I have asked my family for compensation and they say it is fraud. Any advice?

everyone speaks of care giving yet do all non caregivers know exactly what is entitled. What about the house, the car, the yard, the pet. When you care for another human being you take on the care of everything that goes with them. If it is a parent and your in their home, a home that once the parent passes will be inherited by you and your siblings a home that needs to be taken care of in order to have something left to inherit. This also includes the yard or any type of landscaping that needs upkeep. Who does this or pays to have it done. People forget to break things down. When you feed someone you have to start at shopping for the food, putting away the grocery's,preparing the meal, serving the meal, cleaning up after the meal, these are all time and energy consuming. Putting someone to bed again, washing up,changing clothes , giving meds, making the bed...don't even get me started on breaking down laundry. I can see why most company's charge extra for pets...again break it down.
just a thought

Saw the assisted living today. It is a beautiful place and it should be it cost $5000/month (I am not kidding) and the memory unit is $6000/month. Shocking and a bit disgusting since so many of our elderly would never have that type of money. Luckily when we sell the house my Mom will be taken care of for about 5 years. After that my sibs have stated that they will continue to pay the assisted living fees. Works for me if they keep their part of the deal. I do not have the resources that they have. I am scared because for 3 years now I have taken care of my Mother but I am also really excited. Tonight when I got back after touring the assisted living facility she had all the lights out and was lying on the couch waiting for me. She used to do that to my Dad if she felt he had been out too long. So money will be tight but that is nothing unusual for me. The interesting part will be when we actually move her - I am sure there will be a lot more drama. If I did not feel in my heart that this was a better place for her and me also I would not let this happen. The last 3 years have been very special and very challenging and I am looking forward to the change. I know many people who are caregivers are not in the situation to be able to find an assisted living and my heart aches for you. Like so much in this country if you have money you are treated well otherwise forget you - horrible.

Hadenough, hope the AL visit is a success, and then… happy house hunting!

Just one thing: once your mother is safely accommodated, don't do that thing my (lovely) cousin does of virtually co-opting herself onto the ALF staff! She's nearly as stressed now as she was when my (also lovely) aunt was still living at home; and that's because she hasn't be able to step back and let the nursing home do its job. Mind you relax and let go, and all will be well. Good luck!

I'd say talk to an attorney. I have to. There are attorney's that work with elderly, you can ask your local Senior Services organizations.

Thank you worriedaboutday! We all know on this site how much easier it is to talk to each other than our siblings. Touring the assisted living and will keep you all informed.

Hadenough, I just love you. You have done SO much, have gone through the day to day of SO MUCH that your siblings will never, NEVER understand, and as soon as you want something remotely fair they balk and come out of the woodwork and move your mother to make sure you do not receive what they may see as a skewed portion of the estate.
I wonder what their lives are like. How their spouses have not been affected, how their children, if any, were never affected, but how your entire life was upended by caring for another adult 24/7.
I am so sorry for you, and applaud you and all you did.

Dear hadenough, I'm happy that you're getting some independence back, as is your mom. Don't worry,, there is plenty of caregiving that you and hopefully your sibs will be involved in. I hope that you are able to meet on more equal ground because of this move.

Countrymouse thank you for your kind and understanding words. They really spoke to me. In a way I think now that my rocking the boat was a way of getting out. Well I guess it worked -haha. Anyways tomorrow I am going to see the assisted living my sibs picked out. It sounds very nice and I hope my Mom adjusts well. I am now looking for a place to live - scary and exciting at the same time. Scary because of $$$, exciting because of independence. I really hope that with this change the relationship between me and my sibs will improve. They will no longer feel guilty and I cannot resent them for not providing me with more respite. Another plus is when I see my Mom the we can just visit without me feeling irritable because I have heard the same old stuff for so long. All of these will be positive changes I believe for both of us. Sooooo I will still be checking in just not as a full time caregiver. Boy have I done a lot of bitching on this site the last 3 years - do not know what I would have done without it. Oh now I feel sad, you have all helped so much.

Hadenough, glad that things are changing so that at least you can move forward. Ismiami, disabled people receiving SSDI are actually encouraged to work if they can. That's why the law allows them to earn a certain amount without affecting their benefits. Trying to work to support themselves either financially or emotionally is positive, not fraudulent. The rules are complex but too many people who have a little knowledge can give well intentioned but incorrect advice. I don't think that inheriting property would have any effect on the SSDI. If I kick off and my SSDI recipient husband should inherit something from me, or receive the proceeds from life insurance,I don't think that would matter at all. SSDI is NOT financially need based as is SSI. There's no system in place to report an inheritance or life insurance proceeds because they don't count. SSI recipients do have a renewal process to go through to determine their financial situation and determine the ongoing amounts of their checks.

Hadenough, I expect you must feel sad that your siblings have decided they would rather 'warehouse' your mother than have her fund you, or perhaps allow you to 'inherit' a larger portion of her estate, if any, than they might. I can see how it looks, from where everyone is at the moment.

But honestly? I'm trusting that the ALF they've found for her is a good one; and that being so this could be a good move for everyone concerned. Your mother will be safe and cared for. Your siblings may begin to involve themselves more in her life, which will be nice for her. You will still be able to visit her as often as you can and choose to. And you will be relieved of a serious burden, really too much for any one person on her own, especially someone in poor health. I really hope it works out well for everyone.

The social security/disability/income allowances issue is such a mess, isn't it? We all know that 24/7 caregiving isn't a job for one person, it's a job for a team of three, ideally with back-up! But/so somehow it works out, in our twisted reality, that it's fine for you to cover your mother's needs unpaid, because that doesn't disprove your inability to work outside the home; but the second anyone suggests compensating you financially for what you do in the home that proves that you *could* technically do that job somewhere else so, hey, why don't you? And get paid the market rate? There's such a mismatch between what a job demands, and what it's assessed to be worth in cash terms, and in what circumstances people are entitled to support from the state, and what they should be supported with. It all gets so Kafkaesque.

A similar kind of trap put me off applying for a job just today, or played a part anyway - terrible timing was the main issue, because my ex-partner is going into hospital tomorrow and will be laid up for about six weeks; but also in terms of household income it made no sense. I would have doubled my personal weekly income, nearly, but it would have cost my mother much more than the job paid to pay someone else to cover the time I'd have been away from home. Add travel expenses, tax deductions etc and it would have cost us as a family around $30 a week for me to be out of the house for 20 hours. Add in all the things that paid caregivers don't do, that I'd then have to fit in to my 'spare time'… It made no sense even to try. What makes me smile, wryly, is that my sister would have the same view as your siblings and would have gone for that plan: she's cool with paying other people to take care of our mother, and she thinks I should be supporting myself. But pay me for caregiving? Oh no. I'm here for love, not money.

Which I am. But I still think the whole value system is a right muddle.

Big hugs to you. I feel excited that you're getting your life back! - I hope it goes really well from here.

OK first I am on social security - the kind you get when you turn 65. I was able to get mine early because I had a bad accident that has left me disabled. I called an attorney, you can make a little more than $1000/month and it does not affect your social security. No matter however as the sibs have decided to move Mom into an assisted living. My asking for some compensation and respite put them over the edge so they are going to warehouse her. Very sad but I will soon have my life back. All of you caregivers have been so wonderful and the last 3 years would have been really miserable without all your support and words of wisdom. I will now just visit my Mom at the assisted living so will no longer be the 24/7 caregiver. There have been many ups and downs but I would have stayed with her until she died in her home if that is what she wanted but the other sibs decided it was assisted living time. I just hope it works for her and she has contentment and some peace of mind.

When you are on SSDI you are basically telling the government that you need income provided by the taxpayers because you are UNABLE to work due to physical or mental disability. Caregiving, whether paid or not is physically and mentally challenging work. So, you can see the conflict, you cannot try to collect for both.

Google "working while disabled How can we help social security". The monthly earning limit for SS disability is $1060.00

I believe you can inherit while on disability, without incurring a penalty. You can also make a small monthly income, I am not sure what the limit is. It was $600.00 monthly years ago. Talk to your Social Security office or ask a disability lawyer. Why should your savings dwindle. Take the amount you can earn as salary, the rest of the money could be given to your Mother's expenses, food, taxes, utilities. freeing your budget of those charges.

If that is their response to your request for help, let them make other arrangements. There must be boundaries. You should not ruin your health, or impoverish yourself to care for loved ones.

You're not alone. I have Multiple Sclerosis, and receve disability. I worked 35 years, before I was forced to retire. I have seen my fragile health go steadily down hill with the 24/7/365 caregiving. The stress is killing me, while my siblings enjoy their many vacations. They left me alone to do the caregiving, and are now quite content to leave me alone to handle his dying.

This is what helps me. I do what I do for love. I let that love empower and enrich my life. Rather than anger I feel sad for my siblings. . That last part is a work in progress. If the stress of caregiving shortens my life, good. MS is hell, and I don't want to handle old age and MS. I live my life to the fullest with a heart overflowing with love and a mind at peace. Who is it that said living well is the best revenge. I think your wonderful, doing an amazing job.

You can have a home and still get disability, but your income would be a problem. I would talk to an attorney about setting up a trust.

You can save the attorney expense by going to Medicare.gov and reading what I read about working while collecting SSDI.

I am getting an attorney.

They are correct. If SSDI saw you had income for caregiving, they would put your check in the shredder. Your income and Mom's SS should be pooled to make ends meet. Oh, and if you inherit the house, that would be "income" and would also stop the SSDI. It would be better put in someone's name who won't lose it to the government.