It has been a long time since my first and only visit to the this blog I had actually forgotten that I had set it up. The blog will recommence and is about to take a dramatic change as my life has changed. My father has LEWY BODY Disease it is the most horrible disease both for the carer and family and the sufferer. The 2nd most common form of dementia and the one most often misdiagnosed. Dad also has osteoporosis and his bones are very brittle turning the wrong way can cause a rib fracture with intense pain. This poem I wrote the other day in the hope that it can help me understand and deal with the situation and control my pain.
My Fight with Dad’s Lewy Body Disease
My tears fall thick and fast I can’t control them
I read of Jenny ’s shared time with Tony the reconnect
Of Annette’s pain when she leaves Peter
And Steve’s anger at 42 and locked in a battle with LBD and AD
Mum’s truthful moment when she shared her pain anger and frustration at getting old and infirm
She railed at the horror and pain and unfairness of it all
She wants her husband her lover her friend back
My tears fall faster and burn furrows in my cheeks
I am scared about the future
This is not how I expected to live my retirement
I ache for my Dad the man I knew strong STRONG loving kind
Not the shadow of frail and damaged soul
I want this nightmare to end but it won’t not yet at any rate
I want my children and my grandchildren with me
That is not possible they are there and I am here with Mum and Dad
I cry at the stupidest things
I yell at my partner but where would I be without him such a gentle loving soul
I am high one minute in tears the next
Don’t tell me I need antidepressants
What I need is normality or the peace to accept what I cannot change
How do I find this peace – Who holds the key - Is it inside me?
I miss my friends and being with them and sharing
My tears are still falling I can’t control them
I don’t want anyone to see because I am supposed to be the strong one
So I turn my back and type as if the hounds of hell are after me
Thoughts so terrible flood my mind fears of what is to come
Where can I run where can I hide ?
The doors are all shut and bolted
I am here trapped and flayed alive
Burning tears are no release
so open the door
Turn around Turn on the smile
Be what the world wants me to be
But inside I simply want to cry and die
I am an ordinary woman trying to deal with the extraordinary. But isn't that what being a WOMAN is all about
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