How to respond to a sister that thinks because I have asked for help with caregiving I consider Mom a burden?

It's been awhile and while there's been some progress, there's not been any significant results = (

I can not get sibs (3) to agree to meager compensation I first asked about over a yr and a half ago (then $200/wk for live-in caregiving except for an outside 40-hr/wk job). I left a job in another state on a FMLA 5 yrs ago to help my mother. After many failed attempts at reasoning with them (and countless hurt feelings), a cost benefit anaylsis of the savings my presence/sacrifice has been to Mom, I can not get them to agree to meet with a mediator because they've continually dismissed my requests to greed. Very recently they agreed to paying me under the table (fraud) with no retroactivity, but have since pulled that off the table.

And most recently they are trying for the first time in a yr and a half to chip in and help out with Mom in 4 hr shifts M-F, 5 - 9 pm so I can have some time off after my 9-5 outside job, and some coverage on Sundays. Saturday coverage is still mine. It's about 40+ hrs that they've agreed to help cover. This attempt started on December 15th. I am covering almost half of those 40+ hrs as well as overnight coverage. It's been tense and awkward, but they are trying, right?!

My question is, since I have gotten NO WHERE in trying to reason with them, it was mentioned earlier that one could sue the estate upon her passing. Is that even possible? Is it possible without a caregiver agreement in place (bc they've refused that idea completely for various nonsensical reasons)? This would be my LAST resort, but might alleviate some of my stress and help me maintain focus while she's still with us.

LOL to all the above answers. They have covered it quite thoroughly if not eloquently. My only addition is to accept the fact that caregiving IS a burden - not that a burden is automatically bad: it is simply simething extra that you must carry and when you can look them in the eye and say that with strength, you will win. Good luck.

Thereisnotry-
You need to understand that the caregiver does have a job, and a very difficult one. Any caregivers that I know that are working, have home care come in while they are at work. Is caregiver getting paid for what he is doing? If not, he should be. What I would suggest is that you take two weeks of vacation from your job and do the caregiving job which will help you appreciate what the caregiver deals with on a daily basis. This will also provide him with some much needed respite and perhaps a new understanding between the two of you.

What about a caregiver who DOESN'T ask for help and doesn't get along with his charge and I do? I know his heart is in the right place but he's not helping the charge enjoy his life, he's just prolonging it. Man does not live by bread alone, he needs friendship and acceptance and respect. If I make Any suggestion as to care, I'm told I'm always critical. and I'm supposed to listen to caregiver complain about how hard it is when I wish I could do it. But I can't because I have a job and caregiver doesn't (a paid one anyway). Pray for us please.

Of course we should pack and leave when they visit but its not always easy I have no money and owe to a debt. This time is different as we need to talk about mum and a solution. This is the last time I will say anything to them I will demand my terms and conditions and POA then if they are not happy then they can look after her care. I honestly feel the stress of all this will kill me the only way i can look after mum is away from her house then ill be more in control in my own house and when they come to visit ill be gone and they will not have me around entertaining them.
gladimhere noone can blame us for not wanting anything to do with them they nearly drove me to a breakdown.
the thoughts of bitchface out laughing and having dinner with a friend has made me ill with anger.
Hopefully my bro can keep us apart tomorrow? I havnt pulled her hair since we were 7yrs old but am tempted. I am so sick of her talking down to me and treating me like mums my job and when she visits she on holidays? oh dont even mention to mum as she says leave her alone she works hard all year..........how am I so strong? how come i havnt lost it yet? when will i lose it? the only thing that keeps me going is that I will be a happier person one day and as both my sisters are so materialistic they will never be happy!!!!

When they come to visit is your time to leave. The first year I was here my sibs would come for a "visit" and expect to be fed and entertained- that did not last too long because I saw quickly what it was going to be like if I did not make boundaries for myself. Now when they come to see Mom I leave! That is their time to visit with their Mother and take care of her needs. It was not easy at first. They would try guilt. "Don't you want to visit with us?" ect ect ... No I want time for myself without having to be watching out for Mom every second. Well time to go to yet another MD visit with Mother. Hang in there.

kazza, I spend a hell of a lot of time fuming myself, today is one of those. Mom's sister is here for a visit. She always hopes to help my siblings see reason and hopes to help. I think it is a lost cause. Besides at this point it doesn't really matter I never want anything to do with siblings again. They have put me through he'll for more than two years now.

Sorry to rant but im fuming and just hope I can calm down by tomorrow can you blame me? she just makes my blood boil!

Yes gladimhere i think if he wasnt here id have had a breakdown! My sister arrived last night at midnight went to bed got up this morning showered,dressed,makeup then went to get her hair done then shopping now at dinner with her mate?
I told her we are having a meeting tomorrow re mum she said "oh what time as im meeting a friend for coffee"
I AM NOW TRYING TO CALM DOWN? my bro is arriving soon and thankgod hes here as I feel like slapping her. The carer was here for half an hour never met her before and said "well shes a great help". I am so nervous about tomorrow as she needs a bloody good talking to so, her mate for coffee is more important than her mums future care? When mum is gone I never want to see her again and I will tell her why. She even ignored the mums mess in the bathroom am so sick of her treating me like a hired help who the hell did she think was going to clean it up? fkn LADY MUCK all i have to hold onto is that I have some power over her if im going to look after mum then I will be calling the shots. I swear the next time she comes i will make sure shes here alone and force her to helpout shes a selfish B.

Kazaa, you are so fortunate to have your brother with you in this! Those that are not around to help with care do not believe it is needed, they are in complete denial and probably want to remember parent when they were vital and productive.

momhouseme, you are 100% correct that the non involved sibs are the biggest critics and do cause legal issues. BEEN THERE, DOING THAT!!

My friend and neighbours mum died 3yrs ago from als. Her sister was the main caregiver my friend only helped out once in awhile. Since ive met her and she sees how tired and stressed I am she is FINALLY realising just how tough it was for her sister and recently had a good with her and apologised that she wasn't there more. Her sister said thanks but has never spoken about how hard she found it and refuses to speak about it she says its just too painful.
im just glad that my friend got to apologise to her sister even if it took 3yrs? My brother wants my other siblings to apologise to me after the way they treated me but im not hanging out much hope but when this journey ends I will find it hard to be in their company.

Be careful in saying (fighting words) such as "then you take mom"because one day someone may just take yoiu up on that and you will lose your mom. There is no way I would ever let anyone have my mom after all the years we have been two. No one helped in any way shape or form. I would never threaten them with anything that would put mom's care (with me) at risk. I am now here for the duration. At the onset 6 years ago, I was trying to get mom back to her hometown without success or cooperation from sibs---six years my home is mom's home and this is our life---In fact if something happens to me, I have documents that instruct my doctors etc to contact persons I have provided to them and not POA #2 which is my sister. My sister knows nothing about my mom, her needs, her feelings, what she loves, likes and dislikes nothing. My friends do know! I have my money arranged such that my identified friend will come and get my safe deposit box key where they will find cash to provide the care mom needs from A-Z which can be used until (in the event of my death) the trust information is implemented. My power of attorney if I am incapacitated can write checks for mom's bills as well as mine (springing POA)--mom put down by sib as POA 2 never knowing that sib would never speak to mom again...plan for the worst and hope for the best.

I agree : don't ask questions, quit begging and asking for help (asking once or twice is enough thereafter the answer is quite clear and it makes you look foolish to keep hounding), get paperwork in order, know your rights and responsibilities (you do not have to provide regular or occasional email updates): your siblings are adults and if they have had children then they do have some idea what caretaking might be about so do not use their "denial" as an excuse for their behavior/absense in caretaking. If you ask a person once or twice and they decline then your job/responsibility is complete and you are left to decide if you wish to continue with the role of caretaker. People that wish to help or be involved know full well how to do it. Don't make excuses for them. Get legal matters in order bc they will be examining every move you make (the non involved are the worst critics and can cause you much legal anguish). When calculating costs of caretaking i suspect it is true that you must consider the fact that you might have to pay rent however I doubt it. Here in CA a live in caretaker gets free room and board and also compensation/salary for hours worked. Check the laws in your city/state and follow them to a tee. Keep top notch records because you will be asked down the road--do not co-mingle your mother's money with yours as it is too difficult to separate whose is whose when it comes time for liquidating assets (for medicaid or other), sharing inheritence and more. This is not a game so protect yourself in all the ways people have suggested. Family caregivers are typically permitted (even by medicaid and you can call them to verify) to be paid In CA medicaid will pay a portion of monies to place someone in a nursing home; likewise they will pay an in home caretakers an hourly wage for a certain number of hours (they don't cover 40 hours a week or week-ends). This of course is when/if your mom must go to medcaid for support. In the meantime, you can still ask the agency about being paid, current compensation amounts and more. I have plenty more to add but I think you have enough for the moment. The accusations have begun so let this be a warning to you that you need to protect yourself emotionally, financially and legally...do not delay this is likely to get worse before it gets better.

Too many times on this site I see sib's who are'nt involved and /or don't even live close by are POA. It makes no sense and that's the first thing anyone should do GET A ELDER CARE LAWYER. Know your rights for Mom/Dad and "YOU" and get a good elder lawyer------

I see on this site where some caregivers don't have POA. If possible you should see a lawyer and get one. Who better to have control of your parents assets and medical decisions? I made sure I was made POA since I do everything for my mom.

sweetie, i totally understand what you r going thru . i took care of my mom for 61/2 yrs till she passed in aug of this year . i didnt recieve a cent from anyone and i was there 24/7 . u have got a lot of good advice so i wont repeat what others have already said . take care of your mom if u love her and think its the right thing to do . remember when she goes u will be the only child who will never suffer from guilt , and that is something your siblings will have on their conscience . all the best, stay strong, and we r on your side . :)

My post stroke Mom just came back here to Mn. to live near my brother and I --we pretty much divided the work that has to be done and e mail each other about the activities with Mom. We found her a lovely place called Summit Hill which is a large beautiful assisted living building complete with staff and all the beautiful things a lovely hotel can offer. (it used to be a hotel) Mom only takes in 1,800.00 a month and the starting price for rent there is about 3 or 4 thousand. Look into Elder waiver---which is what we did. It takes some work---took my brother and I about 3 months to get it all together --but we did and Mom lives in the apt. that used to be a penthouse. They do have a memory care unit there too. I'm not saying it's perfect but neither my Brother or I could have handled care with Mom---I've had medical issues all my adult life with my kids and Brother has had med issues himself. It's all out there but you really have to investigate and I hate to admit this but the computer I hate so much became my best friend---I met through phone calls and computer so many people who wanted to help. Some didn't know how and others were like bull dogs for the elderly and their care takers. God Bless--(whoops can I say that in a public place anymore?)

....Because she is and you're the one it sounds like carrying Mom---so tell SIS--you need some help--because the weight is heavy--and it is. Why deny it? You're human aren't you? How much are you supposed to take before you stumble under it all? We all need help it's only human --but we somehow think we have to be super human and carry the whole world (everyone elses) on our shoulders. YA SIS---THIS WHOLE THING CAN BE A BURDEN SOMETIMES AND I NEED YOUR HELP LIFTING.--wonder how fast little Miss High and Mighty will offer help. Don't be a Martyr---it really isn't attractive--or healthy--not for you----and not for your family----YES SIS--MOM CAN BE A BURDEN AND I NEED YOUR HELP!!!!

I have been told that you can bill the estate, I suppose anything can be billed and payment negotiated. You should really see an attorney. There is a website AVVO where you can pose questions to attorneys in your state and receive responses, for no charge. You should check that out.

To gladimhere -- oops, forgot to mention I've been told that w/o a signed care agreement in place, there's not a way to collect compensation after the fact.

To gladimhere: How does THIS work?
"If nothing else, WipedOut, you can bill the estate when she passes for your time. That would then require probate and your bros will not want that either."

Oh, My. I don't have time to read through the responses. But I can tell you I relate and understand your situation. Here is what I did: I made a spreadsheet and detailed all I did for Mom, time that I took care of her (I worked FT too), and found the hourly rate for caregivers in my area. When I compiled all my hours, multiplied it by the hourly rate of a caregiver in my area ($25.00/hour) it made SUCH a strong statement. The facts spoke for themselves. When Mom declined to the point that I was unable to care for her anymore due to her level of need, the responses from my siblings were really awful - because I was infringing upon THEIR time and by setting a boundary, I was clearly going to inconvenience them.

With that said, you MUST do the same with a spreadsheet and work out the numbers. Send info in an email (TRACKING) and give them deadlines.

It will be tough. But you can't do it anymore and your mom needs more care and your siblings need to now own it.

Bless you.

Check out costs from a home care agency. Hire one to watch over her while you are gone with mom paying for it. There are always options for a respite stay at an assisted living facility. The prices are not too terribly high compared to home care. Assisted living facilities use this as a marketing opportunity. If mom is on Medicaid they will also pay for her stay while you take some much deserved time off, though I don't know for how long.

I think with siblings like that, no matter what you say you lose because everything they say is a copout. Get a lawyer - maybe the lawyer can tell them a few things.

I have asked my siblings to take turns with help to no avail. My mother can be left alone for now. My one sibling tattles to my mom when I ask for help and my mom gets upset. My mom feels like she is a burden when this happens. My mom won't except outside help, she tells me when the time comes she wants to die at home. I am going away for two weeks soon and talked to my mom about going to live with my sister for that time. She is strongly opposed to doing this. She says it's too much of a hassle. My sister also has a new tactic she tells me she is going to talk my mom into going to live with her. She says she will take full responsibility for her. I know she's bluffing, but if I say go ahead she will tell my mom. Mom will get upset and be made to feel like a burden. I don't want my mom to move, I just need a break sometimes. It's a battle that can't be won. Believe me I've fought it.

Ihave often thought it is best to receive a bit of pay for caregiving. Otherwise resentment grows and one might even expect more than what is due. Best to spell it all out up front. I've often wondered though when being paid, I don't see how an hourly rate would work. I can see an amount for a minimum number of hours of 'active' work (driving, cleaning, cooking, etc.) and for "hanging around" time, (neglecting your own life). Of course, you get room and board, but you don't have a lot of control over the environment, so that's part of the deal. Bravo to all the wonderful commenters and advice so far!

Wipedout2013: If you could hear me, I am screaming my lungs out for you right at this moment! I am in somewhat the same situation and I am more than angry and frustrated with my siblings for basically the same reasons you are.

I too care for my mother and have for about 7 years. I am considered permanently disabled, so I do not work outside the home however I do work 24/7 in the home. I have Financial and Healthcare POA's from my mother, so my siblings have felt like, well Mom likes you best, so you handle everything! I have done it for a long time because Mom was able to be left alone while I ran to the store or the doctor, but she is worse and I cannot leave her alone any longer. Her behavior has become more difficult to deal with and it is taking a very large toll on me, mentally, physically and emotionally.

I not only care for Mom but I take care of her house and property and I mean everything from painting to plumbing (and Im a girl) when it's needed, all to save Mom's money. The thing is this website has helped me to realize how much I am being taken advantage of in this situation. It's not that I did not realize what was happening all along, but I just kept stuffing it all down and not saying anything, basically allowing myself to be abused

Is your mother by any chance on medicaid? If she is you can be paid for taking care of her. Even if she isn't you can sign a caregiving contract that is binding to provide services to her and be paid. You may have to see an Elder Law Attorney to find out exactly how to do this.

You have to turn the tables on your brother and sister, they are trying to tell you that you owe your Mom her care, because she is letting you live in her house. You have to turn the table and say, "Because I am caring for Mom, I deserve free room and board and/or a salary."

Call some agencies and find out what they charge to have a caregiver come into your mother's home to care for her. Most are $25 per hour with a guaranteed 4 hour minimum. There are some people you can find who will work for $12 an hour as well but I am not sure what you would be getting. Get written information from all of them, even ask them to come to the house to talk to you so you can get them to write out just exactly what they would charge. Then call and find out just how much it would cost to put your Mom in an Assisted Living Facility and a Nursing Home. Once you have all of this together then you need to present all the information to your brother and sister and tell them....look either you can take care of Mom yourself, or you can put her in one of these facilities and pay between $7,000-$10,000 a month, or you can hire outside help at $25 per hour or you can pay me $--- an hour. I need compensation for my time.

Good Luck and God Bless!

Send mom to stay with bro POA for a month, enjoy your time off, and he will change his mind. And a bunch of b.s. On the 5 year look back by Medicaid, that is for gifts only, not contracted care by you if documented in compliance with regulations.

I would divide the care evenly amongst all the siblings. There, no one gets paid and it is totally fair. You have your days off, they have their days off. Everything is scheduled. Problem fixed. They will now learn what it is like.

Wipedout! all I can say is that this time last year I nearly had a breakdown WHY? oh not because my mum was acting weird or becoming abusive I could just about cope with that BUT my so called F.A.M.I.L.Y they treated me like crap a hired help who as you say should be paying my mum rent,mums been good to YOU? etc...... I wont bore you but dont let them get to you with thier guilt and sefishness. I do what I can now for mum AND for ME when mums gone I will deal with them and let them know how far they pushed me. As my therapist says take back your power! Get help in from other sources and accept this as doing it without them when the time comes they will have to deal with their guilt and that is going to be tough for them! Hugs as this is the hardest thing about caring with dementia that family dont share the responsiblity.
I would agree that before you give up on them go away for a wk and get them to take over and just see how hard it is.
My siblngs have no idea whats ahead ive tried to get them here but a few days isnt enough to really see the reality of this. Good Luck!