Sorry for the issues, K.
Your experience sounds nearly identical to ours with MIL several years ago, think I've written about it. Her final slope (lasting about 7-8 months at 89) consisted of multiple ER trips, rehab, falls and hospital stays caused primarily by pneumonia and CDiff. Underlying heart failure but no diabetes. As I read your first post it struck me immediately as the beginning of what I'd call the final glide path. It was frustrating to not get any prediction of how long it might last, a mixture of optimism and reality from the medical staffs. I understand fully though how it CAN last a long time, or the sudden onset of pneumonia or other malady can bring the end quickly; no Dr. wants to make firm estimates when such can happen.
Yes, exactly. It is so clear to me that my mom is in a declining condition that will not reverse for the long term. It may go up and down. The procedure they just did to drain pleural effusion and the IV diuretic has been very effective at getting rid of the excess fluid. My mom has had enormous lower legs for the last 2 months and now they look close to normal. I spoke to her kidney doctor today and he was very pleased with her response to the treatment and I can see by the labwork (which I have access to online) that her kidney function -- while still bad -- has improved a bit the last couple of days.
That said...there is no comparison between how my mom was 3 months ago (living alone, still driving) and now (mostly in bed except to get up to go the bathroom or to therapy).
My MIL was a tough case. Wouldn't do what was told, but refused to accept any reality of what was ahead.
I fear this kind of thing for my mom. She is not doing the things that need to happen for her to get stronger. She won't eat foods with protein, even foods she used to like. Without the protein she doesn't get stronger. Some of her problems are made worse due to the low protein she is eating (yes, with kidney disease she shouldn't have too much protein but her problem is the opposite).
She has been told that moving around will help her strength and help keep the fluid down. She was getting in the recliner and sitting up almost all day and going to therapy. After she got pneumonia, though, she quit doing that. Now, she stays in bed 100% of the time except to go to the bathroom or if they come to do therapy (she will do that). Once she gets moving, she actually moves fairly well (with a walker).
She is starting to get resistant. Today, I asked her if she had walked in therapy yesterday (we had to leave just as the therapist arrived). She said she didn't know. I asked if she walked this morning. She said she didn't know. My sense was that she knew but she doesn't didn't want to talk about it. She used to talk about wanting to be able to walk and get around on her own. She doesn't do that any more.
I do recognize that she doesn't feel well. She doesn't feel like getting up. She just doesn't want to do those things. But, at the same time, I don't think she accepts the reality of what will happen. That is -- I see the end of her life approaching. She thinks that she will move back home when she is somehow magically stronger. This makes it difficult. And, she doesn't really want to talk about any of this.
No easy answers; however, the attached article resonated deeply with me. If nothing else it may help you frame your own thoughts on the subject:
https://www.nextavenue.org/know-love-now-let-die
This was a good article. I was, however struck by this line
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”
From my standpoint I see it as just the opposite. I am all but desperate for guidance and for people to be realistic. It is so, so clear to me that my mom is on this downward slope. Even she says her decline from where she was 3 months ago is shocking to her. She told me she didn't expect to have such a severe change.
To me -- the medical end of it always seems like a hamster treadmill. There is always something to be done. Take this medicine, have that procedure. The point at which to say "enough" is not always clear.
I am glad my mom had the procedure to drain the fluid. It was not a painful procedure for her and did give some immediate relief. Just from a comfort standpoint, it seems to have been worth it.
And, yet, I see so much being done and it just seems so endlessly futile. She has been in the hospital or rehab for all but 2 days of the last 2 months.
As far as hospice -- the nursing director at rehab said she didn't think it was yet right for her (although she did say we could get an evaluation for it -- I don't think my mom would really want it right now).
The one thing that the hospital did do that I felt was appropriate was ask her if she wanted a DNR. Well, actually they asked me. This was soon after we got to the ER. I actually thought it odd that the nurse asked me when my mom was right there in the room. I told her to ask my mom. The nurse did and said they ask anyone who is over 74. She explained some of the negatives of resuscitation especially in older patients. So she asked my mom if she wanted a DNR. My mom told her to ask me... About then the nurse said it didn't have to be decided then. My mom did mention that she didn't feel she could handle having any broken bones from resuscitation.
The next day, another nurse called me and asked again. She had asked my mom who said to ask me. I told her to do the DNR. The nurse said she felt it was right to do given my mom's age and condition and the risks of resuscitation. Later I talked to the doctor he also confirmed it with me (he, too, had asked my mom who said to ask me).
So -- at least we do have that.
But getting back to the article. It is very hard for a patient's family to be anything but aggressive in treatment unless doctors have told the family that treatment is just postponing the inevitable. You don't want to be the one to "give up" on your parent or whatever particularly if you don't have the expertise to know what will happen. I am not a doctor. I may think my mom is in an inevitable decline but I could be wrong. I look to the doctor to tell me. But, in general, they don't bring up the big picture. They talk to you about what is happening
today not about what is likely to happen next week or next month. So -- for today -- there is almost always something that can be done. It is only in retrospect that you can look back on it and see that it wasn't really worthwhile (I'm thinking of when my dad had lung cancer). But no one really helps you with that and as a family member I look to the professionals to tell me that. It shouldn't be up to me to guess on this....