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Caregiving
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Eleven
Reasons Why I Joined a Support Group §
The
Common Bonds of Caregiving §
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The Common Bonds of Caregiving
What
is caregiving, and how do you define a family caregiver? What is the common
thread that ties together those of us who care for spouses, children,
parents, siblings, partners or friends who are chronically ill, frail or
disabled? It certainly isn't the tasks of caregiving. They vary
so much, from helping a developmentally delayed child learn new skills, to taking an aging parent
to frequent doctor’s appointments, or suctioning
a spinal cord injured spouse virtually every hour every day. It
surely isn't the number of years involved. Caregiving can last a few short
months. It can last three to five years. At times, caregiving is a
lifetime commitment. Location varies from
situation to situation. Although most caregiving goes on in the home, and
most caregivers and recipients live under the same roof, talk to anyone whose
parent is in a nursing home and you'll quickly learn that caregiving doesn't
end when someone else is responsible for day to day care, or when caregiving
takes place long distance. If
it isn't the responsibilities or tasks, and it is not the length of time, if
it isn't the location - what is the essential bond of caregiving? What does
caring for a spouse with multiple sclerosis have to do with caring for
parents who are losing their independence, or a child with epilepsy? In
1994, when the National Family Caregivers Association (NFCA) conducted its
first caregiver member survey, we were seeking to find that common
bond, to define the link between all caregivers. We found in no uncertain
terms that the common bond of caregiving is its emotional impact. In 1997 when we surveyed
our members again, we found the same thing. The
common bond of caregiving is the intense sadness we feel because someone we
care about has suffered a brain injury, is
losing their mobility, will never achieve normal life functioning. It is
the sadness that comes from wanting the miracle of normalcy. The
common bond of caregiving is the upheaval of changing family dynamics that
occurs because life has been turned upside down and because there is no set
timetable for working through the painful stages of grief which caregivers
and care receivers all experience in their own personal and private way. The common bond of
caregiving is the sense of isolation that comes from living outside the norm,
from having everyday activities of life - dressing; walking; toileting; breathing, thinking clearly - that everyone else takes for
granted, become such a big focus in your own life. The common
bond of caregiving is the frustration we all experience because it is so hard
to get things done,
because non-caregivers just don't understand, because healthy people park in
handicapped parking spots, and because people who are supposed to have the
answers often don't. The
common bond of caregiving is the stress we feel because we don't have enough
leisure or personal time, and the common bond of caregiving is unfortunately
often the severe depression that so many of us suffer. These
are the common bonds of caregiving that tie us to one another, that develop
in us an innate understanding of each other's pain, each other's lost dreams,
each other's fears. These
shared emotions, these very difficult emotions, are the common bond of
caregiving. But there is another common bond,
another shared emotion, that we don't recognize as often as we should. It is the inner strength that most of
us never knew we had. It
is the fortitude to go on despite the pain. It is the wellspring of hope we
always dip into. It is the power to make a difference. It is the clever way we
solve a difficult problem. It is the knowledge that we have been tested by fire, and we have
survived. Our
inner strength is the gift we have been given. It is the "pay back"
for the pain, and although many of us would gladly trade it in for an easier
life and our loved one's health and well being, we
nevertheless ought to recognize its extraordinary value. The problem is I don't
think most caregivers do recognize it. I think most caregivers are so caught up in the act of caregiving that they
don't step back and look at the extraordinary things they do. I think a great many caregivers don't
even identify themselves as caregivers. This
is not surprising. The term caregiving does not exist in most dictionaries.
Caregivers have not been counted in a I
wish it weren't so. I wish caregivers were given their just due. I wish
caregivers themselves would recognize their value, acknowledge their
individual achievements. Empowerment is an overused
word, but it is the one that comes to mind when I think of what I want for
caregivers. Empowerment
for me means a sense of self confidence, a belief in one's ability to have
some control over
situations, a sense of pride, a feeling of self respect and self worth. For
the most part, we use our inner strength
to help our loved ones and to get through difficult caregiving days. We need
to begin to use it to take better care of ourselves, to feel proud, to
experience the beauty of self love. I received a letter recently, actually an e-mail,
from a member of the National Family Caregivers Association. She said that NFCA had become a
great solace to her. She said that we made her proud to be a
caregiver. Proud to be a
caregiver. I mulled the phrase over in my mind for quite some time before I
realized that the true definition of caregiving is buried in that phrase, in
the understanding that caregiving is a role that tests our abilities, our
faith, and our character. What
is caregiving? How do you define a family caregiver? I think I have the
answer now - you define family caregivers by their emotions
and their spirit, by the sadness in their eyes, but also by the determination
in their hearts. Caregivers are very special people. This article first appeared in Paraplegic News. |
SouthWest Kansas Area Agency on Aging,
Inc.
620-225-8230 • Older Kansan's Hotline 800-742-9531 • Fax: 620-225-8240 • SWKAAA@hotmail.com
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