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I live in her home - take care of her alone almost 3 years. We pay $600/mth towards her real estate taxes, all utilites, etc, have remodeled kitchen and 1 bathroom and various other house updating. I am her sole 24 hour caretaker - 89 year old formerly abusive diabetic - weight 240, 4x insulin daily, bowel incontinent, completely bedridden, CHF, oxygen, bedsores maintenance. I am tired of no money and my husband is working his heart out but I quit my job to move in with her. I only go to store for diapers & grocery as I look so bad - can't afford hair dresser, etc. Is it wrong to ask? Will understand if it is.

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Hello Freq Flyer... Thanks so much for your feedback. My cracks starting to show. I have fibromyalgia and spend mornings warming my hands so fingers can move to get her day started. I take tramadol like candy - really doesn't do much good. No time to follow up with rheumatologist. Frankly if it were not for my husband & 2 grown kids here, I wouldn't want to live. I was working on my doctorate degree to teach but ran out of $ financial aide from 2 repeat classes - her care exhausted me too much for study. I look forward to nothing. Each day gives nothing. I sleep on old sofa for her early AM hours, her time to shine. I had a single respite when she was in rehab but she was discharged early due to non cooperation/attitude. My brother thinks because we do not pay rent, we should pay her real estate taxes which are almost $10K per year with a balloon payment. I feel like if we are going to be tenants, then we should have tenant rights. Her dr prescribed medicare agency to help me with her bed sores and I like someone coming over. The agency said my mother is a 2 aide patient - she is heavy to move around, etc. I have thought of therapy but all I see is cash therapist with insurance reimbursement. I have no cash for that nor anyone to stay with my mother for any session. I really have no hope. I never let my husband & kids know the depth of my feelings. My brother the doctor is in his own world.
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"bowel incontinent, completely bedridden, CHF, oxygen, bedsores maintenance."

This is not a case of providing simple care and companionship, this is a full time job that would require her to pay to be in a Nursing Home with 3 shifts of workers if you were not there. And you say that YOU are paying $600/month toward her expenses? You need to think of your own health and future, aside from the financial loss of giving up you job I think you are a serious risk of burnout unless you have regular outside support and respite.
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Here are some things to think about if one is trying to decide whether to quit work to care for an aging parent.... on average if a working person quits work he/she will lose over the years between $285,000 and $325,000 which includes not only loss of salary over those years... it also includes the net worth loss of the health insurance coverage.... loss of money being put into Social Security/Medicare..... loss of other benefits such as matching 401(k).... profit sharing.... workman's comp insurance.... company sponsored life insurance.... vacation pay, sick pay.... tuition assistance, etc. [source: in part Reuters 5/30/12]... yes, I realize in today's work not that many companies offer such benefits any more.

One should ask the parent if they could pay toward their care. And find a hourly rate that both of you are comfortable. A parent could use a "pay service" that the parent pays into, and in return that pay service writes you a paycheck after taking out payroll taxes.

KicksandGiggles, it starting to sound like that your Mom needs around the clock care. How are you holding up? Don't get burned out. I was thinking if Mom can pay you, then she could afford to pay a caregiver for a few hours a day to give you a break.
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Jeannegibbs and ChrismSherman, THANK YOU SO MUCH FOR responding with such detailed and heartfelt information. It is rough as dementia takes her from civil to savage. Unfortunately I have no sisters and only 1 brother a physician who has only visited her 2 times. Its just me and husband and 2 grown children. I will see if my brother will agree to this. Thanks so much again!!!
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Check into a care giver contract. The money would come from your mother's estate.
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In my mind, it is wrong not to give elders the dignity of paying their own way, to the extent it is possible. If you mother had to get care from an agency she would be paying dearly for it. She should be paying you. Perhaps not as much as the agency would charge -- but a decent amount considering a "family discount." When you do this, have a care agreement in place, so that this money will not be considered a "gift" if she later needs to apply for financial assistance.

In our family our mother was reluctant to move in with the daughter who offered that, because she didn't want to be a burden. Another sister finally persuaded her by taking her aside and saying that the sister who had just retired was worried about making the mortgage payments and could really use the rent money.  (Not true, but it worked.) Well, OK, as long as she wasn't a burden she'd move in. Mother had been in subsidized housing, and my sister charged her the same amount she had been paying for that (which was below market rate for what Mom got). Mom was also eligible for a certain number of  hours of paid care each week, and my sister accepted that money. The other six of us thought this was an outstanding arrangement for the year+ that it lasted.

Usually this kind of question brings some responses that are outraged at the thought of charging a parent. "Did they charge you for all they did while you were growing up?" That really isn't relevant. The situations are completely different. Charging you parent makes sense, to me. And it has nothing to do with how much you love them or how grateful you are for the care you got from them as a child.
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