The caregiver pilgrimage

A pilgrimage is both a holy journey and a powerful metaphor. Whether metaphorical or physical, it takes the pilgrim away from their normal context, and requires more of them as a result: more determination, more patience, more courage, more stamina. For many of us, becoming the primary caregiver for a loved one is the start of a new and often daunting journey. For people of faith, can it also become a holy pilgrimage? I have been pondering this question more deeply since my husband David was diagnosed with Alzheimer’s disease.

The Canadian Centre for Caregiving Excellence estimates that roughly one Canadian in four is acting as an unpaid caregiver for a family member, friend or neighbour. That’s around 10 million of us at any one time. Some are full-time caregivers, while others juggle caregiving with paid employment. This is a crowded pilgrimage, though the people on the path are often invisible because caregivers tend not to stand out. And so the journey can be lonely as well as demanding. But can it be holy? Can it contain grace and blessing?

It’s easier, of course, to see the rocks in the path rather than the blessings. In my experience, the rocks in the caregiver’s journey look a lot like the first four stages of grief that psychiatrist Elisabeth Kübler-Ross listed: denial, anger, bargaining, depression.

In denial, or perhaps before the caregiver grasps the full scope of the challenges ahead, the thinking goes, “I can do this. It isn’t so bad. Maybe the diagnosis is wrong. We’ve got lots of time.” The opening stage of the pilgrimage feels manageable, and there is hope lighting the way.

Further along, as the reality sinks in and the demands on the caregiver become greater while energy is depleted, anger shows up on the path. Sometimes I feel irritation and frustration at David’s memory lapses, and then I feel guilty for that. I don’t live up to my own expectations of patience and kindness. Anger, fear and grief are entwined, as I miss the way things used to be for us and worry about the future.

Bargaining in this context can mean planning and hoping for a future that is now uncertain: just one more trip together, one more happy birthday, one more grandchild to be born. And there may be conversations with God in the sleepless hours of the night: “Just grant us this, and I’ll be less short-tempered, more patient.” Sometimes it’s the raw cry of the Psalmist: “How long, O Lord?” I don’t know if I can do this.

For the caregiver of someone with a progressive debilitating disease such as Alzheimer’s, the depression that can settle in is a form of anticipatory grieving. The person is being lost inch by inch, bit by bit. David compares his disease to a thief in a library who is randomly stealing and throwing away book after book, and I see the ways in which he is being changed and sabotaged by this merciless thief. It is heartbreaking. The rocks of depression are grief, loneliness, loss, for both of us. The world shrinks and the path becomes darker.

Artist, writer and United Methodist minister Jan Richardson, in her prayer poem A Blessing for the Brokenhearted, says, “Let us agree for now that we will not say the breaking makes us stronger. Let us promise we will not tell ourselves time will heal the wound, when every day our waking opens it anew.” Easy answers or trite sayings don’t help, because they don’t touch the complex depth of the painful reality. Instead, she writes, “Perhaps it can be enough to simply marvel at the mystery of how a heart so broken can go on beating… [with] the rhythm of a blessing we cannot begin to fathom but will save us nonetheless.” (This prayer can be found in her book The Cure for Sorrow.)

Caregivers have hearts that are breaking because of their loved one’s suffering, and yet they go on. Resilience and faithfulness are the pulse within those hearts, and caregiving can become a form of spiritual discipline, with a daily vow to continue it with love and devotion.

David and I have had a morning prayer and meditation practice for almost 50 years, and many mornings these days I sit with that vow to care on my heart. Some days it feels light and natural, while others it feels impossibly heavy. And I’m reminded of the pilgrimage that David and I made in 2019, when we walked from Lindisfarne across Scotland to Iona. Some mornings we anticipated the day’s walk ahead with pleasure, but on other mornings we were daunted by the distance, hurting with blisters and sore knees, and taciturn with each other as we set out wrapped in our separate cloaks of gloom. What saved us, kept us going and blessed us were the gifts along the way of other people’s care, the beauty of the earth, and surprise moments of grace.

I draw on those same gifts now, on this pilgrimage of caregiving. Other people’s love and understanding are immeasurably helpful. While walking to Iona, it was the practical gifts of plasters for blisters, a warm blanket to go over my sleeping bag, advice about walking poles and knee wraps. Now it’s a friend who meets me regularly for coffee so that I can vent, laugh and sometimes weep. Or it’s the little group of caregivers who meet monthly to share our stories, pool resources, and know that we are utterly understood by each other. Or it’s my son’s offer to move in for a few days so that I can visit my sisters on the other side of the country.

Richard Gillard’s “Servant Song” hymn expresses it well:

We are pilgrims on a journey,
Fellow travellers on the road.
We are here to help each other
Walk the mile and bear the load.

The gift of other people makes it possible to continue the pilgrimage. Earth’s blessing is another constant, and one on which I rely more and more. Walking across Scotland, we were startled repeatedly by the sheer beauty around us, no matter how sore or grumpy we had been: bluebells and gorse, cows and lambs, mountains and valleys, and finally the astonishing turquoise of the sea around Iona. The earth is unconditionally generous in her gifts, if we have eyes to see. And now, at home, as I walk our elderly dog down to the river or over to a park, it’s a time to breathe more deeply and see more clearly. Even in the cold or wet, the earth restores me and blesses me.

Then there are the surprise moments of grace. After one especially gruelling day’s hike on the Scottish pilgrimage, we arrived at a hostel and found it offered home-cooked meals and a hot tub. What joy! That small luxury went a long way. And grace has continued to surprise me on the caregiving pilgrimage: chancing upon a poem or a quote that lifts my spirits; getting a phone call from a friend checking in; being given a time and place to retreat for a day. I’m practising noting those moments of grace, and saying yes to opportunities for self-care, not least because the sobering fact is that caregivers have an increased risk of illness and even death because of the physical, emotional, social and spiritual load they carry.

In her book Ordinary Mysticism: Your Life as Sacred Ground, author and teacher Mirabai Starr encourages us to be exactly who we are, “a true human person doing their best to show up for this fleeting life with a measure of grace, with kindness and a sense of humour, with curiosity and a willingness to not have all the answers, with reverence for life.” And she too uses the walking metaphor: “Keep walking. Rest up and walk again. Fall down, get up, walk on. Pay attention to the landscape… Be alert to surprises… and keep your heart open against all odds. Say yes to what is, even when it is uncomfortable or embarrassing or heartbreaking. Hurl your handful of yes into the treetops and then lift your face as the rain of yes drops its grace all over you, all around you, and settles deep inside you.”

The fifth stage of grief that Elisabeth Kübler-Ross identified is acceptance. For a dying person, it heralds the ability to let go, say goodbyes, and have some measure of peace about the impending death. For the caregiver, perhaps acceptance is about being able to say yes to what is happening to their loved one – not that it’s good, but that it simply is; and in the yes, gradually to find the grace that “settles deep inside.”

I’m not there yet. But I trust that this journey, like all our journeys, is held tenderly in the heart of God where the pulse of love abides and nothing is lost. And I trust that as we near our destination, we are always going home.