It's not all running here! Honest.
Seriously, I do want to share and discuss something which I think is a real social stigma. Why don't we discuss or talk about Alzheimers or any other form of dementia? I don't know all the answers to this question, although I do have a few ideas. Having read this report (link below) it is fair to say it all about the stigma associated with a illness which a lot of people don't understand.
From personal experience, I know that talking it about it was really difficult and often met with an awkward silence. When my Grandad was diagnosed with Alzheimers, even the doctor didn't want to say the words of his illness, he just handed my Nana a leaflet and said call these people (it was for a local Alzheimers society), they might be able to help!!!!! Now, this is where I could get all ranty and ragey, how come a professional couldn't discuss this professionally? One meeting that my Mum went to with my Nana, we asked the doctor about the prognosis and treatment, he just talked about the condition deteriorating and to be prepared for the very worst. Now, how was that helpful? Of course he was right but I wish they were able to offer counselling, support, respite. Which, of course now they do (funds permitted!!).
“Our biggest fear is that people are struggling with this disease without the care and support they deserve,” says Alzheimers New Zealand executive director, Catherine Hall. And THAT is why I am fundraising for this charity, it's the care and support that all our loved ones need and deserve. Not the just the person with the disease, but the family who are faced with this every single day. My family all suffered when my Grandad was diagnosed, all in different ways and if we had better support we may have been able to cope better with it.
My Nana spent years driving to and from the care home and would do this every day, how she managed it, I will never know. Watching your beloved husband of over 50 years slip away into a child like state, with very little interaction was so distressing. He was an avid reader, debater and loved nothing more than a good row! Honestly, he once changed his political views with some friends once, as nobody represented the other side, and he wanted to be able to argue a point even though it was one he didn't believe in! So you can imagine what kind of character he was.
And one thing that I would like is for some people to change is their attitude to this illness, and not make crass rude jokes about losing your memory, yes people do that and it is really, really, really hurtful. It isn't a disease that only affects the old, there are many cases of people being diagnosed in their 30's and 40's, so please think before you speak!
I told you I was going to get all ranty on you! HA.
Claire :)
http://www.alzheimers.org.nz/information/latest-news/236-world-alzheimers-report-2012-reveals-stigma-and-social-exclusion-are-major-barriers-for-people-with-dementia-and-their-carers
http://www.givealittle.co.nz/member/ClaireHuxley
Could Not Agree More!!
ReplyDeleteHave had a number of my clients diagnosed in recent years - it's a terrible thing to watch these very sharp, astute people turn into angry / upset beings that can't remember the very things that previously defined their personalities.
Thank you for your kind comments. It is so hard to articulate the grief and loss that you go through when a beloved family member is living with the disease. My first blog also touched on the loss and lack of hope family and friends feel.
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