How to care for a loved one who is many miles away
Caring for a loved one who has Alzheimer’s disease can be stressful enough when the person lives nearby. When they’re many miles away, it can be even more difficult. Long-distance caregivers, however, can take steps to make their situation less burdensome and more fulfilling.
Let’s look at the long-distance caregiver’s situation. “Since the caregiver isn’t with their loved one, they have to rely on someone else for information,” says Rosemary Laird, MD, Medical Director of Health First Aging Institute in Melbourne, Fla., and co-author of Take Your Oxygen First: Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss. “They have to get information from friends, neighbors or caregivers, which can be a problem because they might not get the up-to-date information they need and end up responding to crises instead of being proactive.”
Freddi Segal-Gidan, PA, PhD, Physician Associate and Gerontologist at the Keck School of Medicine of the University of Southern California, adds that this type of caregiving can elicit strong emotions: “People in this situation can feel conflicted. Sometimes a sibling chooses to live far away from their parent to distance themselves. Because of the parent’s illness, they’re drawn back in and can feel conflicted or even resentful. Sometimes a family member volunteers to do this and doesn’t really understand what they’re getting into. They can feel overwhelmed.”
Taking a methodical, proactive approach to long-distance care can make it more manageable. The first step is to get a thorough knowledge of your loved one’s condition. A longdistance caregiver can’t attend doctor’s appointments, so it’s essential that they speak with physicians, mental health professionals, nutritionists and other healthcare providers to get updates on the loved one’s medical condition.
Next, find the right person to be your “eyes and ears” on-site with your loved one. “The caregiver has to find someone close to their loved one whom they can trust,” says Dr. Laird. “The usual options are other family members, friends, neighbors or church members. The long-distance caregiver needs to make and maintain these connections.”
Another important connection is with a nurse case manager. Sometimes called nurse care managers or geriatric care managers, these privately hired caregivers serve as the advocate for the loved one. They help assemble the daily care that the person needs and navigate them through the healthcare system.
After you know about your loved one’s condition and have the right caregivers in place, plan for the future as thoroughly as possible. “It’s essential to explore all the alternatives sooner rather than later and create a plan ahead of time so you won’t have to just react to a problems,” says Segal-Gidan. “How will the family handle the time when the loved one can’t drive a car anymore? Are there facilities to which you can move the person if their condition deteriorates? Are their legal matters taken care of?”
Here are a few more tips for long-distance caregivers:
Do What You’re Best At: When there is more than one long-distance caregiver in a family, don’t try to do everything yourself—do the things you do best. “A family member who is a lawyer, for example, should focus on the loved one’s legal matters; another family member who is a nurse can orchestrate medical care,” says Dr. Laird. “By doing things this way, everyone feels good about making a contribution and no one is overwhelmed by trying to do it all.”
Safety First: All people suffering with Alzheimer’s disease want to maintain their independence as long as possible, but don’t try to preserve your loved one’s independence at the expense of their safety. “Having a plan to ‘keep Mom in her home as long as I can’ or ‘keep my promise to Dad that I would never put him in a nursing home’ might not be in the loved one’s best interest in terms of their personal safety,” says Segal-Gidan. “Alzheimer’s is a progressive disease and keeping them at home isn’t appropriate at a time when they need constant care.” Some people with Alzheimer’s can remain at home if 24-hour home healthcare is available, but even this generally requires that a primary caregiver (e.g., family member) be present rather than act as a long-distance caregiver.
Don’t Complain: If you can’t be part of the solution, don’t be part of the problem. “I’ve seen many tensions between siblings on this point,” says Dr. Laird. “If you’re a longdistance caregiver, you don’t know what’s going on day-to-day, so you have to be careful about making critical comments about things other siblings are doing to care for the loved one. If you’re too far away to help, trust that other family members are doing the best they can and let them handle it.”
Check Online Resources: One good national source for privately hired, professional caregivers is the National Association of Professional Geriatric Care Managers (www.caremanager.org). If funds are limited, another option is the Eldercare Locator (www.eldercare.gov) to get information on area agencies on aging. These are organizations in every county for families who need assistance in providing social services or medical care that might be available through Medicare or county programs.
Finally, don’t overlook the positive aspects of long-distance caregiving. “It isn’t talked about much, but many people look at caregiving as an act of love and they feel honored by being able to do this for someone,” says Dr. Laird. “Approaching this type of care the right way can provide peace of mind that comes from knowing that your loved one is OK even though he or she is many miles away from you.”
Segal-Gidan adds, “There are many joyous moments in caring for people with Alzheimer’s disease—even from afar. You can laugh with your loved one, share your life with them and stay involved in theirs. For people who have been estranged from their parents and siblings, this type of caregiving can help the entire family create renewed, very fulfilling relationships.” ■