Dementia "The fear of Thre Future?"

Dementia And The Fear of the Future ...........

FACT !!

From the moment you are diagnosed with dementia, your world changes, your life is never the same and a single, unique kind of fear enters your life, never to leave, that is the " Fear Of The Future " and all it entails.

This is something that haunts me on a daily basis, yes i may seem outwardly confident, and yes i stand in front of hundreds sometimes raising awareness seemingly not batting an eyelid and yes i do enjoy doing all of this. But at the end of each day, i sit, just like millions of others thinking about the days events, how its gone etc, but!! With the added worry of whats to come tomorrow, or the day after. None of us can predict the future, true, but when you have the spectre of a terminal illness hanging over your head, where you never know how the next few hours will be especially when it concerns the type of disease i have which is Lewy Bodies .

i can't even take my time day by day because my days are split into two because of sundowning. I am up in the morning, tired after the nights events, but hopeful and optimistic (I have to be, i couldnt get out of bed each day if i wasn't) I try as hard as i can not to think about the approaching late hours in the day and just try and make the best of the time i have when i am feeling myself as i put it, but the fear of the future, even the few hours approaching is always with me. Its like a gnawing , niggling feeling in the back of your mind, just like when you know something`s not quite right but cant put your finger on it, and as the day draws to a close, i have that feeling in my stomach as if i just know something bad is coming and the tension inside builds..

One of the most frustrating things is when people say "You hide it well "" What am i supposed to say to that ?? thank you ?? or " well, its an Art ?? i dont think so because i know if i had the choice i wouldn't be hiding anything!!! I do think some of it is down to my / peoples personality and ability to cope with things, and yet when the day is coming to a close i never know, because the nature of the illness never tells me, if i will have a good night of a bad night. Its like waiting for a silent assasin every night to turn up, but that's not the worst of it for me.

I fear for my families future more than most. I have no doubt they will cope when i have gone as we are all fighters in that respect and we all live t enjoy every bit of our lives, but my worry for them is when i start to deteriorate , act out of character, do things i would NEVER do and say things i would never say. I would be mortified if i ever did anything or said anything to upset my family, and i am sure most with this disease would. I have friends who are farther down the line tan me who have changed into a completely different person from the one i once know, but somewhere, deep inside, behind their eyes especially, i just know they are still there. Just because we have dementia and dont seem "there " sometimes doesnt mean that worry will ever go away.

June Brown AKA Dot Cotton From Eastenders lost her darling husband to Lewy bodies and she always says that he once said

"Its like having Two disease`s, having dementia, and KNOWING you have dementia"

Because when you come out of your "Dementia State" you sometimes , with Lewy bodies, remember little bits of your strange behaviour, When you remember what you have done the previous day, thats not the worst of it, thats gone, but the FEAR of what is to come is absolutely terrifying. Its knowing that you could be doing something totally absurd and YET its completely out of your control!! A perfect example is two nights ago i stood bolt upright in the bedroom and asked the Staff (I thought i was in a cafe) "Excuse ME? Do you sell coffee ?? As usual Elaine says she put me back in bed and i went back to sleep, but that's just a moments example, , out of many hours when i am like that, and the most awful thing for me is sometimes, just sometimes i remember it!!

But what of Elaine ? This angel on earth, and what my Angel has to put up with most nights, Broken sleep, disturbed nights, and me being totally different during the night compared to the person she wakes up with ? This is such a cruel disease my friends, but please remember its a two way thing, it affects both carers and people with dementia alike. if i have a fear of the future, then i am so sure many more like me, in the same position are feeling the same, thing is, the one thing about living with this awful disease is you become very good at hiding your feelings, hiding your worries and hiding your tears, so sad, but so very true. We are all in this together, each and every one of us, at some time in our lives, we will ALL know someone with dementia, its time for things to change my friends, and to change right now !! Not talk about it, not hold a meeting about the last meeting about the last meeting etc, but to step up and make sure ALL are involved in every step of the way including decision making and changing the way we and others look at this disease.

Norrms Mc Namara Diagnosed with dementia