Dementia: The Hardest But the Most Beautiful Times Were When There Were Glimpses of Her Former Self

By November 1, 2016 April 19th, 2017 Japan, Young Caregiver
Born and based in America, Carina Mask was always traveling back to Japan to visit her grandparents. She documents her grandparents’ love in their final stages and shares what it was like experiencing the loss of her grandmother to dementia.

A Photo Story By Carina Mask

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As a child I moved around a lot, because of my father’s job. Each time a new job assignment, a new country…a new school. I was perpetually the new kid. At times, my grandmother was my only friend.

When I got older, Japan became a very special place to me, it was home-mostly because of my grandparents. They both welcomed me with open arms and maybe a little too much sake.

My obaachan, my grandmother, began to have memory issues when I graduated from high school. After spending almost two decades in America, she wanted to return to Japan. She even rekindled her relationship with my grandfather; they had been separated for many years.

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At first, it was very subtle…her personality started to change; she became more reclusive, less talkative. I began to worry about her forgetfulness or how frequently she lost things. Everyone kept telling me, it just happens when you age. I wasn’t entirely convinced; I knew something wasn’t right.

I told my grandmother I wanted to practice writing Kanji, Chinese characters, I feigned that I didn’t know how to write them but she confirmed what I had feared, she had begun to forget how to write.As a child, I remember she took such pride in her beautiful handwriting.

Merriam-Webster defines Alzheimer’s disease as “a degenerative brain disease of unknown cause that —results in progressive memory loss, impaired thinking, disorientation, and changes in personality and mood — by the degeneration of brain neurons.”This definition doesn’t explain the complexity of hardship for people with Alzheimer’s, their families or caretakers.

My grandmother was fortunate as my mother and aunt took turns close to a decade, putting their lives on hold to take care of their ailing mother. Sometimes she didn’t recognize her daughters but they stayed in Japan for months at a time to cook, to clean, to manage everything else.

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As a small child living in Virginia, I remember spending hours in the woods with her foraging- so proud of myself when I found chestnuts or edible mushrooms-she would always smile and nod to me. She taught me how to catch tree frogs and rub their tummies to calm them. Or when I accidentally killed one of my goldfish, left outside during winter, it turned into a fish popsicle. She helped me thaw and bury him.

When I was a little older, my family moved to Panama. The foraging didn’t stop. When we went to the beach, we would search the tidal pools for sea urchins. I always wanted to impress her with how many I could find.

My grandparents loved hot spring spas, so we would visit often. Sometimes it was more stressful than relaxing because my grandmother would try to wear stranger’s clothing after bathing. Other spa-goers yelled at us even though I apologized profusely and tried to explain my grandmother’s condition. She didn’t understand what was going on- just that people were yelling at her and she would get upset. I would defend her and we would rush out of changing area and wait for my grandfather to finish with his bath.

She was a fashionista, she always dressed neatly. Her hair was always perfectly coiffed, never showing any grays. She even taught me how to dye her hair; separating each strand of hair with a comb and distributing dye evenly- it was our bonding time.

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My ojiichan, my grandfather was diagnosed with stage III lung carcinoma the summer of 2012, the doctors said he was too old to operate on, and he opted out of chemo because it would impact his quality of life dramatically. We were given a crushing prognosis, the doctors estimated he would pass in 3 to 6 months.

He fought really hard, he never ate vegetables in his life, and smoked like a chimney… but when he found out he had cancer…he was a veggie eating machine and quit smoking.

One distinct difference I remember between my grandparents …When you have cancer, everyone turns a sympathetic ear and visits frequently to give you words of encouragement.

In my experience, it seemed my grandmother was forgotten by her friends because they didn’t see a point in visiting her because she wouldn’t remember anyway. I remember, different people who were my grandmother’s friend say Dementia and Alzheimer’s aren’t real.

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As the dementia progressed, she started to refuse to take baths especially when she soiled herself. She would try to hide it and
sometimes would get violent if my mother or aunt suggested bathing.

My grandfather’s health began to wan very quickly the summer of 2013. He was bed ridden, we moved him around every few hours so that he wouldn’t get bed sores. He wanted to pass on at home.

I knew he felt bad that he was passing before my grandmother. While he was still able to talk, I asked him when it’s time for obaachan (grandmother) to pass that he would come pick her up so that she wouldn’t get lost or confused.

In Japan, people say that your loved ones will come and pick you up when you’re going to the other side.

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My ojiichan (grandfather) passed early on the morning of July 8th 2013 my mother, my aunt and I sitting next to him, holding his hand…telling him it was okay to go, and he didn’t need to keep fighting if it hurt too much.

They were distraught, I checked his breathing and his pulse. He was gone, so we called the nurse. It took her an hour to get there because of the torrential downpour that ensued when he passed, took the doctor another hour to get there.

They pronounced him just a little before 5 am. The mortician arrived shortly after, and prepared his body.

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Both my parents, aunt and uncle went to bed….but obaachan (grandmother) woke up.

I tried to explain that Ojiichan passed, but she didn’t understand what I was saying.. She only felt this nagging feeling that someone was missing.

She would search the entire house, up and down, up and down the stairs all morning.

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She finally fell asleep around 8am when I was cuddling with her.

Then, around 9:00am the first round of mourners arrived… it continued like that for one week.

Then we had the cremation, and then funeral.

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That’s when I noticed how fast obaachans (grandmother) mind seemed to deteriorate after he passed.

He was her one constant thing in life…she couldn’t recognize her daughters who had grown up, her family who aged.

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Eventually she forgot how to eat; we mashed food and fed her with a baby spoon. If there was any morsels left, she would spit it all out. The hospital visits became more frequent; she was hospitalised several times for dehydration and Urinary Tract infections.

Two weeks before her death, I came back to America; the last thing I said to her was I would see her in the summer.

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The early morning of January 27th 2015 she passed away in her sleep.

I loved her stories, she often told me about a mountain cottage in Hokkaido. All of her grandchildren, myself included, can recite her ancestral story in Hokkaido verbatim. The 80 cherry trees she would help her father pick and the merchants that would come to purchase them in bushels. Or the 12 different lakes on the property- the deep lake, the shallow lake, the gourd-shaped lake.

She told us about her morning routines; how she would weed the garden in morning before the bugs would wake up. Those stories were my favourite and hers too. It was so nice to listen to her voice and see how excited she got.

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I miss my grandmother every day, I sit and reminisce about all the experiences I had with her. The hardest but the most beautiful times were when there were glimpses of her former self, talking coherently and I knew somewhere deep down she still remembered who we were. I’d like to think she always felt surrounded by love.

If someone you love is telling a story, listen even if you’ve already heard it a hundred times because you never know if that’s the last time you’ll hear him/her tell it.

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