Caregiver Assistance

[RubyLipbaum]

My 88 y/o mother has a GFR of 15. It dropped from 29 in November to 15 in December. Doctors said she was ready for palliative or hospice care. We do not qualify for hospice care because every time someone comes out to do an eval, she appears fine and says nothing is wrong. Most days though she has horrible nausea and eats little. She went to ER twice for fluids but her doc told her to stop going to the ER. Doc said mom should be on comfort care measures now. From a caregiver perspective, there are days when we think she will pass and other days she is up eating, drinking, and enjoying the company of her caregivers. This is and has been an emotional roller coaster ride for my sister, me, and my father. No, I would love for her to get better, so I am not saying anything negative. I am just so confused about this disease. She does not want dialysis. Will she get better? Or are the good days just that and temporary? One week ago we were ready for hospice because her breathing was bad and she had not eaten for a couple of days. Then she bounces back. Is this normal? How can we best handle this situation?

[Bassetmommer NKF Ambassador]

How do you handle it? You enjoy the good days and get through the rough ones. At a GFR of 15, she is holding her own as far as kidney. I was at that level for a quite a while. Will she get better, probably not. Will she decline, yes someday. She will be the one to define normal for her.

Yes, it is tough on the family. Try to pack as much love and good memories in as you can. Talk to her and ask her what she wants. I wish I have listened more to my Mom when she was sick. And talk to each other about what is going on. You have a good support system with your dad and sister.

The doctor is the one who orders the level of care. She should qualify for palliative care right now. Speak to your doctor. There is something off if the agency is not seeing or following doctor's orders.

Let her eat her favorite things and maybe she will have more of an appetite. The doctor can also address that issue with medication to enhance the appetite. Try to help her keep her fluid levels steady. It's harder on the heart to go from dehydrated to over saturated.

Let us know how we can support you.

[RhenDutchess123]

Your Mom is 88 and apparently very strong willed...good for her ! She most likely wants to stay in her home to pass.I would do whatever SHE wants, you can make her comfortable and love her, but the final decision is hers...let her.

[Darlenia]

Welcome! I, too, have served as a caregiver to my hubby who experienced kidney failure, dialysis, and transplant - in his 70s. I agree with Bassetmommer's advice - a GFR of 15 is sufficient to extend life for some time. As people age, kidney function (and everything else) slowly declines - some live with a GFR in the single digits for a number of months, even years. I had a friend (a registered nurse) whose mother lived to reach her 100th birthday with an eGFR in the single digits. At that point, after attending a large birthday celebration, her mother decided not to replace her pacemaker's battery and passed away peacefully in her sleep. My friend was amazed how long her mother lived with really low numbers - apparently everything slows down over time. So, when will the end of life occur? Who knows. Gerontology is a very interesting subject in itself.

As Bassetmommer also mentioned, I suggest huddling with my mom's medical team and proceeding with palliative care if possible. Many insurance plans palliative care which uses the existing medical professionals in your mom's life whereas hospice care may not; with palliative care there's a history that's already known and palliative care can also use measures (including dialysis) that hospice doesn't offer. The reason that this is important that passing away from kidney disease isn't always easy or simple. Sometimes there's horrible swelling (since kidneys aren't processing water well), sometimes there's appetite and wasting issues, etc. With palliative care, emergency dialysis can be used in those instances to relieve suffering. Measures such as that generally aren't available in hospice. So, start with palliative care if possible, and bring in hospice at very end. My hubby often talks about the horrible process his grandmother went through with kidney failure back in the day when nothing was available; we're fortunate to be living in this century with options. So, my advice would be to make my mother as happy and comfortable and as peaceful as possible. And take every opportunity to hear her stories, to ask questions, to go over old pics, and more. The end-of-life process can be grueling, but it also offers those wonderful opportunities to reflect and build love within the family circle. And when your mother is gone, those precious memories will carry you through the years. Sending compassion and hugs over to you.

[orangecity41 NKF Ambassador]

Have you checked with Medicare on coverage. Usually hospice or palliative care is covered by Medicare part A and/or Medicaid.