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A little back story. I have been living in my Mothers home as her full time caregiver for 24/7 for 3 years. I am on SSDI as my primary source of income. I have seen my savings dwindle and have had very little respite during this time. I told my siblings that I would need a few things if I was going to stay being my Mothers caregiver. I wanted 2 weeks respite a year, $800/month for caregiver pay and the house left in my name if my Mom dies before I do. I also gave them 3 other options if this was not acceptable to them. They came back stating that I was doing disability fraud. Should I get an attorney to protect myself? I really need help here - I feel so alone.

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