One thing that is easy to notice is the way in which people tend towards negative language when they are talking about dementia. People talk about the loss of the self, suffering, the “tragedy” of dementia. All of that is at one level understandable. But what if we were to begin to talk about dementia in terms of love? Love is something that is fundamental to all of our lives. And yet, the absence of the language of love in relation to dementia is quite startling and more than a little tragic. However, if we use our imagination in a slightly different way, we might come to see dementia differently.

Where does love go?

Dementia brings with it deep and profound questions which challenge us to think differently about the nature of humanness. Primary among these questions is this: what happens to our love when we have forgotten what it is that we love? Where does our love go when we can no longer remember those whom we “used to” love? This sounds like a rather unusual question. However, reflecting on it will take us to some interesting places.

Recently I had a fascinating conversation with an Anglican priest who is a stroke survivor. He spoke to me about his experience of having a stroke whilst on holiday in France. There are many things that struck me about his experience – how it drew attention to his mortality, how it challenged the way in which he prayed and the things he prayed for, the way that he felt God was with him then and now – but one aspect of his story has really stuck with me. At one point in our conversation we were reflecting on the impact of his stroke experience on the way in which he viewed his family. The priest said this:

“I had to believe that the love that I have for my wife and my children does something and goes somewhere.” How interesting! What does love do? Where does love go? The priest’s experience resonates into the area of dementia and memory loss in intriguing ways.

Will you still love me tomorrow?

There is a verse in the Carole King song, “Will you still love me tomorrow?” (King & Goffin 1971) that always makes me think. Indeed it worries me a little. It goes like this:

Tonight you’re mine, completely

You give your love so sweetly

Tonight the light of love is in your eyes

But will you love me tomorrow?

The song talks about the power love and the tension between that passion of the loving moment and the possibility of a love that may or may not endure. If we shift the context a little, it becomes clear that the lyrics of Carole King’s song captures something profoundly important in relation to those living with advanced dementia and those who love them. The question, “Will you still love me tomorrow?” is not simply a matter of immediate passion; it is a question of deep existential concern. The great fear for those of us who encounter dementia is that the one whom we love; the person who binds our heart to this world more than anyone else, can change in such a way as to forget your love. From the Christian tradition, the apostle Paul tells us that love endures: “There are three things that will endure – faith, hope, and love – and the greatest of these is love” (1 Corinthians 13:13). Why then can and does it feel so different when we encounter dementia?

Still Alice

Lisa Genova’s excellent book Still Alice, speaks in the first person about Alice Howland, a linguistics professor at Harvard who in her early fifties is diagnosed with Alzheimer’s disease. The book sensitively narrates Alice’s painful journey into dementia in a way that is penetrating, delicate, thoughtful and deeply moving. At one point Alice has a poignant conversation with one of her daughters over the issue of where her love will go as her dementia progresses:

“You’re so beautiful”, said Alice. “I’m afraid of looking at you and not knowing who you are”.

“I think that even if you don’t know who I am someday, you’ll still know that I love you”.

“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”

“Then, I’ll tell you that I do, and you’ll believe me”.

Alice liked that. But will I always love her? Does my love for her reside in my head or in my heart? The scientist in her believed that emotion resulted from complex limbic brain circuitry, circuitry that was for her, at this very moment, trapped in the trenches of a battle in which there would be no survivors. The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.

Alice’s situation illustrates well the excruciating tension between perceiving dementia as a neurological condition that destroys a certain form of memory and holding on to the hope that lies in the possibility that our hearts somehow retain our love. Alice locates her source of hope in the heart; the mysterious centre of affectivity that holds us in relationship with both the Divine and our fellow human beings. Our brains may deteriorate, but our hearts hold on to love. There is a deep beauty in recognising this deep power of the heart. If you are a non-religious person it will remind you that you should always give people the benefit of the doubt. It may well be that love never dies even if its manifestations change in rhythm to a person’s life with dementia. If you are a religious person this reminds us that our encounters with God in the Spirit, through our hearts does not vanish with the wear and tear that time brings to our bodies. “Love never fails” (1 Cor. 13.8). Whatever our concept of spirituality may be, when we begin to think in these ways we are drawn into a place of mystery, wonder and hopeful possibilities. Our love endures.

This piece originally appeared in Health and Social Care Chaplaincy, Vol 4, No 2 (2016)

doi:10.1558/hscc.v4i2.31663