What Remains

A strange dream.

That her nursing home had been a space station and that I was still there, supposed to be 

packing up all her stuff, and all the things I had taken there. Ambivalent. Liking the people
there and the place. Apprehensive of the journey home (I don’t like the travelling bit of
travel…). Writing a note to my husband : “ I am not coming back”.  Scoring out the “not.”

I miss her. Just two of us now for Sunday lunch. Something thrown together rather 

than planned beforehand. No Perry Como playing. 

But who is it I miss? Gone before the process of dementia could do its worst, she was 
different from the person I’d known before. In the eighteen months before leaving sheltered
housing, she was often a young and loving mother busy with family - buying extra fish,
peeling extra potatoes, preparing food for them as they slept, waiting for them coming home,
laughing as she watched her boy play outside “making cheeky faces at me through the 
window”, contemplating walking up to the shops “with the baby in the buggy”. Happy,
contented.
Away from her house, for short times, her boy was still her focus - worried about
him being on his own, wondering if he had his keys.
But also, she was a loving daughter, with thoughts full of her parents. Sleepy during the 
day because they had been round the night before with friends. Setting off her door 
alarms in the early hours of the morning and explaining over the phone: “we’re having a
great time here - it’s a good laugh”. 
And the thoughts often turning to concerns - setting off so often to see her parents, to 
help her dad look after her mum. At times not feeling safe at home - packing bags to go to her parents: “if I can just get there, I’ll be OK”. 
And, in the nursing home, wondering if her parents knew that she was there; wistful when
no card came from them for her birthday; anxious still about not being there to help her
dad; asking us, when she was unwell, if we had let her mum know. 
Love  - for her son, her husband, her young brothers, her parents - was topmost in her mind,
when dementia had stripped everything else away.
And so the woman I miss is a love-filled mother and that love-filled daughter; trust in her
voice when I took hankies out the drawer for her, or took biscuits out of a cupboard for her,
or, on cold mornings, put a hat on her head and she told me that her mother had left them
there for her.

Love. It's never wasted. It's what remains.

"And now, these three remain; faith, hope and love. But the greatest of these is love" (1).






Footnotes:
(1) https://www.biblegateway.com/passage/?search=1+corinthians+13%3A13&version=NIVUK 

Gone

She has been gone now over two months.

Recently her son, my husband, returned home from a ten day trip. 

So lovely to see him; catching up, asking questions. 

But that question did not come

- the now needless, “and how has Mum been?”.

Even as I knew it would not, I waited for it and felt its absence.

Missed in its not asking and missed in its not answering, 
two more absences forming round the space where she had been.

The Happiness of the Here and Now

A dry Saturday afternoon, scents of spring and birdsong in the air. In the nursing home, I find her in her room.
"Would you like to go out for a wee while?"
"Oh, I'd love to go out. I've not been out since ...Sunday!"
Wednesday's visit to the heritage centre for tea, cake and a wander round the shop gone then. And Friday's time at the day centre, with their usual outing, also missing.
Outdoor clothes assembled, we make our escape. The waitress in the cafe is smiling and kind and directs us to a booth. We sit waiting for our order with a table for four between us. I can't ask questions about the morning or lunch - it's not fair when she can't remember. We stall in our conversation and we smile at each other. Looking in my bag I find a small, bright pink, power-ball and roll it towards her on the table. Pleased, she rolls it back, and, alert, she follows my fingers as I return it. Smiling and completely unselfconscious, she continues the game for several minutes, totally absorbed. Perfectly happy in the here and now.

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.