Caregiving Is a Family Matter

Tony was never far from a book. Much of his adult life was built around learning, and then teaching: first at Stanford where he was finishing his doctoral degree and then crisscrossing the country in pursuit of providing knowledge to others. His life was the recipe for an academic:  intelligent, serious and compassionate about ideas. It is no wonder that Tony, who in the mid-1970s as director of a national center for bilingual education training, mentored the girl he would marry. Miriam was a teacher and administrator when she accepted a job in the program, and a year later he asked her out on a date. Soon after, the program lost its funding and Tony fired her, and soon after married her, and encouraged her to pursue her own doctoral degree, which she did.

The couple would have one child, and she would grow up also knowing that she was destined for a rich intellectual life and advanced degrees. Andrea loved her father – his quietness, his encouragement, his passion for motivating his graduate students, the way he’d conceptualize big thoughts and deliver them at the family dinner table. She says that she was 24-years old before she finally understood many of his conceptual and abstract ideas about life.

Then, the academic began talking to strangers, reaching out to touch the fabric of a shirt that belonged to someone else. He was missing appointments. Strange magazines began arriving in the family mailbox. He seemed agitated and would work himself into an aggressiveness the wife and daughter had never seen. Once, Miriam was trying to explain something, and he took a finger and poked her in the chest. Squirrels became cats in the yard out back. He began speaking in puns. For a while, when he’d hear someone say the word funny, he would ask: Is that funny or crazy? The quiet intellect who had built and used an extensive vocabulary was forgetting words. He was forgetting himself.

That was ten years ago. Tony had spoken about retiring at 70, but it became clear that the academic doors would close five years sooner. In early retirement, the couple hiked and walked and even took up painting. But Tony was disappearing, fast. It took three more years before doctors even diagnosed Tony with behavioral variant frontotemporal dementia and later a semantic variant of FTD. By then, he was barely talking. Miriam had retired years earlier to take care of him at home, and at one point their daughter, fresh out of graduate school with a boyfriend in tow, moved back to help care for him. At dinner, Tony would glare at the new guy at the table. He seemed paranoid and angry. The guy, now his son-in-law, never got to know the husband and father who enriched the world with his intellect and service to others. He is an integral and compassionate member of his caretaking team.

“Caregiving is a family matter,” says their daughter, now 36. He continues to live at home. Tony’s early agitated and aggressive behavior led to his ousting from a day care center. Seven years ago, Miriam found another program willing to take a risk on behavioral issues and he’s been there ever since. He is now non-verbal and the aggression has melded into calmness.

Frontotemporal dementia is more common that people realize. There are some estimates that about 15 percent of people diagnosed with Alzheimer’s disease have FTD. Behavior and language and what we learn about the social world around us is governed by the areas in the frontal part of the brain. Along the way to an accurate diagnosis, a neurologist told the family that Tony had Alzheimer’s. Miriam found research studies about FTD and felt the symptoms mirrored what was going on with her husband. “That’s just research,” the neurologist said, shrugging his shoulders. The doctor also started Tony on a medication that would not have worked, and didn’t. The advice was that there is nothing more that can be done for him. “It was very fatalistic and jarring,” she says today. “That was nine years ago, and there has been a lot more we have been able to do.”

In 2008, Miriam took part in an AD class and heard another caregiver talk about some of the bizarre behaviors that her husband was doing. That’s Tony, she thought. The next day she made an appointment at the UCSF Memory and Aging Center, and they have been part of the research program ever since. The family has learned a lot about what it takes to care for someone with FTD. They now have two caretakers to help on the home front so Tony can be safe and Miriam can take care of him and still get the exercise and rest she needs to be the competent organizer she has always been.

She misses the man she fell in love with 40 years ago. In addition to behavioral changes, he is now incontinent and has chewing and swallowing problems. His skin is dry and blotchy. He consumes things that are not meant to be eaten. But she still sees flashes of the man he was: sometimes, he’ll reach down and put on his own shoes. He pulls down his shirt to maintain a sense of privacy when being assisted in the bathroom. His daughter is also an integral part of caretaking – for her father and her mother. On the weekends, she often treats her mother to a spa day. And she has learned a thing or two about life: Enjoy the moment. Be grateful for what you have. Choose joy over sadness.

They have been creative in trying to reach the man they love. They brought a drummer into the home for weekly jam sessions. Music calmed him. They attend FTD support group for caretakers, led by Robin Ketelle.

The mother and daughter have found solace in sharing their story and helping others whose loved ones have frontotemporal dementia. The family has also developed strong relationships with the team at the Memory and Aging Center. There, Miriam has learned new ways to communicate with – and continue to love – the man who no longer has words in this world. They still have moments of connectedness. Tony’s wife smiles, recalling the powerful intellect lost to this disease: “We still are learning as we go.”

 

Jamie Talan is an Atlantic Fellow at the Global Brain Health Institute, a collaboration between University of California, San Francisco and Trinity College in Dublin. She will be spending several months at UCSF’s Memory and Aging Center writing about the inner workings of the brain and giving voice to patients and the doctors, nurses, psychologists, geneticists and researchers involved in building the foundation for a whole body of non-Alzheimer dementias that are often missed, lost or ignored.