The Stash

Early this month, we thought we had closed the door on her independence. Now, sleeping at 
night in a small room with only a scattering of familiar things; eating meals in a roomful of
quiet individuals except for the one who repeatedly shouts “nurse!”; spending her days in a 
day room, waiting for a visit, hoping for the chance to go out.
And so there she  is one day, a week later, in the day room, coat on, expectant, pleased to see
me. And out we go, to a café, tea and an empire biscuit. And then, as we walk round the 
village to stretch our legs and admire the flowers, she puts her hand in her pocket, and, 
finding a kit-kat, takes it out and eats it. And I grin with relief, and catch the eye of a 
passer-by who has seen, and who grins back.  Independence is not gone - we are not that 
powerful. Hallelujah.

what's behind it all

The first is there in her eyes. Puzzlement. I've been worried about it, but a book I just read has made me think more positively about it...

The second is love - I may have mentioned that before - and the same book maybe didn't give it quite enough press, although it gives it some.

"Elizabeth is Missing" by Emma Healey.

Written from the point of view of a lovely 82 yr old lady, Maud, who has dementia, there's a clear sense of her intelligence running through the book. Maud is constantly trying to make sense of her increasingly baffling world - and even though she often joins the dots up incorrectly, she is working so hard to try and understand what's going on all the time. So - not a helpless puzzlement then - a determined effort to try and figure it all out.

So much rings true in the story but some does not. Maud is treated by almost everyone she knows and meets with mockery, impatience, condescension or embarrassment. Worst of all is Maud's experience visiting a church. So different for us. A week ago - an exhausting, despairing day - her so confused and muddled, me trying to get the possibility of a UTI taken seriously by her GP surgery. But someone in our church listened to God's prompt, and as she prepared a lasagne for her family, prepared another one for us! And then, for four glorious days, two other ladies in our church went on 24/7 standby for the Alert system and the wanderer door alarms, visited her, checked on her, and got her meals ready so that we could  be away for a break. Our church has welcomed her, loved her, cared for her and cared for us through all this. And we know of strangers who have helped her, and her Homecare staff are so patient and kind, and the checkout staff at her local Superstore treat her consistently with concern and courtesy. I could go on! :)

Anyway - read it! It's a great book and gives great insights, and you'll recognise Maud - dementia and all - as a woman greatly to be admired. Then maybe like me, you'll look at someone you know with dementia, and admire them too.

Putting the photos back in the album

It's not always like this.

Arriving late evening, putting tomorrow's evening meal in the fridge ready for Homecare to heat.

Asking her, "so you're about to get ready for bed?"
And she's watching out the window, scanning the path - "I just need to get the wee one in and ready for his bed."
Remembering "Contented Dementia" - do I humour her? - remembering the CPN's advice - do I 'gently reorientate' her?
I want her to get ready for bed.
Saying her name, "remember that it's just you here - he's all grown up, and married to me, and he's away out at a meeting."
And she looks at me, panic and puzzlement in her eyes, "I wasn't thinking of him, I was thinking of my own wee boy..." Scanning my face now, looking for reassurance.
Not gentle enough then.
Remembering Oliver James' photo album with the missing photographs, remembering the photo life story we put together on the CPN's advice.
Explaining, "yes, he was your wee boy. And you looked after him beautifully, and took care of him, and took him on holidays to Millport. And he got bigger and went off to university and grew into a lovely man, and I married him and now he's my husband."
And she listens to the story and her face relaxes and she throws her head back and laughs such a happy, relieved laugh, her eyes dancing, "Oh, that's good!! So, it's just me, then? Well, I'll just get ready for bed."

in the face of

Love - in the face of great difficulty we'll hope for love. It's early days - we have an idea of the hard times ahead - but love in the face of great difficulty has won for us so often before.

Love in her face, shining and appreciative, may well go. But loving her always, just as she is, that's what we'll ask for.

Love - patient, kind, enduring all things, hoping all things, never running out, always protecting, never giving up. God is love, an infinite resource for our loving.

So, not wishy washy soppy love, but powerful love with muscles and grit and oomph.
Love - like a great big messy custard pie - in the face of dementia.

LUDO

She sat detached and quiet after Sunday lunch, ready, as often, to slip into a nap. Brightening, at the suggestion of Ludo. Watching the board being set up. Rolling the dice. Letting a grand daughter move her counter - but watching, concentrated, leaning forward, smiling, laughing, engaged for the length of the whole game i.e. quite unlike her usual these days.
So - have just ordered Snakes and Ladders.
Wondering about taking a small tabletop game with us when we go out for coffee, for the times that conversation gets too difficult. Any suggestions?