Question: I am a caretaker living full time with my 86 year old mother-in-law and my brother-in-law who is blind and has autism. Many people have asked me if my husband and I are being compensated for what we do. I know we are family and I absolutely don't want to sound greedy, but what is considered appropriate as far as compensation for family caregivers? Is this even a bad question to ask? Up until now we have not received any financial or other compensation (including any help from my two sisters-in-law). Thank you so much! It is nice to know I have somewhere to turn - I just found out about this website!
Dr. Amy: Compensation for family caregivers is a big issue and one that’s only increasing in importance as our population ages and more and more people need care. It can also be an emotionally charged topic, in part because there is no set formula for compensating family caregivers. It really depends on your family circumstances and financial situation. Some families compensate, some do not, some recognize caregiving in an inheritance.
Did you know that many states allow for family caregivers to be compensated if the person receiving care qualifies for Medicaid? You can call your local Medicaid office for more information and to see if this applies to you.
I also encourage you to have an open conversation with your family about your thoughts and feelings. You might begin writing things in an email to everyone. Give everyone time to think about what you’ve said, and then meet in person (or on the phone, if some are far away) to discuss the matter.
You might prepare for this conversation by taking stock of everything you and your husband do as caregivers. Are you giving up paid work in order to be a caregiver? Are you receiving something in return? Once you have a clear picture of what you are giving and receiving, write down how you feel about this and what you would like to see happen. Is it cash payment? Do you want the family to pay a home care service to come in for a few hours each week so you can have time off? Could the sisters help more? What do you feel would be appropriate compensation given your family’s financial situation?
If you can afford it, a geriatric care manager can review your situation with you and help you manage the conversation. It can be a bit messy and hurtful if not handled well. In one family of six children, for example, there was no agreement and no one ever talked about the issue. The eldest daughter, who never married, stayed home and took care of her parents and the house. When her parents died, the children agreed amongst themselves that she should inherit the house. One brother, however, was strongly opposed to this at first and the disagreement caused a major rift in the family that lasted for decades. So it really helps to clarify things early and upfront.
Most family caregivers provide care out of feelings of love and duty, but it can easily become a financial burden, especially if you are cutting back paid work to do it. If you are having uncomfortable feelings, are feeling overwhelmed by the responsibility, or are feeling the financial punch, your emotions may affect your relationships over time and cause you unnecessary stress. I encourage you to clarify your own thoughts and feelings, and then have an open conversation with the family so that resentment does not build up. Good luck. I send you strength.
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