This month I spoke at Homewood Retirement Center, a 121- apartment senior living community in Frederick, Maryland with independent living and continuing health services. My hosts were the Caregivers Support Group there, but the lecture was open to all residents.

Previous speakers had been experts in fields like estate planning or dementia. I would be the first actual caregiver. 

Many independent Homewood residents are caring for spouses in their apartments. Eventually the spouse might require care elsewhere in the Center, but my listeners were trying to stave off separation as long as possible.

I wanted to be encouraging. At the same time, I had to be real. I was talking to people who are struggling – caregiving is hard.

The encouragement I offered was two-fold. “I recognize you do this because you deeply love the person you’re trying to protect. What you’re doing is heroic. This is a person who deserves your tender care, and you will not abandon him or her. But… it is a sacrifice. Your longing for your lost life is not selfish.”

The paradox: you’re sincerely committed to your loved one. And, at the same time, you may sometimes want to run away. As my late husband Jerry used to say, “Life is not lived out in black and white. Life is lived out in shades of gray.”

So I offered some thoughts about caring for the caregiver, even when there’s very little opportunity to follow the obvious advice, like getting exercise and plenty of sleep. As your loved one requires more help it may be tricky to snatch even an hour or two for yourself.

  But here’s what you can do: you can tend your own inner life. You can nurture your “soul” (or whatever you call your deepest self).

Some suggestions: find a safe place to speak openly, where you won’t feel judged, even about your darker thoughts. This could be a close relative, a therapist, a good friend, a support group. 

Keep a journal of your thoughts, positive and negative. Write it all out – you can burn it later. Breathe. Practicing withdrawing energy from the surface stuff and turning inward. Meditate. Pray to become an instrument of peace. 

And remember, this too shall pass.

A Book Review: The Forgotten Life of Eva Gordon by Linda MacKillop, Grand Rapids, MI: Kregel Publications (2022).

Old people often long to “go back home.” Home usually means a place where they were younger – and happier, at least in memory. Or where they lived with a spouse and young children. Or the most recent place where life felt free and meaningful. In my case it might be in Florida, where I grew up – or Washington, DC where I worked, retired and lived with my husband Jerry for nearly thirty years until he died. 

I now live in Annapolis with my current husband, Jim. We’ve been here five years. It’s beginning to feel like home.

“Home” may not be a place, but a relationship. When my parents were alive and living in Florida, I’d talk about going home for Christmas, even if they were in a place I’d never lived. Home was where my parents were.

Home may also be a place of belonging. (“You’ve made me feel at home”). Or a place or situation where one feels at ease (She was at home in a kitchen).

For people of faith, “home” may be life after death. They sometimes speak of death as “going home” and a funeral as “a homegoing.” 

The Forgotten Life of Eva Gordon is a novel about a cranky old woman with dementia. She keeps running away from her granddaughter, Breezy, who in pity has taken her in. Eva is looking for home – in all its meanings, though she doesn’t realize it at first. 

Author Linda MacKillop poses a profound question: When, if ever, is it too late to go home? Can one find belonging and redemption even after memory is gone? 

Eva is trying to escape to a home on Cape Cod where she once lived. She also wants to re-live a time when her children were small and she was happily married. In spite of current forgetfulness, Eva recalls and regrets the mistreatment of her children that had driven them and her husband away. As adults, they’d all shunned her. Her husband is gone, her daughter is dead, and her son Rob lives in England. She has no words for it, but the “home” Eva really seeks is reconciliation and forgiveness. 

This is also the story of Breezy, a young adult with a job and a boyfriend, Ian who has also taken in a solo uncle. She and Ian could be the patron saints of family caregivers. Anyone of any age would find life with Eva challenging. Eva is sour and ungrateful and needs to be watched every minute, but these young people are unfailingly kind.

Readers may find them too good to be true. I kept hoping Breezy would lose her temper and say something ugly but it never happens. She seems more relieved than angry when she scolds Eva for running away, breaking in, and taking up residence in a for-sale home before the police could discover her.

We watch Eva evolve with the help of a “babysitter” and neighbor who show her a better way. The sitter also allows Breezy and Ian to have more time together as they plan a wedding and move to Ian’s farm. Where, of course, Eva is welcome but doesn’t want to go. 

Eva’s story explores the limits of redemption, which is, at bottom, a spiritual issue. Is it possible for Eva, who comes to recognize her own part in estrangement from her children and the failure of her marriage, to still be worthy of love? 

And it also explores the limits of caregiving. According to www.caregiver.org in 2020 there were approximately 15.7 million family members caring for someone with dementia. This book gives a hint at the complexity of the task. What is the source of Breezy’s patience and love? What are realistic alternatives for us non-saintly folks? 

This is a timely and encouraging read for caregivers and the ones they love.

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Review by Carolyn Miller Parr, co-author of Love’s Way: Living Peacefully With Your Family as Your Parents Age. (Henderson Publishers, 2019).

This month’s blog post features a moving piece by Jim Marsh, used with permission. – Carolyn

The word came to me as a waking dream, right in the middle of a Lenten fast that had been hard. A sharp reminder that I have the power to sing, even in the darkness. To dance without music. To see daylight through the dark veil of war, be it within or without. The tears remind me that I am still very much alive. We embody so much more… all of us bright shining like a thousand summer suns. 

As the war raged on, they played their instruments anyway. Newspapers everywhere ran the story a few weeks ago. Scattered members of the Ukrainian National Symphony Orchestra gathered in the center of Kyiv, playing Beethoven’s “Ode to Joy”, [the tune on which the European Union’s anthem is based]. In other parts of the country, closer to the bombings, soldiers played their instruments too. They played the songs of their homeland, singing in their mother tongue in the face of all manners of death and devastation. They sing the song of freedom… notes shared by every language… pregnant with Light.

On a cold winter’s day, I sat in my home church, singing the songs my mother loved, a funeral wish she had left us. Sitting on the front row, I held my chin up high as I sang, gazing into the rose window above the altar, a stained glass mandala to the rising of all things. I remembered her raised chin as she gazed at that very same window, all those years ago, as she sang her songs at my little sister Milly’s funeral. The many nights she slept in that hard hospital chair, beside the bed of her youngest child. I thought of that, as my head lifted towards that great window full of the red shining sun. And in that eternal moment, I heard her say, “Rise, child. Rise.” Death did not stop her singing, and neither would it stop mine. I hold within me now, on this Easter morning, a risen chin and heart, resplendent in its pulsing, strident in its song. 

When the bows pulled across the strings and the breath moved through the valves, those wooden and steel instruments of God rang out like bells on Christmas day. Guided by steady hands and pursed lips, a great hope rested near chins that could take the punch of the world and not go down. In service to the will of the ones who dare to play them, those strings and woodwinds cry out to the places that most need to hear their sound. Something is being born. Something has risen. A great light breaks forth from the darkness, like a thousand summer suns.  

*Luke 24:1-12                                                 

–Jim Marsh, Jr.,  Bread of Life Church

My friend is trapped in Caregiver’s Hell. (My words, not his.) His wife – and his own life – are in a downward spiral that he feels helpless to stop. After two strokes and a fall that broke her leg, she now requires a heart specialist, an orthopedist, an intestinal tract doctor, and now a neurologist for possible Parkinson’s disease. She needs every one. Despite physical therapy she is growing weaker and less able to walk. She can’t be left alone.

Her husband loves her and will never abandon her. But he longs to have her back, healthy and whole. Their old life is gone, probably forever.

I turn on the news and am stricken by the devastation in Ukraine. Terrified children cling to their mothers, fleeing from the bombs with nothing, not knowing where they’ll be tomorrow or whether they’ll ever see  their husbands and fathers again. 

President Zelensky is vastly outnumbered but not defeated. His courage inspires the whole Western world.

Such pain is hard to bear, even to watch. And yet… my friend, and Ukrainians, persist. 

Where do the caregivers – my friend, the mothers, President Zelensky – find the strength to carry on when all options have expired?

It has to come from within.

I recently stumbled on a dog-eared copy of An Interrupted Life, the diaries of Etty Hillesum. Etty was a smart and popular young woman studying Jungian therapy in Amsterdam with a man she fell in love with. She already had degrees in law and Slavic languages and hoped to become a writer. She was a Jew. 

Etty’s diaries begin in 1941 and end in 1943 when she perished in Auschwitz. Her story is heartbreaking. But it’s also heart lifting. And right now very, very relevant.

Etty is clear-eyed. She sees the horror and knows she and her parents will probably die. And yet she finds life beautiful and worth living. She refuses to hate, to succumb to fear, or to hide, though her friends beg her to. (I suspect she might have chosen differently about hiding if she’d had children to protect.) 

She becomes “the thinking heart” of Westerborg, the camp to which Dutch Jews awaited their turn for transport to the extermination centers. She loves and serves and comforts her fellow prisoners. She learns to be at peace with what is. As she leaves for Auschwitz in a jammed cattle car, Etty flings a postcard through broken slats, addressed to her friends in Amsterdam. A farmer found it and mailed it. It read, “We left the camp singing.”

Singing. How could this be possible? 

Etty had never been religious in any conventional sense. But one day, overcome by despair, she fell to her knees and found herself praying. When there was nothing left to go on, she discovered “a deep well inside,” a presence she began to call “God.”

I once heard Gordon Cosby, a minister, describe a type of prayer he called “centering.” You sit in silence and “go inward” as a form of prayer. Try to get in touch with your deepest self. Gordon said, “If you don’t believe in God, call it Love, or Humanity, or whatever is at your core.” Your deepest value may be your integrity in keeping marriage vows, “in sickness and in health.”

Etty’s God was not omnipotent; her God was vulnerable, but always present. From the first time she fell on her knees, she never felt alone. She took great comfort in what we might think of as deep friendship, a partnership. She and God would rely on each other. She wrote, “If God does not help me to go on, then I shall have to help God.” (173). 

She began what we might call spiritual practices. She read the Psalms and the book of Matthew. (And Rilke and Dostoevsky.) She sat in silence. She wrote in her diary, sometimes to God. All that really mattered, she said, is “that we safeguard that little piece of You, God, in ourselves.” (178)

Her duty, as she saw it was “to keep the spark of life inside me ablaze.” (186) Her own spiritual growth enabled her to be at peace, to encourage others, to continue to see the beauty of the world, even if she has to admire blue sky from behind barbed wire. Even when exhausted or hungry or sick, she was filled with love.

You and I may never be called on to endure such mass horror, but bad things do happen to good people every day. A spouse gets ALS. Alzheimer’s steals a loved one’s memory and eventually their personality. Or we ourselves may be diagnosed with a fatal illness. Old age can be tough. Learning to bear hopeless things is the common lot of our human condition.

We’ve all been inspired by the “heart,” the inner strength of President Zelensky and so many Ukrainians who stay to fight. Or those who endure trips into an unknown future, with nothing but their children. Again and again we hear, “We’re not afraid. This is our land. We will be back.” Or “We will never give up.”

Whether we call it God or “heart” or something else, when we’re at the end of our tether – in silence or meditation or prayer or journaling we can find a hidden resource in our own deepest core. It can become our source of hope and joy: “to keep the spark of life inside each of us ablaze.”

I’ve been reading Gilead by Marilynne Robinson. She really nails old age – in a realistic and positive way. She was 60 in 2004 when the book was first published, neither old nor young. 

The narrator, a minister named John Ames, is in his late 70’s writing a letter to his young son, whom he knows he won’t get to see grow up. John has a bad heart. He’s reviewing his past for his son and wondering what to expect in the next stage of existence. He believes in heaven but freely admits he doesn’t know what it will be like.

I’m older than John Ames. Like him, I love the beauty and wonder of this world. Though I’m in good health I’m aware, like him, of life’s fragility. My existential question is different from John’s. It’s this: How can I live in the present moment in a way that feels loving to others, that makes the world better for my having been here, and pleases God? 

Another way of asking the question is, “What am I called to now?” Covid has shut many doors, but others are opening:  

–The imminent birth of a great-grandson, my first male descendant after nine girls. The last male born on my side of the family was my father in 1907. This is a BIG event!

–Supporting (with money and mentoring) a college student whose parents came from Africa. I love getting to know her better.

–An invitation to run one or two workshops at a regional denominational church conference in October.

–Finding a new way to use some wonderful interviews I did with people who’ve reinvented themselves in ways that contribute to the lives of others. The book I planned didn’t find a publisher, but the raw material is rich.

— With my husband Jim, using our life experiences to accompany patients and their families as hospice-volunteer “caring companions” to those who request one. Some will be solo agers, homeless people, or prisoners. We’ve been accepted and are waiting for Covid to lift so we can begin.

Old age is not a time to quit. It can be a time of growth. I can’t do everything, but I can do something meaningful. And loving.

At whatever age you are right now, what is your call?

“Is there such a thing as psychic exhaustion?” a friend I’ll call Shelley asks. She’s caring for a husband who suffered a stroke. He keeps falling. He’s depressed and angry. She’s having to do all the work they both once did. She sleeps as fitfully as a new mom, listening for him to try to get up, so she can rush to help before he falls again.

His condition is not improving. 

Shelley’s love and loyalty are real. So is her pain. Dwindling hope takes a toll, emotionally and spiritually. Resentment creeps in. Then she feels guilty.

I understand. I loved my parents and took care of Dad until he died. I loved my husband Jerry deeply for 56 years. I don’t regret a single day of caring for him at home. But when he passed after two years of increasingly demanding needs, I wondered if there was such a thing as Caregiver PTSD. 

Sure enough, it’s a real thing. Read about it here. Six years later I still have flashbacks and bad dreams.

Other friends have borne far more than I. One cares for a husband who lost both legs to amputation after a series of strokes and infections. He can’t sit up, talk, or feed himself. Three people I know tended to spouses with ALS.

Suggestions are plentiful but often unhelpful:

“Make time for yourself.” Thanks. Now tell me how. 

“Get outside help.” Good idea, if you can afford the $25 an hour it’s likely to cost, with a four-hour daily minimum. Night shifts (so you can sleep) are more.

“Use your long-term care insurance.” If you have it (We did). But the first 90 days were on us. Unpaid service doesn’t count. Jerry died in the final week of his 90 days, so we paid a lot and never collected a penny.

“Seek help from family members.” This would be a natural, but it assumes family members are willing or able to help. Either because of geography or lack of desire, they may be scarce. 

“Can’t you use assisted living?” In some areas the costs exceed $100,000 a year. Medicare doesn’t cover. Medicaid will pay after patients completely impoverish themselves by private pay care. And… the patient may resist leaving home.

What does help:

A support group led by a trained counselor. I attended one at Iona Senior Center in Washington, DC. for caregivers and patients with dementia. After an icebreaker together, the caregivers went with one counselor, the patients with another. My group included spouses and adult children caring for aging parents. People felt safe to let it all hang out – the darkness and the light. You felt heard and understood. Not judged.

A new story. My mother had Alzheimers and my Dad, who cared for her, had 4^th stage prostate cancer. When he fell and I had to fly to Florida, Jerry and I insisted they move in with us. My American friends said things like, “Are you sure you want to do that? Maybe you could rent them an apartment nearby?” 

But my Latina and Ethiopian friends all said, “Oh, you’re so lucky! I wish I could do that!” Some shed tears. It helped me see how I was culturally biased toward rugged individualism. I told myself a new story. 

Community. Let friends, neighbors, people in groups you belong to know your needs when they ask. Caregiving can be lonely and hard. This is not the place for a stiff upper lip. People often really want to help. Let them.

Faith, if you have it. “Jeanine,” an Iona group member who attends daily mass, said, “I’m peaceful. This is what God has called me to right now.” Margaret Hodge, an 80-something evangelical Christian in Oklahoma and an ALS spouse, was preparing her husband’s funeral when she received word that her grandson was struck by a train and was in a vegetative state. As soon as the funeral ended she drove to Tennessee to help with his care. Back home, she has opened her home to children, college students, and foreign young people. Giving herself is part of her faith.

I invite your stories of surviving caregiving and dealing with its inevitable aftermath.

Like many of my fellow Americans, I’ve been deeply moved this month by so many stories and photos and interviews recalling the terrorist attacks on our country twenty years ago. But perhaps what moved me most – to my own surprise and wonder – was the speech by former President George W. Bush at Shanksville, Pennsylvania. You can read it here. 

He praised the courage of passengers and crew on Flight 93, who brought the hijacked airplane down, losing their own lives but saving the terrorists’ probable intended target, the United States Capitol.

President Bush was eloquent. His language was often lyrical, always tough and true. “The world was loud with carnage and sirens, and then quiet with missing voices that would never be heard again.” He spoke of horror – “the audacity of evil” – and “the solidarity of grief and grace” rising to face “the brute randomness of death.”

Other speakers praised the bravery of first responders who died saving people in the towers. The day was thick with grief – we heard stories of widows and their children who grew up without a father. Survivors still wonder why they escaped and friends were lost. But no one else I heard dared to address the spiritual challenges raised by so much pain. President Bush did.

He acknowledged there is no simple explanation for unearned suffering. “All that many could hear was God’s terrible silence.” He didn’t offer an explanation or solution. Then this: “But comfort can come from a different sort of knowledge. After wandering long and lost in the dark, many have found they were actually walking, step by step, toward grace.”

A cynic could say, “He has a good speech writer.” Yes, but Bush has a reputation for telling his speechwriters what he wants to say. These remarks seem too personal, vulnerable even, not to have come from the speaker’s own tough conversation with his Maker. And I suspect it’s still going on.