Loving Our Ailing Relatives: Still The Same, But Different.

“Take me away from here”, she croaks. “Take me away”.

These are the words my mother say when I first visit her in the nursing home

“I know you don’t want to be here, Mum. You never wished to be in a home. We just can’t look after you at your place”.

She smiles weakly. The grip of her hand strengthens, even as her eyes fade to blank again. She does not notice my glistening eyes, my indrawn breath, my devastated mouth. She does not reach out to encircle me in her wizened arms, to stroke my growing hair and tell me that it’s going to all right. She does not ask about her grandchildren, what they are doing, how they are going.

She cannot.

Mum’s days in the institution are routine. The staff, compassionate, chiack with her as they feed her.

“Your Mum is a cheeky one”, they tell me. “We love her.”

But where are Mum’s loved ones, with family history to share? Where are her friends to lighten her day with their stories about golf or bridge?

My gregarious mother lies shrunken in her bed, bereft of visitors other than her devoted partner, and her immediate family. For years.

“We’re not going to visit your Mum,” said her relatives once they heard she’d been placed in a home.

“We want to remember her as she was”.

I don’t really know why her relatives chose not to visit Mum. I am guessing they did not want the sadness of seeing a loved, once-strong woman frail and vulnerable - what would they say? Or perhaps they were protecting themselves from the pain of seeing their flesh and blood deteriorate, the hurt of not being recognised.

By not visiting my mother, were they were hoping to select their memories of a person they knew and loved, unchanged by who she became?

Our relatives had a choice about participating in my mother’s final years. My mother did not.

Ten years ago I’d have said, and possibly done, the same. Now, however, the experience of witnessing my mother’s progression to death via dementia, has changed my views fundamentally.

I’ve discovered that when we seek to preserve our past, we may deny ourselves a chance to enrich the present, for memories in the future.

Today, after experiencing my mother change and deteriorate for years, after standing vigil as she died, how do I remember her?

How might her relatives have remembered her?

When Mum comes to mind, she is not as I last saw her, shrivelled and still, her eyes blank, her laughter gone. She is not as she was in her dementia years, her speech disjointed, her person dishevelled, her dignity lost.

What comforts my heart when I think of my Mum, what sweetens my morning after dreaming of her, is that I remember her as my mother-before-dementia.

Although shadowed by grief, I feel her, I see her, I sense her, and I hear her, as the person who influenced our lives. She is the person who loved us and adored us, the person who encouraged and supported us. I see her smile lines, her hair permed into soft curls, brown, not grey. Her sturdy legs confidently stand at the stove, and roast chicken wafts from the electric fry pan. Her ever-ready laughter bubbles as she listens to her grandchildren, and her arms are always open, ready to console.

Now, I am not distressed by the memory of Mum’s final years, but by guilt for the special days I missed - her birthdays, Mother’s days, a Christmas or two. In my head, I hear her murmur,

“Don’t be silly. You had your kids, your life to lead. You came when you could.” The burden lifts, a little.

I fear, though, that both my mother and her relatives suffered from their wariness. Could their presence have eased the long loneliness of my mother’s disease? After all, I had witnessed her respond, even when we thought she could no longer respond - especially in the presence of those she loved.

My children and I walk in the room and see Mum in repose. Sleeping - or so we thought. I natter away. “Do you remember this? What about when we . . .” Nothing from my Mum.

“Why don’t we play her favourite music?”

My daughter searches for Glenn Miller’s ‘In The Mood’, and the tinny strains of trumpets play from my phone.

“Mum, look! ”exclaims my daughter. And there are her eyes, wide, blue and open. We swing her hands back and forth with the music, and a croak issues forth – as she hums!

I found caring for my mother as she ailed, as she died, distressing, at times frustrating – and a privilege. I would not know this, though, had I not been there. What have her relatives lost, I wonder, by remaining away?

With the benefit of hindsight, if they were to say to me today,

“We want to remember your Mum as she was”, I would reply:

“She’s still Mum, just different. I think you’ll remember her as you need to remember her.”

And I would lead them in to hold her hand, to reminisce on their childhood with her, to caress her soft, crusted cheek.

To love her, as she was. To love her, as she is.

First published 11 May, 2018.

Questions for your parents: encouraging their reflections on a life lived

The Heartbreak of packing up your parent's house

The privilege of keeping watch over a dying parent (and grandparent)

Helpful video on how grief changes over time. https://www.facebook.com/bbciplayer/videos/2168915343327846/?t=0