I have given my all for 5+ years in order to keep my mother in her home, at the expense of my business, my life, and my friendships. What can I do to make sure that I am better compensated at the end?

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I have given my all for 5+ years in order to keep my mother in her home, at the expense of my business, my life, and my friendships. What can I do to make sure that I am better compensated at the end?

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I have POA, am successor trustee of living trust, unpaid caregiver for Mom for 5+ years, and feel cheated by will. My mother is in the middle stages of Alzheimer's. I am 37. I have given my all for 5+ years in order to keep my mother in her home, at the expense of my business, my life, and my friendships. I live with her in order to care for her 24/7, with exception of a break (thanks to a sister) every 2 or 3 days to tend to the house, yard, and go grocery shopping. I have three other siblings that do diddly squat, never call, come over once in a blue moon for maybe 1/2 hour, yet act like they are just waiting for pennies from heaven to fall. Is there anything that I can do to make sure that my HELPING sister and I are better compensated in the end (if there is anything) than the "do-nothings" of the family? My finances have been nearly depleted while they live it up on trips around the world. Is there anything I can do?

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You can draw up a contract so that you and your sis are compensated now to help your Mom. There are examples on line. Be specific about what the compensation covers. Be aware that if she pays you two on a regular basis that there are tax and Medicaid implications. However, if your Mom is a veteran (or her spouse was), they can arrange for you to be paid as her in-home caregiver if she needs help with mobility and most ADLs.
If you make changes to her will, be ready for lots of flack from the absentee sibs after the will is read. I have cautioned my mom against making changes to her will just for this reason. It is bad enough to do all this for her then have to deal with greedy family afterward.
PS: do not pay out of pocket for her care...she should be paying for her own personal expenses.
Good luck.

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Well, the problem with that is (in this state at least) that sis can be paid up to a limit of $1500 via the local Alzheimer's Assn. per year, but because I live here in her home, I don't qualify to be paid. I have been told this over and over. As for a contract to be compensated, it gets tricky there, as it would have to come from selling her stocks, but the dividends from her stocks is what is helping pay her property taxes. What little she makes from SS and pension just covers her normal living expenses.

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Even if mom is in the middle stages of dementia she still may be capable of making the decision on distribution of her estate. Contact an eldercare attorney and find out what if anything can be done.

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Joanne1234. When I first read your post it sounded more like greed to me. Then I re-read it and I can see where you are coming from. If you are looking at this from more of a financial side than a loving side that is so different. I guess I am looking at this more from the loving side as I am old enough to be your grandmother. Yes, it is hard and I like you have lost all of these things too. I think this is probably harder on a younger person as for giving up all of these thing. I don't have anyone and cannot even afford help for my husband. We try and take each day we are given and do the best we can. Please keep up your spirits and it will work out. With the Alz you can't look too far ahead and when something does
happen and you look back you will thankful you could do what you could do. You have a long time ahead of you yet to re-build the things you have lost. Please be patient.

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I know what you mean, I am younger too(32) I gave up everything. I am moms sole caregiver. Others siblings haven't made contact in over a yr. At first, I did feel guilt of wanting to be compensated in the end. However, almost having a nervous breakdown dealing with mom 24/7 and seeing how siblings was having a good time with there lives. Made me think.... I do deserve something. I am not here taking care of mom because of my wants. I am here cause she belongs at home and she needs the love and dedication from a least on child. Mom was in a better way with the dementia at the time. She knew what worthless other kids she had. She changed her will and added my name to the deed of the house. I honestly don't want to live in her neighborhood. But that is her way of compensating me in the end. There is no money just the house. She would want the home to stay in the family and I will make sure of that. Siblings would sell for a fast profit. In the begining of me helping mom, my siblings agreed that mom would pay me a little to help her (less than minmium wage) . So mom and I wrote up a contract and both signed it. As my caregiving required 24/7 care my mother could no longer afford to pay me. I stopped getting paid. So I took the original contract and figure out hr rate and multiply x 24hrs x 7day a week. Each month I figure up what I should have gotten paid. I keep a running tally each month and mom and I sign it. Right now mom owes me over 6 figures and climbing. Even though moms dementia is worse now, none of her drs will claim her incompentant. I was told by an attorney that even though I believe mom is mental incapable now, as long as a doctor don't sign off on it there is nothing siblings can do..... I know its not the best answer, but thats how I dealt with it!! good luck!!

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I agree with the suggestion above of going to an elder lawyer and getting his advice-at least you will have the house-there is a thread the gross out thread there are very dedicated caregivers there that can you you emotional support and good advice and there are even jokes some of us former caregivers are still on it,

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I too am a 24/7 Mom caregiver. I live in a state where I get paid to care for her, but they limit the hours, max of ~ 167. I don't know of any caregiver that gets compensated for 24/7 hour care, only institutions do. Does anyone reading this get paid for 24/7 hours? If so, what state do you live in? I think nearly everyone on this site sacrifices their lives for their loved one(s), so you are among friends here.

You could try to find a geriatric social worker to see if there are any programs in your state that would help financially, or at least help with respite care.

There's always the ultimate reward in the end... God will reward you, and if you aren't a believer in him, I hope you don't mind, but I'll be praying for you.

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Also, note: You are a bit better of than some. For me, there is no house. No life insurance. No assets whatsever. She gets SS and a small alimony... that's it. My life when she's gone will be a complete struggle and I know my family will head to the hills not wanting to be responsible for anything other than their own grief. (sigh).

So why do I do this? Same reason as you. I love my Mom and I want the very best for her.

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@yellowfeever... I don't believe that my mother has ever been labeled as "incompetent" by her doctor (I will have to ask my sister), however she cannot carry on a normal conversation most of the time without going waaaay off track, and sounding pretty goofy. It also depends on if she's having a good day or a bad day.

I'm wondering if a notarized contract between my mother and I would be enough, in order to be paid for her care, or if the siblings would need to sign as well to avoid conflict? I worry though about Medicaid being needed later, which might see all of that money paid to me as being a gift. I guess the safest thing to do if I were to be a paid caregiver, would be to keep it in a separate account of mine, and not touch it until after we see if Medicaid will be needed or not. Maybe I should consult with an elder lawyer...

In terms of changing how to divide up her assets, getting a new will and/or living trust made up through her living trust lawyer would be very costly, unless something like an amendment would be enough, and if it could be done without having to drag Mom in to the lawyer's office. I just wonder about it ever being contested though, considering her current frame of mind, if my family isn't happy with the changes. Maybe before going that route though, I should sit down with my family with my documents that show everything my one "helper sister" and I have done for Mom, and see if we can agree to some kind of percentage basis of how to divide up the proceeds of the estate, if there are any in the end.

@bpryor01... Thank you. Your prayers are much appreciated, and I will pray for your situation as well. Hang in there!

...and to anyone: No, it certainly isn't about greed. It's about fairness. All of my siblings still have a responsibility to their mother as long as she is still alive. They have been told repeatedly that they need to do more to take the burden off of me, yet they refuse to do it (except for one, who does help to a certain degree). The others won't even call to check up on her and ask her how she is doing. To top it all off, a couple of them live just a stones throw away. There is no excuse for their behavior, and once Mom passes, you can bet they will be over here lickety-split, seeing what they can get their hands on. There is a very real chance that I may end up homeless after I'm done caring for Mom, as I have given my all. I'm sorry, but that is not acceptable to me. The "dividing things up equally" part was put into the will well before anyone knew that I would have to give up my life and my business, and the will or trust should have been changed long ago. God bless all of you who are in my shoes.

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I feel your pain. I was the daughter close to home for my father with Alzheimers. My sister lived 600 miles away. We both gave money, thousands for my father's care so he could stay in his home so aides could care for him when I couldn't, paid his bills etc. I ended up bringing him to my home to live since he lived 40 miles from me. I went to an attorney and had a lien placed on his property for the care I gave him so I wouldn't lose my shirt in the end. I documented all the care I was giving him, mileage, paying his bills, paying aides etc. When his property was sold at auction, I got paid back. My sister did the same thing and she got her money back too.
If you and your sister are doing the majority of the care, please look into this with a lawyer because it was the best thing I ever did.

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Back to the original question. If your mom has private resources to divide at her death, those same resources can be used to pay for her care. That care would include paying caregivers whether they are family or not. If you were not there her care would be in excess of 75k per year. An elder care lawyer can assist you in drafting a caregiver contract and be sure the numbers reflect your mom's care and her best interest. Like Lilli wrote, her will is not the place to do this. All said, if your siblings have not already suggested this, it is unlikely they will be happy. Some of the backlash, you have lived rent free and not had to work, my sister is robbing my mom blind (translation there goes my inheritance. I completely understand your frustrations and believe a 3rd party (Mom's lawyer) to look at the situation and talk about fair is the best approach. Siblings will not agree on fair. I am not really sure why there can't be a loving side and a financial side to these situations. But it certainly seems that many parents do not see any need to reimburse their offspring for the time and sacrifices made on their behalf, yet it is all about equality and fairness when it comes to the will.

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I'm not sure it's a matter of love or greed as much as it is a matter of survival.

If you've given up everything to care for a loved one, you don't want to be kicked out on the street when they pass before their body is even cold. (It's happened to a friend of mine.)

Don't let others play the "greed card" on you! This is also about taking care of yourself!

I figure, what do you need to live on for 6 months to a year while you get back on your own feet?

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I have been trailing after my mom since July 1991. For one year now, I have an odd condition where I cannot walk without some pelvic discomfort. Tricare will not give me an MRI. My mom cannot write out a check or dial the phone anymore. My husband is a disabled vet. All of our doctors are very old. They are not relating at all. Their information is outdated! Their medical reference materials are old. Why does the the MD license not have an expiration date?

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Oh Joanne1234, you poor thing. You need a caregivers contract and retroactive pay! Dont ever touch her Will, go to a lawyer asap and get it done the right way. You may already own her house is you have been living with her and caring this long. This is not one oz of greed, you are giving up your life for your Mom. (so am I ) Your Moms house needs to be sold, and all her money will be paid to her care, including YOU. Why should you do all of this and if she passes away, its then all divided equally when the siblings are not helping equally? Also your Mom pays for the lawyer, not you, and if you are trustee, etc, you can do this all yourself. Obviously you are POA and Trustee, your Mom picked the right one, best of luck to you and get this done asap, you can even hire in so you can have Time for you.

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Sorry I have 2 more comments after rereading. Yellowfever, I felt the same as you about not getting paid. I thought of it as "taking moms money, I couldnt do that!" Then....... I was told by the lawyer, and others, its not Moms Money, its the siblings money in the end, the siblings who are doing "nothing!" That made it understandable very fast in my book! One more thing, dont ever think free-rent is something to worry about or "not working". Not working? you work harder than anyone who does go out to work! There are no breaks, there is no going out, there is nothing, you are working and on call 24/7. Can you put mom to bed and go out? no, Can you ignore her when she yells out in the night or wanders? no. By the sounds of it, middle stages, your Mom could live 10 more years, do you really want to give up your life to save your siblings inheritence, and would your Mom want that, no. you deserve compensation at the least, you do it ALL. Its much easier to "go to work" even if you work 14 hours outside the home a day, because when you come home, its just your life, and its just your life on weekends, your life, without responsibilities, and you dont have that now. You can get the siblings together and they might help if money is involved but with dementia/alz one caregiver or 2 is better or it gets them all confused and its harder on you overall. Change is not good for them. Your Mom is so lucky to have you and not be in a nursing home, give yourself plenty of credit for that, I commend you 110%!

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How old is your mother? Realistically speaking, your mother's Alzheimer's is going to get much worse over time and who knows how long she will live. Your sense of social isolation and loss of being financially independent is going to increase as well. At some point your ability to cope with things and your mother's need for help is going to call for some drastic change because it will get over your head. What are you going to do then? How are you going to live and support yourself afterwards? I understand it is great to have mom cared for in her home, but are you going to end up homeless and dependent on welfare? Could she afford going to assisted living? Or, does she qualify for medicaid to be able to go to a nursing home with an Alzheimer's unit? Does your mother have any long term care insurance? Did you promise your mother that you would take care of her at home?

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Luvmom, you are right on with your last comment!!!
My day of reckoning was when I was operated on and was supposed to bedrest. I had throat surgery and wasn't supposed to talk!Both siblings knew of my surgery but none lended a hand. I even asked. I was shot down, they were too busy. So, I managed to take care of mom, straining to talk and dealing with pain from not taking pain meds(I was afraid I would fall asleep and she would wander away or get hurt) I set myself up for a longer recovery period cause I couldn't rest! Well that was the wake up call that I needed. I did need compensated for caring for mom. Thats basically when siblings and I had our "outs". I had every right to be peed off. They only cared when I spent "moms" money to fix up house. Siblings have tried there darnest to get me in trouble with threats and trying to turn me into protective services. But I keep track of everything! So nothing they can do!!
I sometimes look in the mirror and think to myself, who am I??? The person I was and who I am now are so different. My marriage is barely surviving. I have no friends no family, just me mom and hubby and kids. My hubby and I enjoyed doing things. We no longer have that extra money or the time away from mom. Yeah, I do get a little respite from mom once in a while at local PCH. However, when she goes there I usually have a full plate of errands, housework. I never get that "ME" time I used to have. My kids are starting to act out(especially the teenager). Our kids want to spend more time at there "other" parents homes more than ours. I don't blame them. We don't do anything together anymore. I have my mom my #1 priority above all.
Caregiving is one of the hardest jobs out there. I thought when I first started looking after mom it was going to be just like anyother home health job I did!!! Boy, was I in for a surprize!!! There is no 9-5 shift with weekends and holidays off!! Mom needs 24/7 care. No more hanging out and having a few drinks with friends, or going on an all day shopping spree!!!! Caregiving is "priceless" how can one actually put an hourly wage on stress your body takes mentally and physically along with the caregiving??
I don't care at this point was others think of me, especially siblings. I know what goes on here in this home. I only answer to god if my intentions are not in the purest form taking care of mom. I enjoy spending those good days with mom, those are memories I will always remember. My siblings are the ones missing out on mom.
Joanne you do what you feel in your heart you need to do!!!! Don't worry about others!! Remember if they were in your shoes they would probably want the same thing about compensating. You need to pat yourself on the back for the sacrifice you made to be selfless enough to drop everything in your life for your mom. Your a good person!! Hang in there!

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I can't thank all of you enough for your thoughtful comments. yellowfeever, I can soooooo relate to everything you are going through. Do what you feel you need to do as well. You are the ONLY one who knows how much you can take, and are an amazing person to put up with as much as you have. Yes, we never see our caregiving for a parent as turning into the life changing job that it morphs into in the beginning, and a very misunderstood job at that! It is a long, HARD road for all concerned.

I do realize though, that there may come a point in time (to answer cmagnum) where Medicaid will need to take over and take care of Mom long term (hopefully short term) nursing home needs. Of course, Medicaid will see what I am being paid (once I look into that) as being gifts, meaning that Mom will be inelligible for Medicaid until the amount of those "gifts" are paid for her nursing home care when the time comes. As I understand it, they can also put a lien on the house, but can't collect on it because I'm living here, that is, UNTIL I sell the home or move out later on. When I see the elder lawyer, I will probably need to discuss a "Life Estate", which keeps the state's hands off of the house. No, she doesn't have long term care insurance, and I never made any promises. I should also clarify though that I gave up MOST of my business, but not all. I am currently able to pay for my personal needs such as groceries and such out of what little I am still able to bring in. It all really boils down to how much the only helping sister and I can take, and how bad Mom gets. The longer that we can keep her out of a long-term nursing home with Medicare getting involved, the better. I may need to move in with sister (the one who helps me with Mom) after all is over with until I can get back on my feet. Hopefully, my health will still be good by that point, since all of this has really taken a toll on me, especially with having to help Mom with bathroom issues all throughout the night when she tends to be more uncooperative. That's about all I can hope for at the moment in the long run.

Luvmom - I completely agree with you, and will plan on seeing an elder attorney as soon as I can. I have kept very good records concerning all that my one sister and I have done for my mother and her home.

LillyLu - Please post your question again as a new question to the main part of the message board here: https://www.agingcare.com/Community . Maybe more people will see it that way and be able to help. May God help you with what you are going through, dear. It sounds like a very tough time for you.

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Correction... Medicaid, not Medicare.

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Just to clarify, I hope my post was not misunderstood. I completely support caregivers being given fair monetary compensation when it is appropriate (which it certainly sounds like it is in this case and most cases). I was commenting on some of the problems she might expect from siblings and to be prepared. From this site it would seem that siblings supporting financial reimbursement are rare. What I find even more surprising is the number of elders who don't make reimbursement to family members who provide care to keep them out of a nursing home. Joanne, I hope you find a good attorney who helps.

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debmcd, I understand you meant she could come into issues, I also meant what she could maybe say lol. Joanne1234, your caregivers contract goes towards a medicaid spend-down and all you buy for her like diapers, clothes, tv, recliners, etc. Just keep it all recorded with all slips. Those receipts fade over time, so I print and keep the bank records monthly also. Isnt this a great site for us all! Pats on the back to all who read this.
Luvmom

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debmcd1256 - No, you stated things perfectly, and all are valid points. I think the siblings overall are pretty good at understanding my position, but I'm not so sure about their "significant others" ...and when it comes right down to it in the end, whenever money is involved, some people who are already prone to be selfish are more than likely to get a little crazy.

luvmom - Great point on the old receipts! I noticed some old ones of mine doing the same doggone thing when I was looking through them. Isn't it terrible though? There should be a law demanding that receipts are printed in a way to stand the fade test of time. It's not like they were out in the open, sitting in the sun either.

I didn't know that a caregiver's contract could go towards a medicaid spend-down. I've read some horror stories on-line about that topic, so I hope it turns out well if we have to apply for it. Anyway, that's good to know. Thanks! So far, she makes enough from her SS and pension to pay for all of her living expenses, and minor repairs. There may come a day when a major house expense hits though. Property taxes have been creeping up too. I may have to invest whatever is paid to me in some good paying dividend stocks, in order to help with these things that may arise down the road. Thanks all & God bless!

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Horror stories on caregivers contracts? Its care and its a legal contract thru a lawyer, why would there be a problem? I am over the top when it comes to legal issues and went to 4 in total to make sure all is correct. I have an evil sibling and I leave no stones unturned to affect the future fighting with that one! lol.

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Moral of the story is... If things are done properly, then I would guess there shouldn't be a problem. :-)

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Great article, thanks. I have done it all correctly, phew, according to what it says and we paid over 50k in taxes already, nice huh? But, we did it the right way. The way I look at it, even if it wasnt done right, taking care of your parent free for 10 months is the only penalty and havent we all done that before the contracts were made out, or we are doing now anyway? Thanks very much.

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Well, Joanne, you can take your mother's S.S. checks and put her in a personal care home, assisted living, using her money ( all legal). Since you have a POA, I don't see why you cannnot do this. You don't say HOW OLD your mother is, but some day, she will pass on. At that point the POA will expire, and her Will's directives will take over. What exactly are you waiting for? Approval from your siblings? Do what you have to do.

p.s. There is no "compensation" for caregiving. You either do it or you don't. Hopefully, the Will will be compensation enough.

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I have given my all for 5+ years in order to keep my mother in her home, at the expense of my business, my life, and my friendships. What can I do to make sure that I am better compensated at the end?

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