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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.
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)
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. : )
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!
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
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
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
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.
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.....
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 ..
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!