Ekta is a social worker here at AST. She co-facilitates the Boomers Club with our Community Programs Coordinator Romina and is particularly passionate about working with people who live with young onset dementias. She has a blog where she shares her experiences. Welcome to Storytime with Ekta! This story took place at one of our partner sites, Woodgreen Community Services.
When I first met Mary*, what struck me most was her loud, shrill voice. She had this deliberate way of talking – enunciating every word she spoke. It’s hard to tell her age, but my guess is 70s at least. She has very short salt and pepper hair, more pepper surprisingly. She is in a wheelchair and can’t walk around. She would talk loudly and cuss at anyone passing by. Well, she has dementia.
I began spending time with her. I found that the more I talked to her with a smile, and in a hush-hush tone, the more inclined she was to mimic my tone and reciprocate with a similar sentiment. I would say, “Hiii,” in a cheery tone and she’d respond with surprise and happiness, “Me?” And after I’d nod, she’d say, “Hiiiii”. I would say, “I really like you,” or “You’re so sweet,” or “You have such beautiful hands,” or “You’re my favourite”. And she would look at me in disbelief and go, “Really? Reallllllly? Oh, boy!” After a while, the disbelief changed to “Why, thank you”. And slowly, she’d seek me out; she’d look at me and go in that excited tone, “Hiiiii!” Her eyes would widen and she’d beckon me with her hand to go sit with her.
This continued for a few months. However, the last few times I saw her, I found that she was less inclined to make conversation. It seemed like she was having issues with her hearing. She would not always respond. But sometimes she would. When I saw her yesterday, she could barely focus her eyes. I kept saying her name, “Mary, Mary, Mary;” there was no acknowledgement from her end.
I was very sad. The truth is, Mary was actually my favorite. I loved the surprise in her eyes and voice when I complimented her. I tried for a long time to help her have a cup of coffee that she usually enjoys in the mornings. She couldn’t even hold the cup steadily. She fell asleep holding the cup. I had to pry it out of her hands. When I tried to bring the cup to her mouth, she didn’t part her lips. I said, “coffee,” and she’d repeat, “coffee”. But her eyes were somewhere far away.
After lunch, she seemed somewhat more awake – not focussing or participating in the activities, but she just looked awake. I sat next to her and held her hand. Her eyes widened for a split second and then she said, “Ummmmmm” and smiled. It was enough for me. I progressed to play with her hair. She used to love playing with my hair and necklaces, so I thought of trying that. I stroked her hair gently and softly. After a few minutes, she said, “That’s nice.” I continued to stroke her hair till it was time for her to leave. No more words were exchanged. I don’t think they were necessary.
I often tell care partners or caregivers to use touch to connect with their family member/friend. It was nice to get such a powerful reminder. I am sad that Mary and I will lose our relationship as I know it. But I am encouraged to know that I can reach her if I tried, and I will not let Alzheimer’s stop me.
Mary* – name changed to protect privacy
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