Mom in stage 5 kidney failure GFR 11. Has anyone gone through this with their loved one?

Vicki has updated


"HI Joanne, thank you for your reply. We got my into hospice care about three weeks ago. She has been in an assisted living since Oct of 2019, just after her stroke. She was just recently diagnosed with stage 5 Kidney failure, and had both type 2 diabetes and high BP. She has recently lost 10 to 22 lbs in one month, very weak in her muscles and having trouble walking. She is very confused with her cognitions declining rapidly; no on puree foods. She is still in good spirits, but her memory is going. The nurse sad her BP has dropped to normal, and she is stable for now. The nurse indicates months, not weeks, so hoping I have some more time with her. Her hospice staff is wonderful, they help her bathe, among other things throughout the week. She's a fighter and hanging in there."

I've been caring for my husband with dementia for 14 years who had kidney failure long before that. At some point he will not want to, or be able to handle, dialysis. His cardiologist told me that kidney failure untreated brings on a sort of anesthetized experience before death - in other words, the body naturally makes the patient feel comfortable with changing chemicals. That was a big relief for me to hear! His PCP said as long as he wants to go to dialysis, to continue. Even with dementia he understands because he had kidney failure for so long before. (He had a donor organ for many years.)
I would not wish dialysis on anyone and feel badly for my husband who goes three times a week. Palliative care and comfort are a blessing. I've gone through the hospice experience with two friends and it was beautiful each time. Hospice will be wonderful if you aren't already there.

It time for Hospice. It can be set up at the AL. If your Mom is showing confusion, the toxins are probably already in her blood stream. A nurse will come in 2 or 3x a week to check on vitals. When at home, the family does most of the work. An aide does come in about 3x to bath the person. I would talk to the AL nurse about how they help in this situation. Will u need the Hospice aide or the ALs aides will still do what they have always done. Will u need to be trained to give medication or can the RN give it.

I would keep her in the AL. This way you have the option to get away, to go home at night knowing the AL staff will be there. Be aware, that you could sit with Mom all day, leave to go to the bathroom, come back and she has passed.

I have lost two friends to kidney failure. One was a juvenile diabetic and passed at 63. The other was a type 2 diabetic and passed just before he was 70. The 63 yr old was not able to continue dialysis the 70 had been on dialysis and chose not to continue it. Both were on hospice and passed within 2 weeks.

Hello so sorry to hear about your mom. My mom who is 78, last week was diagnosed with stage 5 kidney disease last week. Her GFR is 11. She was hospitalized for 2 weeks with 17 lbs of fluid around her heart, after removing the fluid a kidney biopsy was done which revealed the kidney disease. The Nephrologist did not recommend dialysis due to her frailty and multiple hospital visits dialysis would entail. He had us meet with palliative care who set us up with hospice care. Upon moms discharge home the next day hospice came to the house and I was amazed at what they offer. I’m an only child and would like to do it all myself but I know I can’t my dad is healthy but I know this will take a toll on him also. The hospice nurse said she will start with once a week visits and as needed will visit more and eventually daily as the disease progresses. She gave us some tips about treatment of pain and lack of sleep. Hospice also will provide her medications and all doctors visits at home. The provide walkers, potty chairs, bed pads etc. The nurse provided us with a 24 hour emergency nurse number. The nurse said she will have aids visit to help with bathing etc. as we need. My mom is adamant about being home and even though she and my dad was initially reluctant after meeting with the nurse we all agreed it was the right decision. My dad and I feel better about having the hospice support in the background as needed. This was all offered to us through Medicare. This is all new to me but happy to answer any questions.

I brought my dad to his home from the hospital when dialysis was the only option. He was 85, end stage renal failure, heart failure and of course dementia. We were through with the tests and procedures, no dialysis.

I knew his wishes and had to honor them. It was time for hospice and he did not survive one week. I only wish I had taken him home earlier.

His last days were as comfortable as they could be with his family all around him.

Yes, this is incredibly hard but its your moms journey. Just be with her and make sure she is comfortable. Your decision for palliative care is a good one.

I haven't gone through a similar experience arising from kidney failure, but just reading your post made me very sad.    It's so difficult to see someone failing in life.

I think hospice is a good decision, as well as spending time with your mother at this stage of her life.

There's no question it's difficult to see a loved one in distress.  The day I called for another ambulance for my father was when I came out to his house,  and he couldn't stand on his own.  As I helped him to the bathroom, I noticed his left foot was turning in, and couldn't be controlled.  That brought back memories of my sister's metastatic cancer causing her own foot drop, and the devastating terror of not being able to control her feet or even stand alone. 

I was quite sure then that this would be the last time an ambulance came to Dad's house.    But I tried to focus on getting him the support he needed as he entered this last stage of his life journey.

You're making the right decision by involving hospice, and I hope that brings peace to you and your family during this difficult time.

My grandmother died in the hospital at 85 of kidney failure as a complication of heart failure. Without dialysis, she couldn't have anything to drink so we moisten her mouth with a wet washcloth and her lips with chapstick, and gave her ice chips while she remained conscious. Her last several hours were a coma and she died peacefully. Grandma disliked the hospital but she was really too ill to care much. We watched her "shows" (soap operas), read the newspaper to her, and sang some songs she liked.

Hospice wasn't really an option for us at the time of grandma's death, but my uncle choose to die at home from pancreatic cancer and it was much easier for the family. My uncle had a large bedroom so his hospital bed was set up beside his regular bed and his wife could lay on her bed and hold hands with her husband. My uncle could see the kitchen dining area through his bedroom doorway and watch his kids chatting. When he died, we cried for a few minutes then called Hospice. Hospice sent a nurse over to confirm the death, called the funeral home and arranged the pick up of the body, then cleaned out all the medications and provided hospital bed.

Whether you choose to use Hospice services at the hospital or in your home, take care of yourself during this difficult journey. I have personally found the anticipation of loss is harder than the first few days of the loss itself.

God bless you and comfort you.

I have insulin dependent diabetes Type I with kidney damage. I will have dialysis when my GFR drops to 24 or 25. Dialysis is 3.5 to 4.5 hours long 4 times a week. I see my nephrologist every other month and have blood testing to track GFR.

Stage 5 and GFR of 11 is very advanced. Dialysis is recommended with a GFR under 25. Hospice should be called in. She should see nephrologist as soon as possible. Her kidneys are failing. If she doesn’t want dialysis there aren’t other choices.