The Stress of the Long-Distance Caregiver

Sara lives 3Image hours away from her father, Rick, who was widowed several years ago.

Until recently, the distance between father and daughter was not a problem. Since her mother passed away, Sara made met her father at a restaurant halfway between their houses. Or she drove to his home with her family for occasional Sunday or holiday visits.

This changed suddenly when Rick suffered the first of several minor strokes. The dinners ended, as he was unable to drive. Sara was increasingly concerned for his health even though he continued to reassure her that he was fine. In their phone calls, he sounded too subdued, a little less responsive and Sara was uneasy.

When she visited him, she noticed that her once vibrant and energetic father, a man who was the life of the party, moved much slower and had little energy. He wasn’t that interested in her visits, told her he was tired, or suggested they make it for another time. Things he once liked to do—working in the garden and puttering around in his workshop, he now avoided. Sara worried that he wasn’t taking proper care of himself and that he would suffer another, more serious stroke.

Sara was regularly on the phone with his doctor and she missed several days of work to drive Rick to the doctor, or simply to check up on him. These were days she could ill afford to lose.

Sara knew there was no way her father would ever agree to live with them, or God forbid, choose to give up the house and move into an assisted living facility—her father , after all, still cherished his independence. She was in a bind and didn’t know where to turn.

Sara’s situation is hardly unique. Rather, it is the life of a long-distance caregiver. She or he, living an hour or hundreds of miles away, whether the primary caregiver, child, sibling, relative or close friend responsible for the health and well-being of an aging or infirm loved one, faces difficult and complex challenges.

According to a study conducted by the National Alliance for Caregiving in collaboration with AARP, 15% of the estimated 34 million Americans who provide care to older family members can be considered long-distance caregivers, defined as living an hour or more away from their relative.

Living away from an aging parent can impact on one’s family life, finances, and career not to mention emotional well-being. It often requires long-distance caregivers to miss work to care for their relatives, manage and supervise paid care providers from a distance and feel left out of decisions made by health care professionals or other family members who live closer.

What can be done?

No hard and fast answers will give these long-distance caregivers peace of mind. Each case is different. Yet, here are several things to consider:

If you are the primary caregiver, identify someone who you can trust to be your eyes and ears when you’re not available. This may mean counting on a trusted neighbor or friend, hiring a licensed home health care agency. Professional home care services can range from non-medical (for companionship, shopping, cleaning, etc.) for several hours per week to live-in medical services (as provided by a trained home health aide), depending on the situation. Any agency being considered should include 24/7 call availability.

Find senior resources located near the loved one, to help identify programs that are available. These may range from Meals on Wheels to adult day care programs. The process can begin by contacting the local Council on Aging offices.

Pull together a list of prescriptions and over-the-counter medications used by your loved one, including doses and schedules. With many elderly people simultaneously taking an average of six different prescription drugs and three or four over-the-counter products, they could be at risk for adverse interactions. This list should be provided to both the individual and the caregiver who sees them regularly.

Make your visits count by looking for possible safety hazards in the relative’s home. Since visits are at a premium take advantage of them by looking for the accidents waiting to happen. This might include loose rugs, poor lighting, faulty steps and unsafe clutter. It might also be time to install safety devices such as grab bars in the bathrooms, or a higher toilet seat.

Work with your parent on creating an advance directive stating his/her health care preferences.  This written document can help family members avoid conflicts that can occur should there be any disagreement over treatment decisions. It should include naming a surrogate decision maker (should the family member be incapacitated and unable to make them), acceptable treatment options and steps to consider in case of emergency. This document, which can be changed over time, would be placed in the medical record and be made available to all family and health-care caregivers.

Consider the use of a Personal Emergency Response System. This provides the loved one with a pendant/device to be worn at all times, that will trigger a call to an emergency vehicle and family or caregivers, and should he/she fall or become ill.

For Sara and others, these recommendations can provide a measure of peace. This, after all, is life as we know it—in a world that has both grown smaller, yet resulted in families living further apart.

Shannon Taylor, RT (R)(CT), is one of the owners of Taylor Made Home Care in Willoughby, Ohio and can be reached by phone at (440) 946-6446 or by email at info@taylormadehomecare.com.

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About Taylor Made Home Care

Located in Willoughby, Ohio, we are a locally owned and operated non-medical/private duty home care agency. Our services include care/assistance for seniors, after surgery care, expectant mothers on bed rest, Alzheimer’s and Dementia patients. We provide respite care for family caregivers. We service Lake, Geauga, and Eastern Cuyahoga Counties in Northeast Ohio. A management team member is on call during non-office hours.
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