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Home Health Blog

To Have and to Hold On: Caregiver’s Memoir of Keeping Husband at Home

Posted by Carolyn Harmer on May 30, 2015 10:15:00 AM

Book of the Month: June 2015

Our June book is a diary-style account of a man with Parkinson’s disease, and the spouse determined to care for him at home for as long as possible.The majority of Americans say they would prefer to die at home, but honoring this request can be difficult. Some progressive diseases require extraordinary amounts of hands-on care, which may grow to be more than a patient’s caregivers can provide. This doesn’t stop people from doing all they can to keep their loved one safe at home, and close at hand, for as long as possible. In fact, this conviction is the basis of our book selection for June.

Author Susan Allen Toth was doing less writing and more caregiving for her husband, James, as his Parkinson’s disease progressed and related dementia began to develop. She tried to turn to books for guidance — books on his disease, books on caregiving — but the ones she found seemed to be written after the fact, in wistful hindsight. None of them spoke to her in-the-moment exhaustion and feelings of frustration, guilt, and loathing of tasks as inane as teeth brushing. So she decided to write that book herself, warts and all.

The majority of No Saints around Here is a series of short chapters, presented in sequential order much like a diary. The context is covered in Toth’s long introduction: James’s many good years of slow progression after his diagnosis, his three years of real struggle and more rapid decline, and his nine months in hospice care. The author acknowledges that their story was a charmed one — they were fortunate to afford part-time private duty care by home aides for an extended period. Then, just as Toth admitted to herself that she could no longer keep up with James’s care at home, he developed pneumonia and passed away scarcely a day later.

But the bulk of the book follows Toth’s stream of consciousness, released of the knowledge of how much longer she has with James, and unsure how much longer she’ll be expected to keep up the high-wire act of being the primary caregiver to someone needing almost constant assistance. The pieces are encapsulated nuggets, some as short as a few pages, on whatever topic was at the front of her mind that day. An essay on the wormhole of frivolous online shopping resonates with the caregiver’s underlying need for self-preservation. Other chapters dwell on her frustration, especially with herself when she loses patience or makes a mistake — presented without excuses or sugar-coating.

Toth freely admits to her advantages in caring for James. But although the experience of staying at home through the end may not be universal, the emotions that accompany the caregiving journey — including helplessness, isolation, self-doubt, exhaustion, and stress — can strike a chord with anyone who has given of themselves out of love.

No Saints around Here: A Caregiver’s Days
Susan Allen Toth
University of Minnesota Press
256 pages, $16.95

Topics: Private Duty Care, Hospice, Dementia, Parkinson's Disease, Caregiving, Recommended Reading