Lupus Caregivers
Self Health
Even the strongest and most determined adult can become overwhelmed by the responsibilities of taking care of someone with a chronic disease. So it is of primary importance for caregivers to take care of their own health as lovingly as they do their family member.
LeAnn Thieman, co-author of Chicken Soup for the Caregiver’s Soul, advises taking care to balance your life physically, mentally, and spiritually. That translates into paying attention to your diet, getting enough exercise, and setting aside a few minutes every day for quiet and reflection.
“We pay so much attention to the person we are caring for we forget to take care of ourselves,” says Thieman. “Often caregivers feel alone and unappreciated. They have to understand that caring for themselves is as important as providing care for others.”
Learn as You Care
One of the best tips for caregivers is to learn as much about the disease as they can. “You might think that you do not want to know, but if you are educated, you’ll find a way to deal with things,” says Suzanne Mintz, president and co-founder of the National Family Caregivers Association.
Mintz, whose husband has multiple sclerosis, has four guiding lights for family caregivers:
- Choose to take charge of your life.
- Love, honor, and value yourself.
- Seek, accept and, at times, demand help.
- Be an activist for your disease.
Mintz echoes Thieman and Forte on the importance of looking at the situation from the “glass-is-half-full” viewpoint.
“We really can choose our attitude,” says Mintz. If you focus on the bright side, whether that be the great research on the horizon or you’ve found a wonderful doctor, caregivers will find that an inner strength that they weren’t aware of.
Mintz’s second principle is to take care of yourself, both physically and mentally: get the massage or arrange for lunch and a movie with a friend. Caregivers have a right to do things for themselves and if they don’t take care of themselves, they’ll end up becoming very bitter. Being a martyr is not going to benefit anyone, Mintz points out.
Mintz also advises that caregivers bear in mind that they can’t do it all. “People don’t realize that there has never been a phenomenon like this,” she says. “In 1900 the average life expectancy was 47 years. It used to be that people died from infections or diseases in a short period of time,” whereas today they can live for years with Alzheimer’s or heart disease, so the role of caregiver can be significantly longer than just a couple of months. As a result, the demands on long-term caregivers may be significantly greater than in the past and the toll it can take on their own careers, health, and well-being can be significant.