Need help understanding my mothers situation

[araluen66]

Background: My mom will be 96 in two months. She has dementia. She has CHF. She has hypertension. The CHF causes edema so she is on lasik and her dr has been a real wizard in managing the dose even though it impacts her kidneys. One year ago her GFR was in the high 50’s. 3 months ago it was 30.2. Now it is 22. She is not a candidate for either dialysis or a transplant. Lastly, she lives in assisted-living. I am scared that she will go into Stage 5 and everything I read about Stage 5 seems to be about people who are on dialysis but I cannot find information addressing people who are 96 years old with CHF and dementia who enter Stage 5.

I have so many questions that I cannot get answers to. The dr is non committal and says no one knows, things can change slowly or quickly etc. but no hard answers. So maybe someone knows the answers to my questions or can point me to a place I might find them. Here are my questions:

1) exactly a year ago my mom’s GFR was in the high 50’s and three months ago it was 30.2 and now it’s 22 . Does that seem like a quick decline or is that to be expected knowing all her other issues?

2) Would the fact that her kidneys are damaged mean that they will continue to degrade as she cannot have dialysis or a transplant? Or could she just remain at 22 for a long time even without any sort of intervention and regardless of being on lasik and having CHF and dementia?

3) how do I find out what to expect if she crosses into stage 5 with CHF and no chance of dialysis or transplant? Will she be in pain? What am I meant to do for her?

4) what happens if she crosses into stage five but we don’t know it because it happens before they do the next quarterly blood draw? What am I meant to be looking for so that I can alert the doctor? Should I be asking the doctor to draw blood more frequently than every three months because she’s now at 22?

5) it seems to me that crossing into stage five means that my mother will pass? If that’s the truth, will it happen quickly once she makes it into stage five? Or can you be in stage five for a while? I really don’t understand stage five.

I am so ill educated about this and I hate that that’s the case but I just can’t find the answers that I need as I cannot find information addressing people who are 96 years old with CHF and dementia who enter Stage 5. If anyone can help me, I would appreciate it.

I apologize if I have said anything inappropriate or upset anyone as that was not my intention. I am just at sea and I just don’t know what to do or what to expect.

Again thank you for any help you can give me

[Bassetmommer NKF Ambassador]

Don't apologize for asking questions. It is the way to learn. There is a lot of information on the National Kidney Foundation website that will help you understand. But I will try to explain a few things that you asked. Yes, it is a quick decline. When people age, so do the organs. And as the organs get overworked because they do not function like they should, they decline. This is what you are seeing. However, it is pretty quick and maybe can be attributed to some medications she is on. Have those checked for being renal safe. The pharmacist can help you with that. Also make sure she is eating right and what I mean by that is no processed foods. Low salt, no red meat, no sausages or bacon, lot of fruits and veggies.

The truth is, if she is decline, and she crosses into stage five which is anything below 15 GFR or lower, her kidney function is pretty bad. If any form of dialysis is off the chart for her, yes...she will eventually die from this. BUT it has to get really low for that. I was at a 9 and 8 and 7 for a couple of years. I know others who live with low GFRs. What happens, just so you understand, the kidney cannot filter out toxins and so they build up. And they cannot remove fluid properly and so there is a lot of edema, or fluids that build up in the body including around the heart and in the lungs. Is it painful? Yes.... but if she is in Hospice, they will medicate her so she is not in pain. Let them do what they need to do and do not stop any medications they recommend, or your mother will suffer.

Have a conversation now about what your mother wants. Hospice, which is the way to go when and if she needs it, is the right thing to do. They will make her comfortable as she passes. Right now, she is not eligible, but you may want to talk about palliative care for her. And yes, she could stay at 22 GFR for a while, and maybe not. Don't be surprised if she chooses to let go. She had a big battle with her health right now. She may not be able to verbalize her wishes if she has dementia. That is why it is wise with the elderly to have living wills and DNR's in place. Think about what you would want. MY Father-in-law was 94 with CKD. He lived a long and rich life and when his kidneys finally stopped working, he choose hospice and had a peaceful and painless death.

Best to you and I hope this helps.

[araluen66 in reply to Bassetmommer]

Thank you very much for your answer. My mom has a living will and a DNR. She is in Pallative Care but no-one really wants to answer my questions - they just skirt them at this stage. I know that once they move her to hospice (if ever) then they will be more communicative. I love hospice - they do so much good for so many people.

Her dementia is such that she cannot answer even simple questions as her comprehension is impacted, her mind wanders, her word usage is impaired and sometimes she is almost in an alternate world.

So it is all up to me and I am trying to do the best for her but to do that I need to understand what to expect. She lived an incredible 94 years out of her 96 years so she did really well as far as that is concerned. I just do not want to not be prepared for what is happening nor to miss a sign that she needs more help.

Thank you again for your answer. It was a big help

[Camlyn77 in reply to araluen66]

You're a good daughter. 🫂

[araluen66]

Thank you

[nonna70]

I'm glad your mom is working with palliative care. Is there a reason she is not on hospice. I would check around and ask any questions you need to know. I wish there was more explanation of "conservative kidney management". Not everyone is eligible or wants dialysis or transplant. God bless you and thank you for taking good care of your mom.

[araluen66 in reply to nonna70]

Thankyou for your kind words and also for replying. Palliative Care says she does not need Hospice yet. She has been with them for nearly 2 years so they have a good history with her. But I think I am beginning to see some degradation in her condition so I am getting a little worried.

[Bassetmommer NKF Ambassador in reply to araluen66]

They will know when to switch to Hospice. There is criteria that has to be met and she is probably not there yet.

[araluen66 in reply to Bassetmommer]

Yes, that is true. I have faith in Palliative Care to know what is best but since they only see her every 6 - 8 weeks I worry that something will happen and they will not know until the next visit

[anemraz]

I'll keep it short. They are correct in saying that a 96 year old is not a candidate for a transplant. It's a very detailed and invasive procedure she's unlikely to withstand. That said, she IS headed towards kidney failure so now you have two options:

1. If possible, get her dialyzed at home

2. If the above is not possible, have her dialyzed in center with a catheter

3. End of life care

Please note that once kidneys fail, it is NOT a quick or even easy death. It can take weeks for toxins to build up and start shutting other organs down. If I was in your position, I'd fight for dialysis. My mom's center has quite a few old people in the 90s (my mom is in 70s herself) so I'm not quite sure why you've been told your mom is not a candidate for dialysis. It's a manageable procedure.

[araluen66 in reply to anemraz]

Thank you for your reply. She is not a candidate for the dialysis due to her other illnesses, her dementia - they think it will be very stressful for her (not understanding what is happening to her etc.) as well as to perform the procedure and so on. Also - she is not in a nursing facility so she would have to travel to get treatment which would be very, very, very difficult and stressful for her as well.

[CalimariBabe in reply to araluen66]

I have seen a lived one through dialysis, and agree that it is far too difficult and stressful to subject someone of that age and condition to it.

[anemraz in reply to araluen66]

I'm very sorry to hear this. I hope you can somehow slow the progression of CKD. But if peritoneal dialysis at home is even remotely possible, consider that option. Otherwise end of life care is all that can done given her age and dementia. My thoughts are with you.

[araluen66 in reply to anemraz]

Thank you

[CalimariBabe]

Are you in the US? If so, I would ask caregivers in her assisted living about their experiences with the local hospice services. Importantly, many people live for years in hospice care (even though the threshold to enter it is a doctor's opinion that the patient could pass in six months). The nursing home staff will probably say they are not allowed to recommend anyone but get them to share stories about which services have been helpful and readily available if you can.

My mother was in skilled nursing care when one of the nurses brought it to our attention that hospice care would be likely to benefit her. The hospice services were provided right there in the nursing home- she did not have to move . It did greatly benefit her and the family. A good hospice is far more able than the doctor or busy facility staff to help someone like your mom, and her family members like you, navigate the complex issues you face.

[araluen66 in reply to CalimariBabe]

Thank you for your reply. My mom has been under palliative care for nearly two years. They are the people who watch her to see if she is ready for Hospice but they do not think she is there yet. When she is they will provide stop palliative care and provide hospice care. I love Hospice - it has been a help to us so many times.

[Beachgirl32]

sorry you and your mom have to go through this journey . She may or may not stay at 22 percent function . At 96 transplant will not be granted . Dialysis may be to hard for her . I just want you to know it sound like you are doing the very best you can . And you are doing a great job . It seem to me to keep your mom in palliative care until she has to go to hospice’s. Keep faith prayers lifted to you and your mom through this journey .

[araluen66 in reply to Beachgirl32]

Thank you for your kind words. It helps to hear that people think I am actually doing what I should be doing - that the care I am taking of her is on the right track. So thank you

[Marbella17]

The others have touched on most of your concerns but I would just add that I think your consideration of increasing the frequency of the labs is valid, possibly going from quarterly to monthly. With her renal function declining at such a rapid rate you would probably have more peace of mind with more closer monitoring. You can ask this from her team or doctor, I don’t think they would be opposed to it given her age and the rapid decline.

[araluen66 in reply to Marbella17]

Thank you. So it does seem to be quicker than normal decline? I thought it might be but was not sure.

[Marbella17 in reply to araluen66]

Of course, anytime. Yes I’m afraid so, 50s to 22 GFR in a year seems a bit accelerated. Do you know if she may have had any acute kidney injury during that time (sometimes caused by contrast dye for imaging or an infection)? Hopefully she will stay stable at this current level, she still is not in kidney failure so that’s promising. Sending lots of positive thoughts and prayers!

[araluen66 in reply to Marbella17]

No - no injury, she was not sick and no scans. She does have CHF which puts a toll on her kidneys somehow - definitely the drugs that they give her for the edema is not good for her kidneys. But we have to rest the edema. Thank you for everything

[Marbella17 in reply to araluen66]

Ah ok got it, she may be on diuretics for the chf which can definitely take a toll on the kidneys and combined with overall age related kidney function decline. Sometimes it’s so hard to find treatment/condition management balance between the different conditions… my dad has multiple comorbidities combined with stage 5 renal failure so I know how tough it can be to find viable options to address different matters. My pleasure, anytime!