Myself, Sue phelps ( director of Alzheimer’s society Wales ) Ruth Jones MBE and my wife, Jayne
There are those who listen and those that don’t or won’t !
I listen, I hear,
I hear it all, the end ,the near, and the far !
No one hears, no one listens, they just pretend,they do their duty !
All I hear, is the ridicule and the jeers !
No one sees ,all the tears 😥
they pretend to listen ,then turn away ,
I’d like them to be me ,for just one day !
The tears they flow, for no such reason
I wish they wouldn’t cos I can’t cope !
No man should cry ,such as I !
I sometimes wish I could die
Please look around you and See our plight,
Please step up, please join our fight
Young onset Alzheimer’s disease !
Round and round, and round we go,
Trying to be normal is my darkest foe,
I see my soul ,large and black
Weighing so heavy ,on my back !
Don’t forsake me now, when I need you the most
Hold me tight and let me feel you close !
Time is flowing, flowing away
I Wonder what became of that day
The days you should remember
The promises you said you’d keep
And of the love I had that ran so deep
I screamed, you cried
The person you knew ,has already died
I want to love you, I try to care
Do or die, I dread to dare
Friends faces don’t appear ,anymore
There’re locked behind, that dark door.
I have these ideas, then I have to remember I’m not the person I used to be.
But try I will and if you speak to the wife, very trying I can be !
The wife and I recently completed our dementia friends champion training, after all the worry and anxiety, it was worth the effort.
It could be or would be so easy to just sit and wait for the roof of ones world to just cave in, because stress and thinking just lay me flat out these days.
As I was saying, We have just done our first dementia info sessions, two on the same day ( which, afterwards I slept for nearly 14hours solid! ). A bit much with hind sight, we will stick to one a week after that !
Anyway where was I , oh yes, the wife did the bookcase analogy that explains dementia, I managed to do most of the rest ,
and there was I , feeling actually proud ! A feeling I haven’t felt for 12 months at least, I felt worthy again !
The feed back was positive, and want us back for more dates.
What team work !
So what I’m trying to say ,I think, is no matter what’s going on in your life, no matter how crappy, you Can rise above it and You can live with dementia. Just carry on doing this for as long as You can.
You just have to find that branch to hold onto and hold as tight as you can while you can .
It’s oh so cloudy, it’s oh so dull ! I can’t remember the artist or the rest of the words, but it brings new meaning to me.
It’s a constant battle, new problems weekly, if not daily, I have new boots now , all with zips on the side because I can’t tie my shoelaces.
I can’t use a knife and fork, just one implement at a time, my brain cannot multitask, it can’t do two things at once.
I shout out random words which are only supposed to be private thoughts, don’t tell me your secrets. Lol !
I don’t do well with jokes or sarcasm, I don’t get the punch line, are you joking or telling me a story, should I laugh or should I cry !
Faces don’t appear in my memories anymore and I ask my children their names.
Tired all the time, everything is such hard work, exhausting.
A grown man having to be reminded to do everything, anything.
I scream inside, I scream at my poor dog, so I don’t at my family. But he understands and still lays by my feet and looks at me sometimes to make sure it’s still me .
But It’s not me, I’m disappearing so fast and this new slow ,old, tired ,inpatient man is coming to the fore, angry and uneducated,
he’s so hard to reason with because I think he finds everything so hard to understand, I’m becoming like a child.
I’m unlearning every thing I’ve ever known one horrible day at a time.
‘Living well’ I don’t ! I live with ! ‘Not suffering ‘. I do, my family do, in every way every day.
Scared that one day the cloud won’t lift !
This isn’t written for sympathy ,it’s for insight and education, and for other diagnosed, to show them they are not alone