Here is something I wrote for my good friend Thomas Whitelaw, tommy-on-tour-2011.blogspot.com
When you get diagnosed with an illness that will lead to dementia your whole world gets turned upside down, after medication has been discussed, power of attorney put in place, wills made or remade, you suddenly realise you have so many questions,but the time you had to ask has been and gone.
Your whole family is affected, relationships become strained, the whole family share the diagnosis.
It’s so hard to explain how you feel, what’s going and more important what isn’t going on ! You can start to feel so alone, it almost becomes us and them !
There is lots of information out there if you look hard enough, lots of support for folk helping to care and help you, if, again you look hard enough.
I and my wife became very involved in dementia awareness and promoting education and understanding because for a really well known word, everyone has heard of dementia, we couldn’t believe how little most folk know about.
We became dementiafriends.orgDementia Friends Champions, we do it together as a pair, as a couple because that’s what we are, a team ! Especially since I don’t drive of cross roads very well on my own any more, but as a team my wife helps me to give the 45min session, we’ve yet to see folk that attend not being interested.
But I still thought yes there is room for more help for the person living with dementia, I then came across two Americans on the internet, Harry Urban, who has Alzheimer’s and Gary LeBlanc, who cared for his father.
They were thinking just the same and came up with a website aimed at folk with dementia, dementiamentors.commade the whole site very user friendly, in fact it’s excellent.
They recruited a few folk that had various illnesses that came under the dementia umbrella and asked us to make small 3min video’s on subjects that might of help to others. These are shown for a month then archived, then different ones are shown. The knock on effect is that one day you can feel quite useless, then make a video that helps others and you get your confidence back, you are now making a difference.
This has now led to three online virtual memory cafés a week using a software called zoom, that is so easy to use, and you’ve then got people from all walks of life, from lots of different countries chatting and helping each other, all of a sudden you are not alone any more.
This website, which was aimed at diagnosed, is also a great source of insight for all, family members, professionals and cafe staff etc, it helps one to understand what is going on in our lives, bug the biggest message is ‘ you can live well ‘ or at better with the right support , you get that support with understanding.
folk only think of the late stages, well there is also a beginning and middle !
Please vist dementiamentors.comand if you have dementia, please get involved, you aren’t alone
I Didn’t think I had any worries. Life was good ! Maybe to good !
Because then it started !
I started worry about some times getting lost, the worry about why I’m unable to accomplish things as easy as I used to,
The worry about why I was struggling with money.
It then started to affect my relationship and family life, The worry then started to affect me !
The worry through the The diagnosis procedure, the worry about what was happening to me.
The Worry i had trying not to worry about the worry !
When the diagnosis did come, that was the biggest worry, but not for me.
My poor wife and children are going to have to deal with the worst ! The late stages when I won’t remember, when I might not know them or even care !
I worry about the shouting I do, for almost no reason, the worry about where that patient and
understanding man has gone !
I worry when I hear my wife crying on her own and when I see a tear in my daughter’s eye.
The worry when I’m locked in a room because my hands are full, I worry when I can’t do my own tie or
Asking your children to tie up your laces and to remind me of their name !
I worry when I stagger and can’t see steps, I worry when I fall !
I worry about respite and day care, I worry about where I’m to go !
My head gets so confused and cloudy, my thoughts don’t make sense anymore.
I worry on the days when I’m tired and find it so difficult to talk
Did I say I worry what’s to become of Me, me that’s starting to disappear, day by day,
I worry about the hold Dementia has on me and my family !
I worry about my lack of love that I used to have, I don’t love or feel anymore
I worry that I can cry for no reason and scream for even less !
I worry about the limited future I and my family don’t have any more.
People say don’t worry ! Life goes on ! Living well with it ! And even the joy !
I worry about people not understanding
I worry with dementia, day by day
I’m not supposed to worry, Ive got to get up and beat this disease, I’ve got to live well with it, we don’t suffer, it’s not painful !
Well then I’ll tell you what ! Let’s swop !
Memory is such a precious thing !
you don’t realise how important your memory is until you start to lose it .I don’t mean just forgetting where you put the car keys or where you parked the car this is all part of ageing, all part of natural brain shrinkage. Most of the time all one has to do is stand still, look around and eventually you’ll remember what you wanted to do , or you retrace your steps and you find your car or lost item.
The difference with dementia is that if one should forget something ,that memory is lost forever ! you don’t ever remember . All people seem to do is constantly remind you that you’ve just forgotten . Can you imagine what it’s like to just completely forget where you are ? Or what you’ve done ? Or what you said yesterday or even five minutes ago ! it’s horrific and no sufferer wants constantly reminding or prompting , please 😉😉