It has often been said that the hidden victims of
Alzheimer’s disease are the caregivers. Studies have
shown that the typical Alzheimer’s caregiver tends
to be depressed, often neglects his or her own health
needs due to the intensity of caregiving, and many
times dies prematurely, leaving the Alzheimer’s
patient to be cared for by someone else.

     My own mother was such a caregiver who tried to care for
my father without ever reaching out for help and
admitting that she was dealing with Alzheimer’s
disease; she died much too soon at the age of 65.
My caregiving experience stretches over
several decades. As a child, I had a heart for older
people and loved to visit with them. I sat beside
my grandfather’s bedside day after day, listening to
stories and learning from his wisdom before he died
of “heart trouble” in the early ‘50s. I raised two
children and adopted countless neighbors’ children.


 

Later I was called on to care for my mother when she was dying of cancer.
But the most difficult experience of my life was my father’s Alzheimer’s
disease, the “long good-bye” as they say.
I was a successful counselor in private practice
in 1994 when my mother died and left my dad to
be with me. My husband and I tried keeping him in
our home but were overwhelmed with the task of
staying up at night with dad wandering throughout
the house and then having to put in a full day at
work, coming home to repeat the process again.
Then came the experience of trying to find a suitable
place for him to be cared for. After two unsuccessful
attempts at placement, we settled on the long-term
care facility at the hospital across the street from
my office. I was trying to see clients during my
work hours, while needing to run across the street
several times throughout the day when Dad became
agitated and only I could calm him down. I found
myself experiencing the same symptoms of anxiety
and depression that I saw in my counseling clients!

    I wanted my dad to be treated with dignity and
respect, and I was vigilant in making sure that every
CNA that came in contact with him knew exactly
how to treat him.
 Looking back, I was probably not
their favorite family member to deal with because
I visited every day and made sure his treatment
plan included his being well-groomed with nice
cologne on, hair brushed smoothly, a clean shave,
and different clean clothes on every day.

    Alzheimer’s caregiving can be a long journey.
It can be between 2 and 20 years from diagnosis
until death, the experts say. The years passed and
daddy’s Alzheimer’s progressed to the point that I
found myself unable to concentrate on my clients
for thinking about my daddy across the street in
torment.   I closed my counseling practice abruptly
and concentrated just on Daddy until his death about a year later.
As a counselor for over twenty years, I have
dealt with many caregivers of elderly parents who
have been referred to counseling by their physicians
due to stress. I’ve had to teach them to take care of
themselves by paying attention to their own needs
and seeking additional help so that they don’t wear
out before their caregiving duties are completed.
We know that caregiver support groups can be
one of the most welcomed resources for Alzheimer’s
caregivers. If there is not one in your community,
it’s easy to start one; just contact the Alzheimer’s
Association Mississippi Chapter (601-987-0020).

It was only because I had started
an Alzheimer’s Caregiver Support
Group whose members supported
me in my struggles and that I knew
from counseling training to take care
of myself that I was able to come
through those caregiving years with
some measure of sanity!

For years, I had been the one preaching,
 “take care of yourself” to clients and fellow
support group members. I found out that it is a lot easier to focus on
someone else and take care of them than to
take care of yourself. Take a
break? Relax? Exercise? Pray? While caregiving had come naturally for me,
I had to learn to take care of myself just like everybody else.
While caregiving had come naturally for me, I had to learn to take care of myself just like
everybody else. Through the years our group has been in operation we have had
excellent speakers: doctors, nurses, social workers, pharmaceutical
representatives. We’ve learned about medications to treat the
symptoms of Alzheimer’s and other types of dementia. We’ve
learned where and how to ask for help, using the resources in the
community like sitter services, day programs, home health, and
hospice. We’ve learned about legal and ethical issues in dealing
with dementia. Most importantly, we’ve learned the value of
laughing and sharing our experiences with one another. As we
visit and have refreshments together, we know that we are not
alone in our caregiving. While we have hope that a cure will
one day be found for Alzheimer’s, we are learning to live in the
present and do everything possible to improve the quality of life
for our loved ones affected by Alzheimer’s and for ourselves. We
don’t want to be the next victims.

Dianne S. Arnold is a Licensed
Professional Counselor working
as an Alzheimer’s Trainer for
the Division of Alzheimer’s and
Other Dementia, Mississippi
Department of Mental Health.
Her office in Cleveland provides
education and support
for at-home and professional
caregivers in North Mississippi.
She can be reached by calling
662-846-5335.