This is one of the most beautiful books about caregiving that I’ve ever read.

It goes without saying that any book by Diane Ackerman is going to be beautifully-written. She is, after all, a poet and knows how to use words. What impresses me is her ability to use them in prose, as well as poetry. She has a poet’s senses of seeing, hearing, smelling, feeling and is so aware of herself and her emotions and thoughts – and she is able to put them down on paper. If I made a devil’s bargain, it would be to have her talent for conjuring through words.

I came to this book at a time just before my mother and father both required caregiving. Divorced and living on opposite ends of the country, my father with Parkinson’s, my mother with what I would call a increasing failure to thrive, they both needed full-time care within 10 years of my reading this book. My father’s wife provided that care until it became too much even for her, then he moved into a really good care facility, where she visited him through screens and windows during pandemic lockdown.

My mother, who had moved near my sister, experienced a series of falls that could have been related to her AFIB or to her pulmonary fibrosis – or possibly to the improperly installed gas hot water heater that vented under her bedroom and that we didn’t discover until we put the house on the market after she died. She fell, injured her head, refused to do physical therapy or use a walker while she recovered, fell again, fell once more getting up in the middle of the night to use the bathroom, fell in a cafe. My sister ended up managing her care, with a rotating crew of caregivers.

Within a couple of years, Mom settled into a routine of falling regularly and ending up in the hospital. Her small-town doctor and the horrible Catholic hospital where she kept ending up didn’t have a clue. Women in my family are fallers, so maybe that was it. Exhausted by the hospital’s impatience with her – they encouraged her to sign a DNR on her first visit – my mother opted for at home hospice. And, relieved at the thought she’d never have to go back to that horrible hospital, and buoyed by all the in-home care visits, thrived for two years. Her health steadily improved until a bureaucrat determined that if she had lasted two years, she wasn’t eligible for hospice and kicked her off. With no palliative care options locally, Mom quickly declined and ended up dying the horrible hospital death that she so wanted to avoid.

I read this book, not because it was about caregiving, but because it was by Diane Ackerman. It came to me before things had gotten too bad with my parents – we were only just embarking on a journey that lasted, on one hand, excruciatingly long and, on the other hand, ended far too soon. Death is never timed right.

In this book, Ackerman tells the story of love, her love with and of her generationally-older husband during a devastating illness¹ that required her caregiving. They had already been through pacemaker surgery, a diagnosis of diabetes, blood pressure, an infection in his leg, and an earlier stroke scare. When kidney stones hit – followed by a staph infection – they had their routine down. Ackerman, having made his hospital room as comfortable as possible, quietly edited her work at his bedside. Just another routine day on the road to recovery, counting down to returning home. And then he returns from a trip to the bathroom and doesn’t seem right. She recognizes the symptoms from an earlier episode: he’s having a stroke.

Her husband, a poet himself, a man of words, cannot express himself, cannot communicate. Ackerman, who writes so poignantly of the natural world, uses that gift her to describe her panic response to the diagnosis, her worry that he will lose memories precious to him, to them; he could lose his ability to command words. They had known each other since she was a sophomore in college and he, her professor. There was, perhaps, an element of hero worship, of this man who had inspired her, accompanied her, who shared her joy in words so well. And now the stroke has damaged the part of his brain that masters language.

The book details her attempts to communicate with him, at first unsuccessfully and then, miraculously, as he started to recover, through gradual improvement. That he did recover is apparent, for she tells us what she was experiencing and what he later told her he had been seeing, hearing, feeling at the time. Her descriptions of the physical manifestations of the stroke awaken wonder of our body’s movement, muscle memory, memory, recognition.

After an extended period of recovery and physical therapy, her husband returned home. Then he started the interminable journey to learn to live with diminished physical capacity, as someone with visual gaps, who struggled with a language that he had previously commanded. She devotes herself to his recovery, applying different therapies, intuiting how to help him recover words, how to adapt his body to what it can and can no longer do. She details his anger, her patience, her impatience, their frustration. And the little moments she steals for herself – a morning walk – to maintain her grounding while caregiving. In the appendix, she details what she has learned from the experience, the lessons about caring for your own health, about caring for someone who has had a stroke, about taking breaks as a caregiver, about caregiving. We should all be so lucky to have someone so devoted to care for us when we fall ill, and to have the resources for the amazing amounts of hospital care, therapy, and caregivers that assist the Ackermans on their journey.

To say her husband had fully recovered and returned to his younger self by the end of the book would be a lie. But she ends with a line that sums up their journey together, A bell with a crack in it may not ring as clearly, but it can ring as sweetly.

I’m sorry. I loved this book so much and I don’t feel this post does the beauty of Ackerman’s writing justice.

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1. Or perhaps we should say injury, not illness. It’s easy to say injury when it happens to a shoulder or knee; or when the injury comes from without, a blow to the head, or a bite. But isn’t a heart attack or stroke a form of injury: a muscle is impaired in its ability to perform? ↩︎