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Newswise — When Mavis Hines began to notice her husband, Gordon, forgetting things about four years ago, she never dreamed that vascular dementia would rob him of his ability to communicate, follow simple directions or even walk on his own. Today, she has taken on the challenges and triumphs of being a caregiver. Hines is one of an estimated 44.5 million Americans who are caring for a loved one over age 18.
Ruth Campbell, MSW, a social worker at the University of Michigan Geriatrics Center, notes that whether caregiving is easy or difficult, it is often a long job.
"About 17 percent of caregivers put in more than 40 hours in a week, so it's more than a full-time job. So it's very hard balancing the rest of their life with caregiving," she says.
The development of vascular dementia for Gordon Hines was gradual, so that he was still able to work, drive and communicate " that is, until he suffered a stroke and underwent brain surgery. After that, Hines lost the mental and physical abilities needed to function independently.
"It's very difficult in that you're dealing with a grown person who is slowly losing his ability to reason or to be cooperative. The hardest part is not being able to talk to him about what I need him to do," Mavis Hines says. "He eventually lost the ability to follow directions, so this has made it very difficult."
After Gordon Hines' stroke, an occupational therapist worked with him to relearn simple things like standing up or sitting down without help. However, problems with Hines' knees eventually hindered the use of these hard-won skills and he deteriorated to the point where a wheelchair was the only option. For Mavis Hines, this meant a progression in the kind of caregiving she was able to offer.
"When a person can use his strength and legs to help, it means you can transfer him from one place to another, but once they stop being able to stand, it becomes much more difficult. I now have a lift but before that I was doing a lot of trying " trying to get him up, trying to get him to work with me. He can't follow directions and we've had some falls," Mavis Hines says.
With all the focus on the person needing care, some of the greatest challenges caregivers face is finding time for themselves. Doctors, friends and virtually everyone else focus on the person receiving care. Often the caregiver neglects her or his own health, thinking there is no time to go to the doctor. At the same time, caregivers tend to give up many of the activities and other things that make life enjoyable and worth living.
"One of the most important mistakes caregivers make when they're neglecting their own care is trying to do everything themselves. It's amazing how often there's just one caregiver in a family of four or five people," Campbell says.
Caregiving without help over a long period of time takes its toll emotionally, physically and financially. Campbell advises caregivers who are going through a stressful situation to look for people who can help.
"There's a whole new profession of geriatric care managers and if you look on the Web, you can find people in your area," she says.
Other help can include homemakers, health care aides and daycare options. Of these, daycare is the most underutilized service " in spite of the fact it is available in most areas. Not only does daycare give relief to the caregiver, but it also provides a stimulating social environment for people, particularly those with Alzheimer's who still have a lot of potential to continue to enjoy life.
As caregivers look for people who can help, Campbell urges them to reach beyond the immediate family and friends and join a support group.
"Doctors, social workers and nurses are really important, but the people who are going through it themselves look at the situation in a different way and can give you the kind of advice, support and affirmation that caregivers really need, " says Campbell. "And the most important thing people say when they go to a support group is 'at last, I'm not alone.'"
Mavis Hines believes caregivers should share with their family and friends and join a support group. Read all you can on the illness, she says, and don't be afraid to tell people what you are dealing with.
"Take care of yourself, go out and do some things, getting people to give you relief time. It's a wonderful thing in this day and age that there are people out there who are willing to help," says Hines.
Hines also works to keep things at home as normal as possible, including meals, watching favorite television programs and looking over family scrapbooks.
Campbell sums it up this way: "There is beauty in aging and there is beauty in caregiving. You just have to look for it. I think caregiving is one of the most wonderful things you can do. It is a gift you give to people and, in most cases, people find caregiving very satisfying."
For more information, visit the following Web sites:
Women's Health Resource Center News: Caring for the Caregiverhttp://www.med.umich.edu/whp/whrc/news/newsletter-%20june%202004.pdf
Family Caregiving Alliancehttp://www.caregiver.org/caregiver/jsp/home.jsp
National Family Caregivers Associationhttp://www.nfcacares.org/home.html
National Family Caregivers Association: 10 Tips for Family Caregivershttp://www.nfcacares.org/tentipsf.html
Medline Plus: Caregivershttp://www.nlm.nih.gov/medlineplus/caregivers.html
National Family Caregiver Support Program: Resource Roomhttp://www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp
Written by Mary Beth Reilly
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