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?
1 - Does he want to stay married if he doesn't live with his wife? Probably not, Help him to a "no fault" divorce lawyer to end that drama.
2 - Do you intend to care for his ever increasing health needs? Maybe, but talk with your family about it and other options: adult day care on non-dialysis days, assisted living, skilled nursing care at home of facility...
3 - Do you intend to continue footing the bill for his needs until he passes? Doesn't seem fair. Since he has insurance and some money coming in, he should pay for as much of it as he can. Decide with him what he should cover and what you will supplement.
Ideally he should be paying his own expenses and contributing at least to food for the household. He has income; it's selfish for him to use it strictly to keep his wife out of his hair. If you are wealthy you might not care but if not, your income is needed for your family.
Personally I could not live with this situation, but I realize everyone is different and has their own threshold of what is too much. One last thought, your dad isn't going to get more thoughtful as he ages, just the opposite. Most elderly become more and more self-centered as their world narrows, and for those that were self-centered as a younger person, it's a foregone conclusion.
I wish you the best in working out the right solution.
That might alleviate some of ypur resentment if you do decide to keep him in your home for his own well-being.
Now you have the choice to unload Dad fast or you can continue with his care.
PS: Your sister was right to stay estranged.
He creates a situation where he believes he doesn't have any choice in this matter. He does. His dad can go home to his wife and live in his own house.
If he and the wife cannot live together, great. But if they live apart each should get their own SS check. Not that difficult to change the address and bank account for his own check to be deposited. Has he ever said why it's ok for the wife to spend both checks? Also, is their house in both names? Has he ever said he wants a divorce or if he plans to live with her again?
A 'little' equity in a house would indicate there is still a payment due, but some equity has been built. You say 'they' aren't interested in living a little closer to where dialysis is more convenient, however it appears he was more than willing to get out of the remote residence and move to where you are. Stepmom may want to stay where she is, but have you asked her what her plan is concerning dad's care? Maybe initiate the conversation with her to get input from her - maybe dad could be part of a group phone call with all of you.
You aren't stuck at all. Now that dad is more stable, talk with him about the extra work your wife (and you) have with him there. Ask if he'd like to see about a facility to move to -- especially since he isn't that keen on getting out of the chair or moving about, and his medical needs could be met. Tell him your own funds are getting tight and you now understand the expenses of living to old age and/or having health problems. If he's not interested in facility near you, he still has the option to return to his wife and home. He does have options and he has a check that needs to be following him wherever he goes.
if you are going to let him stay you should get the money.
you must feel trapped, and it is not fair for the wife who is not doing any work to have his money. Getting his money and an aid in for a few hours would help you.
I wish you the best in getting this very unfair situation in control
You are a remarkable person, but you need to live your own life. Talk with a social worker at Adult Services and let them guide you to placement in a care facility.
They will help and get the benefits he is entitled. You may also want to discuss preparing a Will, DPOA, medical POA and living will. Hope all works out. Seniors deserve their last days to be filled with joy.
Not all seniors “deserve their last days to be filled with joy”, just like not all of them are going to heaven - according to the Bible. And for all of us, we rarely find that Best Seller entitled “The Joy of Old Age”.
Why are you allowing him to continue to live with you, since you are not content with this situation?
You need to put yourself, and your family, first.
If you do not, you will (continue to) resent your dad and continually argue.
If he is of sound mind, it is up to him to make his own choices about dialysis, isn't it (or am I confused by your question).
If he can manage, why don't you let him or why are you putting yourself in a victim situation as if you have to do what is his, and his wife's responsibility?
You are only stuck for however many years if you decide to be.
Why can't you tell him to go home? Why don't you set limits and boundaries, based on your own and your wife's needs? You say he and his wife 'could manage if they tried. . . ' well, why don't you "let" them - or insist on them taking on their responsibilities? If he is having issues with his wife, this is up to him to figure out and decide what to do, isn't it.
Why are you putting yourself in the middle of something you don't want to be in the middle of and don't have to be?
You sound like you feel like a victim as you do not appear to have feelings of self-worth to set boundaries to put yourself and your wife first. Your behavior sounds as if you have a family history of trauma. If I were you, I would get into counseling / therapy as soon as possible to sort out your feelings and decisions.
"what I'm saying is I don't want him to die; I want him to change. But he won't change. So I either have to keep him comfortable so he'll continue to choose to live, or make him uncomfortable one way or another, which at a certain point will result in him choosing to die. I think many here are saying its his choice so I shouldn't feel bad, but how could you not feel bad about a parent choosing to die? (Painful terminal illness excepted.) Especially if you can prevent it? I would carry that weight the rest of my life. "
He isn't going to do anything to change the situation.
His poor wife!
That's abuse and no one has to live with abuse.
Also, I wouldn't be so quick to dismiss his desire not to receive dialysis. It is a quality of life issue that each person has the right to determine for themselves.
Throw your freeloading father who pays nothing, the hell out of your house and send him packing back to his wife.
With all respect to you, why on earth would allow such a situation?
If your father is miserable with his wife, that is for him to sort out not you.
In the meantime while you're finding solutions to your father's situation, DEMAND that HALF of ALL the monthly income that he and his wife have coming in be handed over to you. No more freeloading in your house. Call the wife and tell her that husbands are also entitled to half of everything. Not just wives.
Make preparations to send him home. If your father starts making suicide threats that he'll kill himself if you send him home, call an ambulance and have him commited for a 72-hour psychiatric hold. Tell the paramedics he's threatening to take his life. I guarantee a couple days in a psych ward will stop him using such threats to get his own way.
If he threatens that he'll stop all treatment if he's sent home, tell him that's his choice to do as he wishes, but he cannot live at your house anymore, nor will you allow him to die there.
Then buy the plane ticket and send him home. Either he can work things out with his wife, or he can get divorced. His wife can take some responsibility.
I think you need professional help to help you decide your next steps and to provide you support with the consequences.
Please do it soon or this could permanently affect your marriage.
I did speak with my dad a week or two ago about how we can’t go on like this. I told him he needs to talk to his wife to get on the same page about a sustainable arrangement, which this is not. He didn’t say much and I’m pretty sure he hasn’t spoken to her about it. I think he just hopes I am venting and can let it blow over. This weekend my wife is out of town and I will ask him if he had that talk with his wife. If he hasn’t then I will get her on the phone and talk to them together.
Thanks again.
I am sick to my stomach NOT about your situation, nor your father’s, but I am thinking with sympathy of your poor wife who is being taken advantage of, and even more so about your special-needs son, who requires all of your love and effort right now.
You yourself said your child got into your dad’s feces and unwittingly spread it around due to your father failing to clean up properly. Unacceptable. In fact TERRIBLE. This alone shows that your son isn’t getting the needed attention to keep him safe. Fecal contamination of your household surfaces is bad news.
While you lavish all this attention and money on your father, are you considering who is going to do the same for your son when he is an adult who will (presumably) need special care at great cost?
You are destroying your special-needs son’s entire future, not to mention your own retirement, and possibly your wife’s good mental and physical well-being, by wrongly favoring your father.
You need to straighten this out quick.
As you might imagine, the stuff has hit the fan regarding the level of drama from my dad and his wife. He is going to go back down south, where they will despise living together and he will struggle to be able to get the medical treatment he needs. From there it seems it will only be a matter of time until he either passes away from lack of treatment, or calls me to say they are divorcing and he needs my help again. I suspect that in the end I will have to subsidize his living expenses to have his own place - he won't be able to afford it on his own and the only other alternative would be to take him in again...which would kind of defeat the purpose of what I am doing now.
It all feels very unsatisfactory, but I think this is just what happens when people fail to prepare for old age. I expect that since this is a caregiving forum none of you reading this really needed another example, but here it is anyway.
In your first post you say your own financial predicament is tight so your financing his living expenses is not feasible. You have your own family to take care of.
There is section 8 housing available for low income seniors. But you have to sign up early as there are waiting lists. You cannot be your dads solution financially or for housing anymore.
I suggest having weekly progress meetings with dad about how his lining up things are going and if his plan is to just move back to Florida then you need to consider moving up the time line. There is no reason to delay the inevitable. It's just a waste of your time.
And Florida is old people heaven. There should be plenty of resources he can access and get help from.
You do sound like a nice guy who is getting treated badly.
I am in a similar situation with my father and stepmother. My stepmother wants my father just for his money and is not treating him well as he gets older. I feel sorry for you as you clearly have your own family to care for, but it is hard to watch your own father suffer in a situation of his own making.
It is wrong for your stepmother to take your father's money, and offer no money at all to you for looking after him. Can you contact social security and tell them your father is no longer living with his wife? They will probably stop (or cut back) the social security payments then. Or take your father into the office and get the social security money paid into a different account so the stepmother cannot get it.
What does your father want to do? Either he goes back to her or he doesn't.
Remember wedding vows? Well there's in sickness written in there. So she needs to step up. Stop being the martyr and taking their life on. The wife should be doing the caring. To bad if they fight. He married HER. You should be saving for your retirement. Not spending it on him.
DEvander that money now. If he says no and it's time for dialysis he better call an Uber. Better get a motel. Better call your wife. Narcissists will make you feel guilty, make you feel shame.
When you were growing up could you lay in bed all day, or skip school week after week? No because there was house rules. You need to get some. Tell him your money is tapped out. Maybe a few days at the motel would make him realize he needs to step up and do something.