alzheimer's care

Stress of the Long Distance Caregiver

Sara lives three hours a way from her father, Rick, who was widowed several years ago.

Until recently, the distance between father and daughter was not a problem.  Ever since her mother had died, Sara would make it a point to meet her dad at a restaurant located somewhere in the middle, or drive to his home with her family for an occasional Sunday or holiday visit.

This changed abruptly when Rick suffered the first of several minor strokes.  He could no longer drive, so the regular dinners ended.  Sara became more and more concerned about his health and while he always reassured her that he was fine, she continued to feel uneasy.  In their phone calls, he would sound a little too subdued, a little less responsive.  Whenever she visited him, she noticed how her once vibrant and energetic father, a man who was the life of the party, suddenly seemed to be moving much slower and had little energy.  He didn’t seem that interested in her visiting, saying that he was tired and preferred she make it some other time. Things he once liked to do – like work in the garden or putter around in his workshop – he now avoided.  She worried about whether he was taking proper care of himself, and if he would suffer another, and more serious, stroke.

 

Sara also found herself regularly on the phone with his doctor.  She missed several days of work to drive Rick to the doctor, or simply to check up on him, days she could ill afford to lose.

She 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 felt like she was in a bind, and didn’t know where to turn.

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

  • If you are the primary caregiver, identify someone you can trust to be your eyes and ears when you’re not available. This may mean counting on a trusted neighbor or friend, or hiring a licensed home health care agency.  Professional home care services can range from non-medical care (for companionship, shopping, cleaning, etc.) for several hours a 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 on-call availability.
  • Find senior resources located near the loved one to identify available programs. These may range from Meals on Wheels to adult day care programs.  The process can begin by contacting the local Office of the Aging.
  • 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 accidents that are waiting to happen.  This may include such problems as loose rugs, poor lighting, faulty steps, and unsafe clutter.  It may also be time to install safety measures (such as grab bars in the shower or a higher toilet seat).
  • Work with your parent on creating an advance directive stating his or her health care treatment 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 (with the authority to make decisions should the individual become incapacitated to make them), acceptable treatment options, and steps to consider in the case of an emergency. This document, which can be changed over time, would be placed in the medical record and made available to all family and healthcare caregivers.
  • Consider the use of a Personal Emergency Response System. This provides the loved one with a pendant, to be worn at all times, that will trigger a call to an emergency vehicle and the caregiver should he or she fall or become ill.

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

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