I am so stressed. Nearly every minute of every day. My parents are impossible. Can’t stay with them, can’t leave them. I feel paralyzed with indecision.
They drive me insane. They are in terrible health yet do absolutely nothing to try to change their situation. Their health conditions keep them completely sedentary, they smoke excessively, have poor hygiene and never leave the house. I have a brother with special needs who lives with them and will need care for the rest of his life, but it’s ironic that he’s essentially the one primarily caring for them at the moment. They only have one set of friends, no church affiliation or any type of social services. My husband and I both work full time and live 60-80 minutes away depending on traffic. My parents never reach out to me unless they need something. They don’t seem to know or care about anything going on in my life. I have always gotten along well with my father but have always had difficulty getting along with my mother, and her health has exacerbated her difficult behavior.
I have a family member who cares for my parents and brother for about 20 hours/week, but he draws the line at personal caregiving, and I’m not sure how much longer my parents will be able to care for themselves. They are both fall risks and my mom can’t really make it to the restroom on her own anymore. They refuse to have anyone else come in to help them, and they won’t consider going to assisted living.
My husband and I want to move to a completely different part of the country. We have wanted to for years, but my parents make me feel trapped. I realize that their caregiving situation is hanging on by a thread, and they make me feel guilty for wanting to leave. But even if we stay, my husband and I have decided that my parents will never live with us because they are so difficult. I know it would be really bad for our marriage. I am also truthfully not a caregiver type, and to even try to for someone that I don't care for or can relate to (mother) would be awful for my mental health. I also cannot afford to quit my job.
I worry about my family nearly every minute of every day, and I feel responsible for all of them even though I’m technically not and don’t want to be (I will be for my brother when my parents pass, which is also extremely stressing me out; I don’t have children by choice and having my brother move in will be just like having a child). My folks could both pass tomorrow or hang on for a couple more years or longer.
I don’t know how to go on about my life. I don’t realistically feel like I could move, but I so resent staying. I don’t know what to do but the stress is taking a toll. I know you can argue that my parents aren’t really asking me for much right now, but I am realistically the only one who can help when their situation gets worse, and it will get worse at any second now. I also feel so horrendously guilty and ashamed for thinking all of this.
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 :)
I will say all of this has made me realize the need for my husband and I to create a will, advance directives, POA’s, etc. While we have no children, I certainly don’t wish to be a burden to any extended family.
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.
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 definitely recognize that my parents’ choices are their own, you are 100% correct. It’s just sad and it sucks and it doesn’t have to be this way. I would like to be more actively involved in their care and I was about 18 months ago, but it made me feel like a complete waste of the little free time and energy I had when they won’t follow doctor orders/recommendations. I got so frustrated I had to retreat. I am currently in therapy for this entire situation and am slowly making progress in learning how to detach. It’s really, really hard.
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.
Please OP, don’t dump all the work on that poor family helper. Help somehow. (I’m certain that’s your intention anyway: to ensure it’s not all dumped on that person).
I understand your parents refuse everything.
But: find some way to help (how ever that help might look like). For example, the two of you pressuring your parents to accept hired help. You two might have already tried to team-up/tried that. In that case, some other solution.
Make life easier (I don’t mean you must do hands-on care) for the poor family member helping out.
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.
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.
I literally just joined this community yesterday thinking it would be a place where I could connect with people who understood these types of situations. Guess I don’t fit the criteria and will show myself out.
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).
🏊
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).
🏊
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.
"Apply that to yourself and your life. Be responsible for you and your needs and quality of life."
yes!!!
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.
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.
Regarding my extended family, yes I could see how that could sound presumptuous! My cousin actually is the one that takes care of my brother and has agreed (with stipulations) to care for my brother when my parents are gone. My aunt is my mom’s sister and my best friend, so she has always been fairly heavily involved as well. I have another cousin who is willing to help with care as well but with even more stipulations than the other, so those will be ongoing conversations and of course any arrangements will be agreed to by all parties and formalized with our lawyer.