I’ve been trying to think about dementia and God, dementia and faith, dementia and the church – and I’ve gotten a lot of help from a Scottish theologian named John Swinton.
The premise of his book, Dementia: Living in the Memories of God, is that in Christianity, well-being is not gauged by the presence or absence of illness or distress; well-being is defined by the presence of God, and God is not distant from the one with dementia, or from those who love someone with dementia. How do we understand this sense of God’s presence? and then how to live faithfully with dementia? What might those of us who aren’t dealing with dementia directly learn about our lives because of the way we think about those with dementia?
In America, we define being human by what we think, how we talk, what we can do, how productive and interactive we might be. What happens when we aren’t productive? or become passive recipients of the care of others? This question applies not only to dementia but also to aging, or people with disabilities. W.H. Vanstone write a marvelous little book called The Stature of Waiting, in which he explains how in the first half of each Gospel, Jesus is in command, boldly striding into new territories, conquering demons; he is a doer, in control of everything, even the wind and the sea.
But then the mood changes abruptly. Jesus becomes reflective, less proactive, darkly hinting at his fate. He is “handed over” by Judas, to the authorities, and he does not fight back; he says nothing. He is no longer active, but passive. His glory dawns not when he acts, but when he is acted upon. Vanstone says this is hopeful for us, for our lives often traverse that same ground: we grow old or sick and are increasingly forced to be dependent on others. We fear our identity is lost if we are not active and productive. But Jesus shows us that who we are, who he was, is found not in our activity but in what we suffer, in what we receive.
Persons with dementia might continue to be productive, if we let them; I know a woman with no short-term memory who vacuums her house several times a day, and is content. But even when we cannot be productive, we are no less valuable, to God and to Jesus’ followers. We all need to learn dependence upon God – and it may be our best object lesson is in someone for whom we are caring. Dependence is not humiliation, but grace. My worth is not measured by my usefulness. Because of the Gospel, nothing can happen to make you less of a person.
What about memory? Life is often valued by what we remember, or what we think others remember about us. But we never remember everything, or remember what we remember accurately. Most of what I have read or learned, or what has happened to me, I have forgotten. If I forget, am I any less valuable? I do not remember my parents rocking me, feeding me, or nursing me; but they did, and I am the beneficiary. My children do not recall me doing these things – but those moments were no less wonderful for not being remembered.
Jonathan Goldingay, an Old Testament scholar, once invited his students to his home for pancakes. He told them his wife suffered severe multiple sclerosis, and so she wouldn’t recognize or respond to them: “She probably won’t remember you afterwards, but in that moment she will appreciate you.” Is a visit, a tender word, or an embrace futile because the person won’t remember? I have visited people with dementia, and have felt in the moment much love – and have even been ministered to myself because of the other person’s ability to love and nurture, even if my name and identity are an enigma.
Can someone with dementia have a spiritual life? I’ve seen forgetful, withdrawn people be quite prayerful; faith sometimes achieves a lovely simplicity in such instances. I have seen extremely confused, forgetful people smile warmly and tearfully and even join in singing when some old hymn is played. Perhaps the dementia sufferer cannot pray or read, but the rest of us can for them, and with them. Four men brought a lame man to Jesus, who healed him not because of his faith but because of theirs (Mark 2:5); all of us are carried on the tide of the faith and prayers of others.
Lauren Winner (in her book, Still) tells a wonderful story of an elderly couple coming for Communion. They both took a communion wafer from the priest. The woman dipped hers and ate; then the man dipped his, handed it to her, and she ate it for him. Lauren later learned he was afflicted by a wasting disease making it impossible for him to eat. They were truly in that moment one flesh. Can we be one flesh with persons with dementia?
Swinton says we are wise always to give the person the benefit of the doubt, to treat the person as fully human. We speak of love. We say “I am glad you are here; I love you.” We all have decay, we all suffer limitations. The difficult symptoms of dementia (belligerence, anxiety, withdrawal) are perfectly understandable reactions to confusing situations, strange living quarters, strangers poking and treating you.
To be with someone with any disability requires patience. What really is required is a new sense of time. Time isn’t about being productive, or packing a lot in. In patient waiting, those who sit with someone with dementia sometimes see small glimpses of beauty.
Jean Vanier (in Living Gently in a Violent World) tells about a hugely successful businessman he knew whose wife was diagnosed with Alzheimer’s. He said he just couldn’t put her in an institution, so he scaled back his responsibilities (and income), and stayed with her, fed and bathed her. He said “I have become more human” – and he was there one night when for some reason the fog lifted. Suddenly she was lucid; she looked and said “Darling, thank you for all you are doing for me” – and then, just as quickly, slipped back into the fog. He wept and wept – both sorrow and joy.
All Christians are called to a radical hospitality, a welcome of the stranger – not just to welcome strangers, but doing what we can to be sure they stop feeling like strangers. And studies show that if caregivers believe the person is still there, and still have value, the person does better. Relationships impact the brain over time; people with dementia, if left alone or only pitied, decline more rapidly. Those with dementia suffer an intense loneliness. It’s not as if our presence cures them – but all our lives we long to be treated as a child of God, the God who never forgets us, who knows us thoroughly and still loves totally, forever.