A sense of loss

Losing a memory is horrible; it is as if a part of oneself is lost, because ultimately, our sense of identity is an integration of all the memories and thoughts we hold close to us.

It is also horrible to find oneself wanting to remember something, and not being able to, and not having anyone who can help us fill up the gap. And I am not only talking of what a person suffering from dementia feels; we all have experienced this some time or the other. Perhaps that is why we like to have around us, for at least some of the time, people with whom we have “shared memories”.

This fact came home to me some months after my father died. I was on my evening walk, and suddenly remembered an incident of the past, but could not remember some of the details. It’s okay, I thought, I’ll go home and ask my father. Then I remembered that my father was dead.

The finality of his death struck me at that moment. I’d not just “lost” my father, I’d lost all that part of myself that was secured as his memories, shared as his past where he was the adult who remembered and I the child who asked. I’d lost a chunk of my past and history along with losing his presence.

When my mother began showing memory loss, again I did not realize that it was not just she who was losing a part of herself, I was losing a part of myself, too. The part where she and I shared memories of the past, where she knew things I had always depended on her for. Our family, for instance. Which relative is related to us which way. Who is where, and doing what. Recipes. How exactly is manghauchi made? Movies. Which was that story she used to tell me where a man fooled his wife about some lights in a house nearby? Gaslight something or the other? Which was that song she had liked so much, some old Geeta Dutt number…

The past we shared became the past I remembered and she didn’t, and it had gaps I needed her to fill, had assumed she would fill, and she was not filling them. I was not even part of her own past any more; when she said “my home” she was now referring to her childhood home.

And that childhood of hers was faint, too. There were a couple of her childhood pictures in an album–were they her sisters or cousins? Was one of those plump girls my mother? I’d always known her to be slim. Was that man’s photo in the album her father or grandfather?

Then one day she tore up many of the newspaper clippings and other mementos of the past, in one of her dementia dazes.

Gaps were huger now, with little or no hope I’d ever know parts of her life and mine. This hollowed me.

But all said and done, I still had enough of family and a present life. I had a spouse and a son, a career, a life. Friends, colleagues. My mother was an important component of my life, but not my sole (or even main) source of identity. I was a grown-up, an adult, a person who had moved away from my parents’ shadow and made my own place in my own life.

It is far worse when a spouse has dementia.

Over two years ago, I met an old gentleman whose concerns were very different from most caregivers I knew. Most caregivers I knew were children of the patients; this gentleman’s wife had Alzheimer’s. His concern was how to make his wife’s days happier. He  was deeply saddened by the fact that she could no longer read, an activity she had enjoyed earlier. He wanted to know how to improve her quality of life. I sensed in him a great sadness on behalf of his wife. He was not seeing her as a source of agitated, troubled behavior or increased workload; instead, he felt her bewilderment and pain and wanted her to be happy.

After his wife passed away, I happened to visit his home and saw how every part of the apartment spoke of her presence, the way it flowed over with books and mementos and photographs. There was even a piano she had played…

It was not surprising that this gentleman never quite recovered emotionally after his wife’s death, and followed her soon after.

A few days ago, I met someone whose wife has dementia. The wife is in her mid-fifties, a fact that always gives me the jitters because that’s my age. She is calm enough, and stable, but she needs help to do things. She barely talks.  This man feels very lonely. She is there, and yet he cannot reach her. He cannot have a conversation with her the way he used to, and the way he must have envisaged them as having as they age.

We all build plans of spending our golden years together with our spouses, after having earned the right to fun and rest because we’ve paid our dues by working and bringing up children and being productive and all that.

Then bad luck strikes. By the time we have wrapped up our lives neatly and are ready to sit back and soak the sun and share smiles, the partner we wanted to share it with has dementia. The partner is there and yet not there. Instead of sharing fun times, or tender memories, the supporting spouse struggles to care for the patient. It gets difficult not just physically but emotionally, because the identity and most spheres of activities are tied around the spouse. There is a bunch of shared memories that can no longer be mulled over together. There is a deep sorrow, and sometimes resentment at being deserted by the spouse who has fallen ill.

I’ve met persons whose spouses have dementia, and they are always far more affected by it than children whose parents have dementia, even if they are in a supportive joint family or extended family system, it hits them hard.

I think they need a hug if we can spare the time and thought.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

One Response to A sense of loss

  1. Patti Brennan says:

    You will never know how relieved I was to read your insightful blogs and watch your enlightening videos!! Your work is so needed and appreciated because the general public really has no clue of what it’s actually like for the person who has dementia and/or the caregiver.. I was finally able to realize emotions and realities that I was struggling to articulate , to myself as well as , to others. Thank you so much for your work and your passion to teach others…

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