I’ve been reading one or two blogs by others with younger onset dementia. Thanks to Kate Swaffer http://kateswaffer.com/author/kateswaffer/ for putting me onto these. I particularly like http://whichmeamitoday.wordpress.com/
Partly because Wendy’s in England, closer to home than many. Partly because she writes, like me, to make people aware and to influence change, partly because she puts in pictures, which I must start doing. (Means I’ll have to upgrade!)
In all the work I do to improve patient experience of health care the overriding reason for complaints and comments is to prevent anyone else going through the same bad experience.
I am in a slightly melancholic mood just now. Had a really bad day yesterday, exhausted. One or two forgotten things which I would swear I never knew but am assured I did. Realisation that in recent weeks I have slipped back a little, with more forgets, mistakes, uncertainties, imbalances.
And these trips to other worlds every night, many unpleasant, as real as any day of the week. Some mornings it takes hours to forget them, to re-learn that familiar people have not turned into hated bullies out to get me, or that I am not in a jungle avoiding huge death.
In this mood I wonder whether Wendy’s recent experience meeting other people with dementia at a conference would be good for me too. Whether I ought to find a peer group…but I know there are only a handful of other younger onset people with dementia in my Shropshire.
I helped set up our Shropshire Dementia Action Alliance this year, and chair it. Since starting, I have become the one member with a diagnosis! I sit on several Trust patient experience panels and committees, and raise dementia care repeatedly. I am co-facilitating CCG leadership seminars on how to commission services to put patients in control of their lives and health care. I challenge the Health and Wellbeing Board and CCG to do more to improve diagnosis and care for people with dementia.
I, like Wendy and countless others, am passionate about doing whatever I can to improve patients’ experience of care and of living with long term conditions, including dementia.
It’s what now makes my life worthwhile. It’s unpaid work. It’s what I get up for. And on the occasional days when I have no meeting, activity or event, I find it quite hard not to feel a bit aimless. Especially, in winter, when I can’t sit outside with a cup of tea, or do the garden.
So I also, on days like today, feel sad about my future. When I will be unable to go out to work, when fog will close around me. When I will not be able to find the tea, like yesterday, or lose my driving licence.
I want people to read my blogs, not to feed my ego, but to raise awareness and to get change.
So please, if you feel able to, re blog me, tweet me…
Let’s get it out there.