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My adult kids came into town to "help" when their dad was in hospital with pneumonia. He has dementia so our lives are complicated. He also has an ostomy that I have taken care of for ten years. They had all kinds of ideas, ideas that cost money, hire an aide, do this do that. One even said she would pay for an aide one day a week. Well what about the other 6 days. Finally one son said he would move back home to help out. He is unmarried and retired. I said great! So I sent a note to the others saying we solved the problem. I won't go broke and lose my home and your brother is helping out. I also said he refused to take money so I was going to put some money aside when we pass away...Well, one son never even replied to the email. He feels even though he is out of town he comes every 2 months for 4 or 5 days and he feels that I don't appreciate him. I told him beofre, I appreciate what he does, but he isn't here day to day. So now he has not spoken to be since I wrote the note. And frankly I don't care anymore. I am drowning here with responsibilities. He should be pleased his brother stepped up instead of feeling slighted. How do I handle this new problem, because I am so done with this?

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I can empathize with both your kids and you.

You're burnt out and need help..but on your terms. The kids have their own lives and although I am sure they love their dad, in truth, they are busy living their own lives and a blow by blow of a day with dad and all the stress involved in that--well, I found my kids just....couldn't.

They are great for a crisis, but when the crisis passes, they are back to their lives.

And I know they love me and their dad. I don't plan to 'leave a huge inheritance' to my kids, they are ALL far wealthier than we were/are. I'll hire help or whatever it takes. I would accept a day of help, that's actually a huge gesture. You sounded kind of bitter about the offer. And I personally would LOVE my son to come every other month for a few days.

A couple of my kids are also 'order givers' and I kind of let them have their say, and then I go about doing what I have to do. Their dad has put me through the wringer, over the last 15 years. Currently he is as healthy as he can be--and can work FT, although he is very fatigued all the time.

I know how hard it is to see a LO in poor health, and you think you have the answer, and then your heartfelt directions are ignored..you tend to pull back.
You sound very burned out--my heart goes out to you. I know i will be 'there' sooner than I'd like and I'e already got 5 years of FT caregiving behind with various things.

BTW, some people solve all their problems by throwing money at them. That's OK too. My sis won't do 'hands on' for my mother but she'd write her a check for $20K without batting an eye.

Take what hep is offered and get out of the house sometimes--and thank goodness for the son who is about to have a shocking change of life!
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You don't. Let your 'slighted' son put his big boy pants on, apologize to you for his behavior and move forward from there. It's not your fault if your son refuses to listen. He'll come around eventually.
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Joycee, you sound beyond burnt out. Have one of your kids help make a list of possible resources. Medicaid needs to be at the top of the list.
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I appreciate the input. My husband has een sick for 15 years with various things, heart attacks, cancer and this. I have a home, yes. That is it. We lost most of our money in the real estate crash in 2008. I dont have much in bank. Burned out, you could say that. I have to sleep when he does because he is up at night sometimes. I have done it all alone all these years because they never lived nearby. I am old too. I am well aware they dont want anything in the house. I have no problem with that. But when they come they order me around. Or tell me what to say and do regarding their dad. I am the one who is here and knows hi. They see him a few days a year. I do know they want to help. I am going to get the help one day a week. It is just hard to take care of him its a full time job. I am going to look into other avenues as well. Eldercare is one. I cant really tell them anything anymore. My daughter said she would pay for the aide to stop me from telling them how their father is doing. They dont want to hear it. So I told her dont ask and I wont tell. I have to get a handle on this because it could go on for years. Right now, one moving home gives me breathing space. I am not looking long term at this point. I have to stop thinking about it, sometimes I just burst out crying for no reason. I appreciate all advice. I take it all to heart. You have walked in my shoes and have valuable things to share. Thanks...
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Kittybee Mar 2019
{{{Hugs}}}
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Is the OP still with us?
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I would take the one day a week home care. Do not turn down help like that. You and the son who is going to be carer will need that break. Go back to sister, say weren't thinking straight and accept the help. I'm suprised sister didn't get upset when you turned that down. Good for her with the maturity and self control. The other son is going to feel what he feels. It doesn't have to make sense to you or anyone else. Maybe write him a note expressing again that you appreciate what he does. Be specific in naming what he has contributed. I know you are overwhelmed and don't think you need to do any hand holding for an adult, but if you want to keep the relationship, this is it. By the way that 4-5 days every 2 months he gives will allow you and other son to get away and have some time to yourself. This is of value, tell him so. This is very typical family stuff. Take a deep breath, be grateful none of them is totally leaving you to fend for yourself.
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Wow! You actually turned down an aide for 1 day a week, simply because there are 6 other days you wouldn’t have one? Isn’t one day off a week better than none? Your son coming for 4-5 days every two months is also a very nice gesture.

I know this sounds harsh and I don’t intend it t be, but really, it sounds like they genuinely care & are trying to help, but it isn’t their responsibility to give up their lives to care for their Dad. You don’t want to go broke? Does that mean you have savings you don’t want to use? My mom just spent her life savings keeping herself out of a nursing home as long as possible. Definitely not how she saw herself using her money, but it’s what life threw at her.
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NeedHelpWithMom Mar 2019
Yep, take the help that you can get!
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Rather than set money aside for your son when you pass pay him now.
Get an agreement in place..yeah like an actual business contract and pay him.
He can choose to do with the money what he wants but if he is getting paid for what he is doing that is no different than the aid that one wanted you to hire. This way anything left when you die will be passed evenly between your children if that is how you want it to be done.
As I have said before in posts...
Your kids do not want the house.
Your kids do not want "Aunt Betty's dresser.
Your kids do not want the "Precious Moments" tchotchkes that you have collected.
Your kids really don't "need" your money....
What your kids want is for you to spend the money you have saved for your own care because they don't want to have to give up their lives to care for you.
Your option might be to sell your house and move into an Assisted Living facility where you can get help with your husband and you can remain and live without having to depend on your kids to help out with all sorts of stuff around the house.
Another option would be to sell the house to your son and you remain there. The arrangement might be that you pay him to care for you and your husband as well as the house but the money that you pay him is used toward the purchase of the house. (Is that convoluted or does that make sense?)
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Toadhall Mar 2019
I was so glad to see someone who realizes that their kids do not want their "Precious Moments" tchotchkes and other "worth a lot of money" stuff. Well done!
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I am confused as to what you actually want. I read your previous posts; you mention several times what a high-powered job your H had disbarring lawyers in NYS. Was that a state job? Does he have a good pension from that?

In another post you say you (only) have a tiny bit of money put away.

And in another post, you say you didn't get more than 2 hours of sleep a night. Is that still the case?

WHAT is it exactly that you want your children to do? Is money the problem here, or not? Do you think that you should not have to hire help (you also said you'd like help with housecleaning; have you hired a cleaner yet?). I am curious as to what kind of pay you offered your retired son who offered to move in.

Could Medicaid be the answer to your issues?
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mmcmahon12000 Mar 2019
She said she wants her kids to stop telling her what to do, stop ignoring her when she tries answering their questions on how hubby is doing and start respecting what she does overall for her husband. That's it.
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Joycee , you might have caregiver burnout.
Hoping that sharing on the forum will help.

Are you okay Joycee?
Worrying so much extra about how your other son feels will only add to your stress. I understand the "I am so done with this".
We just cannot be in charge or control what others think and feel.

I am not sure this applies to you, but sometimes, we can be our own worst enemies. Sharing details of how you will give money to one son, and not the rest sent in a note to all......that is what I meant by too much information. TMI.

You say that you don't care anymore. However, what I see in your words is that you care too much what others think. I have compassion for that, and hope you can see how you may have caused the family to be upset., imo.

Are you still there?
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Take your daughter's offer to help, one day is better than nothing.

And consider their advice - you say it "cost money" - but you do not say if you have the money to pay for help and choose not to do so - or if you you have the money and do not want to use it - that makes a big difference in the advice you will get here.

If you do not have the money to hire help than apply for Medicaid and look for alternative living situations for your husband. You do not "lose your house" when you apply for Medicaid if a community spouse (you) is living there. Your son living with you is most likely not going to be a good long term solution - is he a professional caregiver? Will he have the temperament to deal with a father that has dementia and other heavy care needs on a day-to-day basis? How will his father accept being told what to do by his son? When does he get time off? Consider the actual cost of him living there - not just rent but food, adding him to car insurance, etc...I would have him come stay with his father for at least 2 weeks without you there and see all that is involved before a firm decision is made.

If you can afford it and just do not want to spend the money- what are you saving it for? Can it be your children are trying to tell you that they see you are getting burned out, are worried about you and that they do not want to lose you to health problems brought on by the stress of the care?

What is it exactly you are wanting your kids to do? Your daughter has said she would pay for a day, your other son comes and stays 4-5 days every 60 days (which means you could, if you wanted to, leave and go stay with a friend and relax during that time). Are you wanting them to take your husband to their homes and care for him full time? Quit their jobs and move to your town and find new ones and live in your house and take care of their dad at night after working all day? For your daughter to pay for 7 day a week care? Maybe if you are more clear with them in what your are expecting they will be able to help you find a solution. But first - pick up the phone and talk to them - don't just send emails.
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In hindsight, right. As I have been told, you go from here. Really, have no idea how you can handle this.
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Have you ever heard of. TMI ?
Too much information.

Edit: Just to be clear, I was still talking to the OP.
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I would not refuse your daughter's offer to pay for help once a week. It is unrealistic to believe that any one person can be a caregiver 24/7. Read up about those who try to be 24/7 caregivers on this forum and, soon you will realize, that it's not a pretty picture.

Take something as simple as getting enough sleep. Although the human body can function for a few days on little sleep, chronic sleep deprivation leads to chronic disease as well as impaired judgment and slowed reflexes. People who are sleep deprived are at increased risk for having all sorts of accidents.

Before you go through with this, have your son join this forum and read up on the reality of being a caregiver.
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Stop sharing any details with all of them. I am serious, this will drive you crazy.
You will get a gazillion "do it their way" ideas, none of which will really work, except to bring criticisms down on your head.

Work it out on your own. Do take the daughter's offer of an aide once a week, so helping brother can have a day off. Do not report this to the others.

Another suggestion. Be aware just how much this will cost you having "free help"
from a family member....his food, car expenses, free rent, out to dinner, movie, (oh Sheesh, how can we have him pay his own way after all he does for us).???
You need a plan...fee rent in exchange for? What?
Get it in writing. Place a financial value on the rent, on the food vs. his actual caregiving duties/hours (based upon what you would pay anyone else).

Remember, you and your hubs are not "daddy warbucks".

No more notes, I am serious! Share less = less stress.

Once help has arrived, you may be less overwhelmed and more able to do much of what has got you worried now. Because you are looking at t h e whole picture, all at once, what an overwhelming mess!

Remember though, anyone helping out does want to do things their way. That does not mean they are there to tell you what to do, AND you do not need to do anything for yourself their way. Keep your boundaries up. Even with family.
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Joycee, I have no good answer for you.

Rather a question...why haven't you applied for Medicaid?
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If the aggrieved son never replied to your email, how do you know he got it? And isn't it a bit of leap from that to assuming that his silence is about his feeling unappreciated and slighted; and another leap to assume that he isn't pleased that his father and you are getting more input? When did you send the email?

I should give him a ring, if only to clear the air. How can it hurt?
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