"Stay Connected – Tips for Preventing Caregiver Isolation"

By Lisa M. Petsche

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Jim was diagnosed with Alzheimer’s disease three years ago. His wife, Anne, is finding it increasingly difficult to care for him due to his declining memory and judgment. He has slipped out of the house on two occasions and gotten lost; Anne had to call the police to help find him. She can no longer leave Jim alone for even a short time.

It’s easy for caregivers like Anne to become isolated as a result of their relative’s need for continual care, whether it’s practical help or supervision.

For instance, they may have to give up a career or volunteer work in order to provide full-time care. Over time they also may lose touch with friends because the heavy demands of caregiving limit their time and energy for nurturing relationships and their ability to get out of the house. All too easily, they become disengaged from supportive social networks - such as clubs, groups and perhaps a faith community - and stress-relieving leisure activities.

Unfortunately, family support is often minimal or absent, due to societal trends that include delayed marriage, decreased family size, increased mobility and a decline in multi-generational households. Even if adult children live nearby, they’re likely raising a family and holding down a job, and therefore have limited time to help mom and dad.

Separation from others fosters loneliness and may precipitate depression, a common affliction among caregivers. While sustaining all relationships may be impossible, close relationships - a vital source of pleasure, validation and practical support - need to be nurtured.

However, a variety of factors can prevent caregivers from maintaining their connections to the outside world.

Sometimes their values get in the way of accepting respite care. For example, if their entire identity has become tied to the caregiving role, they may believe no one else can adequately look after their relative. Or they may not want to “burden” friends or family by discussing their needs and requesting help. Often they lack knowledge about community respite and transportation services, or are concerned about the financial cost. Some don’t even realize the importance of respite.

If you are a family caregiver, following are some ways to prevent or overcome isolation, in order to avoid burnout:

• Take the initiative and invite people over. Don’t wait for them to suggest it or extend an invitation.
• Accept offers of help and ask other family members to share the load. Don’t try to shield them from the reality of your situation. Give them the opportunity to pitch in, and be specific about what you need.
• Keep in touch with out-of-area loved ones through phone calls (find a good long-distance savings plan), letters or e-mail (a laptop computer is particularly handy).
• Get a portable phone so you don’t miss calls and can multi-task while conversing. Or get an answering machine so friends can leave messages when you’re not available.
• Ask relatives to send photos or videotapes of family events you’re unable to attend, so you still feel included.
• Connect with other caregivers, who understand what you’re going through. Consider joining a community support group; some offer concurrent care. Information on caregiver groups can be obtained from your local hospital, community social workers and your local office on aging. Online caregiver message boards and chat rooms, and electronic mailing lists or discussion forums are some at-home alternatives. Low-tech options include reading a book aimed at caregivers or a caregiving magazine (for example, the national, bi-monthly Today’s Caregiver, 1-800-829-2734 or www.caregiver.com), which offer practical advice and the assurance that you’re not alone in the challenges you face.
• Consider in-home respite provided by home health care agency staff; an individual with or without formal training, hired under a private arrangement (most often located via word of mouth or newspaper classified advertising); or a trained volunteer (for example, from the Alzheimer’s Association).
• Investigate adult day care programs as well as residential care homes that have a short-stay program (so you can attend out-of-town events or take a vacation). To locate them, contact your local office on aging or the non-profit organization associated with your loved one’s disease.
• If mobility issues prevent your relative from accessing day care or accompanying you out into the community, rent or buy a walker or wheelchair if necessary (make sure he or she is properly assessed first). Get an adapted van that will accommodate a wheelchair, or register with the local accessible transportation service. Always check out the accessibility of your destination in advance.
• If your relative can safely be left alone for a while but either of you is anxious about the prospect, supply him or her with a portable phone and get yourself a cell phone so you can stay in touch. An emergency response system may also help put your mind at ease.

By staying connected to friends and outside activities, you will avoid becoming consumed by the caregiving role. Preventing isolation can go a long way toward maintaining your physical, mental and emotional health – a win-win situation for you and your relative.

Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.