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The Roller Coaster of Caregiving /
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The Roller Coaster of Caregiving
By Jane Cassily Knapp, RN, LCSWC
The decisions to become a caregiver
are usually made in crisis situations. We rarely have
time to consider the ramifications of these decisions
nor do we really fully understand that there are any
ramifications. What could be so difficult about caring
for someone we love?
In the ideal situation a family meeting should be called
to get an understanding from all involved as to what the
primary caregiver’s role will be. What are each family
member’s expectations and understanding of caregiving?
What is the family’s plan for support to the caregiver?
Scheduled assistance and relief to the caregiver should
be routinely incorporated into the weekly schedule from
The caregiving role is a pivotal one: You become the
center person, the “expert” in the care of someone.
Everyone else in the family is required to go through
you to find out what is now needed for this person. Your
new position forever changes your role with each family
It’s a little like working with the same group of people
on your job for 20 years and suddenly being promoted to
the boss. People who were your comrades and trusted
support system are now critical of you and your actions.
They don’t want your job but they’re jealous that you
have it. They may also feel that through your new
caregiving role you now hold control over their actions
to some extent.
Avoid pit falls……….. Dispel misunderstandings/ myths
regarding your desire to be the caregiver. Others not
available or not wanting the responsibility to caregive
may misunderstand your motives. Often this is rooted in
their guilt over not taking on this role themselves.
They begin to question………”what is your hidden agenda for
You must want the estate or checking account, etc. If
this is allowed to brew you may find yourself in the
midst of serious family conflict.
You think everyone should be so grateful to you for the
incredibly generous gift you are providing the family
and suddenly you become very hurt by these knives of
jealousy and misperceptions.
Usually caregivers are by nature giving people. This
additional responsibility seems natural to them. These
persons occasionally suffer from co-dependency. This
means that they have had a history of setting poor
boundaries and healthy limits to protect themselves from
being victimized or exhausted.
Others, not attuned to this, often misunderstand. They
may have healthier boundaries and would never allow
themselves to do more than they feel they can do.
Therefore, they assume that the caregiver is not going
to work harder than they can tolerate. If an exhausted
caregiver continues to try to provide everything needed
without asking for help, those around them assume that
they are fine. If they weren’t fine they would stop and
ask for help. The caregiver may become angry and feel
abused and victimized. They feel that others should know
that they need help but if you don’t ask, no one will
know. The people around you may not be unwilling or
uncaring; they just aren’t mind readers. No one enjoys
being related to a martyr.