As regular bloggers will know I'm often awake "in the wee small hours" and I was lying in bed the other night thinking over our recent appointment with the Parkinson's Nurse who, incidentally, discharged us because she doesn't feel she can offer us anything that we can't access via our superb Community Matron. At the appointment pretty much the only coherent thing Mum managed to say was "I'm well looked after.....I think they'll miss me when I'm gone!"
As I lay there going over things in my mind the phrase came back to me and my initial thought was "I miss her already". I miss the Mum I used to know. As I lay there and thought about what a great Mum she was and is a poem started forming in my head. It's a bit weird, because it's written as if it's Mum speaking to me and when I read it back it's her voice I hear inside my head! I thought I would share it with you all. I called it
WHEN I'M GONE
Remember me as I was then.
Not just a Mum
More like a friend.
Always ready for a cup of tea.
Grandchildren bouncing on one knee.
A shopping trip,
A good old natter.
Concerned about the things that matter.
Always busy, helping, sharing.
Time for others, giving, caring.
Don't think of me as I am now.
A rigid shell,
A furrowed brow.
Jumbled words,
A vacant stare.
Restless hands that pluck the air.
Eyes that glaze and do not see.
THIS IS NOT ME
It's PSP.
Written by
Kathy
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Like Jill, I really had a lump in my throat when I read your poem. As a mum myself, I can really relate to the words. I care for my hubby who has this cruel and horrid illness so maybe I should get my thinking cap on and try and write something along the same lines for him.
Thank you for sharing. Keep your chin up - we all know how difficult it is caring for PSP sufferers and some days I feel I just can't do it any more, but we do because we love those people we are carers for and know that if they had a choice they certainly wouldn't have chosen to get this heinous condition.
Thank you for sharing this. I'm running the London Marathon for PSP and find it so difficult to express how this illness affects people whereas you've put it so well.
Kathy, your words are brilliant. Only a few days ago my husband said he felt he had become a horrible and useless person. From being a Mr Fixit, he now is Mr Breakit mainly because of the falls he has around the house. I replied it wasn't him who was horrible, it is psp. The horrible condition that robs individuals of everything and family and friends of a loved one before their time. I miss my husband and best friend. We still have an occasional laugh, but sadly as a result of what I call a "psp moment" usually.
Thank you so much for your kind comments. Yet again, this sense of "missing" our loved one even though they are still here seems to be so common to all of us.
How glad I am to have a PSP "family" who understand what I'm feeling.
The poem sums up how PSP robs us of our loved ones and makes the victim feel worthless. Had to find my tissues to wipe away the tears as I remember the horror we all lived through when my dad was suffering with the horrible disease. My thoughts are with you and your mum at this very difficult time.
I guess from your words that your Dad passed away? I'm sorry for your loss.
I have days when I'm so glad I've still got Mum and days when I wish it was all over for her. Yet I know that when she's gone I will miss her unbearably and it breaks my heart to even think about it.
I hope you have family and friends around you and that you share happier memories of life before PSP.
Yes we lost my dad nearly 4 years ago now but I still miss him as we had such a strong bond between us.
PSP did rob him of his strong personality and instead he was so vunerable and dependant on others to do everything for him ( which he hated ) I try to remember the real him before PSP.
I hope you still have happy days with your mum and that life isn't too difficult for you both at the moment.
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gone but not forgotten
How to talk and treat them. 
Mums gone!
