Special thanks to Chris Roberts for this weeks guest stop for Dementia Carer Voices and for sharing your thoughts and letting us into a part of your life. Chris is a great supporter of the project, always sharing our info via social media so we are privileged to have him write this piece for us.
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 Dementia 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, made 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.com and if you have dementia, please get involved, you aren’t alone.
Who am I you ask, my name is Chris Roberts ( mason4233 on twitter ), I’m 53 years old with mixed dementia and emphysema, married and have a family,
I’m ‘living ‘rather than ‘suffering ‘it’s not always good, we’ve cried, we have problems, but no ones going to fix this and time is short, so I’m making the most of my time, I owe it to my family. x