Not fade away

We have a person suffering from dementia staying with us at the moment. We have not known her long. In fact, we only met her shortly before her illness began to manifest itself. She is by no means old, especially by today’s standards, and until recently she led a full and successful life. Yesterday, she and I went for a walk in the woods near us and I began to get to know her and empathise a little with what she is going through. By empathise I mean experience a fraction of her suffering with her for a few minutes, rather than simply observing it from a safe distance without knowing what to do or say.

As we walked, communication was patchy. It was a case of being ready to grasp the opportunity for understanding without holding on to it too desperately, as that would have created more anxiety for both of us. So we had to make the most of her sporadic moments of lucidity and my very nominal powers of intuition.

I have no experience of people with dementia, and I sense from being with our friend that it is experience which matters most, rather than simply knowing what to do.  Nowadays, thanks to the internet, we can find out what to do in almost any situation we are likely to be faced with in life, along with a good many others which will probably never happen. Instructions are not difficult to come by. But even the best instructions are no more than generalised pointers to help us deal with various situations or ‘conditions’.

Instructions mean nothing until they are literally fleshed out in an encounter with another person who is in need of that deeper understanding we call empathy. Empathy is not something one can work at or develop. It is not a moral virtue. It is given to suit the need, our own and that of the person who in that particular moment is in need of unfading love.

On our walk in the woods my friend who has dementia reached for my hand as she tried to speak of what she was going through, to hold on to feelings, to stop them fading away. I was encouraging her to describe, in whatever way she could, what life is like for her now and what hurts most. I do not know if this was the correct thing to do, but she continued to hold my hand as she articulated ‘with sighs too deep for words’ (Rom. 8:26) her sense of loss and of powerlessness. Until relatively recently she had held a highly successful career. She had travelled all over the world. And now we were walking in the nearby woods which must have seemed to her like an alien universe in which she occasionally glimpsed a fading, but once familiar past through the larch and coppices around us.  

Perhaps because the woods were strange to her, I sensed that it was important that my friend not feel that she was alone or lost. I sensed that she needed to know that she was part of a wider fraternity, the fraternity of all of us who are getting older and having to come to terms with being bereaved of those years in which we have been productive, or in which we wish we had been more productive and hence more valuable.

In today’s world when a person’s value is measured according to their success and productivity, coming to terms with the sudden loss of a successful career means having to resist the inner voice that tells us that we are no longer of value. But given that we only understand the concept of value in material terms, it is almost impossible to re-configure it so that we can understand it for what it really is. Our real value consists in being loved for who we are, not for what we have been, or might yet become.

It might seem at first that ‘religious’ people have a ready made solution, a cure, for this modern malaise of believing that we are without value and, one might suppose, of all the depression which comes with it. But people who are assumed to be ‘religious’ (whatever that is supposed to mean in the minds of those who use the word ‘religious’ as a convenient category to place people they do not understand) also experience this loss of value, this sense of disconnectedness from a God who has until now ‘held them together’. Forgetting the words of the Lord’s Prayer when you are well on in your nineties leaves you momentarily, but completely, disorientated. You are completely lost.

Here, it is worth bearing in mind that depression is a syndrome which must be especially frightening and incomprehensible for people with Alzheimer’s. If you cannot make memory connections, you cannot always know what it is you regret and, in less lucid moments, why these feelings of loss and of powerlessness are so acute. So there is an overlay of depression which, for dementia sufferers, must literally defy description.

God speaks love into the ‘lostness’ and disconnectedness of dementia, and of depression itself. He speaks it through silence more than through words.  He speaks it through the gift, or ‘grace’, of empathy which is sometimes given in surprising ways to unlikely recipients, but always recognisable for what it is.