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.
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
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)
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!
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.
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.
Hope you guys can work things out. Dane
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