How I Cope With My Husband’s Lewy Body Dementia
Key takeaways:
Diane Chew was looking forward to spending more time with Ben, her husband of 50 years, during retirement. Then doctors diagnosed him with Lewy body dementia. It turned their world upside down.
Lewy body dementia is a brain disorder that affects memory, movement, and thinking. There is no cure.
Diane is now a full-time caregiver for Ben and documents their journey on social media, where she offers tips, advice, and support for other people caring for loved ones with dementia.
They say opposites attract, and no one knows that better than Diane Chew.
She is a 68-year-old self-professed “science nerd” and molecular biologist who led a very structured 9-to-5 corporate life working for a pharmaceutical company. She has been married for 50 years to Ben, a creative musician who preferred staying up late to write music or work in his recording studio.
“He’s so right brain, and I’m so left brain,” she says. “I would say we’re two halves of a whole.”
While they always made their opposite schedules work for them, Diane was looking forward to their retired life together in their small artsy town of New Hope, Pennsylvania. She would have more free time to spend with her night owl of a husband. In fall 2021, those dreams finally became reality.
“We started going out for lunch to little towns around here, and that Christmas we went shopping together,” she says. “It was the way I always hoped it would be.”
It wasn’t perfect, of course. Ben would sometimes ask the same question over and over again, which Diane would chalk up to his creative distractibility as an artist. Then his sleeping pattern, which had always been different because of the musician hours he kept, got thrown off to the point where he wasn’t sleeping at all. But Diane thought there was an easy explanation for that as well. Ben had been a recreational marijuana user since he was 15, and 2021 was the year he stopped cold turkey.
“I contacted a drug and alcohol therapist and said, ‘Could this be from the abrupt withdrawal [of marijuana]?’ And they were like, ‘Yes, absolutely.’”
‘He didn’t recognize me’
In spring 2022, Ben looked at her with a blank stare and said: “You can go home now.” Diane then realized there was a serious problem. “I can always remember that day,” Diane says. “He didn’t recognize me.”
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Though there was obviously something very wrong — and the episodes of Ben not recognizing Diane became more frequent — it took months of doctor appointments, phone calls with therapists, emergency room visits, and even working with a shaman once (out of desperation) for Diane to finally get a diagnosis for Ben and some clarity on next steps.
Ben had Lewy body dementia, a brain disorder where protein deposits build up in nerve cells. It affects thinking, memory, and movement. There is no cure.
“I look back,” Diane says, “and this is true for I think many people — [all] the signs were there, but you don't recognize them until you put all the pieces together.”
What can caregivers do to avoid burnout? Bring in backup support and look for resources in your area.
Where can I find caregiver support groups? Community agencies and online support groups are places to start.
Are there different types of dementia? Yes, dementia types range from Alzheimer’s to Parkinson’s to Lewy body.
Documenting vulnerable glimpses of life with dementia
After looking into various assisted living homes and other options to care for Ben, Diane decided the best course of action was to keep him in their home. They had home healthcare aides come in daily anywhere from 6 to 8 hours, most days of the week.
In January 2024, Diane also started documenting her and Ben’s journey on social media — and in 4 short months has garnered more than 100,000 followers on Instagram.
Diane offers an authentic and vulnerable glimpse into her daily life taking care of someone with Lewy body dementia. She weaves in helpful tips for other caregivers. But what’s been most surprising to her is what she’s gotten out of it herself.
“My intention when I started this [was] for me to share my journey and to share my legacy of love with my husband,” she says. But what she has found is a supportive and loving community who are going through something similar.
“These are my peeps,” she says. “[They] give me one more reason to get up in the morning.”
Tips from one caregiver to others going through it
If someone you love has been diagnosed with dementia and/or you are a caregiver, Diane offers these basic tips.
1. Don’t blame yourself
Once there’s a diagnosis of dementia, caregivers often start looking back to early warning signs and saying, “How did I miss this?”
“The guilt starts right away,” Diane says. “It’s important to remember so much of it is out of your control.” And blaming yourself doesn’t get you anywhere.
2. Listen to your gut
Before Ben’s Lewy body diagnosis, doctors kept putting him on various medications to manage dementia symptoms. But Diane says they were only making him worse. Finally, she found a neurologist who listened to her.
“He was on the phone with me for half an hour, pieced it all together, and said, ‘It sounds like Lewy body.’”
One of the hallmarks of Lewy body dementia is that medications that help other types of dementia can actually make Lewy body symptoms worse. Diane says she’s glad she listened to her instincts and kept searching for answers — and second, third, and fourth opinions.
3. Find a support group
When a loved one is diagnosed with dementia, it can be very isolating, Diane says. And people who you thought were lifelong friends may not show up the way you thought they would, because they’re scared or don’t know what to do. That’s why it’s important to seek out support — whether it’s in person or online, like Diane’s social media connections.
Knowing you’re not alone is key, Diane says. “A joy shared is doubled. And a pain shared is cut in half.”
4. Ask for help
The best caregivers need to make time to care for themselves, Diane says, and that has been one of the hardest parts for her to learn.
“I’m dysfunctionally independent,” she laughs. “I’m paying for people to come help, and I’m still running around trying to get the house ready for them. And they’ll walk in and say, ‘Diane, stop. I’ll do those dishes.’”
Let people help you, even if it’s just to do a load of laundry or sit with your loved one while you take a walk.
“And sleep!” Diane adds. “If I didn't get sleep, there is no way I could do this.”
5. Let go of expectations
Diane envisioned a very different retired life than the one she currently has, and she’s had to wade through a lot of grief letting go of that vision.
“Some days, I could hardly bear to go past a restaurant that we used to go to without being upset,” she says. ”I really had to pray consistently to see things from a different perspective.”
She had to put aside what she thought her life would look like and find joy and hope in her reality.
“In the absence of the expectations, unconditional love is there,” she says.
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