How to tell my sister that I should be paid or get more than 1/2 of the inheritance for taking care of mom?

As the "far away" sister in such a situation, here's my take on it.

Six children, all over the U.S., one brother who chose to live his life within ten miles of Mom's home. Wonderful. Geography dictates that he is the support person and he has willingly taken on that responsibility. The rest of us have kept in close contact and visited Mom as regularly as our lives and finances allow.

We all agreed when Mom needed to move out of her home and into an independent care facility, which would make it easier and safer for her. We all agreed to take Mel's advice as to which place, with the understanding that Mom would be able to live out her life there, progressing through the system, from independent to assisted to nursing home care. All agreed.

Mom had been losing ground steadily, mentally and somewhat physically recently, so we all understood it was time for her to move into the assisted living part of the facility, but when Mel heard the price he made some terrible accusations to the facility and pulled Mom out and took her home without even discussing it with the other five of us. We were shocked and confused. Turns out all Mel could talk about was Mom's MONEY that the facility 'wanted to get their hands on', etc, etc. It wasn't about what was best for Mom, it was all about the money.

So she's been living at Mel's house now for two weeks, he has told us he wants $150 a DAY for Mom's care. A lawyer has told us (and we've all agreed) that a reasonable rate can be paid to a family member,… but no one has heard of that price tag before.

Now we all are wondering about Mel, asking for more disclosure than he has ever willingly offered and it turns out Mom has a half a million dollars saved up…..and apparently Mel is afraid he won't get enough of it in the end so he'll take it upfront?? There are laws about that.

Her money. For her care.

So, we've lost confidence in Mel, now, and ALL of the rest of us want to see her back in professional care, in a Memory unit, where her special needs can be addressed. We'll see what will happen.

We have so appreciated Mel's devotion to Mom over the years, but let's face it: it is geography. I and several others of us have offered multiple times to move Mom to OUR area of the country, so the burden would be ours, but Mel refuses. So…? What can we do? We're happy to let him take a fair 'wage' for her care,…. but really, she needs a facility.

I met with the Medicaid caseworker today. He stated that in the state of OR that I can be paid, out of mom's funds, to care for her. This way we can start the spend down of her monies to get her qualified. It was a very, very helpful meeting and alleviated much of my concerns.
My sister and I are both DPOA for my mother. My attorney, who also attended the meeting with the Medicaid caseworker, suggested that I draw up a caregiver contract with my mom and have my sister sign it. Then there wouldn't be a conflict. She was going to look into it further.
The Medicaid caseworker said that as long as I documented everything I did daily for my mom that I could be paid.
Then we can have her qualified prior to us ever needing to have her go into a memory care facility. It gave me a bit of comfort knowing that one more hurdle was approached (not overcome yet).

Butter, money does that to people. They feel that for some reason that money that their parent has should go to their children (themselves). My opinion is that every last dime of my mom's money should go to her care. Whether that care is with me or with a nursing home is a personal decision. Especially if she is receiving 24/7 care.
Having said that, in the state of Oregon the going rate, as of October 1,2013 is $175/day if you were to hire someone to come in and take care of your mother at home. Most nursing homes around here charge from $4000-$5000 per month for a memory care facility. What you are choosing over is whether you would rather have your mother receive 24 hour care with your brother or inside of a nursing home.
If you don't feel that he can give her adequate care at his home, meaning 24/7 care, then you need to discuss it with your mother to see what she would prefer.

Butter, your mother's money is first for her care regardless of how that is occurring. Here 24/7 care costs approximately $350.00 a day and there is a team of three people to provide the care. Consider the hourly rate over 24 hours, most caregivers receive in the area of $10.00 to $12.00 an hour. Then consider the overtime for more than 40 hours a week, over the course of a year that is about $100,000.00 a year! Be thankful that your brother is willing to care for mom at a reasonable, very reasonable cost. If he provides good care wouldn't your mom rather the money go to a family member than a facility?

Before he is paid anything there needs to be a care agreement in place that is Medicaid compliant. If there is not, then should your mom ever need Medicaid, there would be a penalty period equal to any amounts given as gifts to anybody, and paid to your brother for her care without an agreement in place.

Another suggestion, before your family blows up as mine did, hire a geriatric care manager to assess your mothers needs for care. You need an impartial third party to assist. Let them make the call.

A MILLION THANKS AND HUGS FOR SHARING YOUR STORIES

That is why their needs to be some kind of family caregiver legislation passed (federally or locally) to pay us and protect us (although I have to admit, that I am not blood relative, but a fellow disability person and when it is not right for one (disabled), it is not right for all(disabled people).

This is my point ...It isn't like I started yesterday.
I started in 2006, little by little, until caregiving was a full time job.

It was not until I reported them for financial abuse and neglect (2011),

(I provided food, medicine and medicine giving,
toilet paper, paper towels, laundry, vacuuming,
companionship, Doctors visits that diagnosed her dementia leading to AD.(2009)
took her blood pressure (while she was switching from 30mgs to 60 mgs blood
pressure medicine) made sure she made it to her part time job, arranged her social
calendar and even cleaned up her poop, a side effect from Exelon).

that their (the POAs of financial and medical) comeback report to the Senior Abuse investigator from Catholic Charities, was for abuse, what kind(?) but said, our 86 (84)year old was afraid of me, a vague accusation.

Catholic Charities bought "their story" hook, line and sinker (but they were never thoroughly investigated). I was asked to leave my apartment that I shared, so our 86 (84) year old could come back to her own home (a two flat) but they never returned her, because they could not they (the POAs) inadvertently removed her/their free caregiver. In addition I (solely) had to incur the debt of an 800.00 apartment.

The 86 (84) year old was flopped around for several months, as they (POAs) attempted to care for the 86 year old (and went through $60,000.00 in 7 months) but could not take care of her the way I had, until she was placed in a very large AL facility (at 6500.00 a month).

They (POA's) sold her building in a down-turned economy, to pay for attorney fees, GAL fees and a guardian was appointed. The POAs did not realize that by selling the building, that the money would be placed in a conservator-ship in a bank, or that they would lose their POA status (no house to manage, own or the person) by default.


HOW DID WE GET HER BACK?
Glad you asked...

OUR MIRACLE HAPPENED.

The opposing lawyer FORGOT her stance and said we could watch her for a weekend 2012. (what person who accused you the year before of abuse, would put the same people together?, it would never happen...if the abuse were true) and we have had her ever since. We have been reunited for a year and a half. NO OUTSIDE ABUSE REPORTS . NO Problems...

until we wanted to get paid...now they (ex POAs) are bringing up the abuse...again, the fact that she is now wearing different clothes (new ones) and gym shoes- per the foot doctor.

We are only asking for the 7 hours we cannot have an outside job (not two sets) one set of 7hrs. The 86 year old needs 24/7/365 care and we relatively have no time off.
One sibling takes her 30hrs in a month.

Our court date is in a couple of weeks, we want a hearing and a full investigation,
there isn't any reason that a senior's life cannot remain golden, even if they have AD.

It is a disability like any other disability, they have rights, too!

And also do the caregivers who insure those rights!

gladimhere, where exactly is a Medicaid compliant caregiver agreement available?

That would be wonderful if Medicaid would help us draft a fail-safe agreement so there would be no penalties and repercussions down the line; that's really our only argument, fear that there would be. Will they do that for someone who is not currently Medicaid eligible, or even near it? Or do you have to be on the verge?

The agreement has to be drafted before caregiver is paid. Anything paid would be considered a gift in the eyes of Medicaid without an agreement. An elder law attorney needs to draft it. I have never seen one yet, but attorney is working on one.

Butter, if you wait until Medicaid eligibility, then money has been paid already and moms money spent down. Anything paid before an agreement is in place would be subject to penalty. For example, say brother is paid, just to use round numbers, $100.00 day, over the course of five months that would be $15,000.00. Something happens to mom and she has paid $15,000.00 to brother leaving her completely broke. Medicaid is applied for and they find brother was given $15,000.00. Through the application process they ask why brother was given $15,000.00 to which the reply would be he was caring for mom. They would then ask for proof that it was for care and not a gift.

The nursing home charges $5,000.00 a month for all private pay residents. Then Medicaid would not pay for the first three months, this $15,000.00 is the penalty. Those penalty months would then need to be paid by other means, most often I would guess that would be children.

Confused yet? But a good elder care attorney is invaluable, in these situations. And if you want to be more politically correct, it is commonly called Medicaid Planning which allows for some assets to be protected reserving them for beneficiaries. But the rules are very strict. Parents home can be transferred to a caregiver child without penalty if that child is caregiver for a period of two years before facility care is needed. The law may be different in different states.

Isn't medicaid the same program in every state????
I thought the amounts from state to state varied, but not the initial concept.
I only know Illinois, not everywhere else, but when I go on the internet looking for things Texas website looks better than ours as well as Florida, California, Minnesota and the UK.

Butter, what was the price Mel heard that made him flip his lid and drag your mother out of the ALF? I'm just thinking, the other reason he might have seen red and not stopped to think is that he felt they were ripping her off - but OUTRAGEOUSLY. Not so much worried about the money's health, more enraged at your mother being held over a barrel and robbed. I'm sorry all this so upset a good family dynamic you had going for you there. Hope you can get it back. xxx

lwen, the rules are different. Many states allow payment to family caregivers, but from what I have read on this site New York is one state that does not.

Gladimhere, that is the exact worry we have, that the family will be penalized if/when Medicaid is applied for.
Countrymouse: Mom had been paying about $2400 a month for independent living apartment at that facility. Moving her to Memory Care would have been closer to $6000, so more than double, quite a jump. I think Mel DID think they were robbing Mom. But he still should have discussed it with all before jumping ship so we could have investigated all options and made a unified decision. After calling around and comparing similar facilities there, the going rate runs between $5500 and $6000, so it wasn't out of range. That's a LOT of money that will run through savings in a hurry--- but it is what Mom needs now. And it is HER money, for her care. As a nurse I know what kind of overhead those facilities have, too, which is much higher than what one has at your own home. So Mel's price, of $4500, seems high to us----but the big question remains," How will that be seen by Medicaid?"

Although Mel and his wife are doing the best they can with Mom, they are not trained geriatric professionals and have some funny ideas about healthcare. Now Mom has voiced to two of us that she doesn't want to live there, she feels uncomfortable and like she is in the way, and she is such a private person she needs some space to herself. Mentally she is up and down, sometime rational, sometimes not.

Butter-
Who has the POA's? Ultimately it is their decision. You should hire an impartial 3rd party to do an assessment of you mom's needs. If she doesn't want to be there she should tell the case manager. You as a nurse, and beneficiary, should not be making the call. In my family a sister is a Licensed Professional Counselor. Two years ago, she wanted to get a friend of hers to do a geriatric nurse to complete an assessment for my mom. A friend or family member is not appropriate and automatically brought suspicion onto my sister. Regardless of what is best for your mom it will cost her estate money. Brother's offer is very generous to the other siblings. If your mom's mental state is up and down, sometimes rational and sometimes not, get the assessment from a certified geriatric care manager. And if she is early stage dementia she probably does not need a trained geriatric professional to care for her. If training is the question, the Alzheimer's Association offers a class called Savvy Caregiver that may be all that is necessary at this point. AA has many classes available that are of minimal cost. Even when nursing care is needed many caregivers are trained by nurses for a variety of different tasks. Get the impartial 3rd party to do an assessment.

If there is a care agreement in place and permissible in the state in which your brother and mother reside, and before brother is paid, Medicaid will not penalize your mother or the family for payment to your brother for mom's care. You can contact elder care attorneys online at no cost, in the state of concern through AVVO. You can pose your question, they will respond and will often offer a free half hour consultation. I imagine that they would also recommend a geriatric assessment.

And, yes, your brother should have let everyone know, if for no other reason than to keep the peace, but if he is POA he is not required to do that. Get the geriatric assessment done for your family's sake. Contact an elder law attorney. If mom is sometimes rational, you also need to realize that, and take everything she says with a grain of salt. Let the professionals help your family make a decision.

Oh, it's such a shame isn't it? Your poor mother, and all the effort you've all as a family put in. Yes, of course Mel should at the very least have had the courtesy to inform you - and of course ideally even think of discussing it with you! - before he made a decision of that kind; I was just thinking back to some of the more idiotic faits accomplis some of my nearest and dearest have come up with from time to time…

I agree that the (still dizzying) price does sound reasonable. (Aside - does everyone get the same gob-smacking shock the very first time they hear in cash terms how much care costs? I know I just sat there in stunned silence thinking you could have a room at the Savoy Hotel for that!) Actually "reasonable" is not a word that has any place in the same sentence as "care." I suppose I mean normal. And as a nurse you'll also know what dividend finds its way into the nurses' salaries, hem-hem.

Your mother's being a very private person sounds like an important angle. Given that, and her growing need for specialist care, plus the fact that the more able you are when you walk into a care home, the better your chances of settling in to a decent quality of life; given all those I hope it'll be possible to bring Mel back into line with all the rest of you, and get him to see past what he probably still thinks of as the exploitation.

He's not watching too many TV documentaries about institutionalised abuse, is he? It just occurs to me that that might also have freaked him out, especially if he were agin care homes to start with.

I don't understand the Medicaid processes, forgive me. Is the problem that Mel's "wages," if not recognised as such, would therefore not be insured so would have to come straight from your mother's capital? Whereas in Memory Care, once her savings had whooshed down to a given level, all remaining fees would be covered?

I just really hope it will all come right. You're very generous, in such trying circumstances, to recognise that Mel and his wife are doing their best; and that makes me feel optimistic for you. Please update, best of luck x

gladimhere, I asked an elder law attorney here to draft one for me because I haven't seen one online either. I was told by the medicaid caseworker to put together an agreement before being paid. He did not have an example for me to use. I'm guessing that would make too much sense wouldn't it?
He did give me a pay schedule for our state so that I would have an idea as to what the going rates were. He "suggested" that I use that as my guideline.
I now have a long list of things to do before we can get her qualified for Medicaid. I am surrounded by paperwork and receipts that need to be organized.
I was also need to figure out what I need as far as "documentation" goes. I was told to document what I was doing for my mom to receive that care. I'm unclear as to whether or not that is a daily log or what. So much is too ambiguous for me. I like things defined. I like to know what is ahead.

A few comments....from a retired RN, caring, from afar, for both my parents....

1. Re: siblings who do it all and others who 'run away from doing anything'....my comment is to simply have an awareness that not everyone has the ability to be a caregiver and do it well. So be kind if possible to siblings where any of us know that to be true. Not helping because of other 'reasons' is another issue. There ARE many ways to help! My brother is dead, so I am alone in this, but when he was alive, he told me clearly that he could take in Dad, but never Mom. We never got along with Mom easily...neither of us. But, he said he would help with money or paying bills or fighting with agencies etc....he also lived out of town anyhow. I never had an issue with him. So siblings who don't provide actual care...CAN be asked to help in other ways.

2. Being paid for caregiving....if the parents have funds, NONE of us should feel guilty over asking for payments. YOU are providing much better care than a hired caregiver, simply because you know your parents, and their likes, dislikes, needs etc. You have a better vested interest in observing carefully and keeping app'ts and communicating with all involved. If you were not there....a caregiver would have to be paid for too. Also, I've been told that now....Medicaid will pay for caregivers in the home, including family members. That is a new law this year. So for those of you parents on Medicaid, ask about it.

3. In general, regarding getting reimbursed for care....if there is an attorney, ask that person. We have an eldercare attorney and I was told without even asking, that if I wanted to be paid I could be from their trust. I was told that because I travel to help them, I was perfectly entitled to have their money pay for all of my gas and some of my car maintenance and that if I bought either of them stuff for the house, I should pay myself back from their money. I was actually shocked at what I could pay myself back for, as my parents have been very tight with their money, and always expected me to 'show up and take care of it' just because I was their daughter. It never occurred to them, even before dementia that spending $100 for gas to visit them could be hard on my budget....and my Mom has always been very good at needing things, but not having cash with her and then forgetting to pay me back....so I just thought I was 'stuck' spending our limited monies for the rest of their lives. I thought POA and trustee was just to take care of their 'bills'....not any other expenses. I still don't 'milk' them for all I could, and for example I split the gas....when I go....I buy one way and use their card for the return trip because I honestly feel that as their daughter, I WOULD sometimes just be 'visiting'. But now I am having to make the trip twice a month, and occasionally 3 times a month....and it is getting harder to do the split or have free money from our accounts, due to the economy. I run my own business too, and due to helping them so much, this past year, my business income was down 50%, because I don't have time to spend on customer's questions/emails etc, and therefore, lose business because the younger generation wants everything NOW, NOW NOW....and will go somewhere else if they don't get the info they want immediately. When I have to travel so much, I cannot respond immediately a lot of the time. So for those who don't have an attorney involved....just sharing what our attorney said is reasonable and just to use parents money for. You can probably verify what is usual or customary in your own state. And, please, do NOT feel guilty for thinking you need some help or payback!! Ask your siblings for help in ways they COULD help too. I didn't have to deal with the inheritance issue, since my brother is no longer with us, but with the way the money is getting used up, there won't be much left as an inheritance anyhow. Now that Dad is on Medicaid to pay his facility fee, they will get paid back out of the house, and whether anything is left, depends on how long Mom stays in the house before she needs to be placed, and what they house sells for in the end....so I just figure it's better to count on nothing and be surprised if there is something left. But for that very reason, I do NOT feel guilty if I use their checking card for proper and legit pay back. There is much time spent just on finances, bill paying, paperwork submission to agencies, coordinating and making doctors visits etc....even though I am not a day to day caregiver....so keep that in mind too. It sound like many of you are doing double duty. And finally, you have to care for yourself first....whatever that entails for you and your own situation....because if you are NOT in the picture, who IS going to do what you do?? Who will be there, day to day, for your parents or parent?? If I get sick or die or cannot do what I do, my parents will have no one except the case worker at the law office....and when I need a break, my Mom is still with it enough that I can just nicely point that out to her! For a while, she was phoning me up to 20 times a day for every single little thing. Finally I just told her that I could NOT do that way, and there was too much stress on me. And I said to her directly that I didn't want to be mean....but she could easily live another 10 years....and I still have a husband here with probably Parkinson's too, and Dad is still alive....and so I just simply cannot burn myself out, cause these people will have no one. Well hubby will have the two daughters if I am not here or cannot deal with life when he needs help, but I pretty much think he deserves me to have the best I can give him, so I have to 'save' myself just in case! Anyhow...enough....but those are my thoughts on all this.

Wow, what a wonderful, supportive forum. If anyone of us puts ourselves in our parent's shoes, we probably would want to be home, but if the home was sold to have money to pay for the care of the parent. We all have our stories. My love for my mother is selfless, I would do anything for her, she gave me life. I am resentful now and then that my brother has just bought his third motorcycle, a brand new Audi and renovated his den, I
Goes on vacations and tells everyone all the fun things he is doing. Jealous, no, just can't believe he comes to visit mom once a year for a few years only if a business trip pays for it. From NYC, when my mom had cancer, to taking care of her in NJ, my girlfriend painting the house in Jersey and then it sold in one day after an estate sale and now mom is down the street at a less expensive assisted living facility so that her money can last. My mom has dementia and is 88. Sure, I can either place her at a home and care for $$$ or care for her from an apartment in our building. I have to retire in one year due to mandated retirement with government. I too feel that if I take care of mom to be paid a little so I can pay some bills. Love you mom and I have enjoyed every day with you, what a blessing. I know I might be angry, but I can't believe how selfish my brother could be.

Pink-
Yes, I agree that would be too easy for Medicaid to provide an agreement that is in compliance with their rules. It would keep too many families out of trouble in terms of owing them money down the line.

My understanding as to what is to be documented could many times be covered in the agreement. And most days are relatively easy to cover, it is daily cooking, laundry, shopping, companion.... Then there are days that there are doctor appointments, hair appointments, hospital stays that often include caregiver sometimes 24 hours. The list goes on and on. Home maintenance, raking, shoveling snow, replacing light bulbs, sanitizing the jacuzzi tub (yes, we have one of those). But most of the time is spent as a companion which is what siblings think is not work, a walk in the park, etc, when it actually is the most challenging. In my case an agency caregiver could not provide my mom the comfort and care that I do. They do not know her, I've known her all my life. And as Joannes stated, an outside caregiver would not know mom's life history, which is often what gets stuck in the brain somewhere and repeated over and over and over and over and over.....

Joannes-
I agree that many siblings are not emotionally suited to care for parents with dementia. That is definitely the case in my family, neither would be able to do what I have been doing for more than two years now, and that is ok, I understand that. But, they just have to let me do my job instead of the ridicule, calling in false reports to APS and lying to other relatives and even my own children to obtain their sympathy in an effort to undermine me. I have heard statements like I'm not willing to impoverish my mother to benefit you. I think this is all part of their denial of the extent of the disease. What about impoverishing me that will only benefit them in the terms of financial gain upon mom's passing. Yes there are significant assets to pay for care.

There are tons of resources out there to help you find help for your mom and some maybe free. I would contact social services and get a worker to assist you. I would also get a free consult from an attorney who specializes in eldercare. If there's money available and your mother needs it you should be able to tap into those resources to support your mother. This includes selling her home if necessary and placing her in assisted living or convalescent home. You're not clear about your statement of "we have an agreement to get equal share when mom passes". What agreement? Verbal between you and your sister? Or is this a will or trust agreement. If it's not a legal document, you'll be lucky to see half. From my past experience with my siblings, you're not going to get but half of what's left. But as others have stated, it's not worth the headache now to try and wait for what $10K or 20K you may not survive your hardship. My mother died in October. My two brothers wanted everything. Said mom told them they could have it all. Yet I was the one who took my mother into my home, and took care of her (she had late stage dementia) until she took her last breath. The brothers didn't do squat to help. But I went to court and put my mother under a conservatorship 8 yrs ago which placed her social security, pension and estate under my care. I used her money to meet all her needs. I doubt seriously if your sister will ever agree to pay you more than half the estate of your mom because she's clueless about the hardship, the work you're putting in and really could care less, otherwise she would be helping you. Siblings don't help!!! Generally only one person gets crucified with the caregivers job. Go get some help. Talk to an attorney and have them help you tap into your mother's resources so you can get yourself some help before you kill yourself trying to take care of your mother. We do this because we love our parents but our parents really don't want us to be miserable and suffer like this. Seriously, go get some legal counsel who can help you tap into your mother's resources to help take care of her. There's no law out there that says "you" have to do this with your money.

Speak to a lawyer now about reasonable costs. Also speak to your sister.

If your sister is opposed, then tell her the only option is a nursing home which will costs thousands more than you, as you need to get a job to pay the bills. I'm sure she would agree the cheaper option, and you need to live and pay your bills.

You've gotten a lot of good advice here.
My suggestion is that you don't look to get more inheritance from mom. How do you determine what your sister gets and what you get?? That's very subjective, not to mention it may be important to your mother not to treat her children differently in her will.
Getting paid fairly for income you're giving up by caring for Mom is much easier to quantify. Approach your sister. Explain that you cannot continue to sacrifice your own financial wellbeing to help Mom any longer and that Mom's funds will have to be used to pay for someone else to do the care or for you to do it.
You must keep very careful records of your time and expenses. A fair agreement between you, your sister, and your mom is the goal – not "I've sacrificed so much and want to be rewarded." Again, that's extremely subjective. Your sister may have a very different view of things and your mom might, too.

FYI: This thread is three years old, and there were over 100 answers to it 3 years ago.

The first thing I would do is immediately start a very detailed log of everything you do on a daily basis, the times involved, any money you spend, etc. What you want to do is build what could become a "legal document". It is better to have this and not need it than to need it and not have it if push comes to shove. Second, with this information available, contact various care givers and get them to provide you with (hopefully) written information as to what their estimated costs would be if they performed this service. Then try one last time to sit down with your family to make things right. If you do not get anywhere, and I doubt you will, be prepared to get the advice of an eldercare attorney. Good luck. I see this all the time and it stinks.

I have a question. Does her income cover the cost of her care now? Is the inheritance money still intact - not being withdrawn monthly for her care? If possible (an attorney is needed) have her sign a legal agreement and update her will to reflect you get more because of caring for her. If she can't sign a will (dementia), you may have to put her somewhere and let her income and the "inheritance" pay for her care. That gets you out of this predicament and YOU MUST THINK OF YOURSELF FIRST.

It is time that your mother was placed somewhere for care and you need to get a job to support your family.

Why, oh why, don't people sit down as a family

Why, oh why, don't people sit down as a family BEFORE something happens and talk about EVERY POSSIBLE SITUATION THEY CAN THINK OF - caretakers, finances, the house the parents live in, wills, and the list goes on. I know many people feel uncomfortable or just don't want to face the fact that THINGS WILL HAPPEN AND THEY BETTER BE PREPARED IN ADVANCE. They must make this happen when things are going good. Wills need to be updated, instructions and wishes made known to all, and documented. Unless people are willing to do this, DISASTER WILL LOOM ON THE HORIZON AND HELL WILL BREAK LOOSE. Sit down today with all involved and make some definite plans - if you don't, it will destroy you when the shit hits the fan. DO NOT WAIT A SECOND LONGER.

I am in the same situation. I am the only member of the family to volunteer to take care of my mom 5 years ago in May. I quit my job because after 6 months of living with me in my home in upstate NY, she was crying about the cold weather. She had been in Florida for over 20 years. My sister lives 240 miles away, in NY. No relief from 24/7 care. I was working full time and leaving her home with my disabled partner to watch her during the day.
So when October came I quit my job and took her to Florida to her apartment and we've been doing the back and forth since then. Winter in Florida and Spring and Summer in NY. She got to fly back and forth with my brother, who lives in Florida, or my sister,my son etc. I see a big decline and can no longer do this. My brother was hesitant but now has witnessed her lack of cognitive abilities. Other health issues that make it difficult for her to travel. I was compensated for taking care of her and I used Adult Day Care services in Florida, 4 hrs per day. In NY it was too far to go more than 2 times a week. She only wanted to stay 4 hrs so it wasn't worth the trip. I went shopping while she was in there. So I wasn't really getting much of a break. Once in awhile I went to a movie.
When we all agreed to me taking this on I was supposed to get the Condo in Florida when she passed away. But now we have to sell it and keep the money in her account to be used if needed when her annuity runs out. My siblings agree I should get more than them but how much, not been determined. 5 yrs Of no life driving her to and from Doctors' appointments, day care. Taking care of all of her needs, hair dying, manicures, pedicures, nosebleeds, hemorrhoids, constipation problems. Brother lives 45 minutes away and gave me a break..on a few weekends when I am here 6 months in Florida. After doing this, I realized you can only do what you are able to comfortably handle. I can't handle the non- stop care that she requires now. I am done. Hopefully, when I get back to NY....I can find a part time job and get some healthcare insurance....which is also something I have been doing without. I give thanks to God every day for keeping me healthy. You deserve to be compensated for your time. Hope everything goes well for you in the future.

Did your mom have a will in probate? If so, get a copy of it if you can or at least find out what it says. If your mom made out her will when she was competent before the dementia ever developed, then you're not entitled to any more then your mom allowed in her will. Now, if there was coercion going on which is very common, then you may call your state bar association and ask for the name of an estate lawyer. You can get one who works on contingency and start first by opening an estate for your mom. Your next step would be to let your lawyer start an investigation and start your fiduciary duty's if you have access to important documents such as inventory and any financial accounting records. If you have no access, kindly let your lawyer know that you need help and they should be able to help you after your mom dies.

As for any written agreements, once signed it becomes a binding contract because you both agreed to it before signing so don't try to get more than what was agreed to in that contract. I know you may be financially strapped, who's not? Don't try to coerce your sister to change anything that was not covered in any contracts you may have signed. If the contract was said to split things equally, then that's what you do and don't try to don't try to coerce your sister to change anything that was not covered in any contracts you may have signed. If the contract was said to split things equally, then that's what you do and don't try to get someone to give up their share of a rightful inheritance they're rightfully entitled to. Just be thankful and appreciate what you get that's covered in the agreement as allowed by your mom if she allowed you to have it. Make the best of what you have and don't try to talk people out of what you're not entitled to, just do the best you can with what your mom let you have. 

Remember: 

There are people out there who are far worse off than you who would be more than thankful to have what you  have, so appreciate what's already there instead of complaining about what you don't have. I know it's easier said than done but this is a lesson to be learned. Don't look so much at what you don't have though you may have needs but look more at what really matters. Yes, money can buy what you need, a car can transport you and a home will shelter you, but it's the relationships that really matter. Relationships are more important but yes, you also have other physical needs. 

Again, appreciate what you are allowed to have from whatever contracts or wills may exist, don't try to get more than you're entitled to if you already signed a contract. If you need more money for starters, go out and get a better job with better pay and another smart move would be to get better education by going to school. You can usually file a FAFSA and get government grants for college that will open doors to better jobs with better pay 

Sending lots of love and support to all the caregivers out there! I was fortunate in some ways...I gave up 2 years of my life, but did get to see my Dad daily or every other day in his nursing home, and he was nothing but extremely loving and grateful for the visits. (I did go on public transit, so it was time-consuming but I felt that it was the least I could do...). Other than that, I was on a mission to renovate/update his house so that it could be put into saleable condition (and sell, hopefully for a higher price as well as more quickly when the time came...After all, we had a reverse mortgage to pay off as well as nursing home bills). I developed a lot of skills relating to home renovations and was happy to update the home. At the same time, there were a lot of nights when it was extremely difficult for me to sleep, as I needed more of a "sounding board" somewhere along the line. I kept wondering if there was a better nursing home for him (despite a "5 star" rating there were definitely gaps in staff training and medical oversight for some of his conditions). I visited 4 vets homes, but it turned out that the locations would be problematic for us all to visit. (Except for the local one which was affordable but very crowded...and had a history of being sued by relatives of guys with his exact condition). So-for better or worse, we kept my Dad where he was and we do have some tender memories of the time we spent with him in that nursing home. He passed on, and we were able to have a wake and funeral according to his wishes - with local friends and loved ones attending. And 2-3 months later we were very lucky to have sold his house to a family with kids who could benefit from the schools and location. All in all, it was for a fair, but not high, price and we just about broke even...I had to deal with one sibling not speaking to me for quite awhile because we were selling the house...But now it's more of a 'water under the bridge' situation. Another sibling was working like a demon the whole time my Dad was in the nursing home (to pay those monthly bills out of his own pocket), but at least very soon he should be repaid...As far as me being paid at all for all that time on renovations...it all depends on the sibilng's good will (and he has a bit of a blind spot about the value of what I was able to do). I can only hope that by talking to him and summarizing all the projects that at least he's going to pay me for the amount that I saved our family by doing a lot of the interior projects myself. Some of us as caregivers tend to be TOO nice, so I know that some self-advocacy is in order... I am grateful and relieved that things worked out as well as they did with my Dad...(but my own health/mental well-being was somewhat compromised for awhile, and I hope I can get my own life 100% on track with a new job in the near future.... ). Love and respect to all who are caring for the elderly.