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#421255 - 05/13/16 12:41 PM OT: Dialysis or not...?
captain Russ Offline
Senior Member

Registered: 01/02/04
Posts: 7285
Loc: Lexington, Ky, USA
Over this weekend, I have to make the hardest decision of my life.

I'm the legal guardian of the widow of a long time music partner. She's a 74 year old African American with a 69 IQ (about a first grader, mentally), age related dementia, many other medical issues, and the big one...Stage 5 renal failure. Her kidneys have shut down, and something needs to be done NOW!

The issue is the dementia and whether or not she can handle the pain, uncertainty, unfamiliarity, exhaustion and other often serious effects of dialisys.

She pulled the fistula (the place prepared for dialysis-a joined artery and vein)out twice when it was first installed and was in the emergency room twice.

She is shaking, weak, has cramps, etc. Her long-time Dr. says dialysis is the only option, and ignores the dementia factor, which is major. A team of experts from the University of Kentucky department of nephrology say that dementia and dialysis never mix. And, to make things worse, once dialysis starts, you often die within a week if it is discontinued.

I met this family in 1960, when I was 15. All are challenged, including my former music associate. At one time or other, I have helped all of them financially, to the tune of over $100,000.00. Neither son could qualify as guardian, because of legal/financial troubles. Neither wanted to, when they found out there was no compensation involved. Each child saw mom once last year, when I held a dinner for her and they showed up for a free meal.

The three living kids weren't even aware that mom was sick. I moved her from a condemned home where the Dr. said she would have died in three more weeks. That was 5 years ago.

This is biggest, most life-affecting decision I have ever had to make. Deciding to withhold treatment results in certain death within 6 months. Dialysis, in this case is brutal and not recommended by many experts.

Anyone been in or near this kind of situation?

What did you (or other responsible people) do?
What would you do here? Anyone currently getting dialysis?

As legal guardian, I have the final say.

I haven't slept for a week, and have a 30 hour film score session starting Sunday morning. The decision has to be done by Tuesday at noon.

Any/all input will be appreciated.

This is impossibly rough. I would appreciate, and really NEED your input.


Russ



Edited by captain Russ (05/13/16 12:47 PM)

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#421256 - 05/13/16 12:58 PM Re: OT: Dialysis or not...? [Re: captain Russ]
DanO1 Offline
Senior Member

Registered: 01/31/01
Posts: 3602
Loc: Maryland
"A team of experts from the University of Kentucky department of neurology say that dementia and dialysis never mix. And, to make things worse, once dialysis starts, you often die within a week if it is discontinued."


Russ,

For all the years you have been on this forum, you have shown a tremendous heart. I would trust the team of experts and not go with the dialysis. While she is around, I would try to make her as comfortable as possible and hope that the good Lord will lead her to everlasting life.

Stay Blessed Sir.


Edited by DanO1 (05/13/16 12:59 PM)
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#421257 - 05/13/16 01:17 PM Re: OT: Dialysis or not...? [Re: captain Russ]
Bachus Offline
Senior Member

Registered: 03/02/06
Posts: 7143
Russ, i cant help you decide on this, the only advise i can give you is to never regret the dicision you make. In general its best to take these decision together with other caring fammily members to share the burden of the decision.

But whatever you choose, it was the best decision you could have made with the knowledge you had at that moment. So never regret decisions you take or blame yourself afterwards.. Because thats not fair to yourself. You did as good as you could, this post is proof of that.
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#421258 - 05/13/16 01:19 PM Re: OT: Dialysis or not...? [Re: captain Russ]
DonM Offline
Senior Member

Registered: 06/25/99
Posts: 16735
Loc: Benton, LA, USA
I think you know the answer. The quality of what life she has remaining will be better without undergoing the dialysis.
My young nephew (32) is having problems with dialysis, and it would be many times harder for her.
You've done so much for this lady and the family; you have to do one more thing, and that is let her go peacefully.
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DonM

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#421259 - 05/13/16 01:36 PM Re: OT: Dialysis or not...? [Re: captain Russ]
Bill Lewis Offline
Senior Member

Registered: 11/12/08
Posts: 2441
Loc: Bluffton/Hilton Head SC USA
Russ
Don said the perfect words "quality of life" My wife was a Respiratory Therapist and this saying came up often when a patient was confined to a ventilator. Its what really matters most.

You've gone above and beyond for this family so make your decision with a clear mind.
Sorry you have to be put in this situation.

Good luck
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#421260 - 05/13/16 02:05 PM Re: OT: Dialysis or not...? [Re: captain Russ]
rosetree
Unregistered


My feeling also says that a certain quality of the remaining life is more important and humane than a permanent medical treatment that would make her life unbearable, if this is the case. Of course, you also have to check the legal side of the matter; I assume in Germany one would not even have the right to reject the dialysis, a lot of discussions about these issues are ongoing here.

I found some German-language medical studies that reveal that obviously a lot of German patients with dementia receive dialysis, and it is emphasized how difficult this often is also for the medical staff.

This is one link, unfortunately in German, I'm adding the abstract in English.

I would recommend you to collect and evaluate all expert assessments you can find, and than make your decision with a clear conscience - that's all that can be asked of you.

http://www.afnp.de/dokumente/pflegepreis/2008/Kollmeier.pdf

"Demented patients on dialysis – A challenge
for the nephrological nursing staff
Against the background of the changing demographic
situation, the introduction of the
nursing care reform in 2007 has been followed
by an increase in public interest, in particular
in dementia. The growing trend towards ever
increasing numbers of demented patients is
also to be observed in nephrological nursing.
The case of a patient of the dialysis centre in
Bad Tölz serves as a basis for a discussion on
how the treatment of such patients might be
standardised and improved. The most important
of the proposed solutions is the provision
of nursing care consistency and the introduction
of a “personal nurse” model."

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#421261 - 05/13/16 02:41 PM Re: OT: Dialysis or not...? [Re: DonM]
Stephenm52 Offline
Senior Member

Registered: 04/13/05
Posts: 5126
Loc: USA
Originally Posted By: DonM
I think you know the answer. The quality of what life she has remaining will be better without undergoing the dialysis.
My young nephew (32) is having problems with dialysis, and it would be many times harder for her.
You've done so much for this lady and the family; you have to do one more thing, and that is let her go peacefully.



I agree especially with the comment "you have to do one more thing, and that is let her go peacefully."

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#421262 - 05/13/16 03:00 PM Re: OT: Dialysis or not...? [Re: captain Russ]
bruno123 Online   content
Senior Member

Registered: 06/04/02
Posts: 4912
Loc: West Palm Beach, FL 33417
Russ, I have been walking with a dear friend that is going for dialysis treatments. He is slowly losing his strength and body capabilities. What decision should he have made? I am told that if he refused treatment he would be gone by now. His treatments started six months ago. He is still alive and is slipping slowly away.

If I had to make that decision it would be in prayer. I know that I would receive an answer, and then I would live by that answer. This decision should be made with help from above.
My answer is based on my belief.

Those of you who have a different belief --- and I highly respect your belief – may be able to add to Russ in a different way.

Russ you have been given a difficult decision to make that is reaching inside of you – view that decision as a gift given to you; it is an honor from above.

John C.

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#421280 - 05/14/16 02:35 AM Re: OT: Dialysis or not...? [Re: bruno123]
Bernie9 Offline
Senior Member

Registered: 09/21/02
Posts: 5507
Loc: Port Charlotte,FL,USA
God bless both of you. I think it is time to let her go to her heavenly home.
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#421297 - 05/14/16 04:30 PM Re: OT: Dialysis or not...? [Re: Bernie9]
captain Russ Offline
Senior Member

Registered: 01/02/04
Posts: 7285
Loc: Lexington, Ky, USA
Thanks, everyone. I met George and Janice 56 years ago next Tuesday.

I just left her place. She didn't know what day it was.

She has an appointment with her new kidney doctor next Tuesday-week. I think she may not be here by then.

Sadly, she does not have a clue about what's happening. She just knows she hurts and does not know why.

Her two children in town and daughter out of town have been here to visit and are calling other family members to suggest a visit soon.

I just need to convince myself that I have done everything I can to have the best end of life.

She's an innocent. She is suffering. I want it to be over for her.

Man, this is rough.


R.



Edited by captain Russ (05/14/16 04:32 PM)

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