She has
had Early Onset Alzheimer’s for several years, but still drives to familiar places. I met Marianne in a writing class and we decided to have lunch at Saxby’s
by her home She consented to let me interview her at her home because there was too much noise at the restaurant she said. After the lunch, we
drove our two cars to her charming home. She shares this home with her working
younger second husband. In the garden a dozen or so trolls from Holland add
color. Decorations hang from her fragrant camphor tree in the middle of the
front yard.
Inside
the home I met her four-pound poodle appropriately named “Peanut”. Marianne
collects seashells, and giraffe figurines. Her abstract paintings done in an Alzheimer’s
painting class adorn the walls. After this tour of her lovely home and gardens,
we sat down for the interview and I was quickly impressed with her life and her total
acceptance of her dementia and all the ramifications.
Carol: Tell me about your charming accent.
Marianne:
I actually speak four languages-- English, Dutch, Spanish and French. I can
understand German as my first husband worked on computers in Germany.
Carol:
Where exactly were you born?
Marianne:
Aruba, but my family background is Dutch. Aruba is officially one constituent
of the Kingdom of the Netherlands, which appoints a governor for six years.
Carol:
How did you get to Aruba then from Holland or the Netherlands? And to America?
Marianne:
After WW II my parents moved to the island of Aruba—one at a time—my dad first
for three years until he could send for my mom and marry her there in Aruba.
Letters sailed from Holland to Aruba over the ocean while they courted. After
three years dad sent for mom who boarded a ship to marry in this Dutch West
Indies country. I am the oldest of their children. At the age of nineteen I
married an American and we moved to America where I now have a green card. My
parents and three siblings moved back to Holland when my dad retired where my
youngest sister finished her high school education. I am able to visit them
from time to time.
Carol: In
brief what has your life been like in America?
Marianne:
I miscarried twins my first marriage and eventually after nineteen years we
grew apart; I became strong and initiated the divorce. My career has been as a
LPN nurse. Then I met my second husband, six years younger than I am, and he
had a two-year-old daughter that I raised as my own. Today she is the daughter
I never had and she lives in Colorado Springs.
Carol:
Did anyone in your family have dementia?
Marianne:
My grandma on my father’s side may have had Alzheimer’s, but no one knows for
sure.
Carol: Did
your husband discover the memory issues?
Marianne:
Actually no. When we lived in Pennsylvania, I did insurance physicals. My employer here in
Florida actually discovered my Alzheimer’s. I was working in a Florida nursing
home where they do have an Alzheimer’s wing, and very aware of the problems of
those senior citizens. Somehow I had difficulty distributing the medicine with
a cart for thirty patients. I didn’t remember who had what medicine. My supervisors noticed my problems. So it was that the facility doctor gave me a prescription that said I shouldn’t work. I did try home health
care for a while after that. I did not work at all in 2012 and last year in
2013 I qualified for disability.
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One of Marianne's Favorite Plaques
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Marianne:
I drive to familiar places and use a GPS in case I need to punch go home. I still cook, clean
and buy groceries, but I have to have a grocery list. I remember being at a clubhouse
meeting two years ago and not being able to find my seat with my husband until
he came to get me. I had that "lost look". If I am home I am okay. I like home. I
found this plaque and it reminded me of Pennsylvania when we were just 45
minutes away from that plane that went down in September of 2011.
Carol: You are so knowledgeable about your Early Onset Alzheimer’s. I understand you have a girlfriend who also has it and you discuss it together.
Marianne:
Yes—she is my dear friend and we talk Alzheimer’s together—I study it a lot. We
want to be in the same room in a nursing home if we need to go there. Her mom
also had Early Onset Alzheimer’s.
Carol:
You are writing many things from the past while you have that memory in the
class we are taking. How does your short-term memory hinder you now?
Marianne:
At this point sometimes I just don’t remember that I repeat myself.
Carol: What message do you want people to know?
Marianne:
Communicate, people, while you can! I am done with lack of communication. I
want my loved ones to call. I want my sister to call me. My brother from
Holland does call. I enjoy my daughter calling. People can and do talk with me
about Early Onset Alzheimer’s.
Carol:
Yes, I learned with my husband that loving emotions do last. They want people contact. I have to say,
Marianne, that you are an awesome spokesperson and an inspiration to others. Did
it upset you to find out about your diagnosis?
Marianne:
I had two 45-minute crying spells about a year apart, and that was it. Now I am
living my life.
Carol: What activities do you enjoy now?
Marianne:
I paint. [She showed me the bedroom where she does this—her studio.] Many Saturdays my husband and I go to the beach. On Fridays I volunteer at Compassionate House distributing food and clothing. My husband
and I are taking a one-week missions trip to Guatemala with our church group
in August. I will be working with the babies there. In February we went to
Aruba for two weeks. We visited Holland. We still camp and we enjoy
our church. I agree with this sign I had to buy. It grabbed me when I saw it.
Around home
is where your journey begins the sign reads:
CELEBRATE FAMILY
CHERISH MEMORIES
DO YOUR BEST
BLAZE A TRAIL
FEEL YOUR SOUL
NEVER STOP LEARNING
Carol:
Have you and your husband been realistic about the course of this disease?
Marianne: Well, I got a bracelet that identifies me in case
I wander. I have charms on it and my husband made it so I cannot remove it. He
has one as well identifying him as a caregiver.
And, we have all of our legal paper work done and we are not afraid to
talk about this disease.
This interview inspired our whole writers’ group.
Marianne plans to be around, folks, and continue living her life. We all love
you, Marianne.
I enjoyed reading this interview with Marianne, Carol. It seems like she is trying to do the best she can with dealing with the early onset of Alzheimer's. I am glad she is able to be as independent as she is with driving and getting out there in the community. I hope she is able to continue that for a long time.
ReplyDeleteI remember visiting my in laws back in 2004 and over the course of the time we were there (we were living in Montana at the time, they were here in the San Diego area) my hubby's mother told me the same story almost word to work five times over the course of the weekend about a special student she had (she was a special ed teacher). I never "corrected" her that she had said the story before but just listened. A few years later she got diagnosed with Parkinson's and then the dementia that comes with it, but in looking back, I wonder if she was showing signs of dementia back in 2004 since she had trouble with her short term memory. Conversely, my mom was sharp as a tack up until the last few weeks of her life and that was the morphine effect.
Good interview!
betty
Marianne is so delightful and she has so much understanding of her dementia.
DeleteMy husband understood he had it, but tried so hard to act normal until the last several months when he just couldn't. He didn't talk about dementia.
Sometimes I would say, "Remember, Sweetheart, you have short-term memory."
Then he would quip, "Who are you?"
This makes Marianne even more remarkable to me--she gets it and studies her disease.