To the stranger keeping her place: a reflection on losing someone to dementia

I wanted to touch your hand but knew I couldn’t, knew you wouldn’t like that.  So I sat and I watched your eyes dart around the room, fixed on anything but me. The resemblance was unnerving. There was so much I wanted to tell you, tell her, but I knew it would feel unsatisfying, futile.

I was calm and patient, but only through practise.  I knew that if I showed my anxiety you would pick up on it, so I suppressed it as best I could. In truth, the reality of your dementia horrified me. It wasn’t just forgetfulness, it was erosion, reversion, destruction. Sitting before me was a child, but one who was never going to grow, to develop, to be.  It made me question everything about the nature of human identity and whether, if so much can be erased when the brain starts to rot, there is ever an ‘us’ in the first place. I had become an expert though, in burying these thoughts deep, and maintaining the illusion of a purposeful life.

Right then, I concentrated on you. When your eyes paused for a second in their searching, and you looked at me and smiled, I felt a warmth and a tenderness that for a moment made it all a little more bearable.  Looking at you, I felt she was there with me again; my mum.  I got my smile from her, and my laughter.

I decided to tell you about her.  About how she was unconventional. How growing up, there had been no boundaries between us and I felt I could tell her anything; others envied that. She made me believe anything was possible, that I could be anyone I wanted to be.  Even in my darkest days, when we sat up all night through my insomnia and depression, she never lost faith in me.

Chaotic and troubled, yet enthralled with life, her greatest fear was to end up like you, reliant completely on others, her mind no longer present.  I think of that as I watch your presence next to me, and I note to myself that you seem quite content.

As for my mum, I learned to surrender gradually to her illness.  At first I fought against the idea, refused to acknowledge what was really happening; I would become annoyed with her when she couldn’t do what she used to.  Then came the sadness, and the tearing pain inside me when I saw her suffering, casting a dark shadow over every aspect of my life.

I got help, I started talking to someone.  I talked about all that she meant to me, and in doing so, I revealed that the past was not as ideal as I had constructed it to be. In order to accept her leaving I had to get to know her again, the real her, not the idyllic fiction I had created. I discovered anger, resentment and a child who had taken on too much, who had carried the emotions of others inside her for far too long. But underneath it all was love, and when I confronted the rest and made the decision to leave it behind, it was this that remained.

It was around this time that I met you, I looked at you that first day and realised I had started to let her go.  I read you her favourite book, and I told you about my life, about who I was.  You couldn’t communicate verbally by then, and though the sounds you made meant nothing to me, the animated way in which you told your story with your face and hands, captivated me.  I caught glimpses of the past you, the stubbornness, the gentleness, something in the back of your eyes that told me you knew who I was.

When I looked at you I felt affection for the old lady sat in the chair. I wished I could restore her but I knew that I couldn’t.  I knew then that we would always be strangers, as there was no way to truly reach you.

So, I will visit, and we will sit, and sometimes if you are calm, you will let me hold your hand or even cuddle you.  It will always be these times when I cry.

As I got up to leave, a new member of staff walked by and commented on our resemblance. ‘You’ve really got your mum’s smile, haven’t you?’ she said.  I had to agree that I did.  I held on to you and wanted never to let go, but you looked at me with impatience.  I told you that I loved you and I meant it of course, but I knew I was talking to someone who had left a long time ago.  I grieve for you every day, but I will keep coming to see the stranger who is keeping your place.