My mom is 76, and we just found out she's in stage 5 kidney failure with a GFR of 11. She is experiencing many of the end stage symptoms including, severe weight loss, confusion, weak muscles and bones, jaundice, metallic taste in her mouth, tremors in hands, and severe fatigue. Today she fell on her face and split her lip in her assisted living dinning room, right before her dr's appointment, which sadden us so much. Her dr is referring her to a neurologist. We are not on board with dialysis or a transplant due to her comorbidity of type 2 diabetes, dementia, and stroke in 2019, causing high blood pressure. We feel the burden of dialysis may outweigh the benefits. I love my mom and want her to have a good quality of life how ever long she has. Spending 20 plus hours in the hospital for the rest of her life would not improve her quality of life. So, we are choosing palliative and comfort care for her. My mom doesn't understand what's really happening to her, but she absolutely has always hated the hospital. We want to spend her last days with her, as happy ones. Hospice has been suggested as well. Has anyone gone through this with their loved one? This is a really hard one for me. I say for me, because I am her only child alive, aside of my husband. It's all us, we are her DPOA. Thank you.
"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 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.
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.
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 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.
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.