Imagine suddenly learning you have to give up a career you love--a profession you have spent a lifetime building that has become a major part of your identity. Not in a few years or months or even days, but right now, this moment, someone else has to cover your appointments for the rest of the day, and forever
This shattering reality is what Renee Harmon, MD saw her husband and practice partner Harvey Harmon, MD facing the day he received the diagnosis of early onset Alzheimer's disease.
"When I noticed memory lapses, I started looking for guidance on how to handle the situation if it became a serious problem" Harmon said. "Most of what I found online about physician impairment related to drugs and alcohol. So I contacted the medical board to ask questions and started working on strategies to gradually phase Harvey out of the practice if his symptoms progressed. But the day the neuropsychologist confirmed the diagnosis, when I called the board they said he had to stop treating patients immediately. The liability was too great.
"They said we had to go into his office and stop him from seeing patients. Harvey and I instantly went from sharing a family medicine practice and home responsibilities like taking care of our daughters to me working full time and covering the entire practice, being the primary parent and seeing that Harvey got the care he needed."
Although the diagnosis came when the disease was in its earliest stages and symptoms were still relatively mild, Harvey was unable to use his medical skills, even as a volunteer.
"When people at church asked him for advice about health problems as friends tend to do, I had to hold my breath," Harmon said. "The risk that could result from him forgetting a detail or getting it wrong was too much. So he had to completely give up being a doctor and start filling his days gardening and finding other meaningful things to do."
The abrupt transition was difficult for both Harvey and Renee, who was working long hours trying to keep the practice going while at the same time dealing with the emotional impact of what such a devastating, rapidly progressing disease would mean to the people she loved.
"We had been together since we met in college at Birmingham Southern and went to the University of Alabama in Birmingham School of Medicine and then through our residencies at the Medical College of South Carolina," Harmon said. "Now a disease was separating us one day at a time.
"I started journaling as a way of coping and solace for all I was feeling. When the Alzheimer's Association asked me to speak about our experiences as physicians dealing with the same challenges facing other families with an Alzheimer's diagnosis, I realized those journals contained a lot of information that could be helpful. So I started developing the material into a book."
The book, Surfing the Waves of Alzheimer's: Principles of Caregiving That Kept Me Upright, has just been published and can be ordered through most bookstores and through ReneeHarmon.com. The site also has a link to Harmon's blog, which features topics related to Alzheimer's disease from the dual perspective of someone who is both a physician and family member.
Instead of being a simple narrative memoir, the book, organized by topic, with each chapter focusing on a principle that helped the Harmons make their way through a difficult time.
"Harvey was only 50 when he was diagnosed," Harmon said. "Early onset Alzheimer's tends to progress quickly, but we were fortunate that for the first two years he was still well enough to stay at home on his own and do some of the things he enjoyed. His diagnosis came very early, before most people had noticed symptoms. When we called a staff meeting the day the diagnosis was confirmed, most seemed stunned because they hadn't realized anything was wrong.
"At first, you might think it could just be stress, but then we went on vacation to Costa Rica. In an unfamiliar place, it became increasingly obvious that something was wrong. He forgot the instructions the guide told him about zip lining and couldn't remember how to get around. He became lost and we had to search to find him. That's when he agreed to have a neurological assessment.
"The third and fourth year the disease was progressing, so we had to have a care giver staying with him. In the fifth and sixth year, the decline continued, and then in his last two years, he had reached the point that he needed the more specialized care of an Alzheimer's unit.
"Even when most of his other memories had gone, he remembered that we had a special relationship. We would sit together, side by side. One memory that makes me smile is him looking at me, smiling and leaning over to form a circle around a ring finger and saying, 'Do you think we ought to--?'
"Get married?" I said. "We are married."
"Good," he said.
"It made him happy knowing that, and it made me happy knowing that after all the years we had been together, and all he had been through, he still loved me and wanted to be married to me."