Daughter of 79 yr.old mom with ESRD and Dementia

[emsdaughter]

Hi, I'm here as an advocate for my 79 yr old mom who has been on dialysis for almost 6 years due to polycystic Kidney disease. She also has dementia and diabetes. I've been her caregiver for 12 years when she moved into my home and needed the security of loved ones around to take care of her. She maintained some Independence and mobility (with times of illness and extreme dependence also) up until about 1 1/2 years ago when her dementia became much worse and she fell and broke her hip. We placed her in a very good nursing home because I simply couldn't care for her at home anymore. Since then, she has continued to decline mentally and physically and recently fell again and broke her leg in two places, requiring surgery and a metal plate which has become infected and had to be operated on again.
Her mental state is much worse since then with some hallucinating and extreme depression. She's also in a lot of pain.

I found this site and hoped to maybe get some insight from those that have cared for loved ones and have been faced with the dilemma of when to stop dialysis due to the lack of quality of life and the suffering she is in.
I would obviously prefer not to have to make that decision but I feel a lot of guilt when I see her in pain and can't do anything to make it better.

I can't seem to get much help from her doctors and the dialysis center. I have to really push to get someone to talk to me about this.
I finally got a response today from the social worker at the unit who said she would try and speak to my mom tomorrow and evaluate where she is mentally about stopping treatment. She goes in and out of lucidity so it's difficult to know how much she understands. I've been told that it would be unlikely that the nephrologist would come to meet with the family. It's like trying to get an audience with a king when you try to actually speak to the doctor himself.

The rest of my family really loves and cares for mom but I think they would rather just keep letting things go on as they are so they don't have to feel guilty about making the decision to stop treatment. I am her power of attorney and health care advocate so I guess it weighs on me more to do what's best for her no matter how hard the decision would be.

I hope to get some insight from anyone that has experience with the very last stages of this terrible disease. I've tried to find information about what to expect when treatment stops but there's not a lot that I can find besides general guidelines.

Any help or encouragement I can get right now would be very appreciated.
Thanks

[okarol]

  emsdaughter,
Glad you found this site, you'll find a lot of info and support here. You're in a tough spot with your mom's situation and as a fellow caregiver, I don't envy the decision you have to make. It's crazy to me that if we were talking about a very elderly, ill, yet beloved family pet we could make a rational decision based on quality of life. But when it's your mom it's very difficult. Best wishes to you and good luck with your mom.


okarol/moderator

[rose1999]

I can't help but I just wanted to say  and I hope someone can come up with the answers you need.  Whatever decision you make it is obvious you will make it out of love for your mom.

[Sluff]

Welcome to ihatedialysis.com emsdaughter,

No-one can give you the answer for your situation, everyone see's this situation their own way. I do hope that you get a little insight to help with your decision.  If I was faced with your dilema I guess I would have to go back to the old family conversations. Dialysis is a life prolonging treatment, so in my opinion stopping treatment would fall into the line of discontinuing life support. Only you know what your Mother wants along those lines. It also depends on what her future quality of life would be.I need to stop here or risk this turning into a pro life thread but please understand that this is only my opinion.

Hope to see you in the forums.

Sluff/Admin

[jbeany]

Did she sign over power of attorney, or was it granted to you because she was no longer capable?  If she did sign it over, did she discuss with you what she wanted?  I know it's a hard thing to decide, but you know her better than the doctor ever will.  What would she want?  My family had to make that decision with my mother's death from liver failure.  For me, after it was over, the guilt was washed away by the thought that there's no more pain.  My mother suffered horribly at the end, and we made the decision to stop treatment because we knew she didn't want to live on machines, in total misery.  The doctors and hospital staff have a tendency to keep pushing treatment just because they can.  That doesn't make it the best choice.  Quality of life counts more than quantity. 
The end stages of kidney disease vary from patient to patient.  It depends on how much residual kidney function your mom has left, and how many other health complications.  You should be able to get in touch with your local Hospice group.  They've got a lot more experience with this, and are more willing to talk than most doctors.  Even if you don't decide to end treatment right now, it can help to talk to someone who has dealt with these issues.
 

[Bajanne]

Welcome to our community!   Though I cannot be of help to you in this, I just want you to know that my caring thoughts and prayers are with your mother and you. 


Bajanne, Moderator

[Joe Paul]

Welcome emsdaughter, good to have you aboard.

I had to think about this, and come back again to answer. From reading your post, I think the guilt of stopping dialysis and letting her die will stick in your mind for a long time to come, more so than watching her suffer now. What ever you decide, God Bless you, as it wont be easy either way.

[petey]

emsdaughter --  I agree with jbeany :

You should be able to get in touch with your local Hospice group. They've got a lot more experience with this, and are more willing to talk than most doctors. Even if you don't decide to end treatment right now, it can help to talk to someone who has dealt with these issues.

I also agree with jbeany here:

Quality of life counts more than quantity.

What a very, very difficult position for you to be in.  I can't offer any help because I haven't been where you are.  But, I can offer you my thoughts and prayers.  From your words, I can tell that you love your mom very much.

[Ang]

welcome,can;t  help  wth  your  dilema,hope  the  decision  you  arrive  at  is  the  right  1  for  your  mother.

[Slywalker]

Welcome to the forum.  I can't lend any advice to you but I do agree that talking with a hospice organization might help you decide on a plan of action. 

Good luck and hopefully you will gain a lot of insight regarding dialysis on this forum which may help you make a decision.

Best wishes

Sandyb

[Psim]

What a difficult position to be in. I can only offer you my care and support. I hope that hospice staff will be able to help you. They may be much wiser in this area than a doctor would be.

I'm very grateful that my parents were able to make their wishes clear -- their deaths were hard, but we knew what they wanted and didn't want. It's something all of us should think about doing in order to spare our families this kind of guilt and uncertainty.

Best of luck in this difficult time.

[mysty]

My thoughts are with you as you go thru this.. it won't be easy.

[keefer51]

  emsdaughter

[willieandwinnie]

  emsdaughter. Offering you my care and support.

[kitkatz]

It sounds like you have quite a few problems to deal with over there.  I hope you can solve some of them by meeting with her doctors.  Sometimes you just have to pull some strings and get someone to talk toy ou.  Anyway, welcome to the site.  I hope you can find some answers to your questions.



kitkatz,moderator