September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.
“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.
“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.
Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.
I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.
Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.
As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):
alone
©2019 Lilly & Susan Macaulay
alone
i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all
this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me
i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call
i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end
Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved.
* Not her real name.
©2019 Lilly & Susan Macaulay. I invite you to share my poetry widely via this post, but please do not reblog or copy and paste my poems into other social media or blogs. Thank you.
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My Alzheimer's Story 
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