The caring reality: How your parish can serve people with dementia

In the new Novalis book Here With Us: A Parish Guide to Serving People with Dementia, The Catholic Register’s Michael Swan outlines a massive pastoral challenge. There will be well over one million Canadians living with some form of dementia by 2036. They certainly will not be absent from parishes. Are we ready?

Canada’s most unrecognized and ignored theologian never taught theology and never wrote any books of theology. But she had one original, penetrating and thoroughly convincing insight.

Sr. Simone Roach of the Sisters of St. Martha discovered in prayer and in a lifetime of nursing and teaching that what makes us human is care. We cannot be human unless we care. It’s not opposable thumbs or a big, complex brain that make us human. Rather, it is caring for someone or something. It is a lifetime of accumulated care for others. Though she never said it like this, we participate in the life of the Trinity by taking up God’s care for creation. We play a part in this whenever we are cared for or care for others.

Roach taught nursing. Indeed, she practically built the nursing faculty at St. Francis Xavier University in Antigonish, Nova Scotia. She was part of a generation of nursing educators who raised nursing up from a craft or trade to a profession. In 1980 she was asked to oversee the writing of the first code of ethics for Canadian nurses.

Lawyers and doctors have long had codes of ethics because that is the sort of public declaration of responsibility, to others and to society, that makes a profession a profession. The code of ethics Roach’s committee developed in the 1980s has been revised and recast a dozen times or more in the last 35 years. The code remains, as it should be, very specific to nursing. But the insight at the base of that code — that we are caring beings — has wide application. No parish, Catholic school, lay movement, diocese or volunteer should seek to replace or reproduce the medical care nurses provide. But they should care, and they should think about how they care for the people in their communities who live with dementia.

Roach came up with “six Cs” of caring. Any Catholic parish, or your parish dementia committee, could ask itself how it fulfills each of these six categories of caring — compassion, competence, conscience, confidence, commitment and creativity.

Compassion is the easy one. We know the meaning of the word — “to suffer with.” We know that the “passion” part of the word is exactly how we describe Christ’s suffering, from His trials before the Sanhedrin, Pilate and Herod through His scourging and crucifixion. The “com” prefix means “with.” Compassion for the person with dementia is simply a matter of knowing with certainty that her suffering is our suffering. She doesn’t struggle to communicate; we struggle. She doesn’t fear the obstacles in her path as she walks; we fear them. She doesn’t burn with shame if she is treated and talked to like a naughty child; we burn with shame.

Easy to understand, but not easy to do. If the daily practice of compassion isn’t easy, perhaps we should pray for those we have failed. Perhaps we should confess our hardness of heart. Maybe, when we receive the Eucharist, we should remember that this communion with Christ is also communion with everyone who suffers.

Competence is more difficult, because it raises questions about what competence we have and which competences we could acquire. Parish volunteers, sisters, priests and bishops are not (ordinarily) gerontologists, neurologists, psychologists or occupational therapists, and they should not try to fill these roles. But to serve a community, we must recognize that genuine communities are built on bonds of friendship. If a parish is not competent in friendship, it is not a parish. Perhaps it is legally a parish, but functionally it’s a club with a rather ornate clubhouse.

“You are my friends if you do what I command you,” Jesus tells His disciples. “I do not call you servants any longer, because the servant does not know what the master is doing; but I have called you friends, because I have made known to you everything that I have heard from my Father. You did not choose me but I chose you” (John 15:14-16).

If we are chosen to be friends, we are challenged to be competent in friendship. So the question this category of caring raises for the parish dementia committee is “How do we act on our friendship with those living with dementia?”

Conscience is too often defined in defence of personal, private, individual acts. Simplistic catechism descriptions of conscience are all about figuring out what to say when you are alone on your knees in a confessional. But neither the good nor the evil abroad in our world ever depends on any one of us individually. It depends on those larger movements and structures in our world — larger movements and structures we are caught up in. Nobody confesses that they burned down the Amazon, blanched the great coral reefs or extinguished thousands of species from the planet. But we were there. We were part of it. Such destruction is evil and it happened on our watch. Nobody confesses to propping up an economy built on greed, but we buy things we don’t need and define ourselves by the things we own and the debts we accumulate. We didn’t will this evil. But we have been part of the culture that made these choices.

Our conscience in relation to those with dementia must encompass more than individual sins we have committed against individual people with dementia. Our conscience asks us what good we have done, not just individually but collectively, for vulnerable people with dementia. Our conscience asks us whose side we’re on.

Have we advocated for better dementia care in our health system? Have we told our politicians we would pay higher taxes to ensure truly effective and adequate care? Why shouldn’t your parish, your school, your prayer group make that appeal — not just to the minister of health but to the minister of finance? Can’t you write a letter to the editor? Can’t you tweet on behalf of better dementia care? Whose side is your parish on? Whose side are you on?

Confidence eludes most of us. If we have any at all, it comes at us in giant bubbles that burst on contact. Confidence in what? Not ourselves, certainly. If confidence is centred on ourselves then it is not about caring, because caring is about how we relate to other people. But what if we are confident that caring for people with dementia will make a difference in their lives? What if we are confident that this effort is not useless or unimportant? What if we are confident that every small action taken on behalf of those with dementia is necessary?

Commitment is easy for a faith community. Faith communities exist to be committed. Otherwise, what’s the Creed for? If we believe in the Holy Spirit, the holy Catholic Church, the communion of saints, the forgiveness of sins, the resurrection of the body and life everlasting, do we therefore believe in those parishioners who walk in fear, struggle to speak, tremble in the grip of Parkinson’s? Are we committed to them?

Creativity frankly scares us. It seems to be the property of some special class of people — artists, dancers, poets, architects, etc. Most of us feel unqualified to be creative. But the word is not primarily about startling originality and art. It’s about what we make and how we make it. Making dinner, making conversation, making tea are not necessarily original or artistic accomplishments, but they are creative. They contribute something to the world we live in and how we live in it.

A creative response to dementia in the community is not necessarily the invention of anything new. It simply acknowledges and acts on the need as directly and concretely as possible. It places care somewhere that care is needed. Are people cut off and lonely? Then talk to them. Are people lost? Then guide them. Are people afraid? Reassure and accompany them.

A parish determined to respond to dementia needs to ask, “What do people with dementia need?” It can then respond to that need concretely. That’s creativity. It is also care.

(This abridged excerpt from Here With Us: A Parish Guide to Serving People with Dementia is published with permission of Novalis Publishing, www.novalis.ca)