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 onset.
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 member.
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 caregiving?”
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.
When a dependent
family member first moves into your home for care giving
there is often a “honeymoon” period.
Everyone is polite,
friendly and appreciative. This new change in the family
dynamics can temporarily make even old persistent family
problems seem like they have been resolved or forgotten.
Everyone puts his or her best foot forward.
However, as many of
you are aware, this is often short lived. The
“new” family member may offer “suggestions” about how
your family should do things; especially concerning how
you should raise your children. There is no longer just
you and your husband watching TV in the evening. His
mother is sitting in between. Your children
compete for attention by fighting with each other while
you’re changing grandpa’s diapers. They may let you know
how they feel about the new member in their home by
acting out at school; grades may drop. All these
wonderful things add to your exhaustion and frustration.
Your mother-in-law may re-arrange your furniture or your
kitchen closets. And just to make life more interesting,
you are up every 3-4 hours to take your new family
member to the bathroom only to get there and have them
say, “I guess it was just a false call.”
There are many
positive gifts to be had by participating in caregiving.
You have the unique opportunity to get to know the
dependent person in a very intimate and wonderful way.
You can experience tremendous satisfaction from
caregiving. You become the model for family members and
others who take on the caregiving experience.
You provide the gift
of allowing the dependent person to live in a home
environment and to be taken care of by someone who loves
them and who will honestly work to maintain their
privacy, security, and personhood.
Family caregivers
have history with the dependent person. They knew them
before their many losses. They knew and respected the
personhood of their past. Therefore they don’t only see
them as who they appear in the present. This provides a
connection and intimacy that is very comforting.
Family caregivers
also provide a sense of comfort and relief to the other
family members of the dependent person by the fact that
they now have the peace of mind that their dependent
loved one is being cared for by someone who really cares
for them.
We have mentioned:
-
Anger
-
Ambivalence
-
Exhaustion
-
Frustration
-
Guilt
As difficult
feelings common to the family members of a dependent
person and the caregiving role.
Now let’s look at
Scorekeeping—Who
did what, when? Who did more? Whose turn is it?
Who never takes a turn? Who is the most exhausted?
There is no equality in caregiving as in parenting. Be
careful not to fall into this pit. It will only add to
further family discord.
Advise Givers—Sometimes
those family members who, for various reasons, are not
the primary caregivers attempt to make themselves feel
less guilty or more involved than they actually are by
stopping by weekly or monthly to loudly advise the
caregiver regarding all the things you aren’t doing
adequately for “Mom” or all the ways in which you need
to improve your caregiving.
Don’t allow yourself
to be hurt by these people. Just let them vent. They are
only trying to take care of themselves. It’s not really
about you or the quality of your caregiving. You may
choose to respond by saying, “I know it must be very
hard for you to not be able to be here as often as you
would like to be and not to be able to do the things for
Mom that you wish you could.”
Overcoming Losses
One thing that is
often overlooked by the caregiver and other family
members is the impact of the losses for both the
caregiver and the dependent family member. A wife may
miss the husband she has known and loved for many years.
She experiences the loss of the friend with whom she has
shared interests and confidences. Who was her companion
for parties, grocery shopping, going to church or just
taking a walk or watching TV together. Not only have you
lost your friend but now you may have to take on the
roles that this person used to hold within the
relationship
like financial responsibilities and
household jobs.
You may feel guilty,
angry, and sad for feeling like “this isn’t the person I
married.”
The dependent loved
one experiences many losses as well. Their lifestyle,
their independence, their jobs (at home and/ or at
work), their health, friendships with co-workers or
others are now cut off. Others now see them as invalids
but they may feel like screaming “I’m in here and I’m a
person!” It’s very hard to tolerate a constant
state of dependence.
On whom do we find
it easiest to take out our frustrations? The person we
love, of course. When we are totally dependent on that
person, we often take out our anger and frustrations.
This can make for very difficult times.
Ambivalence—We may
find ourselves saying “I want to do this…I don’t want to
do this…..I wish this was over…” Does that mean I don’t
love this person? “Sometimes I daydream about their
funeral. Sometimes I wish they had died while they were
independent and not survived to be in this state.
What’s wrong with me….sometimes I wish they were dead.”
Does that mean I’m terrible?
You are not terrible
for thinking these thoughts. You are not wishing the
person you love is gone; you are wishing this state of
constant caregiving and decreased quality of life for
your loved one are gone. You are wishing your exhaustion
and frustration are gone. That is why you need to
improve your self caregiving. Your dependent loved one
is counting on you to be there for them but you can’t do
this if you don’t take care of yourself.
What you can do to
assist in caregiving and to care for yourself.
-
Allow others to
help you.
-
Be assertive of
your needs.
-
Set healthy
boundaries.
-
Use respite
services.
-
Participate in
support groups and church activities.
-
Exercise.
-
Take time out
for yourself and your family; take vacations.
-
Make sure you
have planned caregiver relief routinely into your
weekly schedule.
(i.e. Every Tues. from 2-5 my
sister Mary comes in to care for Joe. Or my friend
from the church comes in every Wed. 1-3.) Don’t wait
until you are exhausted to ask for relief!
-
Maintain your
own health. Keep routinely scheduled doctor
appointments, counseling appointments; get adequate
sleep and nutrition.
-
Use a “baby”
monitor so that you have peace of mind while working
in the yard or doing anything out of ears’ length of
your loved one.
-
Use a monitor if
applicable so that you can safely leave your loved
one for short periods.
-
Invite friends
in.
-
Create a private
space for you and your family within your home for
socialization away from the dependent person.
-
Allow yourself
to vent your frustrations.
-
Don’t beat
yourself up with guilt.
-
Compliment
yourself for the tremendous caregiving job you are
doing.
Jane Cassilly Knapp
has a been a healthcare professional for many years. She
has always felt privileged to have worked with family
caregivers throughout her career, saying, “I never fully
appreciated the caregiver role quite so much until I
found myself juggling the demands of providing care to
an elderly family member in my home, while caring for my
growing children, and working in my career full time. I
then drew on the wisdom I had gained from the families I
had served and realized that all the time I was helping
them they were helping me as well.”
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