As I struggle to work out the best way to be a Care Partner for Maureen I have no idea what it’s like to live with dementia.
When she was in hospital following stroke the Occupational Therapist gave me some special glasses to wear to give me an idea of what it was like to only have 50% peripheral vision. However, I am well aware that dementia brings a little more than visual problems for those with the diagnosis.
My new Dementia Defined page uses blogs from people who have condition. It is an opportunity to hear from the ‘horses-mouth’ what it is like to have dementia. That page also refers to an opportunity to experience some of the symptoms of dementia. I’m not sure I would go in for that: having the glasses on to restrict my vision was bad enough. Having the whole experience is something I don’t fancy at all, and how Maureen is able to put on such a brave face whilst dealing with such adversity I’ll never know!
I read the latest blog from, my dear cyber friend, Kate Swaffer just before I returned to editing this post. Her moving poem is a fitting way to close this piece:
I sat and cried for a while…
I cried for those people who I miss and still love who have left this world
I cried for the babies I lost in utero
I cried for my friends who have lost people they loved
I cried for having dementia
I cried for all the other people with dementia
I cried it is getting harder to function
I cried it is getting harder to paddle like that swan
I cried that doing the right thing or what is necessary sometimes unintentionally hurts others
I cried that almost always people takes things personally
I cried because this also hurts me
I cried that many people with dementia do not see value in a unified voice
I cried because without a strong global voice change will be too slow
I cried for those friends and family who no longer speak to me
I cried for a mother and father to talk to me before they or I die
I cried for the lost relationships with some nieces, nephews and godchildren
I cried for those who make a stand for better care, and get abused for it
I cried because my having dementia affects my husband and kids
I cried… and I cried… and I cried… and I cried
And then I got back up and made a plan to keep going
I stopped crying
Authors note: thanks to everyone for your messages of support; no words to tell you how much they helped, and sorry I did not respond to each one of them. Today, is, thankfully, MUCH better, and I guess the saying about a good cry making you feel better is true! I wrote this poem yesterday, in the depths of my sorrow and anguish, and initially was not going to post it here, but in fairness to the reality of living with a dementia, which is that you cannot possibly live well with it all the time, it seemed unreasonable not to publish it here.
Postscript: There will be a second post around 10am this morning about the problems of getting Maureen to bed at night.