Category Archives: Dementia

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.

 

 

 

 

 

 

 

Another Life Being Well Lived

Have you met 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.

On reading the Guest Post on the 28th I was immediately transported back to a few days early in 2016 when I didn’t know who or where I was. You may remember that post – A Few Days or the Rest of My Life. Fortunately, I have recovered completely; Wendy is still living that life.

wendy

 

This amazing woman has written a book. “Somebody I used to know” I’ve just received my copy and am looking forward to reading it.

Thank you, BethAnn Chiles, at Its Just Life for introducing Wendy to me.

 

 

And now, because it fits in so well with this subject (and if we are allowed to be proud of something we have written) may I once again post “My Name Is Jane, I Think”?

They’re calling me Jane
Is that who I am
I am perfectly sane
but I don’t know their plan.

I look in the mirror and what do I see
Someone who vaguely resembles me
But why am I here and why all the tears
They are beginning to scare me, what is there to fear?

 It seems like only yesterday I knew who I was and
Proud, strong and upright my life in my hands.
But now you tell me that isn’t so
Well if I am not me then where did I go?

 I remember a time when my children were small
But yesterday and last week I know not at all
Where did those days go and why am I here
I wish you could tell me why did they disappear?

This young woman calls me Mother but I don’t know her at all
She looks kind of familiar, lovely smile, soft hands and all
And the young boys with her they are calling me Gran
But again I don’t know them why are they taking my hand?

Perhaps I knew her when I too was young
When life was before me and everything was fun
And losing one’s self wasn’t even thought of then
So how could I have landed here – is this the end?

 I think I know you – are you a nurse
And where are you taking me, I know the way
Well I did before this curse
Came upon me and befuddled my mind
And now I feel that I have left me behind.

But I am still me though I can’t make you hear
I’m still your mother and hold you all dear
What’s that you say my name is Jane
And I really feel that I’m perfectly sane.

But they’re calling me Jane
Are they talking to me
Is that my name and
Who I used to be?

 

That’s all for today. Thank you all for reading and following me. and please check out Wendy Mitchell. A woman to be followed.