ALL ABOUT ALZHEIMER'S: Respite
By Betty Weiss
The most serious mistake the overwhelming majority of Alzheimer's caregivers make is not paying attention to their own well-being - everything revolves around the loved one's demanding care. Who has time for regular check-ups, seeing a doctor about your own medical problems, the dentist, a mammogram, prostate screening, colonoscopy? It's too hard to get anyone to stay with Mom, they won't know what to do when she ______ (fill in the blank). You'll be gone too long, she'll panic. Caregivers don't eat right, get little exercise, are routinely sleep deprived. They're too busy driving Mom around, feeding, bathing, entertaining, running the house, doing laundry, shopping. This was my own personal history. I always told people I was OK, taking care of myself, but I really wasn't. I neglected my own well-being, even though from time to time I did hire someone in the house for a few hours.
Don't become one of these statistics: 43% of Alzheimer's caregivers fall into a clinical depression that can linger for years, even after the loved one dies; 15% will die before their contemporaries and many will die before the patient they care for; elderly caregivers with a chronic illness have a 63% higher mortality rate then non-caregiving peers; spousal caregivers suffer three times the depression of others in their age group; half of caregivers spend 46 hours a week caring for a loved one and are on call 24 hours a day, seven days a week - there are no days off, no eight-hour shifts. This is in violation of all employment directives - private, government, unions - take care of yourself first!
Caregivers need respite, that is, temporary relief from their caregiving chores. Most will tell you they daydream about running away, having some 'me' time alone, but it's not always easy to come by. My husband and son often worked together and he clearly saw his father's changing, having problems doing the things he'd always done before. He understood the situation and could sometimes be available. A few times I asked him to spend a couple days with his Dad so I could get away. But I know not everyone has this option.
I also gave respite to myself. At night, when my husband was asleep, I might take a long bath, watch something special on TV, read or do needlework. My thoughts drifted away from his care completely when I followed patterns, chose threads and watched color stitches form designs. Your interests will be different, but grab a short period of time for yourself whenever you can.
Adult day care is good for both you and your loved one. Many patients say they don't want to go, but if you follow the advice of staff, chances are it will work out. Many offer low costs for those who need it. In most areas of the country, there are vans for the handicapped that will take someone to and from day care for a small fee - get out your phone book. It's cheaper than using your own car and much easier on you - you have enough to do. During these few hours you can shop, go to a movie, bowl, take a class, whatever - even nap--such respite time for you is priceless.
Then there are some residential care facilities that will take someone for a few days, and again, patients almost always adjust. Caregivers themselves are often the problem, they cannot tear themselves away - don't feel so guilty! You are not the only one who can do the job, and if something bad happens, it will happen, but chances are nothing will. When you can get away, don't - don't - don't call to see how your loved one is doing. You might feel better if you leave written instructions. Do not expect improvements when you return, it will be back to the same old grind, but with a refreshed attitude. It really helps and don't feel guilty - did I say that? Don't feel guilty!
Call Alzheimer's and other caregiver organizations, senior centers, your church, County or State Departments of Aging, friends and family. When someone trustworthy says, "What can I do to help?" ask if they will commit to stay with your loved one on a specific afternoon every six weeks or so. That's not much and you're worth it.
Betty Weiss is the author of the best selling Alzheimer's Surgery: An Intimate Portrait, and When The Doctor Says, "Alzheimer's:" Your Caregiver's Guide to Alzheimer's & Dementia. She does not give medical advice. www.geocities.com/caregiving4alz