I DESPISE THIS DISEASE!! I HATE THIS DISEASE MORE THAN I HAVE EVER HATED ANYTHING IN MY LIFE!!!
THIS IS JUST ONE OF THE MANY REASONS WHY!
As we set off for sunny Bolton last Monday at 9am all was well and we were on our way. By 9-55am and just passing Bridgewater I wanted to know where we was going? Why we were going there and demanding to go home!! Such is the ugliness of Dementia!! And such is the deceitful way Lewy body`s works as I can remember most of it but I have no explanation as why I should be like that!! This was only the beginning to what has been a very traumatic five days, not only for my “Angel” Elaine, but also most of my family who are now nearly all back up North.
It has, without a doubt, been a very busy year so far but also a very rewarding one as I do believe with every bone of my body that we have come so far this year and will hopefully continue to do so, but this break was meant to be relaxing. Seeing and being with my children and grandchildren is the most wonderful feeling in the world for me as I know it is for many others, but this time was different. I felt as if I didn’t belong there. I felt like an outsider as the places and faces seemed distant and trying to join in with the simplest of conversations was so very hard. I stuttered, I stammered, and I struggled to remember what I wanted to say. Sometimes I felt as if it was my first day at school and was so nervous of saying the wrong thing, so I just went quiet and tried to keep up with what was going on around me, as you all know, this is not me.
One particular thing that stands out was when I was trying to have a conversation with Elaine and no matter how Elaine worded it, it didn’t actually make any sense to me and I just got more and more frustrated!! I was completely convinced it was Elaine making no sense at all and I was the one that was in the right!!! Thank GOD I have a very patient Angel as I became quite loud and obnoxious!! Eventually we decided last night that enough was enough, and as we said goodbye to all our family through the day, it suddenly dawned on me that my illness was getting worse. Outside of my comfort zone of Torbay ECT I am totally at a loss, even when I am in the bosom of my very own family. At times I felt so frightened I thought I was going to explode because I really couldn’t understand where I was or what I was doing there.
I really now believe that it wouldn’t have mattered if we were in Bolton or the Cotswolds! Or if we were on holiday in Cornwall or Corsica!! Everywhere we went felt unfamiliar and so surreal as if I was dreaming, or having a really bad nightmare. This, as you can probably tell, is the first time I have ever felt like this and believe me it’s not nice, not nice at all, because it throws up all sorts of complications for the future. Holidays are something we absolutely adore and even though we never leave this country, we both believe it’s the most beautiful country in the world (Pity about the weather) but what happens now?? Will the same thing happen when we go away? Also, what of my wonderful family?? Will they be prepared to travel down to Devon from all parts of the country? My home town is in Bolton and I have some of the best friends anyone could wish for up there, what happens now? but most of all, what about my wonderful loving “Angel “Elaine? We have yet MORE grandchildren on the way and if I flatly refuse to travel up there to see the newborns how will Elaine feel? I will not have anybody stay with me except Elaine as yet at this moment and cannot see that changing in the near future. My heart says you must let a carer come in and look after you! But my head and every sense I have in my body says NO!!
Apart from Hate, Despise and every other word similar, I cannot think of any other way I can describe how I feel about this awful illness. It`s not only robbing and thieving me of my faculties, my way of life and my hopes for the future but is now trying to restrict me in a circle of routines that seems like an impossible maze to get out of. If ever I needed strength, prayers and help to get out of this one, now is the time, I think my friends.
Fighting this terrible disease is what I do, and I like to think it’s what I do best, so I promise you that will not change!! This is a new challenge for me, but I am the first one to admit this might just be a BIGGIE and an uphill battle. So, what does the future hold? Well, as far as I am concerned it holds the best D.A.D day EVER!!!! It also holds (I Hope) the announcement of the very first “Dementia Friendly Community” in the UK right here in Torquay, and it also holds a long and fruitful friendships with all of you my friends for as long as humanly possible. Even though this has been hard to write, I just hope it helps, as it explaine`s what some of us might feel like with this illness and some of the battles we face on a daily basis. Some may not want to share this information which is of course, quite ok, we are very good at hiding things you know!! Still, now I am at home and in familiar surroundings I promise we will do our best to get on with the job in hand, for as long as we can.
All our love, Norrms, Elaine and family xxxxxxxxxxxxxxx
Oh Dear Sleep !
Oh dear sleep, please come my way,
Pass over me and end my day,
Tormented by my visions past,
Help me slumber, your shadow cast,
Its Lewy Body`s that I fight,
Every second with all my might,
Eyes that see, not always true,
Ears that hear songs so blue,
Laying my head upon my pillow,
O come dear sleep, like a whispering willow,
Take me to a place of hope,
So each day I can cope,
Refresh my mind for tomorrow’s day,
To face whatever comes my way
Best wishes, Norrms and family xxxxxxxx