It was supposed to be paradisiacal.
You’d planned it that way, in fact: the two of you, retired, with time aplenty to travel, explore, garden, enjoy yourselves. It was supposed to be good — until one of you got sick and the other’s now a caregiver, a journey you never wanted or expected but, there you are. In the new book “No Saints Around Here” by Susan Allen Toth, you’ll see that you’re not alone.
There were 15 years between Susan Allen Toth and her husband, James.
That’s not a lot of difference in age, really. It’s certainly not enough to make anyone fret about a future full of health issues, but that’s what arrived: while in his mid-70s, James was diagnosed with Parkinson’s disease.
“Parkie,” as they called it faux-casually, was initially mild; James was a little clumsy and had slight tremors, and they dealt with it. But then, his symptoms worsened: memory loss, slowness, dementia. Toth became a spousal caregiver, a member of an “ever-expanding club without borders. ”
In her quest for books on the subject, Toth discovered that few authors write “from the front lines.” Nothing, for instance, indicated that she’d have to floss James’s teeth. She wasn’t prepared for “absurdities” of life with an ill husband or round-the-clock strangers ministering care. She was surprised at friendships that fell away, and how new “webs” knit themselves in help.
She began journaling and, in her entries, the word “time” crops up repeatedly — mostly, because there was never enough. Not enough time for herself (although, with paid help, she was sometimes able to sneak away to their Wisconsin cabin), not enough for day-to-day chores, and not enough time with James.
“It is a terrible loss,” she said of no longer being able to “slip into his bed.” She never expected to have to know about incontinence care, “beige lies,” or nursing homes (she kept James at home until the end). Snappiness wasn’t her normal mien, but it happened. There was a “last Christmas” and a pleasant surprise that accompanied hospice care.
And, says Toth, through it all, “I did the best I could.”
Pick up “No Saints around Here” and you’ll notice something: holding it in your hands is like grasping a half-pound of pure ache.
The truth, beautifully and brutally in real-time, is what author Susan Allen Toth offers her readers, with entries that span the 18 months before James died. Toth writes about hands-on caretaking, but she also touches upon relief, guilt, self-care, anger, and the whole life-dwindling that comes with progressive illness. That bluntness and raw honesty may shock some readers and it may make you gasp at its audacity.
Then again, if you do, maybe this isn’t your book. Toth’s words will give comfort to newly minted caregivers who aren’t sure what’s next, who aren’t sure what to do, who don’t know what “normal” is anymore. This is a book for those men and women, spouses and children. If that’s you, “No Saints Around Here” may be heaven-sent.
“No Saints Around Here: A Caregiver’s Days,” by Susan Allen Toth, copyright 2014 by University of Minnesota Press, is 215 pages and sell for $16.95.
Contact book reviewer Terri Schlichenmeyer at www.bookwormsez.com or at firstname.lastname@example.org.