It’s been over two years since my mother started showing signs of dementia. Looking back, and comparing my feelings now and back then, I think things were harder for me when I started noticing those signs.
At that time, I felt cursed by my knowledge
and experience as a gerontologist, who had a plenty of opportunities to meet
people with dementia and their families.
Why? Because I noticed these signs sooner
than other family members did, which made me feel depressed all alone.
Back then, dementia was someone else’s
problem for my family, including my father and mother.
But me, my mind was going in circles like, “She
may have it,” “No, I’m just thinking too much,” “Well, maybe I’m not.” Every
night I went to bed, I would pray to the night sky that I was thinking too
much.
Or maybe that was not what I was praying. I
may have wanted to lean on someone, or something, because I knew she had it.
What changed my depressing feelings was a study
group I met through my work: Their goal is to create a community where people
can continue to enjoy living even when they have dementia.
One of the group members is Mr. M, whose
wife had dementia with worsening symptoms. He always gave us inspiring messages,
and one of them particularly struck me back then: “I can’t do it by myself. You
got to let others know. I’ve also told my neighbors about her condition instead
of hiding it.”
Initially, Mr. M didn’t want to admit it,
and wanted absolutely nobody to know. So he would go to the hospital far from
his home and avoid taking the elevator with his neighbors at the apartment.
But one day, his wife left the house
without Mr. M noticing it, went missing, and was found half a day later walking
on a highway. According to Mr. M, the pain and regret from this devastating
experience has taught him the importance of accepting the situation and sharing
it with others.
That was probably when I started accepting
my mother’s condition and thinking about working with my family to accept it together.
But after all these two years, I still hear
my father’s quiet scream once in a while: “It’s really dementia, isn’t it?”
Now, my focus is more and more on finding
my father a role other than a caregiver, as someone other than a husband caring
for a family member with dementia.
I’ve also learned this from Mr. M, who had
said, “Once a week! I spend a few hours with my friends on the farm. I give
what we grow to my neighbors and hear them say thank you. The time like that
keeps me going and gives me energy to face my wife.”
I can relate to that, not as a caregiver
but as a mother. Right after my child was born, all I did was caring for the
baby, and I was always called “XX’s mommy.” That was tough.
Family caregiving is even more
unpredictable, and it is indeed important to have some support to find a role
other than “XX’s caregiver.” My father reminds me of this key issue every day.
Shino Sawaoka
Associate Professor,
Dept. of Health Management,
Tokai University
jzt1864@tokai.ac.jp
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