Certainly for the last decade or two, we’re hearing much more about—and seeing those afflicted with—dementia. This is due largely to our lengthening lifespans, the work retirements of the Baby Boomer generation and the general lack of comprehensive healthcare unique to the United States.
Most are familiar with Alzheimer’s disease, which is dementia’s most common form. If you’re of a certain age (i.e., the widening middle years), you might be dealing with parents suffering from dementia. My sisters and I are heading through that journey right now with my father. And, it’s not our first trip to the rodeo, as the saying goes. We witnessed our maternal grandfather succumb to it about 30 years ago. And it’s touched our lives through in-laws and friends as the years have ticked by, including the cruelest (if there is such a ranking): early onset. But, as things go with immediate family, these issues often have a more immediate effect.
The experience also leads to internal doomscrolling. A forgotten word or name, a memory fading, and one can’t help but wonder if genetics or the accumulated concussions, beverages and other “experiences” have finally caught up. (Fortunately, a good night’s sleep usually clears a case of the stupids—for now.)
While educational resources have increased for those in non-professional caregiving roles (i.e., family), many gaps remain to be filled. I read recently a book that might help—a memoir by Tom Eckhardt called “Love and Dementia, Grief and Recovery: My Life with Judy.”
Back in March, I saw the book on a shelf behind the author while he was seated at his desk, plugging numbers into a computer keyboard—Eckhardt is often the accountant who works with me at the firm that handles my annual taxes. After the tax meeting was completed, I asked, nodding toward the book behind him, “You write a book?”
“I did,” he answered, and we talked a bit about it. I asked him for a copy, and informed him my family was walking down that path with our father. “I’m sorry to hear that,” he said, while signing the title page, adding that he wrote the book not just to tell the story, but maybe to bring a bit of help to those managing similar circumstances.
It’s an interesting story, adding a twist only recently being showcased with more frequency in popular culture: the “later-in-life” relationship. The book tells the story of Eckhardt’s romance with Judy—he was 60 and she was 73 when they met. The story follows from first sighting to marriage and their life and travels for the first few years before Judy began exhibiting signs of dementia, and continues with his caregiving efforts, both at home and, eventually, Judy’s long-term care at a memory-care facility. It was a span of about 12 years, beginning in 2011, and ending in January of 2023. Judy’s first signs of dementia were in 2016. Part of the story’s power is that of how so much happiness could be found, and how fleeting it can be. More powerful, though, is Eckhardt’s effective telling of how love between to people can pierce even the fog of dementia.
Eckhardt’s laconic style (the book is an efficient 107 pages) does not detract from the book’s effectiveness. In fact, it adds to it. If one is dealing with a similar situation, one can get through this book and gather its message (case in point, I suggested this to my father’s wife; she read it and, despite its story of decline difficult, found it very helpful). Eckhardt deftly captures the emotional and physical toll dementia extracts not only from the person afflicted, but everyone in their orbit—most notably a spouse. He gives permission to feel the pain and, at times, futility, as a caregiver, and to acknowledge a caregiver must make the effort to care for themselves.
The story is broken into four chapters, the first being how the couple met. The second chapter is the bulk of the book, and is divided into sections, the first seven going from diagnosis to long-term care. The eighth section is the words of Judy herself—journal entries from 2016 until she stopped writing entirely. These selected entries, while brief, show someone who was by nature a verbal person, lose this ability—and she’s fully aware of the decline at the start. Still, they are valuable and sweet—her love for Eckhardt is deep and expressed in the pages right up until she couldn’t. I can only imagine how heartening this was for the author when he read these entries after her passing (she left the journals for him), despite his knowing this from her expressions and hand-holding when she was unable to express herself verbally.
Chapter four dives into Eckhardt’s grief and the depression he suffered, and the fourth, recovery. Within all these chapters are practical lessons, from adult “daycare” (not a pejorative; it’s a matter of safety and vital stimulation) and when it’s time for a caregiver to acknowledge that professional help is required, and that a caregiver often needs to seek mental-health help for themselves. I took many lessons from this short book, among them the stages one can expect as dementia inevitably advances.
While this is a story of navigating—and, for a caregiver/spouse, surviving—dementia, this is also a love story, one that, as Eckhardt describes many times in the book, endured through the most difficult hardship.
Visit Eckhardt’s website at https://www.tomeckhardt.com to purchase the book.