The first elderly person I cared for was my own grandmother, Anni. I had adored her from my earliest memories – in fact, my actual earliest memory. When I was three, my baby brother was very sick. While my parents spent weeks in and out of the hospital with him, I camped with Oma Anni. She had a quaint little trundle bed that rolled out from under her bouncy grandmother bed, and I slept near her, after three other very important events had occurred – a nightly reading from Johanna Spyri’s Heidi, a bettmümpfeli (apparently Swiss for bedtime snack), and then, rather than lullabies, songs of praise, sometimes accompanied by her quiet guitar. They were in German or Schweizerdeutsch, but I recognized a common thread: Jesu – Schönster Herr Jesu. I fell asleep under a blanket of benediction.

As she entered her nineties, I offered to care for her in turn. I was in my early twenties and we had not lived together in years, but she still thought I was her little Swiss Miss. You wouldn’t know she was growing more forgetful except on occasion, such as the first time she turned on her lamp in the middle of the night to go to the bathroom. Because she had become so unsteady on her feet and didn’t care for the idea of a walker, I was sleeping in the same room to be at her elbow as soon as she stood up. When she beheld me hastily mobilizing, she gave a surprised but delighted smile – “Ach, that’s right! You are camping with me. Just like olden times!” We went arm in arm down the hall and back, and she kissed me good night.

The next night, I awoke to stealthy movements in the dark. She was putting on her bathrobe and tiptoeing toward the door. I jumped up with alacrity, and she expressed some mild dismay – “I was trying not to disturb your sleep!” We had the gentlest of arguments as to my true purpose for camping, and from then on, she accepted the nightly company with good grace. I realized later that she accepted everything with an uncommon amount of grace.

She took every day as something of a celebration. I never once heard a word of anger or criticism toward anyone. We had many cups of tea, much laughter over small daily happenings, and sometimes just times of quietly being together. She died as gracefully as she had lived, stepping eagerly across a threshold to be with Schönster Herr Jesu.

How I hope I will inherit her grace when I am old. I know that my mother will, and that I most likely won’t. My caretakers will probably have to acquire patience they didn’t know they had, just as I had to with the next elderly lady I looked after, who was irked at needing to depend on anyone. I’ll call her June. I was never fast enough for her, or very good at perceiving needs: the room was not warm enough, or it was too warm. How come her favorite blanket was in the wash again? Why did we have to go out for fresh air? Didn’t I know that one could die from exposure to too much fresh air? Always exhausted, she planned three naps into each day, so the corresponding nights only continued the cycle of catnaps and complaints. It was eye-opening to find out that not every old lady was Oma Anni, and soul-opening to realize that this Oma needed love just as much, or even more.

Now that I’m no longer in my twenties, and have had to face some chronic health issues myself, I wish I had seen June more clearly: her dignity, her personhood, her fears. My grandmother did not fear death; she was peaceably counting the days till she could cross over. June did not seem to fear death either, but with every breath, she was battling the process of dying with its spiral of loss – loss of agency, ability, visibility. This must have been terrifying.

It can be a different kind of terrifying to be a caregiver, especially if you have no respite from a difficult, frequently thankless task. It’s hard enough when you’re earning a living caring for a stranger. Your day’s work can include anxious or irritable patients, backbreaking lifting, contact with body fluids. And for all this effort you might get minimum wage.

But when it’s a relative, and you are her round-the-clock attendant with no backup in sight, it’s hard in other ways, with love and gratitude and grief and role-reversals tangled in the mix. No matter who it is, though, here we stand, like Sisyphus staring up the mountain every damn morning. Any distance we may have pushed the rock yesterday must be slogged through all over again today, and the rock seems to be getting heavier every time.

Until our society attributes far greater value both to caregivers and those who need care, families will continue to operate in an hour-to-hour survival mode.

I don’t believe elder care is truly tenable for one nuclear family, let alone one person. If we honor God’s image in each human being, especially in the frail, we ought to honor it together. Yet until our society attributes far greater value both to caregivers and those who need care, families will continue to operate in an hour-to-hour survival pattern. Nursing homes will continue to be understaffed and underfunded. Caregivers will continue to burn out. If society is failing to meet these needs, what other options are there?

A strong case could be made for compensation, perhaps Medicare funds made available for those who work to care for a relative, both to acknowledge that it is work and to make it possible for more people to do it. But while this could help support families trying to manage on their own, no amount of money can truly capture the value of this care. And increasingly as the years go by, more elderly people are family-less, never having had children who might care for them in their old age. They have no network to uphold them, financially or otherwise.

Care fatigue can happen even when there is a support structure in place. Within the Bruderhof, the intentional Christian community I belong to, there’s a fairly robust structure. Members live together on intergenerational campuses, and most of us are tasked with caring for an elderly person at some point in our lives. Acts 4 is a central tenet of our church: “And God’s grace was so powerfully at work in them all that there were no needy persons among them.” We might not always feel God’s grace as powerfully as did the early apostles, but we can believe in it, and work so that no one is lonely or neglected. It’s still hard, but it’s doable; we have others to lean on. We promise to care for each other as brothers and sisters, and we trust we will be cared for in turn.

Each Bruderhof community assigns a team to look out for the needs of its inhabitants, every family and member. When someone needs more active care, whether a daytime or live-in arrangement, there will be a discussion as to who can best step up. Such a request doesn’t come as a total surprise to the person called upon – when we join, we promise to serve wherever the community needs us most. We might not like the timing, but we can’t beg off just because we already have a day job. If people are to be prioritized over profit, the income-earning workforce will take a hit – several hits. Even worthy ventures such as Plough might have to take second place. (At the Bruderhof, we don’t take home individual salaries – any income is shared among the whole community – so the tradeoffs that many other families experience between earning a living and supporting a frail relative are alleviated.)

This care doesn’t require much medical expertise; our onsite medical team checks in with anyone who is aging and calls on specialists for more critical health needs. The caregivers assist in the tasks of daily living, in the minutiae that are sometimes awkward, often messy. Often beautiful as well.

In our first year of marriage we did not get romantic evenings and scenic outings. We got a training in what makes a real marriage.

There are other churches and congregations that work to set up care networks, or support and relieve families who are navigating full-time care situations. But they also face the quandary of a limited workforce and shifting commitments. I don’t know how this model might be extrapolated into wider society, but if change is to come, it will have to be through example, and some of the best examples are to be found in circles of faith.

Jason and I had been married a few weeks when we were asked to look after Doug and Ruby. We had demanding jobs, worked with the community youth group, and had just discovered our first child was on the way, but we were game to try. Besides, twenty years before, Ruby had been my English teacher and I would be forever thankful for her interest and inspiration.

Newlyweds and octogenarians – that was a new dance for both parties. There were a few missteps as we all found our groove, but really, there were no great challenges for Jason and me; it was simply a matter of putting their needs first.

One could argue that the first year of marriage should be about getting to know each other, spending romantic evenings and taking scenic outings. We did not get that. We got a training in what makes a real marriage. Whatever was happening, Doug and Ruby each thought first about how it would affect the other. Ruby often had trouble sleeping, and Doug read her Elizabeth Goudge novels by the hour. Sometimes they sat together in companionable silence, needing not a word between them. Sixty-three years of marriage, three stillborn children, three living children, two of them adopted. Grief and joy, the span of a whole life lived in search of faith and truth – what words still needed to be said?

The four of us started and ended our days with a reading and a prayer. Sometimes Doug had a tip or two for us, sometimes Ruby and I talked books till a little bit past bedtime (or a lot). We didn’t know that they were in their final months. Ruby died soon after a stroke, and her family included us in all the final gestures of love, as we set up the wake, brought in sheaves of the lilacs blooming outside her window, and pinned tributes from former students on the walls.

Doug outlived her by a few months, grieving, hurting, sometimes abrupt or peremptory in his pain. Even though he had family nearby, he was unhappy if we were out in the evenings, so we stayed close. He often spoke about Ruby, of the many ways he knew he would miss her and all the little things that still surprised him every day about her absence. We felt impossibly young and inadequate, yet honored to listen.

Eighteen years later, Doug and Ruby remain in my heart, along with the others we’ve cared for since then. Some were easier than others. I have found the physical side of caring much less difficult than looking after someone with dementia. It hurts viscerally to see a vibrant being going gray, no longer recognizing her loved ones, lashing out, not against people but against the encroaching emptiness.

I think of these experiences now when I encounter Friede. She has always had a regal bearing; as a child I thought her beautiful and a bit fierce. She loved in an expansive way, yet sometimes seemed aloof. Now she has advanced dementia and needs a sturdy team of young women (some trained nurses, some natural caregivers) to help with bathing, eating, and getting out of bed. It is not at all easy, and they have set up a rotation so they can look after her well, and take breaks between.

I’m not part of that care team, but I see Friede every day. Whenever she catches someone’s eye, she says, “I love you,” and she wants to hear it in return. If you are within reach, you will be pulled close with surprising strength, for a hug or a resounding kiss. These are not hard to give or receive. Her eyes still flash brilliantly, and I think she must still remember her people, the ones she used to boss around lovingly years ago. But there’s no way to tell. Her own brothers and sisters have all died, so the people within range are all she has.

One evening in December, when my youngest daughter got back from singing carols at a local nursing home, she was pensive. When I asked her what was up, she told me, “There were no decorations in their rooms. There was no way to know it was Christmas. I think our songs were the only thing.” She felt lonely on their behalf, and wondered where their families were.

The next day I met Friede, accompanied by two of her faithful attendants, and we exchanged another hug. I couldn’t help wondering if this was her last Christmas. Either way, she was living it up, traveling everywhere under a festive red blanket, eyes sparkling at the lights, singing carols with words and tunes that have not yet deserted her. She knows what love is, and her caregivers do too. It’s in every lift, every spoonful of breakfast, every bleary day that follows a busy night, every burst of unexpected laughter, every wordless tear. It is her family.