Tuesday 27 September 2016

Dr. Ciara Kelly on dementia: 'Today's the first day my Mum didn't know who I am'

You eventually adjust to dementia but it still has the power to gut you

Ciara Kelly

Published 15/06/2015 | 02:30

Helping hand: 'She liked the home at first. She liked the company'.
Helping hand: 'She liked the home at first. She liked the company'.

Today's the first day my Mum didn't know who I am. She's had dementia for a while. It started with forgetting words. Misplacing things. Getting confused about time. She often can't remember who people are now.

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My husband and my kids or other relatives, are often a mystery to her. Though she smiles and chats away happily to them. But she has always known me.

And despite all that, I've never really even seen her as demented. Or even old. Which is partly a testimony to her big personality. I've never really seen her, as one of the pale, shrunken, white-haired ladies, I glimpse through half-open doors of quiet rooms, when I go to visit her.

She loves to laugh at the "Aul wans" as she calls those she's surrounded by. She doesn't see herself as old, either. And she's quick to point out that she's only in the nursing home because she works there. She'd be vague and slightly confused, if you pressed her on what exactly she does there. So you don't. She apologised once to my cousin for "Having to meet me, in a place like this." But she doesn't actually know what kind of a place it is.

I never thought she'd end up in a nursing home. We'd a downstairs room in our house that we turned into a bedroom for her. But she didn't like it. Staying only one night and leaving without a word at 6am to return home, back when she could still drive. But then, it became obvious over time that she needed more care than we or even a full home-care package, could give her anyway.

A fall that left her on the floor overnight, freezing and with her head only inches from a slate hearth, followed by a prolonged stay in hospital and she never went home again.

She liked the nursing home at first. It's a very nice place. She thought it was a hotel. It looks like one. She liked the attention and the company. She liked the food. But then the institutional nature of it began to grate on her ever- rebellious personality. She shouted at other residents and staff. She became a bit down.

But she rallied. She forgot that she didn't like the authority and imagined instead that she was part of it. She became friends with the nurses. She led the sing songs. She can be very charismatic and engaging still. She caused two old men to stand and salute, during her rousing rendition of 'The men behind the wire'

I'm sure when visitors came, she may have raised a few eyebrows with the occasional expletive or muttered insult. I'm sure when they looked at her, they didn't see the young woman, who was the star of The Andrian Players dramatic group, in Pearse St. in the 1940s. Who broke hearts all around her and was engaged more than once. Who broke with convention and married a younger man. Who raised a family and pulled a child through leukaemia, almost by sheer force of will alone.

Who gave up a 60 a day smoking habit, without a backward glance, after a prayer to Pope John. Who told me, to marry someone kind, with a good sense of humour because nothing else matters. Who sang Annie get your gun, waving a sweeping brush - like no one else. They never saw that but I always did. And she always saw me. Even when she didn't see anyone else. Until today.

Dementia is a kind of slipping away of the person you love, even while they're still with you. You see it happening. You can't stop it. You just adjust to it. But when she told me today she didn't know who I was - it still stopped me in my tracks. Enjoy the precious moments while you can.

@ciarakellydoc

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