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 I saw it from a distance with Grandpa. He was in
California; we were in the Midwest. Visits were rare and brief, but
the passing years seemed to change him from a feisty, spunky
"character" to a confused man whose personality appeared to have
vacated the premises. We were told that his last days were spent
with no awareness of anyone, even though family was gathered around.
It was called "hardening of the arteries," but looking back with
what we know now, it was Alzheimer's, misunderstood and untreated.
We grieved at his passing, but we realized we had already been
grieving the loss of the Grandpa we once knew. That was 1980.
About ten year later, my dad started to change. He lived close
enough that we saw it unfolding gradually. At first, we just
observed "incidents." He made wrong turns navigating the town where
he lived for 30 years. In his classroom he repeated lectures without
realizing he had delivered all this information the previous day. He
came back from his daily run showing evidence of a serious fall, but
with no memory of how it occurred. As we travelled together he asked
the same questions repeatedly, with no sign that the answer I gave
ever registered.
These patterns gradually intensified over the years. His living
environment changed. He decided to sell his home and move into a
"senior apartment" where he was independent, but others monitored
his comings and goings.
Eventually, because he was making decisions that endangered himself
and others we chose for him to live in close supervision.
Fifteen years ago, that meant nursing home care. For one whose body
was still much healthier than his mind, such a restrictive
environment seemed cruel to him, but we felt we had no choice.
By this time "Alzheimer's" had become part of our vocabulary, but
his general practitioner seemed not to want to diagnose. Yet the
persistent decline in mental capacity, the ever-worsening loss of
memory, the pervasive confusion about place and time, these all
pointed to Alzheimer's Disease.
Here is some of what we know about Alzheimer's.
- There are 5.2 Million Americans (220,000
Illinoisans) who have Alzheimer's.
- Research is expanding rapidly, but there is
no known cure.
- Alzheimer's is a terminal disease, ending
life directly or through complications as the damage to the
brain aggressively impacts other organs.
- People with Alzheimer's typically die between
three and eight years after the diagnosis, though some live as
long as 20 years.
It is a horrible disease. But I am in the
midst of living through Alzheimer's with another loved one, and
it is NOT all gloom and despair.
Nine years ago, my wife began showing unmistakable signs of
dementia - decline in short-term memory, confusion about time
and place. We requested referral to a neurologist for
evaluation. The Department of Memory and Aging at SIU School of
Medicine opened to us extensive evaluation, which confirmed the
dreaded Alzheimer's Disease diagnosis, but they also offered
partnership and hope.
We continue in their care, receiving guidance, medicine to
maintain wellness, and participating in a long-term test that is
exploring possible antidotes.
There are things we have said good-bye to. We used to travel
internationally, but the complexity and confusion of such travel
does not fit well with Alzheimer's. Mary used to do most of the
cooking in our home. Inch-by-inch, dish-by-dish I have taken
over the preparation. She can still do a single task like
boiling the water for tea, chopping salad veggies, but
multi-step recipes become too confusing.
For daily activities, I have become more attentive than I would
prefer. I 'okay' her still good choices in what to wear,
choosing to care more about that than what my natural impulse
would lead me. For any medical visit, I have to be present, not
because I do not trust the doctor, but because she is not able
to remember any diagnosis, or directive given.
We put limits on her driving, finally choosing to completely end
her driving because of concern for getting lost, and a
realization that her slower reaction time could present a danger
to her or to others.
But there are many things she still does with zest. She attends
church, concerts, meetings, Bible studies, enjoying each event
and greeting people she recognizes, or who look friendly.
She does twice-weekly water exercise to relieve her arthritis
pain, and weekly exercise program sponsored by Alzheimer's
Association that enhances her balance and mobility.
Any activity that provides social interaction lifts her spirit.
She also enjoys road trips, though we stop every couple of hours
and limit daily mileage to about 400 miles. I'm more flexible on
plans than I used to be.
Early in our experience with Alzheimer's we made the decision to
"go public" with the diagnosis. This has been a helpful
decision, avoiding the awkwardness of people puzzling over her
sometimes surprising responses. People know that when she
repeats questions, it is not because she is not listening. Her
brain just can't process the information.
Friends offer to help. She does not need a "baby-sitter," but
there are times when it is good for each of us to go, be, or do
without the other. Friends jump in at that point. Our adult
children step up for extended times when a fishing trip for me
may offer more grandchildren time for her.
Open communication about Alzheimer's has been good for us, and
for the people we relate to.
The open communication has some challenges. We attempt to live
within the dictum: "Don't argue."
Historically, we practiced respectful argumentation as a means
of resolving differences. But Alzheimer's changed that. The
disease blocks the ability to learn new information or concepts.
The result is that arguments can neither be won nor settled.
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 The factor that enables communication to be
effective is a 50-year-long commitment. At the beginning of our
marriage we promised to love in all situations, including "in
sickness or in health." The pledge was sincere, but not insightful.
It is something we said because we were "in love." It was a great
feeling, but the feeling would not sustain a lifetime relationship.
The passage of time has led to a transition from "in love" to a more
mature "practice of love." It is this still-maturing love that
enables a satisfying relationship to exist, including a trust bond
that resolves differences and uncertainties.
In short, my wife trusts me when she does not understand, and I
trust that her most frustrating behaviors are not intentionally
designed to frustrate me. As we draw a disagreement to a conclusion
with love being reaffirmed, Mary often says, "I guess it will only
get worse." My only response is, "But we will still love."
And we have to work at it.
In our open approach to managing dementia we often have
conversations with other people who are in early stages of dementia.
There is a tendency to imagine that frequent memory lapses today
mean that next week will feature lying in a fetal position with
blank eyes staring into space, jaw agape, unresponsive to any
stimulus. That image may describe a few Alzheimer's patients at the
end stage, but the last moment of any terminal disease is not
pretty.
What I encourage is to actively plan the several
years likely faced between now and the final outcome. Specifically
make the following choices:
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Re-commit to a covenant of love.
-
Understand the nature of the disease. Learn both the limitations
and the opportunities to be found for the next few years.
-
Seek out the best evidence-based medical care. Consider engaging
one of the drug trials that may soon help find the first person
to be cured of Alzheimer's.
-
Reaffirm your support system. Inform them of your challenge,
inviting their partnership in facing the dementia.
-
Work at communication, using clear verbal communication, and
supplementing with sticky-notes, white boards, and any other
helps you might discover to meet your distinct needs.
-
Try to maintain active living, making accommodations where the
disease progression requires changes, but still providing
experiences of joy, even if the joy is only for the moment.
-
Participate in Alzheimer's Support Groups, exercise programs,
and informational resources available through the Alzheimer's
Association website, www.alz.org
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If
you are the spouse or family member who is giving primary
attention to the person with dementia, accept the title of
"caregiver" and realize that you can fulfill that role most
effectively when you take care of your own physical, emotional,
and spiritual wellness, and when you accept the help that is
available for caregivers.
The website:
www.aarp.org/caregiving
is a good place to start. The 36-Hour Day by Nancy L Mace and Peter
V. Rabins, published by Johns Hopkins University Press, provides a
wealth of information for every stage of caring for a person with
dementia.
I would not wish Alzheimer's on any other person, but every 66
seconds another American is diagnosed.
If you or someone you love faces the diagnosis, one of the best
resources you have is love - persistent, resilient, adaptable,
well-informed love that works to provide your loved one with the
best life available while journeying through the disease. Both you
and your loved one will be grateful for that choice.
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