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Writer's pictureSally Kulasegram

Lost and Found in Dementia.

A Lockdown Lament for Mother's Day.


On March 17th 2021 it will be a year since I hugged my mother.

We managed a few visits from July 2020, outside under a perfect blue sky, ruffled by a sometimes chilly Cornish breeze, and with 2 meters between us, so that I could safely remove my mask to help her hear / see me. As Autumn whistled in, we were able to meet in the summerhouse, the sheet of perspex between us much more manageable than a closed window. Then Lockdown 2 came, and any visits were completely on hold once more. January 2021, and Lockdown 3 provided sporadic window visits, a Carer beside her, offering constant reassurance that I’m Warm Enough Outside, and that a Virus is The Reason I’m Not Inside.


What follows is a raw reflection on a doorway visit, notes scribbled as I debriefed on the moor, and polished up after another window visit ten days later.


 

Mum, ever the perfect hostess, worries that I’m Cold Outside. Tells me this place is Awful, eye-rolling at the hovering carer as she does so, her whole head moving with the rotation. In the next breath, tells me she’s Okay, then there are many attempts to give me biscuits, a blanket, cold coffee, but she’s okay without a hug, for now.


Even on good days this feels hard. And yet I’m blessed. In this time of such uncertainty and isolation I live in the Warm and Dry, still employed and, for now at least, her home has become mine. I’m slowly, steadily taking up space. This very privilege carries the bonus of being one of the few pieces of information that consistently makes her smile, every time it’s repeated.


Does she still recognise me? Yes. Even with masks and screens and windows. Yes. She is the one who is harder to recognise. I’ve not forgotten the turbulent times in this relationship, there are no rose tinted glasses here, no serious lapses in my memory, yet. It doesn’t stop me railing at the cruelty of the disease that has now had my mother in its sticky grip for years.


Afterwards, I am desolate like the wild and wintry moor I’m parked upon. I take my time with the habitual after-visit treat sandwich, packed with as much self-care as I can muster. Take time to locate, identify and integrate the pieces of my heart, and just hold them until they’re warm enough to pump again. I sit in the car and make notes of all the missing pieces, tiny shards left in a Borrowed Blanket, in the grey puddle on my side of the divide. But I know those fragments belong to both of us, and neither can be fully repaired without time to heal and hold each other.


Wild winds abating, it’s warmer now. But this remains cold, this stillness where my mother used to be. Vibrant, well-dressed, feisty, controlling, insensitive, and ultimately damaged. There are moments when I feel the weight lifting, the weight of her sadness and frustration, and mine. Sometimes it’s difficult to tell where one begins and the other ends - the lines are blurred between Carer, Daughter, Mother. In ‘normal’, or ‘pre-pandemic’ times, her being in a home would afford her the care I cannot give her, and me the luxury of being a daughter.


There is a continuous grieving process serving as Dementia’s Silent Shadow. It dogs the footsteps of unpredictable deterioration and a slow, relentless disappearance of the person we once knew. Like all grief, it journeys with us, until a quiet moment. A shifting shadow laced with Shalimar and mint imperials, snatches of song, remembered phrases, reveal its constant presence. Guilt shimmers in the darkness.

Acknowledge. Lean in. Let go. (My mantra when I remember).


This is not an equal battle. This is not her time to pine and waiver. She wants stability in her shrinking world, hope in her mornings. Both are unreliable, in our world and in hers. I look for signs of Spring in nature and in step.












PS If you know someone who is caring for a Loved One with Dementia / Alzheimers, please reach out to them. They may be just as lost, just in that moment.

 

Like many Dementia patients, my mother’s diagnosis was too late to be registered. By the time it could be verified by MRI, the risk to her anxiety levels were too high. Repeated explanations of the process, and what the possible diagnosis would be, would have caused her to become physically aggressive in her terror. All instructions or details forgotten in seconds, the risk to her safety inside the scanner became the guide. Her medical notes identify her as having unconfirmed Dementia, probably Vascular. Early intervention and medication were unavailable to her, like so many. It is a terminal disease without prognosis.


There are 850,000 people currently registered in the UK, and Alzheimers’ Research UK data suggests this figure will be over 1,000,000 by 2025, and 2,000,000 by 2050. We need proper training, proper pay for the enormous work these people undertake day in day out, regardless of Pandemic or proper PPE. If something written here resonates with you and yours please consider donating directly to the site.

If you'd like to know more or make a donation direct to Alzheimers UK



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