Recently, I had the opportunity to share my experiences with Alzheimer’s Association staff and area Congressional staffers as they begin to plan the next steps in implementing the Alzheimer’s National Project Act. There were many things that I what I wanted to say in those three minutes, but I eventually decided to convey the challenges that come with being a family member who lives at a distance from a loved one who is suffering memory loss.
Let me set the scenario for you. In 2002, my parents lived about seven hours away from me. I couldn’t get up to their house very often due to a demanding job, but we would meet at a city half-way to get together. I could tell Mom was really starting to struggle with memory loss, which caused my parents to have regular heated fights (which they rarely had done previously in their marriage). I found that I was really lost in how to help ease the situation. So after each unsatisfying visit, I headed back to my home while my parents headed back to West Texas. I really started dwelling on Mom’s issues and the strain on my parents’ marriage, which added to my stress level and caused me to struggle in my job. I finally had to see a psychologist to help me come up with a plan so that I could maintain my sanity when dealing with my parents’ issues. Still, those three years were some of the hardest in my life because I couldn’t see first-hand what Mom’s condition was. Instead, I was relegated to weekly long-distance phone calls to determine what the status of her physical and mental health was (as well as the health of my parents’ relationship).
Turns out I’m not alone. It’s estimated that by 2010, approximately 14 million Americans will be considered long-distance caregivers. These caregivers are increasingly finding challenges in feeling like they are adequately assisting their love ones. MedlinePlus reported on a new study published in Oncology Nursing Forum. This study, which focused on the reflections of eight family caregivers who lived 100 miles away from a parent with cancer, found that the caregivers were concerned about not knowing what was going on and feeling disconnected.
These long-distance caregivers also did not know when to visit their parent; when they did visit, they were shocked at their parent’s condition. These long-distance caregivers also were skeptical about the information they were getting about their parent’s condition; they worried that news might be sugar-coated in order to protect them from emotional anguish. This feeling prompted the long-distance caregivers to try to be more vigilant in managing their parent’s care, thus causing stress between them and relatives who lived closer to the ailing parent and who had been involved in the day-to-day decisions and seen first-hand the parent’s changing condition.
So what can you do if you’re a long-distance caregiver? The Alzheimer’s Association recommends making the most of visits with your loved one. The association’s advice includes:
- Making appointments with the loved one’s physician, lawyer and financial adviser while you’re in town so you can participate in any decision-making.
- Meeting with relatives, neighbors and friends to find out their perceptions of how the loved one is doing. Be sure to ask if there have been any health problems, behavioral changes, or safety issues.
- Reconnecting with your loved one while you’re there through doing activities you both enjoy, talking or going for a walk.
Caregiving at a distance brings different challenges. The caregiver faces the stress of not knowing what’s happening on a daily basis and is not able to take an active role due to lack of proximity. That’s why it’s important to continue to build relationships not only with the loved one with dementia, but also with his or her professional support group (doctor, lawyer, financial advisor) as well as with the family members and friends who handle the day-to-day caregiving issues. Developing a constant flow of clear and up-to-date information can help ease the long-distance caregiver’s mind and help the caregiver provide targeted, but important assistance.
Published On: September 07, 2011