The Story of a Family Caregiver: Joan's Story

My name is Joan, and I take care of my older sister, Barbara. Barbara is 9 years older than me (she's 75) and basically helped to raise me when we were growing up. Now she is struggling with Alzheimer's. She never married, never had children -- she lived with our brother in Hawaii until he died, and then I brought her here to live with me and my husband.

In the last two and a half years, she has gone downhill very quickly. She's now "total care" -- she needs someone with her 24 hours a day. I'm that person most of the time, but it really helps to have some help occasionally. Because Barbara worked two jobs all her life, that help was hard to get at first because her income was always a bit too high to qualify for assistance. Senior Spectrum helped a lot -- they found a way for me to get a break 2 days a week to go out and do grocery shopping, doctor's appointments, etc. Once a week I tried to go swimming, because I have arthritis and a bad back.

Now, through hospice and MaineCare, she qualies for help 7 days a week, which is great. But the agencies are always low on help. Some days I get a phone call to say, "I'm sorry, but we don't have anybody to send to your home. Would you be alright today if nobody came?" And I'll say, "Sure", because there's really no choice. And some days when they don't have an aide I won't even get a phone call.

We've also seen a revolving door of aides in here. It's better when you have the same one, because then they get to kow Barbara, Barbara's needs, now to keep her comfortable. That's easier on Barbara, easier on the aide, easier on me. But we have different aides coming on different days, and it seems like there's new ones coming through all the time.

When I worked in home care myself 20 years ago, the pay and benefits were better. When I hear what the aides are paid today, it's so much lower. Now, this is the type of job where if you don't care about people, you don't belong. Don't do this job just for the paycheck. But we need to do better -- it's hard work, and you need to get paid a good wage for a good job. They need more incentive to remain in this profession.

If I don't have the aides, I don't feel that I'm giving Barbara the best care because I'm tired and I'm trying to do everything else. And I'm very picky. I want her care done well, I want her done right, I want her to be comfortable. The little I do can't suffice for what she gave me. All her life Barbara was helping to take care of people -- me, our mother, my children, her niece and grand-nephews. She's very deserving. Any time you can give back to someone who has been good to you, you should do it.