Long distance caregivers are a
special population. In
these times of geographic mobility related to unique personal situations
or career advancement, there exists a significant population of persons
responsible for the care of family or friends who live away from the care
receiver.
Caregiving can be challenging when the person being cared for is living
in the same house. It
can be even more difficult when the caregiver and the care receiver live
hundreds of miles apart. In today's society a distant relative must often
assume the role of primary caregiver.
Long distance caregivers face the same emotional
and financial concerns as those who live close by.
They
may also carry an additional burden of not being able to see for themselves
how the illness is affecting their loved ones. Those feelings of guilt
and anxiety make the ongoing support and coordinated care so important,
not only for those affected but also for their caregiver. While the issues
and responsibilities of caregiving long distance may be more complicated,
with the right mix of services, ongoing coordination, and support nearby,
long distance caregiving can work.
Often families enter caregiving through a catastrophic event. Planning
ahead helps to ensure comfort and safety and reduces the long distance
"crisis" calls and interventions.
It
is suggested that caregivers spend an extended period of time with loved
ones to determine what services are needed. Caregivers
should evaluate affected persons to determine how well they perform daily
activities, personal care, house- keeping, cooking and driving. Special
attention should be directed to decision making abilities and current living
environments.
When the caregiver lives far away from the care receiver friends, neighbors,
nurses, care managers, and home health workers become a
caregiver's eyes and ears. These
kinds of support are enough for a while but often more care and oversight
is necessary.
If
necessary, care receivers may often be placed in nursing homes or adult
day care where many of their longtime friends live. However,
it is important to maintain ongoing communication with facility staff and
friends who visit regularly. Even then they may not always provide a complete
picture of what is going on. Periodic visits may provide the oversight
necessary to monitor a loved one.
Locating
appropriate care services in a community with which you are not familiar
may be difficult. Fortunately, there are a number of individuals
and organizations that may assist. If the chronic illness is one around
which a national organization is affiliated with chapter, locate that national
office for the chapter closest to the caregiver. The Administration of
Aging's free Eldercare Locator Services at (800) 677-1116 is available
to track down other local agencies across the country.
A
geriatric care manager may also help caregivers to determine what assistance
is needed. Most
will also identify local options and oversee a person's daily care. These
services may be costly, but particularly useful for out-of-town caregivers.
A list of care managers in your loved one' s area may be found through
the National Association of Geriatric Care Managers at (520) 881-8008.
Families,
particularly those caring for someone in another state, should plan in
advance as much as possible . Social
workers, clergy, and attorneys may also help families. While a person can
still express his or her wishes, family members should discuss the legal,
financial and medical matters with the care receiver.
Caregiving
can be a stressful experience, especially from a distance. Even
when caregivers are not physically providing support for a loved one, they
are still mentally coping with the personal difficulties associated with
the illness. Support through groups, individual counseling
or personal friendships or families gives the caregiver comfort to learn
that they are not alone.
Most
caregivers share two common goals: quality of care for the ill person and
peace of mind for the caregiver. As
they work toward those goals, each caregiver should recognize that they
are doing the best they can.
Many
issues and questions exist for long distance caregivers. Travel
may be a financial, time, or geographically challenging factor. Guilt may
develop from not being physically present and lacking familiarity with
services available for a loved one. The task of arranging assistance may
become so overwhelming as to exacerbate and impede the caregiving process.
The many issues surrounding long distance caregiving are likely to continue to challenge the providers and receivers of care for older persons with chronic illness.
RESOURCES:
Long Distance Caregiving: A Survival Guide for Far Away Caregivers by Angela Heath, 1991, 122 pages Available for $16.95 from Impact Publishers, P.O., 1094, San Luis, CA 93406, (800)246-7228. (ISBN 09621333-9-6). This guidebook provides helpful tips, checklists and national resources and
caregiving organizations are also provided.Caring for Your Aging Parents: A Source book of Timesaving Techniques and Tips by Kerri Smith, 1992, is available for $13.95 from Impact Publishers, P.O. Box 1094, San Luis, CA 93406 (800) 246-7228. (ISBN 0-9621333-8-8) This is a 117 page book with comprehensive resources with an excellent chapter on long distance caregiving.
National Eldercare Locator Service, sponsored by the Administration on Aging, National Area Agencies on Aging, offers information and referral service links to state offices on aging or regional AAAs throughout the country. Phone: (800) 677-1116.
Cleveland Freenet on Alzheimer's disease supported by the Cleveland Chapter of the Alzheimer's Association is an electronic resource for distant Azheimer's caregivers who wish to talk with others about experiences and needed resources. Often users connect with caregivers who live in the
affected family member's community and are able to relate information of programs and services. The freenet also sponsors a caregiver forum, an online resource center and bulletin board. Call Sue Kacerek at (216) 721-8457, or go to Hytelnet. From there, choose "freenet-in-a.cwru.edu," freenet-in-b.cwru.edu," or "freenet-in-c.cwru.edu." Then, enter as a visitor (2 at the prompt), and at the next prompt type: "go alz."The above information was modified from an article, "Distance Complicates
Caregiving," from the Alzheimer's Association, National Newsletter Volume 16,
NO. 3 Fall 1996.
"Distance Complicates Caregiving"
Alzheimer's Association National Newsletter"Help for the Long Distance Caregiver"
Alzheimer's Association National Newsletter
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