Hi everyone. Long story that I will keep short-ish. After being estranged for several years, about a year ago dad and stepmom contacted me. His kidney disease reached end stage, he wasn’t going on dialysis, and wanted to come visit. Then stepmom says she can’t take care of him. I agreed to have him come live with me and my family as they live 1,000 miles away so, I can’t help him there. Expected he would pass within months. I don’t want to offer money for them to hire care because I can’t really afford it and I don’t trust her to not just take it for herself. Being far away, I couldn’t verify it was being put to proper use.
Dad comes up and I get him set up with docs. No sign of recurrence of the bladder cancer that damaged kidneys. Kidney function poor, but not showing severe symptoms. Arthritic knees and in poor physical shape, had a few falls. He is happy as a clam because apparently his wife was making him miserable; we are nice to him and mostly leave him alone. He can sit around all day watching TV. My sister lives nearby but they remain estranged. His wife lives alone but off of their full, combined SS checks. They have debt and no assets except some home equity. I am taking care of nearly all his living and medical expenses but he does have good insurance from a prior employer.
A few months in the trouble starts. He is hospitalized with an infection (uses a nephrostomy permanently so prone to this). Shortly after release he is back in hospital with both onset of uremia (hallucinations) and abdominal pain that turns out to be a colon stricture. So emergency dialysis and a colostomy, yes now all of his waste comes out in bags. Took a few months to recover from surgery and he receives dialysis now.
After he came up we had talked about dialysis and his reasoning for not wanting it was flimsy. “I have cancer.” No you don’t. “We can’t afford it.” I’ll pay for it (his out of pocket max for a year is only $1k). “I wont have quality of life.” You just go there and sit and watch TV, the same thing you’re doing anyway. I needed to hear him say that he was ready to die, but he wouldn’t say that. I feel his wife didn’t want him hanging around on dialysis so she convinced him he didn’t want it. The main reason to get him up here was so he could make decisions for himself.
So where am I going with this? Dad’s health is stable now and he will live for many years with dialysis. He’s here now not because he needs our caregiving, but because he is broke and he and his wife are miserable living together. He’s not a bad person but he drives us a little nuts by leaving messes in his wake (food and feces) and just being in our space all the time. But if I try to tell him that it’s time to figure out how to get him back in his home with his wife, I know he would first argue about how his needs can’t be met (they live in a very remote area and won’t figure out how to make it work someplace where dialysis is available) and ultimately would choose to just stop treatment and die.
So, I can either let him stay here and mooch while he passes all his income to his wife, or he will effectively kill himself.
I appreciate that so many here have it so much worse. But, I feel like I’m even more resentful because the care I’m providing (I do take him to doctors, order all his ostomy supplies, and of course room and board) is worse because he and his wife could manage if they tried and made some sacrifices, they just prefer to take from me and my family. My poor wife is at her wits end.
Anyway, if anyone sees a way out here I am all ears. Did I screw up by challenging him to make his own choice about dialysis? Am I just stuck for the next 5 or more years?
Glad you are reaching out for help. Even if just to a bunch of randoms over the net.. keep reaching. Area of Aging, Lifeline, your local GP, councelling - keep going until you do find advice that sits well with you.
"Did I screw up by challenging him to make his own choice about dialysis?".
No, I wouldn't say 'screwed up'. You gave the man respect & the freedom to choose. He CAN choose dialysis over fading out.. but what he CAN'T choose is you & Wife to be his Life Solution: his handmaidens, bill payers & home providers.
** He needs to take responsibility for his choice now **
"Am I just stuck for the next 5 or more years?"
No.
The facts as I see them.
1. Dad's relationship broke down. (She really did pull a fast one there..).
2. Dad has health needs preventing him living independently. Cannot self-care or arrange own accom & homecare supports.
If you took your home & your hands-on help out of the equation - what's left?
Skilled Nursing Home or Assisted Living are his real world options. He must do that.
I guess that’s what’s so frustrating. It’s not really medical assistance he needs. That’s why he came, but not why he’s staying. He’s broke and his wife makes him miserable. That’s why he’s here. And now he’s holding a gun to his own head and saying that he’ll shoot as the ultimate leverage.
"Burp" the bag?
Change the bag?
Figure out how much he is costing you monthly and tell him you fully expect him to pay for his room and board and his own supplies.
Why should she get his money when she won't take care of him. Not on my watch. Dad pays for himself, whether they like it or not.
Otherwise, he is taking advantage and that is not okay, not after years of estrangement.
Look up FOG, fear, guilt and obligation, this is what your dad is doing to you.