September 8, 2010
The Hollow Man:
As I write this I feel as if I am being disloyal to my family and friends but believe me I’m not it’s just what happens deep down inside someone who has been told they have early onset Alzheimer’s.
I have stated so many times I have the most wonderful supportive family a man could ever ask for and even though I have heart failure and Early Alzheimer’s I still regard myself as the luckiest man alive as not only are my children the best ever (Aren’t they all) but my “Angel” wife had nearly 25yrs+ in the care service so I have the perfect person looking after me as a full time caregiver.
So, you may ask, why do I feel so “HOLLOW” inside sometimes? I must firstly state that I say sometimes as usually my disposition is a very happy one but when the “concrete overcoat” descends (as I call it) and weighs me down with a heaviness that’s indescribable the emptiness I feel inside is horrendous. I have always said being told that I have Alzheimer’s is just as bad as having it but I wouldn’t have changed that decision as all my family are now well prepared for what’s to come in the future.
I said earlier about being disloyal, well, sometimes I actually feel guilty for having this awful disease as I can see the hurt and frustration it brings my family and how they must wish for a different outcome. Would it have been so different had I not been told? Would the “Nods, winks and knowing looks have made it any easier? I think not.
The emptiness I feel inside sometimes is akin to feeling Soulless if there is such a word. It’s a feeling of desolation and helplessness that overcomes me in waves and waves. I want to scream and shout “WHY ME??? But if I did that I would feel so selfish because of all the other people who are a lot worse off than me and a lot further down the line in this illness. I read today that the government is putting up a £50million fund to help Cancer patients cost towards life saving drugs. At last!! Good news!! The best news I have heard in a long time. BUT!! What about other people with life threatening diseases? Are they not as important as anyone else in this unfortunate position? Who makes these decisions? How do they sleep at night? All this goes round and round in my head and even though I know it makes me so much more frustrated and feeling underwhelmed I have lots of time on my hands to think about it, or at least I hope I have.
So what of my future and family?
My future I now take day by day and am being the eternal optimist and enjoying what I can whilst I can. And if there is an upside to any of this I am probably spending more time with my family and friends now that I ever did. I am not missing out watching my grandchildren grow up or their school Christmas plays, etc. and that’s the most precious thing to me at the moment.
But the feeling of emptiness and desolation still descends at times, as if reminding me of my future, and of what’s to come. The concrete overcoat covers my whole being and drags me to places that I would never mention to a living soul, sometimes lasting for hours or days.
This is when “The Hollow Man/Woman” needs a smile, a wink or even a cuddle. Just to show him or her that someone still cares and that someone is also in that corner fighting with him. You will be amazed at how much a little reassurance lifts the spirits, even if sometimes they don’t always show it too well.
I hope by writing this it will help loved ones and carer’s alike understand a little bit more about how a person with dementia sometimes feels.