One day, my father came home from a convenience store, with a big smile and two pieces of cake that looked a bit pricier than usual: “I’ve heard that this new chocolate cake is a collaborative work with a famous patisserie.”
“Hmm…my stomach isn’t feeling well, (so I
don’t want it,)” replied my mother, who lives with dementia.
In the past year or so, whenever she feels
down, Mother not only becomes indifferent but also keeps taking stomach
medicine.
Being a sweet bean paste lover, Father
usually gets a big bag of cheap, discounted Japanese sweets.
He must have bought this pretty, and a bit
expensive, chocolate cake at the convenience store imagining the happy face of
his wife. My heart ached as I put myself in his shoes.
Since Father is a regular customer at the
store, he may have had a conversation with store staff like this: “Wow, Western
sweets today? What’s the occasion?” “These are for my wife,” “How sweet of you!”
He must have brought the cake with such an
exciting feeling, only to face Mother’s
icy response.
Apathy is a symptom of dementia, so you
have to live with it. Father must understand this, but still, it must hurt him.
Each episode like this may seem small and
trivial, but as they pile up, they may eat away at loved one’s soul.
The sad-looking back of Father remined me
of a comment I’ve heard from a male caregiver: “I can keep living because I also
have places where I can be someone other than a dementia family caregiver.”
Since this gentleman loves gardening, he
spends a few hours once a week on a farm in his neighborhood. He grows
vegetables there with friends and gives them out to his neighbors, who really
appreciate him.
Perhaps, what Father needs now is also a
place where he can be someone other than the person supporting Mother, a place
where he is needed by others.
When you are too close to someone, you may
no longer say “Thank you” or “You’re wonderful” for the person’s small gesture
of kindness. Maybe Father needs a place where he can hear such words of
appreciation and recognition from someone.
In Japan, we are seeing more and more
opportunities for family caregivers to talk about their experiences. Some of
them, such as Orange Cafes, also welcome
people with dementia to come along.
But maybe we need something beyond and
outside care, letting us be someone other than struggling caregivers.
Probably, what we will need more is the people/places/relationships
that vaguely understand your family caregiving situation but do not touch on that
topic on purpose…
Instead of new places or relationships
being created, what really can be helpful may be “the usual” places that
already exist in your everyday life, like the convenience store for Father. I
keep searching for answers while stealing a bite of the cake for Mother ^_^
Shino Sawaoka
Associate Professor,
Dept. of Health Management,
Tokai University
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