Yesterday, my husband Les died. No, it
was actually a year and 41 days ago, but it feels like
yesterday. I’m still wondering how this could
really have happened. He was diagnosed with
Early Stage Early Onset Probable Alzheimer’s Disease in
January 2000 at age 63.
For the first week after diagnosis, I kept
saying, “WE have Alzheimer’s,” but then I quit
saying that even though it was certainly true.
When a person is diagnosed with dementia, there must
be someone who is the caregiver. That someone
may be hired, but in most cases it is a member of
In many cases, that is the spouse of the person
with dementia. Whether that new caregiver
knows anything about the condition, she or he is
thrust into a role for which they may have no
preparation at all.
This article is about how I learned to become a
caregiver and what I found to be the 10 most useful
things to know in caregiving—not only for myself,
but also for Les.
1. Love: Sometimes
we don’t have strong feelings of love—when we are
tired, scared or angry about the situation. I have
heard and read about situations where there is a
great deal of anger simmering in a relationship that
may make it extremely difficult to be a caregiver.
“Brotherly” love may help to get through those
difficult times. Inspirational readings can be
calming and encouraging. It may be useful also
to talk with a clergyperson or a therapist.
2. Learning: Learn
as much as possible about the particular kind of
dementia your loved one has. There are many
books about the subject now as well as articles on
the Internet. Ask the doctor for
recommendations about ideas for reading. If he
or she doesn’t have any, then try the library or
3. Support groups:
I cannot say enough about the value of support
groups. I learned as much from other
caregivers about how to handle situations as I did
from anywhere or anyone else. Fellow
caregivers can be an absolute goldmine—not only for
ideas, but for venting when things are tough.
It takes a fellow caregiver to fully understand what
you are going through.
4. Humor: This is
one of the best ways to get through those sticky
situations where you are getting resistance or
disagreement. Your own “private” jokes with
your loved one may be great for maintaining a bond
Another way to get through a difficult time is
diversion. When humor doesn’t work, coming up
with an alternative activity or topic of
conversation usually does. It may be
something as simple as looking for a favorite
object; i.e., “Now where did the coin box go?” or
possibly offering a drink of water or a “treat” that
is appropriate to the person’s diet.
6. Exercise: This
may sound like a nearly impossible thing to do if
you are a 24/7 caregiver, but it is not. It is
really on a par with being in a support group.
Physical exercise is very important for anyone with
dementia and their caregivers because it helps with
depression, stress and overall health. There are
several ways to do this. One possibility is to
take your loved one with you as long as she or he
can walk. Another option is to leave him/her doing
some activity for the duration of your walk or other
exercise. Finally, ask a family member, friend
or agency person to stay while you exercise.
7. Planning: Time
to plan ahead may vary with the extent to which the
dementia has progressed when the diagnosis is given.
Contact an Elder Care Attorney and have him or her
help prepare all the Advance Directives one needs.
This includes Power of Attorney, Living Will,
Healthcare Power of Attorney and a regular Will.
You may also want a Do Not Resuscitate (DNR) Form.
8. Meaningful Activities:
While this may seem like an improbable
recommendation for a person with dementia, it was
definitely my experience that non-pharmacological
activities were a key to a slower progression of the
disease in my husband and others with dementia.
Just as we are given suggestions for activities to
“prevent” dementia, I strongly believe that
activities can keep those already diagnosed from
going downhill faster. It does not have to be huge.
For Les, one year it was helping to propagate
poinsettias over a year for the Christmas show at a
Chicago conservatory and then taking people there to
see them all. Other years, it was going to
various nearby attractions with a caregiver willing
to take him places to keep him seeing new things and
9. Dignity: As long
as possible, it is important to treat those with
dementia with as much dignity as possible.
This occurs not only through participation in
meaningful activities, but also when going to visit
the doctor. One of my husband’s most important
messages to doctors and other groups he addressed
was that patients do not want to be ignored or
separated from the caregiver during discussion. If
there were things I wanted the doctor to know that I
didn’t want to say in front of Les, I wrote them
down and handed them to the nurse before we went in
so the doctor could read them. It is not always
easy to work around the patient as their abilities
diminish, but it is vital to allow them to maintain
their dignity, and especially not to treat them as a
child. They have a lifetime of experience even
if they have lost some skills, so they must be
allowed personal freedom balanced with the degree of
10. Respite: This is last, but not least. Even
though Les had long-term care insurance so we could
have paid caregivers to come in a few hours a day, I
did have a stroke after 10 years of being a
caregiver. It was only then that my sons
suggested we put Les into a nursing home.
If you have long-term care insurance, it’s good to
use it while your loved one is still home so you can
get much needed breaks. If you don’t have that
insurance, hopefully family and/or friends will
offer to help. If they don’t offer, ask.
It you still need help, try your church or social
service agencies in your municipality or township.
I have very fond memories of Les even after he
was diagnosed with Alzheimer’s. I will never
forget that he was still Les until the day he died;
he was always “there” after 11 years.
Being there for those moments was a blessing for me
and our whole family. Dementia is a disease, but it
doesn’t have to be a disaster.
Barbara Hanson Dennis has a Master’s in
Industrial Relations from Loyola University Chicago.
She taught at three universities as well as serving
on the staff of the Illinois State Senate. She
was also a fundraiser for the University of Illinois
Extension. Ms. Dennis also consulted with her
husband, Leslie E. Dennis, Ph.D., in countries such
as Tunisia and Vietnam.
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