Thank you to everyone who answered. It made me feel a little more grounded to know others understand what I’m going through. BurntCaregiver was right on, there is a history of passive-aggressive, gaslighting, etc. I couldn’t walk away, that’s not who I am. I decided to put on my best Broadway face & pretend everything was okay. That worked for about 2 weeks. But I saw her health failing & I’ve become more & more concerned about her entering into Stage 4 with no Palliative care or anything set up knowing what’s coming. Well, everything came to a head the other day. I went over to help with her bills after I had just been there the day before & she refused to let me help her with her bills. I don’t come every day. Of course it was just a slight scroll up & she would have seen the « PAY HERE ». We fixed that problem & then everything just came out if me with tears & honesty. I didn’t raise my voice but kept trying to make her see that I’m involved in this too & I need a plan. She always tells me she will not go to the hospital under any circumstances & blames me that I took her to the emergency room when she couldn’t breathe. We found it was pneumonia. So, I think I broke through to her. She agreed to get Labs next week & then see the Dr. to get approved for Palliative/Hospice. Looking back to the other day, I almost had a nervous breakdown when she called me to come help her after just being there. I was so frustrated & upset. Everything all came up, like Mt. Vesuvius. I couldn’t go on playing this charade. I couldn’t. I cried & pounded our wooded table so hard I bruised my hand. BUT, I think it spurred me on to confront her with everything I was feeling & seeing happening. My family growing up was big on sweeping things under the rug & if you don’t see it, it didn’t happen. Everybody in my family is like that but me. I feel like I was in a movie where I’m the only one left with a grasp of reality. My stress level plummeted once I confronted my mother about her disease. If you can believe it, she knew nothing about CKD. She said yes, go ahead & make the appts. Now I can create a plan around the new labs with her doctor & have help when I need it. Thank you all again for your input.
Does your mother understand what Palliative care is?
Does your mother understand what Hospice care is, and that it is end of life care in which she will be kept comfortable but will not be treated for her kidney disease? (In truth, and at her age, that would be a travesty and a crucible).
Does your mother understand that without dialysis she will die and WITH dialysis she will die, but that her dying WITH dialysis will be greatly prolonged and much of it done IN HOSPITAL and hospital settings? And that she would have to go for the exchanges three times a week, for hours each time? And would be alone getting those because you cannot be there for all of that?
You say you didn't raise your voice.
But pounding the table may be a good substitute for a raised voice in my humble opinion.
To hope to settle lifelong family issues with a dying woman in her 90s, failing both mentally and physically, would not be fair, in all honesty.
I think that you need to explain your limitations. And that your mother may need to enter care. Otherwise, your mother is not now, and CERTAINLY WILL NOT BE in any condition ongoing to protect you no matter what you think and feel about all of this. Nor to deal with pyschological issues.
Your mother is now dying.
This is not, imho, the time for you to work out family dynamics.
Any movie-like come-to-Jesus-moments about end of life "understandings" is for the most part utter nonsense.
If under-the-carpet-sweepings is how it has been done then it will likely be more dirt swept under than handled with any directness. It is too late for all of that. Your mother is now weakening mentally and physically. This is not the time to discuss family dynamics and their effect on you.
That will have to be done by you with professional help as you need it.
I would love to hear from you that mother recognizes that dialysis is not something she wants. If she doesn't want hospitals it is likely she will be virtually living in one 1/4 of her time if she does go on with a plan for dialysis.
You may be surprised that OFTEN when patients refuse dialysis and everyone gets ready for their lab numbers to raise or plummet and for them to begin actively dying IT DOESN'T happen.
I am just trying to warn you that the truth is that your mother may not go quickly at all and that even without dialysis, unless the MDs have assured you otherwise, your mother may live a year and more. And more.
She may weaken, fall, get infections, become confused, break bones.
So understand that and get all the info from the MDs you can.
And let mom know you will support a home environment as long as you are able, but that the time well may come that you cannot. That you will do your best but can do no more. Things will be as they will be, there may be further heartache and loss and you will sustain one another so long as you are able. You are not now responsible for her happiness. There IS no happiness in this at all.
I think you are approaching this honestly and good for you. But I think your mother will not be accepting now of a whole lot of change in her life, and I think in terms of mental problems you are seeing now the tip of the iceberg. I am sorry to level so much honesty on you, but you need to be able to speak freely and honestly with her and the doctors together.
I surely do wish you the best, and thank you for getting back to us, and I hope you will keep updating us. You will be in our thoughts. As will she.