How to Set Up a Caregiving Agreement

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I find your article very interesting and very helpful. But I am wondering what rules are there pertaining to getting paid for caregiving. I am not in a union, but I find many times I am always arguing about getting paid for my shifts that are on my schedule, then changed the last minute for extended period of time.
My question: Once I am listed on my schedule to work a week-end, then changed because the client is going to her relative's
should I be getting paid as it is not my fault that the changed took place.
Thank You

Olive Horlick of NH 4:36PM May 05, 2009

I am co-creator of the caregivers group on our campus at Kent State University. I joined when taking care of my father who was on twenty-six pills a day and a shot in his belly. My son, who is a fireman paramedic, informed me when they get a call at an elderly person's house, and they are incoherent, they take all of their medications and put them in a bag and take them with the patient to the hospital. I composed a spreadsheet of his medications and doses, surgeries,doctors and emergency numbers of the family. My father had bypass to his heart, leg, valve replacement, whipple, and pancreases cancer, along with several minor surgeries. When he would have to go to emergency, and they would ask all the questions in the emergency room, I would hand them a copy of the spreadsheet. It saves time. I then composed them for my in-laws and we keep them right by the door with EMERGENCY on them.
Caregiving isn't an easy job, but I would do it again for my Dad, because he took care of me when I was young.

Claire Coseno of OH 9:07AM March 06, 2009

My father, who has Alzheimer's, came to live with us in 2003. In 2005, my uncle, who was caregiver for his wife (who also had Alzheimer's), became ill and asked if I would take care of her if he was unable. We had to petition the Court for Guardianship since she was incompetent and could not appoint me her power of attorney if he died.(They had no children.) I was able to find a good live-in caregiver and traveled an hour each way weekly to visit, monitor care, pay bills from their resources, give the caregiver a day off, etc. My uncle died in 2006. My aunt died in 2008.
My husband, who had just retired, took care of my father while I worked 2 days/week and took care of my aunt & uncle 1 day/week. When I was home, he worked.
During this same time, my two sons were in college (two years both were going at the same time). We attended our sons' games, concerts, graduations singly because my father couldn't or wouldn't go and behaved so poorly with friends, we stopped asking them to stay with him. This was also the time I planned to go back to work full time and my husband planned to work a different job in order to help pay for college and save for retirement. We couldn't do it and take care of my father at the same time. Then in 2008, we lost 1/3 of what we did have saved for retirement because of the economic crash.
Caregiving has taken an enormous toll on us emotionally, economically and on our health as well. We are preparing to place my father in a nursing home because we are exhausted. It is the hardest thing I've ever had to do, but it has to be; We can't continue this way.

clairep of NY 9:34PM February 09, 2009

This is great information and answers one of the primary questions we are always asked at the National Family Caregivers Association ... how can I get paid for my services? Thank you for writing this. However, for the millions of family caregivers and families for which this is simply not an option, one of your key points remains true for unpaid family caregivers. "It's a job; treat it like one!!" So, even for most of us that will never be able to make an arrangement for payment, we still need to treat it like it is - another job. And as you would with any job, family caregivers should speak up for information, resources, help, and community with others doing the same "job". For everyone providing long term care for their loved ones - it is not a job that can be done alone. It is a sign of strength to ask for the help, resources and respite time that you will need to do your "job". One place to go to is the National Family Caregivers Association at
www.thefamilycaregiver.org where all family caregivers can join this caregiving community for free whether you are paid for your services or not. And for those that are not paid, we can still speak up to our state and federal legislators to craft healthcare legislation that will recognize and help all family caregivers that are currently providing over 80% of America's long term care. Thank you Philip for highlighting this very important issue!

Deborah Halpern of IL 8:48AM January 31, 2009