Norman McNamara, Author, Poet and Founder of Purple Angel - Dementia Awareness Campaign
I want to go home!! I just want to go home!! I kept repeating it over and over again.
I turned to my wife, my “Angel“ Elaine and said the same thing.
With that look in her eyes, the look that says “I love you so much and want to stop you hurting” she said “You are home Norrms, Home is with me, home and with me and is where you belong" ... and yet??? Why do I have this longing to go home? Why does my heart YEARN for a more peaceful and placid place? Is it my mind playing tricks on me?
When I say “HOME” I don’t mean Bolton, where I was born, we have lived here in Torbay the last 20 odd years, and yet I feel as if I don’t mean here either?
I JUST WANT TO GO HOME!!!
Is it the loneliness inside me that makes me feel like this? I have so many friends and family, I am so lucky in so many ways, and yet, this feeling of loneliness? Is this what makes me yearn for a better place, if there is one? Or am I looking for my spiritual home?
To be honest, even though I was brought up Roman Catholic I have never been that big on religion so I don’t think it’s that either?
Maybe it’s just peace of mind I am looking for, maybe it’s just me longing to be well again and go back to work and do the things that everybody else does on a day to day basis? I feel so unsettled, yet we live in a wonderful home in a great place, and yet I feel misplaced?
Or is this just the remnants of a fragmented mind, trying to make sense of this awful disease Dementia?
I have spoken to others who speak out as I do and this is a very common feeling amongst those of us with this awful disease. How many more people like me who don’t speak out feel like this, and how many people living on their own feel like this with no one to turn to and no one to talk it over with, also have these emotions running through their head with no where to turn?
Please believe me when I say this is, without a doubt, the loneliest disease in the world. You know (With Lewy Body`s Dementia especially) that’s there's something very wrong with you, but you can’t see it, you can’t feel it, you can’t wrap it up in bandages or put a plaster on it, I only wish you could.
And yet you just know things aren’t right and life will never be the same, it’s a living hell on earth!!
I was asked recently by a good friend, how I manage, day to day, knowing I have this disease, how I cope, knowing it’s a terminal disease and knowing that its eating away at my brain on a daily basis, stealing from me my most fondest memories and robbing me of all my life skills.
The answer to GOING HOME is now is quite simple and CLEAR TO ME
I WANT TO LIVE!!
I WANT TO SEE MY CHILDREN/GRANDCHILDREN/GREAT GRANDCHILDREN GROW UP!!
I HAVE SO MUCH TO DO YET AND SO MUCH TO ACHIEVE
I want to be around on that wonderful day when a cure is found, so I and thousands/millions of other's like me, their carers, loved ones etc can sleep the sleep of the contented in their beds knowing that Dementia is at last Banished forever.
Much love,
Norrms Mc Namara Diagnosed aged 50, and still fighting it