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I had been taking care of both of my parents for over 2 years. Since my father passed away last year, I have been taking care of my mom. She lives 30 to 1 1/2 hour away from me and for a long time, I have been going to her form 3 to 5 times a week. My mother has dementia and she has many health issues. She used to smoke 1 1/2 packs to 2 packs a day and now with the help of 3 to four aides, she smoke 1 to 3 cigarettes a day. She was in hospital many times in one year! Since she fractured her hip a month after my dad passed away, she cannot walk around and needed to be reminded to use her walker. To make long story short, I am taking in a way taking care of her 24/7. including taking care of her bills. My husband has been unemployed for 2 years and I have some health issues and I am in a sense working full time taking care of mom. I am not getting paid to do this and my family and I are financially strapped! I don't know what to do about this! My sister lives out of country and the original agreement was that we get equal share when mom pass away. I don't think its fair. Also I need to make some money in order to take care of mom! I told my sister that if things heading this way, my family and I can lose our home. She did not say anything nor did say anything to support me. I am so lost and scared and don't know what to do anymore. Any suggestions?

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Some siblings, like mine, have no sympathy for the caregiver. My sister lived with our mother for years. She took both my dad and mother into the home until my dad divorced my mom after about a year. My mother left her all the household Furniture which was worth a fortune with the artwork plus additional funds over and above mine. A loan my ex-husband defaulted on, cost my parents $50,000 which would mean 25000 + interest would be part of dads and he originally intended to take that out of any inheritance. Now it appears we will be left penniless except for some equity in the house which has a reverse mortgage. My sister has a very substantial and well deserved pension plan and retirement coming. She also has quite a nest egg. Before I came to Dad and did not have disability, I was penniless. Once dad goes, I will have nothing as I have to contribute for actually all I get from Social Security to keep our household going. My dad said it would be punishing my sister for being successful to not give her half even though he would give me the Furnishings which are basically crap post-divorce stuff. After his debts are paid, it's likely there will be very little except for the equity in the house. The plan is for me to try to stay as long as I can but I don't think I can afford the upkeep without a roommate so I'm hoping for a Golden Girls type arrangement. Ultimately, I will be left despite all my devotion to my dad, out in the cold.
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In more practical ways: Do you log in how many hours you spend with her? Not driving to her? Then log that time spent. What are you doing for her? Log that too. Keep records in a nice booklet and make sure you date the pages for each time you visit, in fact, ask if a witness can initial it, such as, a nurse or home care visitor. This will prove honesty and integrity and not just proof that you had expenses. Calculate the mileage you drive and the cost of gas too. Then multiply that amount by the number of times you do visit her in person, and then how many times more you might be driving for supplies for her. Keep receipts and staple to the corresponding page. I find that these are not only helpful to the final outcome for wills and such but to discuss frankly and openly with your sibling. This week I spent X hours with Mom, and X hours driving, and all of this will go for naught, once you start getting accused for stealing money from Mom's wallet. I personally have no respect for my siblings anymore. So, please record on paper if you happen to be short for gas, how much is being taken out and to minus that from the total of the week, unless you're paying that back. I am only going by what I saw my sister do, go into my mother's wallet to take out a $20 as I have dietary restrictions and did not expect to spend four hours at my mother's place, let alone an entire day and asked to spend the night too. I had to buy food for the evening and she gave me the money from my mother's wallet, albeit I protested, I was hungry, and my sister assured me my mother was "well enough off" as my mother never told us if she had money, but acted like she was strapped all of her life for money. I would say that documenting all the times you go over is going to open your eyes too. I would go over for 4 or more hours about 3 or 4 times a week, and had to stopped once I realized that the more I go over, the less the siblings go over. They were trying to run to have their own lives, whilst I was to become the "you're not working" one who has no right to take care of her own health issues. I am seeing a neurologist, getting tests done, and have no desire to die of a stroke from the stress of being wanted and loathed at the same time, in my own case there is very little in the way of being respected, being accepted, and being trusted. The less I went over, the more they picked up the slack. The only difference is, we have no respect for one another, as far as the siblings go because as soon as You get sick from the stress, you will see it is more important to get a better paying job than to help out, don't let guilt make you lose your livelihood because as far as you know, that house she owns, may need to pay for her retirement home and care and hardly anything will be left over, never expect an inheritance.
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Wow, Standing! That was great! Your post...I could actually “feel” everything you wrote! Whew! You are very expressive. So admirable

Ikle...There’s certainly nothing wrong w/being paid for what you’re doing & if you can have that conversation w/your LO then do so. Also, I don’t think it’s anyone else’s business but if sibs aren’t informed about it at the start it could be a problem later.

Just one other thing...as I’ve stated in a previous post...the whole concept of “you chose to do this so...” is just soooooo off base. Yes, I think I always knew it’d be me, the youngest, that’d take care of our mother but No, I had absolutely NO idea what’d it’d really be like or turn into. And, from what I’ve read on this site, it’s only going to get worse.

So no, this was not a choice. Not even close. I believe that there are a lot of us who simply can’t turn our backs on our LO’s; we just have that sort of humanity built into us. “Built into us”. So it definitely is not a choice. We do it as naturally as breathing.

But hey, this is what’s so great about this forum. The exchange of thoughts, ideas, suggestions. And I do respect everyone’s right to express them. I sure have learned a lot here & have received more support here than I have in my “real life”! 😻 So thanks, y’all.

Ilke...good luck. I hope you can figure out a way to be compensated for all you do.
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Seems like parent should pay for care and because it's hard to figure out what to
charge, consulting a specialist would be best bet. I would think twice about being
primary care giver, think about live in help if parent can afford this. That way you can maintain your career. Most reimbursement is done on a pretty low hourly or very
low per diem rate.

Make sure you are being reimbursed at an agreed upon rate. If it's too low
consider other options. Many facilities are well run and if you are looking out for
your parent, they will be given timely reasonable care. Assets should be spent
on parent for their reasonable care and entertainment (ie not for luxury cruises
if it means you'll have to be shouldering their care costs down the line)

Whatever then is left over can be the inheritance. Just remember that many seniors
outlive their money/assets so careful planning is a must. Some siblings appear to
selfishly want one sibling to do all the care giving gratis so as to preserve their own
inheritance. Better to come to an agreement now and receive compensation up
front for your efforts and out of pocket expenses. And verbal agreements are
basically useless. Even written agreements can be contested.

Get reimbursed for your out of pocket costs for care (ie stuff you've bought specifically
for parents care or housing expenses) and pay yourself for care at per diem rates if
you can afford to accept such low reimbursement rates. Personally, if your parent
can afford live in care or quality AL, that would be better route imho. As you'll have
your career to help you once your LO passes. Those of us who ended up doing stints of
full time care have spotty employment records, poor health and that's a tougher
hole to get out of.
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IHSS will pay the going hourly rate for home care for Medicaid patients. However, in addition to the many hoops the state makes caregivers jump through, spouses cannot be paid for household chores like food prep, cleaning and laundry, even if the laundry is three times a day sheet changes. The caregiver is considered an employee of the patient. If a non relative is hired, they can be paid for meal prep, cleaning, laundry, transportation, etc.
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just finished up my carrear as a caregiver for my inlaws after two years of 84 / 6 a week the couple were put in a home by the others after hireing a lawyer to protect there inheritance, My reward ? you got to use there vehicles to take care of them,take them to doctor appointments we didnt charge you anything except making you pay for gas, and buying your own meals. you put ware and tare on the vehicles, taking care of them so you owe us. Wait the vihicals belong to them not you you didn't let me do nothing, they would have had to drive to to these places no matter what. and many other things like that were my thanks also my wife was cussed out throughly because our kids came to visit the couple and there's didn't so the couple like our kids better, well why didn't for the two years I took care of them,bring them for a visit ? I couldn't, Why ? just couldn't. This is my second time of ending a family caregiver role. you may get thanks from some but they don't like to be beholden to anyone so just exspect a cussing out No thank you and no compensation for your work .when money is involved what is right is not considered. your there caregiver what are you going to do stop , leve them on there own with no care. No matter how right it feels that you should care for them, there's no money , you may have problems keeping your home and paying bills. But in the end its up to the others if they give you anything , and some people can justify anything in there own mind. and after it's all over you have to pick up the pices and restart your life with no money.just the knowledge you did right and the others didn't, not a real good compensation, and the reward in heaven business is a nice thought but getting calls from bill collectors makes it hard to remember. Wish i could give you a happer out come. but I think you have already figured this all out and trying to do something about it. The only thing i can say is your not alone and hopefully you will have better luck than me.
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Legally, your problems are not your sister's responsibility. If she's beneficiary, then she can decide whether or not to divide with you unless there's a will stating differently.
The courts won't care about your husband's job or your personal problems unless there is a legal will and it seems as though your sister doesn't care either.Call an elder care attorney and pray.
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when it comes time for the will to be read all your work will be for gotten they will come back with,well I cleand the house once a month,or picked up meds onetime,when it comes to getting the last time to get money and they lose that little security there going to try to get everything they can and justify it.spent 14 years settling my moms estate
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I have said this again and again and apparently no one is listening. EVERY HUMAN BEING, WHILE THEY ARE MENTALLY ALERT AND ABLE, MUST GIVE THOUGHT TO THE FUTURE AND WHAT HAPPENS IF....... The trouble is they don't do this and then hell breaks lose when the "if" happens. If your mother is mentally alert, and can handle a document as to the financial arrangements, fine. But if not, because it may be way too late, I can think of no other solution than to place the mother into a good facility so her funds are used for her and what is left will be split. I was a caregiver for 28 years and I can tell you, it is a job no human with an intelligent mind would take on - love or not. Those saints DESERVE TO RECEIVBE SOMETHING FOR DOING THIS. And if not, consider a facility. Good luck. Don't wait until the problems and ongoing carecause you to loe everything in hyour life - job, family, marriage, relationships, health, etc. Look out for ourself first....You owe it to yourself. This is YOUR time to live.
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The state will assist her with in home care if she qualifies and in Portland at least the state will pay whatever caregiver that is be it family or private hire 14.75 an hour.
Taking care of the bills and such is a role all family members take on themselves regardless of their own circumstances.
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I strongly agree you should get paid but don't try to coerce someone else out of their half of the inheritance. Doing so speaks volumes of you and what kind of person you really are, just don't go there unless you yourself want to face legal trouble over it. Wanting to go for more than your share of the inheritance makes you sound very very greedy and that's just how you come across. Oh I strongly agree you should get paid I strongly disagree on trying to take away someone else's share of the inheritance that your mom most likely already arranged for each of you to share equally. Just go for the pay and be happy with what you get because so many people out there and up getting absolutely nothing. Don't cause straight through sibling rivalry or your sister may be likely to resent you
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The sister is out of the country, so she cannot provide care. that forces OP to be the caregiver. She should get all the inheritance, in my opinion. However, Mum now has dementia and too late to change her wishes legally without being contested. Only way is to get paid upfront from Mum's assets for caring for her. Yes, caregiving should be done out of love, with no expectation of money. However, when one is not able to work a paid job, in order to take care of someone, then, they need to be paid for it first and foremost before any inheritances are doled out. Nobody should have to have their life swept away financially for doing the morally right thing by their loved ones only to have a sibling who did nothing leave with half the inheritance while the caregiving one struggle sot make ends meet. Perhaps a lawyer needs to be consulted at this point since Mum's wishes cannot be changed, and alternate way needs to be found for Op to get paid first from the estate, with anything remaining being shared equally.
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There are many other options. Can you move her closer to you or in with you? If not, can you move in with her? That would save you housing costs and off-set what is it costing you to care for her. Since your husband has been unemployed for 2 years, why is he not helping and then you could get a job. Check with your state, do they have IHSS which could provide services? Have you called local senior services agencies that may have other options? If these are not viable options, then I would just propose to my sister that I be paid X for my time. Don't bring up that you could lose your home. The issue is that you are spending X number of hours a week caring for your mother and since she (your sister) is unable to share in the responsibility, you believe that you should be compensated as a caregiver would. Hopefully you can get this resolved quickly. Good luck.
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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.
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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 
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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.
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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.
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Why, oh why, don't people sit down as a family
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It is time that your mother was placed somewhere for care and you need to get a job to support your family.
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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.
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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.
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FYI: This thread is three years old, and there were over 100 answers to it 3 years ago.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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