At my wits' end, yet I know it’s really not that bad yet. How long should I put life on hold waiting for their further decline?

Move now, before it gets worse. Don't wait and don't sacrifice your life and your marriage for them.

I am so glad that you are thinking of your brother now. Getting help does not happen overnight, its months and a lot of paperwork.

Just to clarify, you are not an Executor of his Trust you are a Trustee. If your brother receives any help from Medicaid, that Trust reverts to Medicaid upon his death. They can recover any money they put out on him. Anything left goes to the person listed as beneficiary. There are things you can do and things you can't do. Two main things are you can't use the Trust for is food or lodging. So read that Trust carefully because as a trustee you are responsible for how the money is spent. I keep very good records. I get a statement a month as Trustee. If I have written a check for anything, I attach the receipt to the statement the check is on. Medicaid requires 12 months of copies of the Trust statement when nephews yearly renewal is done.

"I called an extended family meeting with my aunt/uncle/cousins who live closest to my parents to find out what level of involvement they wish to have with my parents’ final days as well as my brother’s lifetime care." I find this a little presumptuous. You must have a close knit family. I so hope you don't get upset when they can't help in your parents care. Your parents siblings nor your cousins should be expected to do any care for your parents. From what you described, I would not want to even enter their house. Your parents siblings are one thing but asking your cousins what they are willing to do when its your parents? Your cousins have their own parents, their own lives. But, I guess it doesn't hurt to ask. I am not saying that you need to do the caring. I understand you are hitting ur head against a brick wall and need to wait for an emergency to happen. There is only so much we can do as children just don't expect other family members to help out.

I do feel for you. I have a nephew with disabilities I oversee. He has his own apt. Like ur parents his hygiene is awful and he is a slob. He hasn't listen to me the in the 12 years he has lived here when it came to showering daily and keeping his area cleaned up. (He lived with my Mom till her death) I refused to go in his apt once we set it up. In a recent hospital stay we did go in and clean up. Hopefully he will let his aide help him keep it this way. I have had to harden myself to the fact that I cannot change him. He gets upset when I try to do something he does not want me to. And that is his right because he is considered a competent adult who can make informed decisions. You can send in APS but they will tell you that Mom and Dad can live anyway they want to. Its your brother they may question. It can be a good thing to have APS involved because they can help find resources, it can be a bad thing too.

Been there, done that. Don't feel guilty. You are not responsible for your parents, even though the world makes you feel like you are.

Sounds like they need home health care. If they could afford it, you could arrange it and make your life easier. They'll probably drive those people off, so work with an agency that is willing to send out multiple care givers. Even if they don't want it, if you arrange it, you've tried, and that's it.

YOU only have one life to live. Live it. They've already lived theirs. They may not be able to make good decisions any more, but that's not your fault or responsibility. Each person has to decide how much of their life they want to give trying to sustain a life that's already been lived.

I would NOT feel guilty. I would not put my life on hold. (I can say that because I have and I regret every minute I have.) I would do as much from afar as I could, like arranging care or letting them know about other options like care cottages, adult day care, etc.

But move on. They have and they don't care, so why should you.

wits - caregiving can happen at a distance. I was my mother's POA financial and medical and executrix - at a distance. She was very difficult to get along with. I made visits to attend meetings with drs etc, and also was in phone contact with staff in her facilities. Before she went into facilities I visited her and stayed on a hotels.

You are dealing with at least 3 problems here - your parents are a train wreck waiting to happen, your brother has help now but needs a plan for his future care, and you are experiencing much anxiety/stress due to your parents lack of self care and planning and your own sense of responsibility towards your family.

Your life matters too. Your husband's life matters too - every bit as much as your parents and your bro. Your marriage matters!

You can't change other people, but you can change yourself.

I am glad you are in therapy. I hope it is helping.

I know it isn't easy when you have grown up as "the responsible one" - meaning responsible for others. Apply that to yourself and your life. Be responsible for you and your needs and quality of life. Focus on you, your hub, your marriage first. Then decide what you can and can't do for your parents and bro. You are not the caregiver type. That's OK. Then don't even consider taking any of them into your home. By all means look for other arrangements. In some cases the train wreck has to happen before seniors agree to changes. So be it. That is their choice.

For me, and I think others here, the time between realizing that the current situation wasn't working and something new actually having been put in place for my parent was a very difficult one. Lots of anxiety and stress. I really get that. It's especially important at this time to take care of you.

Personally I would move - that's being responsible to you and hub. At the the same time keep in contact with your dad's dr, keep doing research for services for your parents and bro. so when the time comes for change you are ready. That's being a responsible daughter and sister. ((((((((hugs)))))) to you at this most difficult time.

Move.
I agree with CM.
"The sooner this house of cards falls down, the better for everyone involved".

Once it does, work with a Social worker to point them all towards the level of care they need. Be that AL, NH or assisted group home living. (Note your home is not on that list).

I also live with this 'house of cards' in my clan. I too felt so much pressure. I sought therapy which helped a lot. I wanted to stop feeling pulled under by worries - to float. Once I learned to float - I asked myself why wasn't I swimming where I wanted to go?

I am still learning to swim to be honest, but have goals in sight now (not daily dread).

🏊

Move.
I agree with CM.
"The sooner this house of cards falls down, the better for everyone involved".

Once it does, work with a Social worker to point them all towards the level of care they need. Be that AL, NH or assisted group home living. (Note your home is not on that list).

I also live with this 'house of cards' in my clan. I too felt so much pressure. I sought therapy which helped a lot. I wanted to stop feeling pulled under by worries - to float. Once I learned to float - I asked myself why wasn't I swimming where I wanted to go?

I am still learning to swim to be honest, but have goals in sight now (not daily dread).

🏊

Let me understand this. You are not actively involved in any aspect of actual caregiving. You don't see your parents on a regular basis. You take advantage of a nearby relative to do care for the parents. So in theory what difference would it make if you stay where you are or live across the world since your level of involvement remains the same. Coordinate hiring a caregiver from wherever you are located.

After reading your post, I really want you and your H to move to the part of the country that you've wanted to for years. This is YOUR life, after all!

Like others have already posted, I am concerned about your brother's future, also. You do NOT have to move him in with you. If you know that moving your parents in with you would cause too much stress, how do you know that moving your brother in with you would do likewise?

Please heed the advice already posted.

‘Personal care’ usually means continence care, at which your family member draws the line. I don’t think that AL is likely to be an option if this is required. It’s also normally private pay.

OP, you say “I am realistically the only one who can help when their situation gets worse, and it will get worse at any second now”. That’s not truly the case. There are many elders who have no family members at all, and when everything collapses the state takes over and finds them appropriate care (not luxurious, but adequate). The same is true for your brother, and it is indeed “ironic that he’s essentially the one primarily caring for them at the moment”. Perhaps he’ll rise to other challenges as well.

There is absolutely no point in your being “stressed every minute of the day”, while finding that you can do virtually nothing to help or to change. Stop it, and live your own life. CM is right, whether or not the ‘other family member’ is likely to organise things when things get worse.

Move. You're not doing anything anyway, surely it would be best to be right away from the whole situation?

Sorry if that sounds harsh. I don't mean it's your fault that you're not doing anything. How can you when you're over an hour away and you work full-time and your parents won't let you and you don't have any aptitude for caregiving?

Besides, the other family member is much better placed to liaise with services and organize increasing levels of care. If you're hovering around in the background looking guilty all kinds of assumptions could get made and it will just complicate matters. Take yourself out of the picture altogether.

Why should you feel 'so horrendously guilty & ashamed' for thinking the way you do? Do you think your parents are feeling horrendously guilty & ashamed for living the way they do, refusing in home care and AL and making YOU feel the way you are feeling, and guilty for even considering your own lives by moving away? No, I'm sure they do not!

Your parents are entitled to live life on their terms, which includes smoking and being sedentary and refusing to move into AL and/or get other caregivers to help them out besides your family member who comes in for 20 hours a week. And you, on the other hand, are also entitled to live life on your terms, which includes moving away if that's what you would like to do.

What your parents need to understand is that if/when they fall or get hurt and go to the hospital for care, it's unlikely the hospital or rehab will release them back home to live alone without full time care OR go into Assisted Living. That's when the choice is taken away from them and they're forced into managed care. What happens to your special needs brother, then, is that either you take him in or you figure out (like JoAnn said) what other options exist for his care, like a group home or something similar. Whether you live 80 minutes away or 800 miles away won't really matter, you will get The Call and decide whether or not to come back to care for situation that's occurred. I wouldn't leave my parent's care to the State, not in a million years, but I wouldn't take them in my home to live with me either. So that's where you need a plan. Their house can be sold to finance their care in Assisted Living (once that choice becomes their ONLY option next to 24/7 in home caregivers which is more expensive than AL), and you can help them arrange that sale. Then help get them set up in AL, too.

But try to live your life in the meantime w/o ruining it worrying about the 'what if's' and waiting for the other shoe to drop. I know it's hard, but you have to accept the fact that your parents have chosen THIS lifestyle for themselves and it's not your job to 'fix' it or to change it. Only THEY can facilitate a change, and it may have to be forced upon them at some point. That's when you can swoop in and help them move. Until then, however, your hands are tied.

You can call APS for a wellness check on them, to make sure they're all safe and not living in a rat infested hellhole, but that's about all you can do. APS doesn't tend to do much if the elders are mentally competent, they feel it's THEIR choice to live as they see fit unless there's something outrageously wrong. As long as your brother is being cared for, that is to say.

You should look into resources NOW for your brother so you're not floundering around if your parents were to pass away suddenly, trying to figure out what to do with him. Yes, you can have him live with you, but that may not be the ideal situation since you are not a caregiver by nature (neither am I). If you decide you don't want to take on that responsibility, NOW is the time to find alternative possibilities for him. You can always be his advocate for life, as well as visit him frequently and take him out for dinner, spend holidays together, etc. There are many ways to be a caregiver to a loved one w/o having them live inside of your home.

Wishing you the best of luck with all you have on your plate.

I let others remark about your parents. Actually with people like this you just call APS for a Well Check and then let the State take over their care.

Its your brother I worry about. If he can take care of them then his challenges are not extreme? You do not need to move brother in with you. There are resources out there. You have to look for them.

I oversee a nephew with physical challenges and a neurological defect. He came to live with Mom in 2008 to go to a Community college which he flunked out of because he was not willing to do the work. He almost lost his deceased mother's pension but I was able to get it reinstated because of his disabilities. I then signed him up to work for the ARC, a workshop for people with special needs. This gave him some xtra money in his pocket and socialization. They have parties and Dance nights. He was bussed back and forth. A Special Needs Trust was set up for money he received in his Mom life insurance. This now gave him the ability to apply for Social Security Disability which he received and with it Medicare and Medicaid. He gets a reduced rate in the busline. He could use the Senior bussing because of his disability. He now gets a voucher from the State to help offset the cost of his apt and has a coordinator who helps him with any problems he has and he gets an aide once a week to help him clean his apt, shopping, take him to appts or just to the park for a walk.

His County should have an office of disabilities. They should be able to guide you. Please don't wait. Get what you can get set up for him now then when ur parents are gone or placed in care you know what is out there for your brother. There are group homes if he needs supervision.

hi OP!! :)

hug!! :)

it’s really hard.
mannny of us are in your situation.

you’re very stressed.

justifiably.

i think it’s quite unfair of your parents not to have planned better:
the consequence is, that you, a kind, empathetic daughter, are totally stressed out.

example:
your parents refuse in-home care.
——

1 of my friends succeeded at finally convincing her mother to accept in-home care by saying:

“mother, don’t you want me to sleep at night? i’m totally stressed out, worrying about you. and the next day i must work. i’m exhausted.”

——

in another friend’s case, an emergency happened.

then it became absolutely necessary to have in-home caregivers. (broken hip).

——

i personally prefer not to get APS involved. where i live, they have a bad reputation of making matters worse.

you might wonder, how can APS make it any worse? they can.

for sure, in some places, APS does good work.

——

the best i think, is if you can find a way for your parents to accept hired caregivers, BEFORE a huge emergency.

or say to your parents, “this is my friend, who can help out. how kind, right?”
(actually it’s a hired caregiver)

——

do live your life.
to the maximum! more than maximum!

:)

i wish you well!

bundle of joy :)