Mom stopped dialysis what to expect

[bluebird1968]

Hi I am new here but always read the posts. My mom had kidney cancer 5 years ago and had the kidney removed. Her good kidney  went into acute failure and she went on dialysis for 3 months and her kidney function returned. 4 years later her kidney went into end stage failure suddenly,. She always said she would never go back on dialysis but she did,that was a year ago she is 73 years old.

She has end stage Heart failure also and over the last 2 months has declined severely. She decided a week ago to stop dialysis. I support her decision for her quality of life has been severely effected. I am so scared as to what is to come. She always had the fear of suffocating and I am afraid this will happen with all the fluid. I am loosing my best friend and so beside myself. I know I can't be selfish in wanting her to continue dialysis because towards the last couple months she could not do anything for herself anymore.

Does anyone her know what I should expect. It breaks my heart because she keeps saying she is scared of dying. She does have hospice right now . Any thoughts would be so appreciated.

[boswife]

This just breakes my heart and you are a brave woman..  Not from choice im sure, but it's the time i guess you just have to hold yourself together for her.  I know theres info on here about this 'time' and i'll try to hunt it down, though im sure others will tell you their expeirence with their loved ones.  I can only  and pray for comfort through this for you and your mom, and family.  God bless you all..   

[Desert Dancer]

bluebird1968, I am so sorry that you are in the position of losing your mother. It can be very hard to watch a loved one suffer and it sounds as though she's had more than her fair share in the last few years.

One bit of advice I can offer is to talk to hospice about doing ultrafiltration ONLY. This way the dialysis will not do any kind of cleaning, but you and she will be able to eliminate any fear of suffocating as her fluids will still be removed.

Everything I've heard about death from kidney failure is anecdotal but from what I understand it does not take very long (lots of variables there). I have also heard that it's peaceful and not painful or traumatic. There may be some nausea and sickness in the beginning but as toxins begin to build up she may begin to sleep more and more, with fewer and fewer hours of consciousness each day. One day, she may go to sleep and just never wake up. So, basically dying in your sleep and isn't that the kind of death most people want? Obviously this is not universal and - as I said - I have no direct knowledge, but it seems a pretty likely scenario.

Here are a few links to sites covering the subject:

http://renux.dmed.ed.ac.uk/EdREN/EdRENINFObits/NoRRT.html (Scotland)

And from the NKF, a fairly comprehensive guide called: When Stopping Dialysis Treatment Is Your Choice: A Guide for Patients and Their Families

http://www.kidney.org/atoz/pdf/StopDialysis.pdf

I'm so sorry that you and I ever had to meet at all and I wish I could do something to comfort you as you say goodbye to your mother. I'll be sending lots of prayers and good thoughts your way.   

[Rerun]

As was said above they can arrange for her to have the dialysis machine only remove fluid so she is not miserable.  You could call her nephrologist and I think he could arrange that if you need it.

[GraphicBass]

I'm late to this thread, but I would imagine that bluebird1968's mom has probably passed away by now.

My mother-in-law made the same decisions last May, and we were there visiting with the entire family shortly thereafter. She was weak and swollen, but alert, and eager to say her goodbyes. It was actually a good visit, though sad. She had increasing difficulty in breathing until my brother-in-law was finally persuaded to call in the hospice workers, who brought in equipment to make her comfortable as well as some good drugs.

She went into a deep sleep/coma about five days after stopping dialysis, then passed away in her sleep three days later during the night. She looked peaceful, according to BIL.

I won't believe it was not painful at times, but it comforts me to know that hospice was able ameliorate the pain almost completely, allowing her to remain alert enough to communicate. And when it's time, you sleep.....

FWIW

gary

[Flyinganchor]

I'm late to this thread, but I would imagine that bluebird1968's mom has probably passed away by now.

My mother-in-law made the same decisions last May, and we were there visiting with the entire family shortly thereafter. She was weak and swollen, but alert, and eager to say her goodbyes. It was actually a good visit, though sad. She had increasing difficulty in breathing until my brother-in-law was finally persuaded to call in the hospice workers, who brought in equipment to make her comfortable as well as some good drugs.

She went into a deep sleep/coma about five days after stopping dialysis, then passed away in her sleep three days later during the night. She looked peaceful, according to BIL.

I won't believe it was not painful at times, but it comforts me to know that hospice was able ameliorate the pain almost completely, allowing her to remain alert enough to communicate. And when it's time, you sleep.....

FWIW

gary

I'm 70 and have just joined IHD. It has been worth the effort just to read that post. I've asked the question at my hospital and always been told it is an individual thing and everyone is different. It really helps being among folk who have bought the teeshirt - thank you and God Bless.