Caregiver bill of rights...
This has helped me and I hope you can take something from it as well.
Caregiver’s Bill of Rights
I have the right:
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if s/he were healthy.
To get angry, be depressed, and to express other difficult feelings occasionally.
To reject any attempt by my relative to manipulate me through guilt, anger, or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
(originally published by — Jo Horne, author of Caregiving: Helping an Aging Loved One)
"To receive consideration, affection, forgiveness, and acceptance for what I do for my love"
If this means the one you are caring for, if the suffer from a Dementia this won't happen. From family then maybe.
"To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative."
That makes it sound like we need a reason to deserve self-care. Why? We don't deserve self-care if we don't take care of someone else? No need to explain or rationalize why caregivers have to take care of themselves.
I'd change it to:
"To take care of myself because I need and deserve care just like everyone else."
"To receive appropriate financial compensation for my time both as income now and credits toward my future Social Security, funds for my IRA and savings for my possible disability and illness in my own old age."
I take funds from my Mother's account monthly, pursuant okays of three different attorneys who have said the sum is reasonable and "nominal." I don't call it "compensation." I call it "contribution to the household expenses." I live on Social Security and the added food and supplies and other household expenses would require me to take funds from my own retirement funds. That's not fair. It's not an enormous sum, but it helps, and it would be far less than a roommate would pay for a room with television and private bathroom, board, cleaning, laundering, changing linens, orderly work to clean up messes, cook, hair dresser, chauffeur, and so forth.
She's my Mother and I don't expect credit or money for what I do, although when I bring her clean clothes/nightgowns/robes to her closet each day, she thanks me. That means so much to me. I only want reasonable help to help her. Btw, she's going to be 100 in three months and I'm 72.
I understand that this contribution may affect whether or not my Mother can get Medicade in the future, if it is needed. Outrageous that it could be described as a "gift."
Contribution/compensation -- whatever you call it -- should be not only a spiritual bill of right -- it should be legal too.