Erin Comarade describes what it's like to care for a spouse with dementia and what others should know about advocating for their loved one.
Dementia is being diagnosed more and more in younger people — in their 50s and 60s. Erin Camarade knows all too well what this alarming shift feels like. Her husband, Brian, was diagnosed just in November with atypical dementia, which makes your loved one have an entirely different personality seemingly out of the blue.
Erin talked to Dr. Oz about what it's like living this new life with Brian and what she wants others to know about recognizing the signs of dementia in a spouse.
Erin said that she and Brian saw countless doctors to determine what was going wrong with his health. Over time, his speech got worse and he even lost his job. It wasn't until Brian received a spinal tap that doctors said the word "dementia."
I just sat there and silently cried. I didn't want Brian to see me cry, we were in there together, because I didn't want to upset him. But I kind of already knew."
Brian's doctor determined his dementia was genetic, caused by the GRN gene. By now, Erin said, he needs constant supervision.
"If I get a shower in, I'm lucky. I always make sure my teeth are brushed, but the shower is sometimes every other day. It just depends on the day, because every day is different than the day before. Like, whatever Brian's symptoms are or his new change in behavior or something — I feel like I always have to be prepared for the unexpected," Erin told Dr. Oz.
As she settles into her new role of caring for a spouse with dementia, she has found much-needed support for herself.
"I'm in therapy, and that's been great. We moved back to New Orleans to be with family, and to be honest, that's the smartest thing we've done because Brian needs 24/7 supervision. And I also rely on support groups online. Other people with loved ones with dementia," Erin said.
If you or someone you know is caring for a spouse with dementia, Erin has advice for you. Here's the most important thing she wants you to know:
"Be proactive and intervene. At first, Brian didn't recognize the signs of what was happening. But I did. I think as a spouse or a family member, you can tell when something is off. Make sure you get involved early, get those doctors' appointments. Be an advocate. I think it would have been a lot worse if we would have waited another six months or a year. Knowledge is power," she said.