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I am the full time caregiver of my 88 year old mother, who has dementia. My brother, who became her power of attorney while she still lived on her own, has control over her social security check ($1020 per month) and her savings. (around $30,000) He gives me enough to cover her expenses, which I was fine with initially. However, my husband feels that we should be compensated for our time and effort also, seeing that Mom does have savings and receives a check every month. I am reluctant to broach the subject with my brother for fear of appearing to be selfish and a money grabber. Hubby feels we are being taken advantage of. This is causing some discord between hubby and me. Honest thoughts please.

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By taking care of your mother in your home, you are saving your brother from writing a check for her care in an assisted living facility. The arrangement you have is not fair to you.
As a caregiver, I am compensated for taking care of my father-in-law. He would have it no other way. He knows I devote a great deal of my time towards him. This includes making sure he is always in clean clothes, changing his sheets, making three square meals a day along with snacks, getting him to the doctor, barber, appointments taking him on outings, making sure he gets in and out of bed safely, and has a healthy amount of interaction. I do have help come in to bathe him three times a week. He is 89 years old with Parkinsons, dementia, and has a stoma as a result of Bladder cancer. It is a challenge to say the least. Clearly your brother needs to realize this is not an obligation a senior adult child must do for a parent out of "love." You need to spell it out for him and ask if he and his wife would like "a turn" as it is overwhelming for you and your husband to do alone.
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I think you and your husband should sit down with your brother and tell him how you feel and come up with a plan either that or he needs to hire aides to go in and do the care and when he finds out how much it would cost for this not to mention the days the aides him and say they will not be there at the last min. he may very well be glad to pay you for your time and if he does not agree he can make arrangements for the care.
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How about inviting your brother over to stay overnight a few days. Ask him if it's okay that you and your husband take a whole day and night off to rest. If your mom has dementia, like my own father's Alzheimer's, your brother will instantly realize where the money should go.

Later, bring up the subject of the money. Ask what he plans and uses the $1,020 for, if you're not getting it all right now. I think if you're feeding, housing and caring for her, your expenses and time easily run into that whole $1000. If I was your brother I'd have no qualms about giving you the whole $1,020. Or I might say that it's being put in savings that will be used when she needs more intensive arrangements.

In actuality, the $1000 per month and $30K will not be enough for an assisted living situation. Sorry I don't have a solution to this. I myself care for my father and use up his $600 in social security each month. And we already used up all $20K of his savings for medical, travel to see the grandkids, etc.

When my dad was living with my brother the social security went 100% to my brother, and I do have to say I don't think he fully utilized it well, he being a typical American with maxed credit cards and such. We got into some arguments over it.

But when my father came to live with me, my brother never said anything when I asked him to hand over my father's ATM card. But I did have to ASK for the card...

Maybe it will help you, my exact words were, "Hey, do you have dad's ATM card?" Not much else needed to be said. I was expecting him to make a stink about it. (The social security is automatically deposited into my father's checking account)
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I feel that if she lives with you, and you are her primary caregiver you should have POA!!!! you need to talk to your brother and have things changed if he refuses you can always call Dept of aging in your area and ask them for advice
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Thanks for the good advice and support from everyone. My family seems to feel that I should take care of Mom out of love and not expect any compensation. They don't seem to understand that this is a 24/7 job. She has dementia, paranoia, separation anxiety, and fear of the dark to name only some of the issues I am dealing with. I do love her dearly. That is why I don't want to see her put in a nursing home. I feel that her money should be where ever she is, and handled by whoever is taking care of her but I don't have any family support. At least nobody has spoken up. My brother who is POA seems to think that as long as I am compensated for her personal needs I am not entitled to anything else.
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Hi Bizzylizzy,
If your brother won't come visit, how about suggesting you leave mom at his place for 3-4 days so that you and your husband can take a weekend break. Nothing like walking-the-walk to get the "talk" past just talking. I'm sure your husband would LOVE the idea. No need to feel any guilt at all, what's not good about grandmother getting to spend quality time with her other children and grandchildren. : )
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you probably need a lawyer to sue him. If he hasn't helped you and does'nt offer to pay you, he's probably trying to enhance his retirement on your back. Remember slavery was abollished a long time ago!
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I left my job 2 years ago to take care of Mom 24/7. I have 6 siblings that don't get how draining it is. It's like pulling teeth to get one of them to cover on a weekend so my husband and I can have a few hours to ourselves. Mom has Parkinson's,anxiety, depression, and to top it all off, her dementia is progressing to the point that she cannot be left alone unless she is restrained in a chair. She is in constant motion and falls as soon as she tries to get up without assistance. I am lucky in that she will sleep through most nights for 10 to 12 hours, but then there are the wet pj's and bedclothes to deal with every day.
Although I do get compensated by her to make up for the salary I lost, it no where near is enough for the time and work I put in. I do not do this for the money. I feel she should be able to stay at home for as long as I can deal with her. But like all of you, we do have bills to pay and invariably end up using our own money to pay for their food and other things we pick up with our own shopping. Unfortunately, the rest of our families don't see this, and don't want to hear about it.
The one thing that keeps me going is the fact that when she is gone, I won't have to feel guilty about not having done my best for her. Although I have had some issues with my siblings, most of them have her best interests at heart. I'm sorry for those of you who are dealing with family that just don't get it. I'll be thinking about you and hoping that everything works out for you in the end. Hang in there!
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Unfortunately, as the replies indicate, this is not an unusual scenario. The best solution in my view is for you and your brother to come together on behalf of your Mom.

The way I approach this with the families I work with is to conduct a joint conversation (in person or by conference call, depending on logistics) to set objectives and expectations and outline a process. I then meet with each party privately by phone or in person (in your case, you, your husband, your brother, and his spouse/partner if he has one). I am assuming that your Mom's cognitive impairment is at the point that she can't contribute to the conversation, but if this isn't the case, I would meet with her privately too.

Once I've given each person the opportunity to share his or her thoughts and concerns with me in confidence, I provide feedback regarding the areas of agreement and the areas where the parties differ. I often find that there are many more areas to agree on, but sometimes it is effective for all parties to see this for themselves. We can then focus on reaching agreement on those areas of disagreement. I facilitate this by suggesting alternative solutions that may require compromise, or by making strong recommendations where I, as an objective third party, believe that there is one solution that is in your Mom's best interest.

-- Sheri
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There are plenty of posts on this topic on this website. And may I say WELCOME TO THE CLUB...and "let no good deed go unpunished." Oh, yeah, tell your siblings how hard it is and see how fast they run in the other direction.
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Dear Bizzylizzy,
You are absolutely right in stating that caregiving is 24/7 when the patient has Alzheimer's or Dementia disease. I do not think your husband is all that concerned about the money. I think he fears he is losing you. You say you love your mom dearly and don't want to see her put in a nursing home. Trust me on this since I am giving you the male perspective. Your husband reads a statement like that and thinks "She cares more about her mother than she cares about me. Where does this leave me a couple of years from now when mom passes away and I have been forced to live on the back shelf for what should be the golden years of my life? Maybe I need to escape now before it is too late." I strongly recommend that you and your brother look into Professional Home Care Agencies that specialize in working with Dementia or Alzheimer's patients. You say you are dealing with paranoia, separation anxiety, and fear of the dark. Have you been trained in how to handle these issues effectively or are you just winging it? Do you attend caregiver Support Meetings sponsored by your local Alzheimer's Association? Since your husband is also living with your mom's dementia issues, does he understand how the disease affects people and causes them to do and say things they do not mean so you cannot take it personally? I don't want to get preachy here but please think this out. Sometimes doing the RIGHT thing feels all wrong and doing the WRONG thing appears to be nice and kind. But there are times when true love is as cold and hard as steel.
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My brother has POA and I was caring for my mom. We would ask for money all the time and he would not give us any . Said he would take care of her when she needed it. Finally we had to get a lawyer to Try to get POA out of his hands and get her savings. She was living off her SS only. I was working . Anyway we found out he had used all her savings. He said he had her permission but she just forgot. We will never know. Don't wait has long as we did. Do it now.
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A comment re: Goldie's comment. If her mother has dementia chances are she is not legally capable of signing another power of attorney. I would suggest she seek the services of an attorney specializing in elder law. The last thing she needs on her plate is an undue influence suit courtesy of her brother. She doesn't say whether or not her mother is in a facility or in her home. If she's in a facility, I'd have all of the bills sent directly to the brother. Since he is the power of attorney, he is responsible for all of the bills. As for compensation, forget it. Sounds like the brother is too cheap, and asking for it could make things worse.
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Lizzy, All of the above advice sounds good. Maybe this added information will help u a little. My sister was in an assisted living facility for two months. This took place in a very small town in northern Michigan. She had a semi private room. Had three meals a day and they made sure she got her medication and was bathed and taken to the doctors if she had an appointment that the family couldn't take her to. They charged her $2500. a month. A facility in a little larger nearby town charged $3500. a month. I can only imagine that in larger towns it would be even more. This may give you and your brother a little light on the subject. He might be more willing to help compensate you if he is aware of what it costs to live in a facility.
Hope you guys can work things out. Dane
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Anyone know of a chart or guide to tell which states allow family caregivers to be paid, and under what circumstances...even with the elder's own funds? It's too close to financial elder abuse for a family caregiver to be paid, too many freeloaders and not enough real care. I know why there would be laws against it, but would sure be nice to know what the situation is nationwide.
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i have parkinsons, my two brothers are in charge of my savings and i recieve disability, i currently have a good friend who has also been my caregiver for the past year or so,, at points in time i have found it necessary to have him around full time although it isnt like that all the time. some days i am pretty ok. my quesstion is what can i do to compensate my caregiver, as it is now i provide food and a place for him to live as well as pocket money. he hasnt been able to work. there is more to this story bit id like some feedback
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Has your caregiver asked for more? Do u feel u r under compensating him for his efforts? I really don't understand what u r feeling or asking. Dane
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Onelove, as Parkinson's is a physical problem and not a mental one I am confused as to why your brother controls your savings. Apparently you are living on your disability check and manage with the help of a seemingly devoted caregiver. As to whether you are compensating your caregiver fairly, this is something you need to discuss openly and honestly with him. If your disability check limits what you can do for your caregiver, and you wish to do more, you will have to gain access to your savings. It may be that your caregiver is satisfied with what you do for him currently. If, on the other hand, you are at a point in your life where you want to handled your own finances you should discuss this with your brother. It is important for your self esteem and happiness that you do everything for yourself that you are capable of doing. If your brother is handling your savings merely out of love for you, then he should be willing to transfer enough into your checking account to meet your reasonable needs and wishes, including monetary reciprocation for the person who takes care of you. But your first step is to discuss this with your caregiver and decide, with input from him, what would be fair compensation.
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Keep track of all of your expenses for as long as you have her. Then when she is gone make him give an account of what is left. He could be spending it too. But I think the person taking care of their mom or dad should get the SS money. He should give you her share of all utilities and food. Give him a bill for it.
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deefer, your sense of balancing complex issues is nothing short of remarkable. I understand. Hugs.
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Onelove, I am going to try to read between the lines. Is your caregiver also your partner? R U thinking that if u pass away that you would like to leave him something and u wouldn't want your brothers to object?

I disagree with bizzylizzy that Parkinsons is just a physical disease. I believe that different people have different symptoms.

R U feeling vunerable at this time?

A big hug to you. I find this group very understanding and open and very willing to help with their advice. Don't be afraid to discuss your feelings. Dane
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Parkinson's disease is a brain degenerative disease that impacts motor control, the ability to speak, and other physical functions.The National Institute of Neurological Disorders and Stroke, part of the U.S. National Institutes of Health (NIH), states the four primary symptoms of chronic Parkinson’s are tremor in hands, arms, legs, jaw, and face; rigidity or stiffness of the limbs and trunk; slowness of movement; and impaired balance and coordination. Patients may have difficulty walking, talking, or completing other simple tasks, and “no drug can stop the progression of the disease.”

Parkinsonۥs symptoms appear gradually and usually worsen over time, but because it usually develops slowly, most people with it can live a long and relatively healthy life

I am no expert but I can find no studies that show Parkinson's disease to affect one'a ability to think and reason. I was merely encouraging OneLove to do what she thinks is best for herself and her caregiver. One should never let a primarily physical disease take away one's control of one'e life if possible. Now, I do realize that dealing with such a devastating disease can lead to depression and stress. These symtoms should not be ignored, but they don't necessarily mean one can't make one's own decisions, especially regarding one's own finances. OneLove did say that she was not revealing the entire story, so there may be things that we aren't aware of that explain her brother's decision to handle her savings. I am assuming, based on what she said, that she is handling her own disability checks. In essence, I think she should do what she wants to do, whether it makes her brother happy or not, unless there are circumstances that we aren't aware of. I did not mean to diminish what she is going through at all. But stressing out over this decision that she is trying to make is not good for her. Her brother, hopefully, is helping her manage her money out of love and concern for her. This could be a sign that he would be more open and agreeable to her wishes that she might think. She should decide what she actually wants to do and discuss it with her brother. If he has valid reasons for objecting to her decisions he should be open and honest with her. But ultimately, OneLove is a grown woman and should make her own decisions after listening to input from whomever she desires to bring her problems to. This is just my opinion and I dont claim it to be the one and only solution. The points you make are valid too and I respect your opinion.
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The most ideal situation is for all family members to share and devote each of their time out of their own true and genuine love for their own parents or loved ones. Unfortunately, this situation is not ideal in the real world sometimes....

Thus, there is the emotion and the financial obligations involved....
As caregivers, we must try to separate the two because you cannot provide a comfortable home and real care without the financial means to support you.....

Your brother has to understand in detail all your expenses, responsibilities and obligations.....Maybe he lacks the knowledge of these expenses in the real world~ thus perhaps it is best that you get brochures, or print some froim online sources so he can read, understand fully in black and white what it entails financially to take care of a sick and disabled senior or loved one...

If he doesn't want to contribute his time, then it is only fair that he compensates you for the amount that he would have to pay outside if he had to hire someone else to cover for his time and share of the responsibility.....

Not knowing all the details of the wills and/or trust set up by your mom, you need to know if your brother is acting only as POA, "Attorney-in-fact?" or if he is also a Co-Trustee on The Trust that was set up by your mom, if any? You need to find out if there is a lawyer that set up this Trust as well. The lawyer has a copy of everything and his role in the trust....

As much as possible of course, you want to work this out as a family and outside the court system.....But legally, it is your brother's responsibility as the "Attorney-In-Fact" or Co-trustee of The Trust to enact "the will" of your mom and whatever is spelled out in the "Trust"....
He has the responsibility to ensure that your mom's financial needs and personal well-being is met, specifically if there is a "Revocable or Irrevocable Trust" involved.......THIS IS HER MONEY not your brother's... If your mom has a lawyer that drew up the Trust and/or Will & Health Directives, you may want that lawyer to help you out and perhaps talk to your brother to spell out his "legal responsibilities" or you may have to go to court and have the judge do it for him......

If we truly love and care for our disabled and loved ones, we will make sure that we fight for right, their well-being, and to ensure that they are taken care of emotionally and financially as this act truly depicts our concern and genuine caregiving from our heart......

I wish you luck on this endeavor to enlighten your brother.....
Blessings to you.....
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Well-being should be at the top of the list. I loved my mother and would have done anything for her even if I didn't get a dime. I did it for my dad and didn't get any money at all. If this selfcentered brother doesn't love his sister enough to give her all the help she needs then he isn't worth much. Good luck and I hope it turns out well for you and your mom.
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hi , i quit my job to keep dad out of nursing home . i told my brother that i cant afford to quit my job and he offered to pay me each month the same amount of money i make from my work . plus dad s credit card for personal needs and grocries once a month , we share the grocries . so it all works out fine .
but when my father got sick and was in the hospital and then to rehab my brother didnt pay me . i was upset sick to my stomach how am i going to pay my bills ? even tho i was with dad everyday and still took care of him at hospital and rehab or sit there held his hands .
i told dad that brothers not payin me cuz he s not at my home . he said he should pay me even if he s not at home . i called my bro and told himw hat dad said , he said ok and sent me the check right away . whew !!
cuz if i had to go out and find me a job i would not quit another job cuz i cant afford not to be workin ....
i do feel bad takin dad s money but then i am saving him a bunch money . nursinghome is not cheap and he dont get the loving care there as he would here .
ask ur brother for a credit card and whatever it cost for u to take care of ur mom . its alot cheaper for family to care than it is to pay stranger ..
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Lizzy, I wish I had your discription of Parkinsons Disease 7 years ago because most of the things U describe r what my husband has. Plus he has put all decision making on my shoulders. He no longer does his check book, makes a phone call, eats something, takes his medicine, and on and on without going over it with me first. I feel like I am always on overload. To have a discussion with him is good. He is very sharp most of the time; but because of things he has done I don't dare go away for a couple days and leave him alone. I guess I am unloading about me now and not onelove. As always I enjoy your discussions. Thanks! Dane
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Keep saying this. People do not GET that caregiver function continues in the nursing home, ER and hospital and hospice. Aides are just not going to come and listen for patient's every need. I spend more bedside time when mom is supposedly CARED FOR than I do when she is home and I do all the caring. There is added expense of phone calls on cellphone, gas to and from hospital, errands to run...and the house to maintain. I eat usually at the food machines in hosp basement...burritos. I help feed Mom. And help keep her spirits up, put in DVDS I bring from home, help protect her from starkraving mad screaming roommates, etc. Wheel her around the halls looking for natural light and scenic vistas.
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My mom was diagnosed with Parkinsons 8 years ago, and it does affect her mind also. There is a name for the form of dementia associated with Parkinsons. It is called Louis' dementia. Mom has anxiety and depression, both of which are made worse with Parkinsons. She can no longer walk without help, and because of the dementia, cannot remember that she can't walk alone without falling down. It's a nightmare trying to keep her safe. When she does have a bad fall, she doesn't remember it happening. She just knows that something hurts. Consequently we have many battles. I yell at her out of the fear that she is going to fall, and she gets pissed at me for not letting her do what she wants.
So for you that are dealing with a parkinsons patient that is still with it, most likely the day will come for them too. It is especially hard to care for Mom because of this. It's very taxing mentally and physically. She is very OCD and cannot sit still for even one minute. If she was in a nursing home, they would just dope her up and leave her in a wheel chair by the nurses station. I could also dope her up and give myself a break, but she still has many good moments that would be clouded by extra meds. I do have a few restraints to use so that I can do things like cook, and laundry. She has a wheelchair with a restraint belt, and a Merry walker that I leave at daycare for her. With this she able to ambulate on her own for part of the day. It has a seat on it too. I also had to get a bed rail to keep her from falling out of bed, and a Posey vest to tie her to her recliner or rocker, without hurting her. Sometimes I get lucky and she will sit still and read for an hour or two. The only saving grace is that she will sleep all night, most every night. But I know the day is coming when that won't be so. In the mean time, it's a full time job + as you all know.
It's tough on all of us, but we have to remember that what we are doing is right and we're tough too!
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Thanks for sharing AlzCaregiver and deefer12. Any bit of information on Parkinsons helps me. Dane
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I am learning so much from everyone and I am so glad that you are sharing your thoughts and your experiences with the rest of us. There is no teacher like experience and I will bow to that every time.
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