The Deadly Disease

“Listen, whatever you see and love—
that’s where you are.”
Mary Oliver, September 1935 – January 2019

I have written before on the subject of Alzheimer’s, the Deadly disease. Many of us have suffered with our parents, mother or father, as they struggle through this journey. We have watched them change from the lively, spirited, strong people they once were to this shell of themselves,  trying to make sense of who and where they are.

I wrote about a few days in April 2016 when, following a major misadventure, for a few days I didn’t know who or where I was. I mistook my son for a doctor and didn’t recognise my grandsons. But luckily for me, it was only a few days.  For that short time, I could bond with my fictional character Jane and those people who are living with this full time.

One such person, and someone I have written about before, is Wendy Mitchell. Wendy says “On the 31st July 2014 I was diagnosed with Young onset dementia. I may not have much of a short-term memory anymore but that date is one I’ll never forget.” Wendy was only 62 with a busy full life ahead of her. Please go over to her site to read more about this fantastic woman.

She is living with dementia every day of her life, and is filling it with activity not only to help herself but to help others too. She is active on various organisations, has written a book and writes a blog post daily.

In today’s post she writes about Tove a woman in Finland from whom she received “the most wonderful email”. Tove had read Wendy’s book “Somebody I Used to Know” and felt moved to write to her,

Tove’s mother was diagnosed with Alzheimer’s at 56 and sadly died at 64. But she was a poet and before that ability was taken from her, she wrote several poems. With Wendy’s approval and I trust Tove’s as well, I am sharing  two of the poems with you.

Let me stay

among my dreams and memories

yet a while

Let me see the ocean in the sunset

and the beach

Let me listen to

grandchildrens laughter

and notice one more day, please

Don’t run towards me you cruel reality

Stay. Take another way

So when you finally knock on my door

I’m not at home.
I’m perhaps already gone

Lillemor Eklund 2005

and then this one…

When I no longer can pronounce my name

When the silence is hanging over my thoughts,
like a mountain

Hug me, keep me close. Make me feel safe

Whisper my name over and over again

Til I know who I am

Wish me wild and beautiful dreams

in the darkness that has captured me

Hold my hand follow me some of the way”

Lillemor Eklund 1949-2013.

……

Often, in the face of this or any disease or a terminal illness, we tend to forget the other people who are also affected – Wendy’s two daughters, Tove and many others are suffering along with the sufferers of the disease.  They need our support, a phone call, a letter or a visit to show they are not forgotten; their suffering is acknowledged.