It takes extraordinary effort, but there are ways to ease the strain.
On a cold and slow-moving Friday morning in March 2003, I received a devastating and distraught call from Marianne, my dearest and oldest friend. I immediately knew something was wrong by the controlled, even tone of Marianne’s voice. Marianne, who lives in Massachusetts, was calling to tell me that her older brother and only sibling, Phil, had just suffered a massive cerebral aneurysm at his home in Florida. Phil was a bachelor, living alone. Suddenly Marianne was thrown into the world of long-distance caregiving. But her situation was more than complicated and emotionally devastating: No one could ever have imagined that any six-month period could possibly be filled with the trauma and heartache she was now living.
Marianne, at 51, had a full and happy life as a geriatric nurse practitioner, wife, and mother of two young boys. However, in October of 2002, she had been diagnosed with metastatic breast cancer. The week following her surgery she had experienced the seemingly sudden and very tragic loss of her beloved 86-year-old mother who had finally succumbed to the ravages of Alzheimer’s disease. Marianne had been her primary caregiver for more than 10 years, but now that she was sick herself, there was some sense of relief that she could concentrate on her own healthcare. However, just as she was entering the radiation phase of her cancer treatment, Phil became ill.
“Phil’s condition initially involved life and death decisions about surgery and treatments,” says Marianne. “It was emotionally devastating for me. I had tremendous difficulty reaching his physicians and would often not know what was happening. Initially I couldn’t travel because my radiation could not be interrupted. Over time there were frequent flights to Florida, which were financially difficult and a strain on my family.”
There is never a time that is convenient to take on the overwhelming responsibilities of long-distance caregiving, but the timing here, it seemed, was particularly cruel.
Finding Help From a Distance
Locating the needed resources from a distance can be a daunting task. “I actually had to hire a case manager in Boston to research the facilities near where I lived in case I needed to move Phil here,” recalls Marianne. “Even as a healthcare professional I needed to employ other professionals. As a geriatric nurse practitioner I can say that a geriatric case manager can offer tremendous advantage to the family. While they are costly, a case manager can be your eyes and ears. They serve as a liaison for the family and are deeply experienced in the medical care available in the local market.”
At the time, Marianne had another obstacle: the Health Insurance Portability and Accountability Act (HIPAA), a privacy law that sets rules and limits for who can receive medical information. Explains Marianne, “It was a huge hassle and the major reason I had to apply for guardianship.”
As it turned out, Phil stabilized and although he moved from facility to facility, he was able to remain in Florida. He is still cognitively impaired and not able to work. However, the caregiving burden is no longer Marianne’s alone: Phil ultimately married the woman he had been dating, and she has become his primary caregiver.
You Are Not Alone
Recent statistics show that there are likely 54 million caregivers in the United States, and AARP estimates that over five million are managing care from a distance. A 2004 MetLife study, in association with the National Alliance for Caregiving (www.nac.org), also has found:
Coast to Coast
Donna is an energetic Californian, a former nurse who is now a medical film producer. She is from a close-knit, yet geographically dispersed family of four siblings who has spent more than a decade in the role of long-distance, east coast-west coast caregiving.
It started in the early ‘90s with her father, who went through a five-year battle with prostate cancer. Donna corralled the family to ensure that he was able to live—and die—with dignity and grace. Today, she is caregiving once again, for her mother who is suffering from Alzheimer’s disease. This time it has involved multiple moves within the Washington, DC area and ultimately, relocation to Denver to be near Donna’s sister, Nancy.
“My mother’s dementia was slow to develop and be fully recognized,” says Donna, “but as her ability to care for herself declined, my sisters and my brother and I had to work together to organize many moves. She now lives in a wonderful dementia unit of an assisted living facility. We have had biweekly conference calls and daily e-mails sharing information and making decisions together.” Still, says Donna, “As her health deteriorated I had needed to make numerous, almost monthly, east-coast trips that have been disruptive to me as a single parent raising two children with a demanding full-time career.”
Donna and her siblings are rare in their closeness and united in their love and commitment to their mother. They explored their individual skills and circumstances and each took on appropriate tasks. While not all families are as fortunate, Donna is a healthcare professional, and it fell to her to oversee communications with the medical staff. When the siblings agreed that Donna’s mom, Glenora, (affectionately known as Glen) needed to be moved to Denver, Donna interviewed primary care physicians and neurologists by phone. Today, Donna’s sister has taken on the role of caregiver, although Donna and her other siblings, Wayne and Debbie, each takes turns with a daily call. That way, a day does not pass without Glen enjoying a call from one of her children. They have also formed “Glen’s Team,” a group of local health care professionals, clergy, social workers and relatives all focused on ensuring the best possible care for Glen.
Advises Donna, “Don’t ever feel that you are on an island. You are never alone, there are tremendous resources available and you need to shore up your resources early on. You need the advice of physicians, nurses, social workers, financial and legal planners and clergy, and you need to pull together your entire family team. The whole situation would drive you crazy otherwise.”
Clearly long-distance caregiving presents an array of challenges which can devastate even health care professionals like Marianne and Donna. However, with thoughtful interaction between family, friends and health care professionals in the local area—and a willingness to accept support and intervention—it is an experience that can be managed with hard work and compromise.
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This article was originally published in the Summer, 2005 issue of Caring Today magazine, page 44. Reprinted with permission from Caring Today magazine.
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