So 30 years ago, my dad and step-mom moved to South Carolina from Michigan (where I live) to be close to her kids (two live in by them in SC, one lives about an hour’s drive away in NC).
Within the past few years my dad’s been declining from dementia and a stroke in mid 2022. My step siblings have been helping their mom and my dad pretty well.
I went down after his stroke to help, my wife went down a few weeks later to get him settled at home, tried to set up some home care aides, but he got straight-up mean and nasty about having a stranger in his house (verbally attacked my stepmom, accused her of cheating, etc). We’ve been down several times since then to visit and help how we can.
Things have largely been sustainable for the past year and a half for all involved, he can walk with a walker.
But then this past weekend, he fell and was immobile on the floor for four hours before my stepmom called 911. They took him to the ER. He was diagnosed with covid and deemed OK to be released (not admitted), despite my stepmom and step siblings saying there is no way he can be cared for at home in his condition (could only take two steps at the hospital). He was sent home.
No chance of getting him into a rehab facility without a hospital stay.
Step Sister 1 called me when they took him to the ER and said I should come down because they thought he was going to be admitted. I said OK. Bought my one-way ticket. Then they told me he was not admitted, stabilizing at home, moving around, and acting better and they didn’t want me to “waste” a trip down when I wasn’t immediately needed, especially at Christmas.
I said OK, cancelled my ticket, and told them I’d be down in January to work on getting him into a memory care facility, either in SC or MI.
Now they’re saying he’s not better, can’t really get out of bed, and they can’t handle taking care of him on their own any more. I understand he’s not their dad, so I guess this does seem like a heavy lift for them.
On the other hand, my own step-dad had similar dementia and health problems before he died a few years ago, and I did everything for him and my mom because his own kids were not in the area. I had no problem doing it.
So now they want me to re-book my trip. And I’m not sure what to do. We’re looking at upwards of $800 to $1000 round trip since we’re a week from Christmas and it’s last minute. I don’t know how much I’ll be able to get done with long-term solutions while I’m down there as it’ll be a holiday week, so i’ll probably have to go back down in January as well.
My kids are a mess because I won’t be home on Christmas now too.
I’m trying to get him into a respite home, but that’s a week away apparently. My stepmom is gun-shy about trying home care again. I’ve been on the phone all day with respite care, primary care doc, VA, etc. trying to find an immediate solution to relieve my stepsibs and stepmom for the next couple days. Nothing’s presented itself.
Advice from my mom, in-laws and a couple other people: that it’s my ultimate responsibility (along with my stepmom) to figure out long-term stuff, but I’m under no obligation to go down there right now to help out with daily care. That’s a big ask of me, they say. Twelve-hour drive, expensive flights, etc.
Their argument is that my dad and step-mom chose to live by my stepsiblings (three of them), and not me (no siblings), so the expectation is that the ones nearby got them when times were good, and they are then the caretakers when times are bad.
Incidentally, that’s how it’s going to be with my in-laws who moved by my wife and me (we will expect no daily help from her out-of-state brothers), and that’s how it was with my stepdad before he died (whose kids were out-of-state).
I understand this is a heavy burden on my step-siblings, and I don’t want to be an asshole about it, but I also don’t want to spend upwards of $2000 on flights over the next month, and disrupt my kids’ Christmas if it isn’t absolutely, positively necessary. My step-mom has said she doesn’t want me to disrupt my Christmas over this, but she also knows she can’t care for my dad anymore.
FYI, I’m not particularly close with my stepsibs, but have been stepsibs with them for 40+ years. We have a good relationship, just not particularly close. I’ve talked more with them today than I have in the past 10 years combined.
Halp me! If you’ve read this far, thank you and lay it on me. What do I do?
(given it is two days I wonder if this is one of the Amtrak things that is really a bus)
Overall I would urge making the trip. It’s family and it will matter for your future relationships with them. I get it is onerous and expensive.
My mom fell into profound dementia. Fortunately she had made provisions long before for her care and that worked well.
One way or another he needs to be cared for. That is either family or some facility. A burden on those doing the care or very expensive to have someone else do it for you.
I don’t think I could leave til Thursday this week, and I would probably drive the 12 hours (probably 14+ with holiday traffic) before attempting two days on a train or bus.
I’m not clear why it’s all falling onto you to figure it out. I would think it’s step-mom’s responsibility. What would she do if you weren’t around? Whatever that is, she should do that until you can get there. Definitely kids should get involved when their parent is like this, but ultimately she’s his wife and is the person who should be making these kinds of decisions for him. It sounds like they want you there for the convenience aspect. While that’s understandable, it’s not urgent enough for you to rush down there with all this added expense and trouble.
ETA: tl;dr: What @filmore just said while I was bloviating.
The concern I have is why this festering problem of years has suddenly, suddenly, become a) must fix like tomorrow, and b) only the OP can fix it. All of the other people who’ve been dealing with it for years are suddenly rendered helpless by this latest incremental problem. I’m not buying it. At least I’m not buying the step-sib imposed urgency of it.
Yes, poor old Dad is worse than he was. And he probably totally belongs in a full-time live-in facility and has for a year now. Nobody, not them, and not the OP can conjure that up from a cold start in a few days right at Christmas after the hospital declined to admit him. You’re looking at the admin work of a month.
The logical breakdown of duties is the steps help the wife handle the physical day to day while the OP takes the lead on all the longterm admin and care arrangements, with wife’s involvement and awareness along the way as ultimately she’ll be the one signing Dad’s paperwork. That’s finding a place, finding the admission requirements, jumping through those hoops, etc.
Unless the OP is retired with no other responsibilities, going to SC for a month to do all that phone work from the same time zone is a) probably impractical and b) utterly unnecessary.
OP, I’m sorry you and Dad are going through this. It’s been awful and it’s gonna be awfuller. But right now, you rushing down there seems about 99% busy-work to placate stepsibs who can’t be placated.
Stepmom’s cognitively slipping a bit too, but nothing diagnosed, and i feels overwhelmed. She’s leaned on her kids for short term advice and help. She never comes to me for help or advice on anything. Whenever something happens that i need to know about, i typically hear it from my step sister
The steps’ father died last week, so at least one of them has said she’s too emotionally spent to do much more here with my dad. For what that’s worth.
No, i ain’t retired, but don’t go into an office. I run my own business.
My wife has suggested just now i fly down tomorrow, offer the steps some respite, do what i can for long term solutions while I’m there, and then fly home on the 23rd.
I’m still not sure this falls on me, but i don’t want to upset the apple cart, and my step mom needs help, so i guess this is the solution…?
You’re not going to like my answer but, I’ll give it anyway, more as advice to others that may be in your situation two years ago.
When you and your stepmom began seeing his cognitive abilities declining and especially after the stroke, you should have been researching memory care facilities in the area and making plans then. Understanding the financial expectations, health care options, etc. I know too many people that are forced into making these types of decisions as the crisis erupts, like you are in now.
My father was diagnosed with alzheimers about 7 years ago. He regularly saw a neurologist tracking his descent. About three years ago, my siblings and I had frank conversations with my mother and each other about researching and finding a memory care facility that she felt comfortable with. It took her a few months to narrow down a facility and she got to know the management and staff, even taking my father by there a few times well before my mother was ready to move him there.
About two years ago, my father was moved to the facility, which took care of him extremely well. He hated it at first, was mad at all of us for leaving him there. Was violent toward the staff, but eventually he got into a rhythm with the staff. Things went up and down…he had cognitive deficiencies…but that is what they deal with there.
He passed away about a year ago. We know that he was well cared for until his last days.
If you have family members that are headed down this path…PLAN! They do not recover. They only get harder to take care of. Dealing with crisis sucks and having a plan usually works out better.
Sounds like she is in diminishing capacity too. Which leaves it to her family.
Until she gives control to someone in her family or is declared incompetent by a court I think all legal decisions regarding her husband need her approval.
As mentioned above, all this should have been sorted a few years ago. A lesson for all of us.
When my Mom’s dementia started getting out of control, my Dad refused to get home care for the same reason it didn’t work out for you. Eventually, he could no longer take care of her 24/7 and I couldn’t be there every day as I work. I found a memory care center, but she declined precipitously after we put her in there because she didn’t know what was happening to her. We had to take her to the hospital, then rehab. At that point she was bed-ridden and we had home aids come in. She passed away only two months later. My Dad finally admitted that he should have let home aids come in even if she threw a fit because taking her out of the home probably shortened her life by several months or even years. If he is bedridden, he won’t be able to fight the aids as much as he did before. Alternatively, look into smaller homes that have good reviews. My aunt also has dementia and she has been doing well in one of those places because a family was taking care of only a few patients. She feels much more comfortable than in a larger facility.
I hate this kind of reasoning, as if being a “blood relative” means that you need to make grave sacrifices for someone who is resistant to guidance, won’t follow the advice of doctors or other responsible persons, and expects that you will do whatever is necessary to keep them in their present circumstances regardless of distance, available time, other commitments, or basic feasibility, and that nobody else who is part of this family (blood or otherwise) has any obligation to help even if they are local.
The o.p.’s father long ago made a decision to move far away so that his wife could be near her children, and was resistant to reasonable solutions that the o.p. (and his wife) went out of their way to arrange reasonable accommodations to keep him living independently. Now there is a sudden crisis because nobody who was on site (the step-mother or step-siblings) took any steps to deal with what was likely a progressive issue which ‘suddenly’ manifested, or to inform the o.p. that things were going downhill. @filmore is correct that, absent of any assigned power of attorney, this is an issue that his father and step-mother have the only say about, and if the response is that the o.p. should make an emergency trip, leaving his own primary family over Christmas just to get stuck between people who won’t make a decision to to accept home health care or assisted living, then it is really just expecting him to make that sacrifice to no gain.
The o.p. notes:
I think that guidance is exactly on point. Until the o.p.’s father gives a power of attorney to the o.p., or the step-mom agrees to bring in help or commit the father to a care facility, the o.p. is really just spinning his wheels trying to keep everyone happy and accomplishing nothing. The o.p.’s wife’s suggestion of “…fly down tomorrow, offer the steps some respite, do what i can for long term solutions while I’m there, and then fly home on the 23rd,” is really more than he should be ‘required’ to do, given how much everybody else involved seems to have neglected the situation or to have even kept the o.p. informed.
“You can have me now to help with the short-term crisis, but then figuring out the long term is on you. Or you can deal with the short-term crisis now, and I’ll be there in a few weeks to help determine the long term plan. You decide.”
That’s the approach I take when family members try to offload responsibilities onto me and run away. I tell them I’ll help but I give them specific terms and make it clear there are limits.
I have been going through this with my mom - she desperately needs to be in a home, but she will not consent and is not far enough gone that any agency will force her.
If you have money, there are businesses called Aging Care Managers that can help you with this. They know the areas well, the best/worst home care places, rehab, memory care, etc and elder care attorneys. They are $$$ though (the only one I found in my mom’s area ran about $2000 a month - she is near North Augusta, so if they are in that part of SC, I can give you the details.) They know how to talk to stubborn parents to make them feel like they are making the decisions instead of being forced by their “ungrateful kids”.
If he gets admitted again, do not let him go home - keep saying he is an “unsafe discharge” over and over and they will have to find a place for him. They will make you feel bad; You will be treated terribly by the hospital social workers but do not relent to their guilt.
I’m sorry you’re going through this, I have no advice, this situation is terrible. My wife is in a situation with her dad where he’s in a memory care unit and we’re local to him, and therefore make 90% of the decisions and do 99% of the work. Her brother lives a 3 hour flight away, and essentially swoops in a few times a year to take his dad to lunch and leave the next day. That completely sucks, what you’re going through is 100 times worse.
I think i may have had a breakthrough with getting a home care aide to come in.
Last summer he lashed out at my stepmom and the aide when we brought one in. Nasty, nasty stuff. But my wife said he was better (slightly) when they referred to the aide as a nurse. He didn’t mind being cared for by a nurse apparently. Regardless, my stepmom just couldn’t take the verbal abuse so they got rid of the aide. But now she really, really needs some help.
So I get there today, and he’s telling me about his knee injury from the army, and how he still gets a big check every month for it. This is something he brings up at least three times an hour, so i know it’s a big deal to him, and i know he’s proud of his service. He knows his time in Vietnam was a pile of flaming shit hair, and he went through some bad stuff over there
So i tell him, "You know, there’s a lot more than that check that you could be getting because of your service in the army. "
“Like what?” he says.
“You could have a nurse come to your home and do things for you. The nurse would help out Ruth [stepmom] too.” He was intrigued.
“And you get this because you fought like hell in Vietnam. This is a benefit you earned, why would you leave it on the table and not have the army pay for your own private nurse?”
He told me to talk to Ruth, so we all talked over dinner (wait, we ate dinner at 2? That’s weird. Damn these early flights!) and he finished by saying “How do we make this happen?” Now for the next three and a half days I’m gonna talk about it nonstop to imprint it into his memory banks. That way when an aide arrives, he won’t be shocked or confused.
Here’s hoping it works. Otherwise he’s probably going to have to go into a memory care facility sooner rather than later. This might buy him another six to 12 months at home.