One day, as Eve Soldinger drove her father Reuben back to the memory unit of his nursing home, he asked her who had paid for the new tires he had noticed on her car.
Soldinger knew that despite his growing state of confusion and memory loss, her father continued to think of himself as a provider, and in an inspired feat of relating, she replied: “Why, you did, Dad.”
In that moment it did not matter that her words were untrue. “If this gesture would make him feel better, then it was great,” wrote Soldinger in her new book Unexpected Gifts: The Journeys with My Father’s Dementia – number one in Amazon’s new releases in aging medical conditions and diseases.
In Judaism, we are commanded to honor our father and our mother. But what does that really mean?
The Babylonian Talmud explains that it means affording our parents dignity. The Jerusalem Talmud further clarifies that it is possible to feed our parents the most delicious meal, yet fail to fulfil the mitzvah if in the process we are being rude or denigrating toward the parent.
Conversely, a person may have to ask his parent to do hard work, but if that serves to uphold the parent’s dignity, that person would inherit paradise.
Dignifying her father as he struggles with dementia is at the core of Soldinger’s book. Soldinger, an acupuncture, Medical Qi Gong, and Chinese Medicine practitioner with a national reputation, who grew up with weekly Shabbat observances, joint family prayers, and lots of Yiddish singing, describes lovingly her journey of accompanying her father through the two years of dementia.
Along the way, she offers insights that can serve individuals in similar situations as well as to enrich our national conversation about age-related mental illness.
One in every three seniors in the United States will die with a form of dementia, yet as a culture we are not well-equipped to approach issues of decline in mental functioning with grace and compassion. “We are just beginning to explore the deeper questions” about this illness, Soldinger told me. “Not the intellectual questions, but the deeper questions about how to accompany the person through that journey.”
The words “dementia” and Alzheimer’s evoke images of senility, helplessness, and irreversible degradation. The illnesses seem to render human beings somehow less human, depriving them of logic, forcing them to surrender their sovereignty to others, and reducing their lives to the most basic acts of life. And the caregivers manage that reality by focusing largely on the immediate physical, legal and financial issues that demand attention.
What Soldinger’s book does is to reject that reality and offer a radically different vision. While describing with painful honesty the devastation of watching her father lose some of his mental functions, she gently directs our attention to the functions that, in fact, augmented in the course of the disease.
She observed that even as his intellectual capacity seemed to deteriorate, his ability to express loving feelings and emotions, including for his family and others around him, increased dramatically.
In an enormously touching moment, she shares with us his personal discovery that he was beautiful. Rather than dismissing this as yet another symptom of dementia, Soldinger is awed by her father’s profound realization: “I found my heart wondering why we sometimes have to lose our minds to discover our own beauty?”
Soldinger, who has been in practice for over 30 years and treated hundreds of elderly in addition to caring for her father, is a firm believer that inner growth is possible even in the midst of dementia. And it is up to us to enable our loved ones to experience it.
It is this willingness to discern and relate to the positive and even transformative inner changes taking place behind the external façade of deterioration that makes Soldinger’s approach so different and even life-affirming. Implicit at its core is the deeper question suggested by the Talmud: Is it enough that we, as caregivers to our aging parents, provide them with food, clothing, and a roof over their heads, or is there more to it than that?
Soldinger’s unequivocal answer is that there is more. This “more” demands that we listen deeply and connect to the person’s changing internal needs. It also demands a recognition that the longing for meaning, purpose and fulfillment does not disappear even with dementia.
What that means in practice can be highly nuanced. Sometimes it may mean honoring the core parts of personality that remain unchanged.
She describes how much her father had always valued being highly organized and in charge of his surroundings. He remained so in the nursing home. “He was still interested in exerting some control over his environment,” she wrote, describing with gentle humor how her father liked to call nursing staff for meetings:
Once I heard an aide saying that Reuben had called a meeting in five minutes. Three or four people gathered in his room. His focus was limited, so he talked for five minutes, laid down the law, recommended changes, encouraged them, and ended the meeting hoping that everything would be straightened out and that things would run much better… And, God love them, the staff at this nursing home were open not just to participating, but also to committing to getting the organization on track.
Similarly, he wanted to feel in charge in his interactions with the doctors, speaking to them from a position of authority. “The first time I saw it, I flipped out,” she told me. “And then I thought: that’s the way it should be. That is what’s meaningful for him. This gives him joy and pleasure. It gives him authority, and he likes to have it.”
In other cases, “more” may mean hearing new tones in the person’s emotional scale. Soldinger describes profound moments of forgiveness that became available to her father in the course of the dementia – including a realization that the Germans who fought opposite him during World War II were just soldiers enmeshed in a war. “We really weren’t different from one another,” he told her.
The undeniable truth, she wrote, was that “he was still becoming more. He was becoming closer to his truer self.”
Soldinger’s lessons do not come pain-free. Her account is emotionally raw and honest. She describes her sense of loss, fear and anxiety as the man who had always been her foundation of security is growing increasingly weak.
And yet she learns to separate her own emotional wishes and desires from those of her father’s. Over and over, she finds herself wondering how she can best accord her father the dignity he deserves, both as her father and as a human being. Would she honor him more by correcting his misperceptions or by affirming the vision of reality in which he now dwelled? Each instance needed to be addressed separately.
The book has gifts for different readers. Some will recognize themselves and their own situations in Soldinger’s narrative and gain insights that may help them in caring for their loved ones. Professional caregivers will also likely find that it can help enhance their ability to interact with their patients.
For those who are looking for simple instructions and bullet-point “how-to” lists, the book may prove a disappointment. Far from offering easily-digestible solutions, Soldinger invites us to follow her economical yet punchy narrative and learn whatever lessons each of us is prepared to learn in the process.
“Dementia is different in everyone,” she told me in our conversation. The extent to which we succeed at honoring our parents going through the journey depends on our ability to recognize who they are, to be present with them as they go through the changes, and allow ourselves to change with them.