I could hear very clearly when he whispered "I love you, too." At that point, I just held his hand and, being Catholic, prayed for him. Touch and hearing seem to be the best way to communicate during those last days and hours. It's your presence of being with them. One thing I read was that the breathing doesn't bother the one who is dying as much as it bothers us. I'm hoping that's true.
God give you the strength and grace you need at this time.
Blessings,
Carol
Make the most of these days. I've heard from many people who've wished that they'd allowed more time together before death instead of fighting a battle that they know they will lose.
Express your love, let her know that you understand her decision, and do what she has the energy and the will to do. This is precious time to be used for the good of all.
Going through the death process together can offer dignity and peace to the person who is dying and rewarding memories for those who attend the dying person.
You will grieve, but you will support each other through it all. You'll still feel her with you after her body has given up. Many of us have been in similar situations and remember our experiences as some of the most powerful of our lives.
Blessings to your all.
Carol
I would make arrangements to spend more time with her, bring the family in, do whatever she wants to do - if she wants to go on a short trip, out to dinner, take her. Make this time as pleasurable as you can so that you can create lasting memories and know when it does happen that you helped her through this tough time. That may be the best thing you've ever done for her.
In fact, ask her how she would like to spend her days, to celebrate her life and leave it on her own terms. It will be emotional, but try to remember all the time that you're helping her through the most challenging time of her life.
As to remaining time, I'm not sure anyone but a physician well acquainted with her physical condition could offer realistic insight. And it will depend on other health issues she may have as well.
You're very insightful and strong to ask the question how to support her; I wish you, your mother and your family a rewarding experience as you go forward.