Reality check? How to better assist aging parent from a distance.

[Anonymous]

Apologies in advance for the long post...

FIL has had a debilitating chronic medical condition for approx. ten years. He is wheelchair bound and can only move his hands and head/neck. He can feed himself, use a remote and phone. He lives alone and hires a caregiver for a few hours in the morning and evening. Several times a year he’s admitted to hospital then respite care for a few weeks until he’s discharged back home. DH found out recently that he often sleeps in his chair overnight if the caregiver doesn’t show up. He has refused to move into a nursing home or assisted living facility- due to finances and his comfort at home. He has medical insurance and receives about $1500/month from SS which covers caregiver, meals and some bills.

FIL is a twin and has a large number of family members which include my SIL and BIL who live within a 6 mile radius. MIL has remarried but still kindly helps out once per week. His twin sister provides his daily meals. We pay for phone/cable/internet.
I have a medical background and over Christmas I noticed that FIL’s condition was deteriorating. I pointed this out to my DH who agreed and I advised that he have a family meeting to discuss their options with his caseworker/social worker so they have a plan for additional care in the future. I drafted the initial correspondence to his caseworker who provided a list of resources that needed to be followed up on by DH but none of this happened and despite my reminding him he eventually told me to stay out of it.
There is little communication between their family members and FIL is in denial about his situation and thinks that one day he will be back to normal. He was not present in his children’s life growing up so they maintain a cordial but distant relationship. He only recently revealed what his medical condition was to his family.

I recently moved back to the US after living abroad and I am not well versed in the US medical care system especially elder services. Our HHI is approx. $160k. We have a daycare aged child. We live 7 hours away and visit a few times a year.
I have an enormous amount of empathy and try to visit and offer advice when I am asked. I know that FIL is depressed and frustrated. Recently, he was admitted to the hospital for a week, had a procedure that he has not shared details about but now is significantly weaker and can no longer feed himself. The hospital now wants to discharge him home since he has some care. He has not been accepted into Medicare programs bc of finances. He now needs overnight care at home and DH told me yesterday that he wants us to start paying for it.

I am trying not to be selfish however, we are renting in NOVA which is costly, have a son in daycare, and our emergency fund will only float us through 3 months if anything happened. We are stretched thin and I do not know where this money would come from. I am annoyed with DH bc it was so obvious that this would happen and now there is no plan. His family is barely responding with messages even though they are local and are certainly not offering financial help. He now wants me to get involved again but I am not sure how when I barely know any details. IMO, there is no end date to paying for additional care. I am happy to help out where we can IF there is an actual plan. I said this to DH and his reaction is basically that if we don’t pay that his father will die. We should take the money from DS savings account. I am not sure what to do next besides speaking to his caseworker and contacting eldercare services for more advice. Any suggestions?

[Anonymous]

There are geriatric social workers who are experienced in mediating this kind of family conversation.

There are elder care managers who you can pay to accompany people to medical appointments and when they need to be admitted to the hospital--we hired a company like this when my grandmother, who was in similar physical condition to your FIL--refused to move closer to her kids. It was not feasible for any kids or grandkids to move hundreds of miles to where she was, though someone visited every couple months.

You may also want to consult with an elder law attorney to understand the difference between Medicare (insurance available to everyone who paid enough in during their working lives) and Medicaid (need-based, with income and asset limits) and determine if your FIL's finances are structured in the best way to get the care he needs. Since Medicaid varies a lot among states, I'd pick a lawyer from this list in the state where he lives. https://www.naela.org/findlawyer

[Anonymous]

If it's not too late, do not allow the hospital to release him to home. He cannot care for himself and doesn't have reliable care (because sometimes they don't show up). They will find a bed for him in a rehab hospital. He will spend down his $$ until he qualifies for medicare.

Hard for DH to hear, but get a geriatric social worker to help deliver the message, as he has emotions tied in that you do not. Do not risk your current life/your child future for your FILs end of life. There is a saying, 90% of healthcare costs are in the last 10% of life. It's true.

This is why you save for retirement: your kids can borrow for college (hopefully not too much), but you cannot borrow for retirement.

[Anonymous]

Does he own his own house? Does he have any other assets? I would not let hospital discharge him home. I would fight for him to go to rehab then fight for him to go to nursing home. He can't live alone. If he can't afford it medi-fair will pay then go after his assets if he has any.

[Anonymous]

Anonymous wrote:Does he own his own house? Does he have any other assets? I would not let hospital discharge him home. I would fight for him to go to rehab then fight for him to go to nursing home. He can't live alone. If he can't afford it medi-fair will pay then go after his assets if he has any.

Sorry Not medi-fair - medi-care. And to add we had to basically refuse to take FIL home. Hospital threatened to put him out on street and said he would go to homeless shelter. We held firm and of course they found medi-care bed in nursing home.

[Anonymous]

Anonymous[b wrote:]If it's not too late, do not allow the hospital to release him to home. He cannot care for himself and doesn't have reliable care (because sometimes they don't show up). They will find a bed for him in a rehab hospital. [/b] He will spend down his $$ until he qualifies for medicare.

Hard for DH to hear, but get a geriatric social worker to help deliver the message, as he has emotions tied in that you do not. Do not risk your current life/your child future for your FILs end of life. There is a saying, 90% of healthcare costs are in the last 10% of life. It's true.

This is why you save for retirement: your kids can borrow for college (hopefully not too much), but you cannot borrow for retirement.

Yep. All this. FIL needs to go to a rehab facility then a nursing home with whatever resources he has and the support (not financial, but the showing up type support) of those local to him.

It sounds like FIL is not in good shape at all--and if FIL is willing to be so stubborn that he dies sooner than he might otherwise (and it sounds like he's already declining), it's no one's fault but FIL's.

DH is directing his emotions at you and not thinking clearly.

[Anonymous]

Anonymous wrote:Does he own his own house? Does he have any other assets? I would not let hospital discharge him home. I would fight for him to go to rehab then fight for him to go to nursing home. He can't live alone. If he can't afford it medi-fair will pay then go after his assets if he has any.

Yes he does own his home. He doesn’t have a local advocate despite having a large family nearby so it’s hard to fight from a distance. I am working with his social worker by phone and email

[Anonymous]

If he wants to stay in his house, he should do a reverse mortgage and take out equity. I absolutely wouldn't pay anything for FIL while he still has money and owns his own house. You owe your money to your child now, not to your FIL.

Is there no way to sit the relatives down and convince FIL to sell the house and go to a nursing home?

[Anonymous]

Medicare doesn't pay for nursing home care other than for rehab purposes and there are a fair amount of rules regarding this. The hospital social worker or discharge planner should be able to explain.

Medicaid will cover nursing home care but he will need also no assets varies by state. Home would usually need to be sold.

A Medicaid wavier program might be an option it's a program that helps people pay for in-home care givers so they can remain in their home versus a nursing home, also has income restrictions, can have a long waiting list, and not likely to cover overnight care.

[Anonymous]

I agree with 15:42 and 14:15. Tell your DH that the priority is your child and your own finances. The FIL should sell his home, get a reverse mortgage, or tell FIL that he will go to a homeless shelter.

Stories like this make me even more certain that I want assisted suicide before it gets this far.

[Anonymous]

Anonymous wrote:

Anonymous[b wrote:]If it's not too late, do not allow the hospital to release him to home. He cannot care for himself and doesn't have reliable care (because sometimes they don't show up). They will find a bed for him in a rehab hospital. [/b] He will spend down his $$ until he qualifies for medicare.

Hard for DH to hear, but get a geriatric social worker to help deliver the message, as he has emotions tied in that you do not. Do not risk your current life/your child future for your FILs end of life. There is a saying, 90% of healthcare costs are in the last 10% of life. It's true.

This is why you save for retirement: your kids can borrow for college (hopefully not too much), but you cannot borrow for retirement.

Yep. All this. FIL needs to go to a rehab facility then a nursing home with whatever resources he has and the support (not financial, but the showing up type support) of those local to him.

It sounds like FIL is not in good shape at all--and if FIL is willing to be so stubborn that he dies sooner than he might otherwise (and it sounds like he's already declining), it's no one's fault but FIL's.

DH is directing his emotions at you and not thinking clearly.

Op here- thank you all for the advice and for echoing my thoughts. I am trying hard not to appear uncaring but DH impulsiveness has me on high alert. It’s truly hard for me to comprehend how we get here when it was clear that this was inevitable.

[Anonymous]

The problem with your husband’s plan is it is temporary. You don’t have the resources to pay for your fil’s care in an ongoing basis. So when your savings runs out, then what’s the plan? Some options:

- fil signs a doc confirming your funds to him are a loan to be paid out of his estate - siblings are made aware of this now. Everyone will be told this is temporary.

- fil takes out a home equity loan or does a reverse mortgage and spends all his assets down and then goes into a state facility. He won’t look great and treatment won’t be fancy but he will be cares for. In the meantime he has full time aides at home.

- refuse to have him discharged as others have said.

- he moves in with a child