One of the biggest tragedies of Alzheimer is not the disease itself. It’s that people look at their loved ones living with the disease and write them off. They buy into the overwhelmingly negative narrative that living with dementia is a long, slow journey into oblivion, and all they can see are loss, tragedy, and despair. They experience great pain when their loved one doesn’t recognize them. Some become paralyzed by grief before their loved one even dies.
While they suffer and grieve multiple losses every day, wishing they could recapture the past or reassemble someone they believe is falling apart, they miss countless opportunities to find joy, healing, laughter and connection with the person who is standing, sitting, or lying in front of them – still human, still breathing, still able to give and receive love and care. They miss chances to build bridges, to reimagine their relationship, to be in the moment with that person they love. And then, before they know it, their mother/father/spouse/sister/brother is gone forever, for real, and it’s too late.
This poem is about changing that mindset. People who live with dementia are people until the very end. We owe it to them to support them as they live until they die.
don’t mourn me long
Dedicated to finding hope and letting go of loss.
don’t mourn me long
©2017 punkie
don’t mourn me long
before i’m gone
and manifest your fear
think once or twice
consider thrice
before painting days so drear
look deep within
through thick and thin
discover i’m still here
with life to live
and more to give
this moment, this month, this year
so smile, don’t frown
be up, not down
as harvest time draws near
on with the show
until you know
i’ve truly left my dear
don’t mourn me long
before I’m gone
wait until I die
and even then
don’t grieve me when
my spirit’s in the sky
imagine me
wild and free
young and fit and spry
no body left
no brain that’s cleft
no chains, no drugs, no ties
on sacred wings
i swoop and swing
scant time to wonder why
when like the wind
free from all sin
i soar sweetly up on high
don’t waste a tear
on earthly spheres
let go and feel me fly
don’t mourn me long
before I’m gone
find hope with childlike eyes
©2016 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.
https://myalzheimersstory.com/2017/05/19/let-me-weep/
https://myalzheimersstory.com/2016/12/14/missing-you/
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My Alzheimer's Story 
Susan, thanks for all that you do. I love this poem. There are still so so many that believe the myths that people who live with dementia in the mid and later stages are gone when they no longer can answer you the way YOU want. These family members miss so many joyful times with their loved ones when they can’t let go of THEIR needs and expectations. They feel mom/dad has to say their name for THEM to know their loved one recognizes them. A person ALWAYS knows you until the day they die. We need to LET GO of our own needs, let it be OK to meet them where they are, learn to read non-verbal, be close to them and love unconditionally. They can communicate, if you learn non-verbal language and truly see the person within.
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Judy, Thanks right back at you for all that you do! And I couldn’t agree with you more – I feel sad that so many people not only miss out on opportunities for joy, but also add to the difficult road of someone who lives with dementia by denying them the companionship and love that could help them on their journey. That’s the real tragedy in my opinion.
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Susan,
As always, this is beautiful. I had my my colleague who is a business teacher print and laminate one of your poems. It is on our classroom wall and my students love it. I need to find a frame for it.
Thank you for all you do. You are a great blessing!
Bing Boettner
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Thanks Bing! A couple of weeks ago I was in Ontario doing a workshop for caregivers. In the workshop handouts, I included a copy of “let me shine,” my poem about changing mindsets about dementia. One woman in the class said: “I have that poem pinned on my wall. Someone gave it to me.” I was thrilled. ” I wrote it,” I said. She was stunned. She hadn’t known where it came from, or who had written it. It felt wonderful to learn that good messages are spreading, even when I don’t always know about it. I would love it if you sent me a picture of the poem on your wall, and more information about you and your students. Where are you? What are you teaching?
Thanks again and keep up the good work ❤
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That is a beautiful poem, Susan. I do think that we often mourn the loss of someone long before they are gone. It may be a preservation tool of sorts-that disconnecting—a stepping away from the painfully obvious. It is sad but I know it happens. xo Diana
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It doesn’t take a lot of words to create poetry that strikes at the heart. This lilting verse is evidence of that. Absolutely beautiful, Susan.
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Thanks Al. I appreciate your kind words ❤
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So poignant Susan. If this poem reaches even one person who is still in the midst of caring for a loved one
with dementia before they ‘give up’ on the life still there, you will have worked a small miracle. I think of my grandfather who had dementia – long before my mother had Alzheimer’s. He was such a full of life person to me well into his late 70s. We shared a love of books and we were both detail oriented – me with numbers; him with the engineering patterns he stamped at GM for 40 yrs. I loved to listen to his stories even when they began to repeat themselves…no matter, it was still wonderful time spent sitting in the back yard or on the dock with him.
Then came a fall in his back yard while he was gardening. My grandmother sat inside not knowing that he was laying out in the hot sun unable to get up for hours and hours. Finally a neighbor saw him and he was brought in and taken to the hospital. He never came home again. He stayed in a nursing home near their home and eventually, my grandmother moved ‘upstairs’ to the assisted living area waiting for him to get better. But he never did. I visited at first. He was always a person to give big bear hugs on coming and going and he tried to get out of bed to do his usual when I arrived. But they had him “restrained” because he would fall and wouldn’t stay in a wheel chair. He didn’t understand and he struggled and cried. I cried. I was in my early 30s and it had lost my father recently and the pain of watching the decline of my grandfather was more that I thought I could bear at the time. So I stopped visiting.
Now I wish I’d had the knowledge I have now (at age 66) to be able to have continued to share the time he had left (he outlived my grandmother even). With this knowledge I might have found ways to take some of the frustration out of his life -to redirect that beautiful mind. But I didn’t know. And like your poem, “I mourned him long before he was gone”.
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Oh my goodness Connie, that is such a beautiful and heart-wrenching story. Once again, I am compelled to share it. Maybe it will encourage someone to visit a family member, or friend, or stranger.
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Hi Punk,
I love this poem.
Beautiful
Glad to know you’re well
xx
Luigi
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Thanks Luigi!
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