Every day, Carol Weisman takes to YouTube to post a short video about caring for her husband, Dr. Frank Robbins, who is believed to have Lewy body dementia and/or Parkinson’s disease.
Some days, Frank has no idea that Carol is his wife, or any recollection of her at all. Other days, he worries out loud to Carol, wondering what is going to happen to him.
(Frank needs to participate in a sleep study in order confirm the disease diagnoses, but that won’t happen until March, which was the first appointment Carol could get for him.)
“People make assumptions that I am heartbroken over this, and they’re wrong,” explained Carol, 72, who has a master’s degree in social work, authored 11 books and runs Board Builders, which works with corporations and nonprofits to boost volunteerism, fundraising and board governance.
“Of course I am not happy that my husband is having to go through this, but I really believe I can manage this. I believe it is a privilege to take care of him. I think it’s easy to take care of someone you know would take care of you if the situation was reversed.”
For a little background: Frank and Carol have been married since 1976. They met on a blind date in February that year, were engaged 21 days later and married that September. The couple has two adult sons, an adopted daughter and three grandsons, and live in the Central West End.
As Carol explains it, she and Frank each required three things of a long-term partner.
“I have a very practical heart,” she said. “I knew I wanted a husband who weighed more than I do, was monogamous and a doctor. I am one of three sisters and we all put our guys through medical school. Both my parents were doctors. It had nothing to do with money or status. It was what we knew.”
Carol says Frank had three requirements of a mate as well. “He wanted someone who would sleep with him immediately,” she said, laughing. “He wanted someone who wasn’t a nurse, though I don’t know why. And he wanted someone older. I’m three years older than Frank.”
Frank, 69, was an anesthesiologist who gave up practicing eight years ago after a condition known as MGUS (monoclonal gammopathy of undetermined significance), which he was diagnosed with in 1996, had gotten worse. The condition can attack the nerves; Frank has had four toes amputated. His hands also have been greatly affected and he doesn’t have much sensation in his lower legs.
Then, one afternoon in mid-November, Frank looked right at Carol and said, “Who are you?”
I said, “I’m your wife Carol, do you remember me?”
He said no.
Carol worried Frank had had a stroke. She contacted his doctor who told her to take Frank to the hospital. There, the neurologist asked lots of questions, including if Frank and Carol sleep together.
“I told him yes,” Carol said. “He also asked if Frank ever hit me while he was sleeping. I explained that we used to sleep (cuddling) and now I sleep at the end of the bed because sleeping with Frank these days is like sleeping with a combine and a Rockette.
“He (the neurologist) explained that the thrashing around and hitting is one of the signs of Lewy body dementia.”
Another sign is extreme fatigue. Carol says Frank often naps twice a day. He used to be an avid reader. Now he reads French poetry because poetry has no plot, and he no longer can remember what he has read moments after he reads it.
Recently, Carol began posting minute-long videos each day, figuring it was good therapy for her as well as a way to update friends and family about Frank. She approaches the videos with honesty and good humor, regularly donning a different pair of oversized glasses that would make Elton John jealous.
Graciously, she has agreed to allow the Jewish Light to host her daily video blog in the hopes that a wider audience might find them helpful. You can watch her recent videos on her YouTube channel or a few of her recent videos below: