|
Getting your Trinity Audio player ready...
|
When her husband, Bob, was diagnosed with mixed dementia, including Alzheimer’s disease, in 2012, Lena Chow Kuhar drew on her scientific background and medical connections to determine the best way to care for him.
After he died in 2018, the Palo Alto resident gathered some of the lessons she learned to create the podcast “Bob’s Last Marathon,” which focuses on the seven years she spent caring for the man she had first come to know through their mutual interest in long-distance running.
“I thought the knowledge might be something I could share,” she said in a recent interview. “At the beginning of Bob’s illness, I didn’t know what to do and it took me quite a while to put all this together. I thought, ‘What if somebody doesn’t have access to this information? How long would it take them to find it?'”
Kuhar, who for decades ran her own advertising agency representing biotech and health care companies, said because her communications business leaned toward science and biotechnology, she was trained to look for information and that helped her when they got the diagnosis.
“I wanted to put something out there that’s easy to access and simple,” she explained.
Kuhar posted the first of her ongoing weekly podcast episodes at bobsmarathon.org on Jan. 13.
In the podcast, Kuhar talks about how she decided soon after her husband’s diagnosis that her key focus needed to be on supporting his quality of life rather than seeking a cure.
“We learned — and it’s still true today — that there’s no cure for Alzheimer’s,” she said. “Drugs can slow the disease in some cases, but it doesn’t last, so drugs are a very small piece of it.
“Most of my energy, and the message I want to bring to the audience, is to focus on the quality of life, because we’re not going to get a cure in our lifetime. So, take the medication, but also focus on diet, exercise, social interaction and cognitive therapeutics.”
The Kuhars already were eating a lot of fish and vegetables so it wasn’t a big leap for them to cook with fruits, vegetables, whole grains and lean protein — the staples of the Mediterranean diet Bob’s doctors recommended.
As time went on, Lena Chow Kuhar took charge of her husband’s multiple medications, including two for Alzheimer’s, to ensure that he took them as instructed and that refills were ordered in time.
She hired a helper to come to the house and work with him on cognitive exercises and games.
The Kuhars long had been passionate exercisers — they first got to know each other in a lunchtime running group at the pharmaceutical company where they both worked — and Bob was still running at the time of his diagnosis at age 76.
“As he became less mobile, I realized we needed to make an extra effort to exercise,” Kuhar said. “We were running, then walking and then he became wheelchair-bound, but there was always getting up from the wheelchair and shooting hoops or doing weights.”
A trainer friend came over twice a week to keep Bob moving.
“The day before he passed away, Bob was doing hand weights in his wheelchair — by that time he was no longer able to walk on his own,” Kuhar said. “I found it comforting to feel his strong grip and to see the inevitable smile when he was up and about, exercising at the level that he could.”
Kuhar enrolled her husband in the adult day program at Rosener House in Menlo Park, where he benefited from the social contact, she said. “At the beginning, he’d be hanging out by the coffee pot, talking with other people. He enjoyed the current events discussions.
“He did what he was able and, as his abilities declined, he was more observing, watching and enjoying, but that was also a very rich experience.”
In different episodes, Kuhar draws on an array of top Alzheimer’s experts as well as people with firsthand experience as caregivers. In one episode titled “Friends,” she discusses ways that friends can support families caring for someone with dementia.
Based on her caregiving experience, Kuhar is keeping her podcast episodes short — about 10 minutes per week — and offering transcripts as well as audio. “People caring for someone with dementia and Alzheimer’s don’t have much time,” she said. “Also, there’s a generation — actually my generation — who are not that much into podcasts, so they can read a transcript.”
For more information, go to bobsmarathon.com.
