Of mirrors, identity, and the faces of dementia

I’ve always been bad at recognizing faces. If you have stood in a school’s lobby, peering at dozens of kids in uniform, not quite sure which of the alleged cherubs is your son, then you know the sort of problem I’ve lived with all my life. I dread to think how this problem will make things worse for me if I get dementia. And I know that for my mother, who had a similar difficulty with face recognition, this would have added to the woes of her dementia confusion.

Most people see the same face, the same person, regardless of the person’s changing expressions. But for me, each person has many faces, depending on the mood or place or what he or she is doing. This means, I have to remember so much more if I want to be able recognize someone. Other clues are not dependable either; people change their styles of clothes, their hairstyle and color, they put on weight, they lose weight….so very unfair, I tell you 😦

Decades of living with or near my mother has, however, made me confident about recognizing her face in all its moods. As I saw her slip into the confusion of dementia, I would watch her once-sharp-and-beautiful eyes look glazed, confused, even dull. I became familiar with those tiny changes in the muscles of her face that indicated the beginning of agitation; I tuned myself to preempt her agitation before it became full-blown. Her face is, to me, a collection of parts, and I know how each feature changes through her range of emotions.

This enhanced sensitivity to her expressions has impacted what I see when I look in the mirror. I now see similarities I was unaware of earlier. Not that my whole face matches her face, but hey, that side of my face from a particular angle, that is like her, is it not? And that way I frowned, the way my forehead creased, that particular furrow on the brow, isn’t that the sort she sometimes showed, a few years ago?

It scares the hell out of me.

Many people who meet daughters looking after mothers with dementia don’t realize this part of fear–when we see a familiar face undergo the transformation of confusion and disorientation, and later we look in the mirror and see a face like what our mother looked a decade ago. When we see someone descend the slopes of cognition, see a person lose herself a memory at a time, a skill at a time, and then we see in our own face, our walk, and our way of speaking, a similarity with our mother and wonder about our own future….

Losing a mother to dementia is about seeing a mother deteriorate. Seeing a person suffer, reduce, shrink away, and become helpless.

Losing a mother to dementia is also about losing the part of ourselves that is woven with the mother. Our own shared memories. Our childhood anecdotes that she knows better than us. Family relationships and who-is-who that we expected we could always check out with her. Just a few days ago, when I resumed touch with a cousin, we found we did not know how we were related; we need parents or other elderly relatives for that information which we had never bothered about. And there are all those things we were too impatient to listen to when we were children, those family history stories, those childhood tales of our parents, which we assumed we could get any time we wanted. All these are lost when a parent dies. They are also lost when the parent develops dementia.

And losing a mother to dementia is, in significant part, about fear for oneself. About seeing oneself go down the lane of confused memories the same way. Others around us do not realize how badly this sometimes hits the child closest to the deteriorating parent: the fear, the denial.

When I look back the last several years, and see how much time it took me to grasp the full measure of how deeply dementia was impacting every action of my mother, I wonder–perhaps at least part of my slowness in relating textbook descriptions to real life changes she exhibited was because of my unstated sense of identification with her. It must be worse for children who see the similarities more clearly.

Imagine growing up being told, you look just like your mother. You are just like your mother. Then you see her face change and her behavior change, and her walk and everything change slowly but surely because of dementia. And you wonder…this face of dementia…this is my mother…will this be my face a couple of decades away? Have I already started changing? Is that why yesterday I couldn’t remember the name of…what was her name again…oh no, see, I’ve forgotten it again. And you peer into the mirror, spotting or imagining tell-tale signs. Every problem gets magnified. That sense of identification drilled in by relatives and yourself is now a weight that you don’t know how to handle.

(Perhaps I have been lucky that I am not so good at faces, that this identification has not been as deep as it would have been otherwise.)

The world of caregivers is full of the daughters and sons of persons with dementia, and as this World Alzheimer’s Day 2011 approaches with its theme of “Faces of Dementia”, in addition to thinking of and feeling for persons with dementia, my heart goes out to each and every caregiver.

For me, the faces of dementia are not just the faces of persons with dementia, they are also the faces of those who see dementia lurking in the shadows because it has already struck people they know and love, and it seems to creep closer to them with every misplaced key or forgotten name. Given that dementia could strike anyone–too little is known about how to prevent the several possible causes of dementia–which face can we say with certainty, is not a face of dementia? A face of future dementia, if not present dementia?

Is a face of dementia a face of fear or dread, of hopelessness and inevitability, or can we all collectively inhale deeply and see it as a matter-of-fact situation we can cope with dignity? Can we get over that demarcation–this person has dementia, this person does not–and find ways to have richer lives regardless of dementia?

I do not know the answers, but I do think that, in addition to reiterating having “a world without dementia” we also need to have “a world that does not fear dementia.”

Just the ramblings of a daughter of a mother with dementia as there is a buzz around the world about the “faces of dementia”….

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages: https://swapnawrites.wordpress.com/about-contact/

9 Responses to Of mirrors, identity, and the faces of dementia

  1. Shashie says:

    Swapna, the description is so beautiful, I kept replacing word ‘mom’ with ‘dad’ and I’ve been checking myself too for symptoms. I am adding a link to this on CC, with your kind permission. Happy blogging.



  3. Vanita Kumta says:

    Remininscenses of the past come flooding back.Its a chou chou of memories,often sad and depressing,yet always welcome as they carry treasured momnets with loved ones who sacrificed their today so we could have a better tomorrow.Eyes may moisten,there may be a lump in the throat but one thing we must never let it do to us is soften us.On the other hand make those memories strengthen ones core to face life bravely full of the spirit of positivity.Whatever comes our way and whenever it comes may God grant us the grace to accept it activle & fully,considering senior years are bonus years of fortification.God bless.

  4. Jaya says:

    It’s a story of my mother,also…
    Expecting a world that does not fear dementia….

  5. Rummuser says:

    That must be the scariest part of care-giving, and you have brought it out so well. I wish I could say something to take away the fear. No matter how much I try, I am unable to.

    • swapnawrites says:

      Thanks for reading the entry and writing in. Yes, I wish I could remove the fear, but perhaps as the world moves towards accepting dementia, at least part of the fear will reduce…

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