Denise Brown, who founded the web site Caregiving.com in 1996, started her talk at the annual conference of the Alzheimer's Association Delaware Valley Chapter last week with a vocabulary lesson.
She no longer talks about caring for "loved ones" because so many people told her those words are problematic. Many don't even like the person they care for. Knowing chuckles rippled through the ballroom at the Radisson Hotel & Conference Center in King of Prussia, acknowledging the emotional complexity of helping your nasty mother-in-law or the father who abandoned you.
Now Brown, a suburban Chicago woman who has written five books for family caregivers, uses the word "caree." She went on to describe the caregiver journey from knowing a family member is declining and will need help - to their death - to being ready to help others.
Caregivers, she said, often underplay how important their contribution is. "You are taking on one of the most important and critical responsibilities you'll ever have," she said.
The one-day conference drew 280 people, a combination of family members and professionals who care for people with dementia. While Brown talked about the emotional impact of caregiving, other speakers discussed practical ways to keep patients safe and the importance to caregivers of minding their own health.
According to the Alzheimer's Association, 15.4 million family members and friends provided 17.5 billion hours of unpaid care to people with Alzheimer's disease and other forms of dementia in 2012.
Caregivers said they came to the conference to prepare for what comes next and share what they've already learned. "There's a lot of good information here," said Mona Hughston-Watson of Horsham, who cared for her husband until he died in 2010.
Brown urged people to equip themselves with as many facts as possible when they realize they are likely to care for someone whose brain is failing.
Record your family member's life story. Ask what they want for their death. "Information now is power later," she said. "Really, what we're talking about is preventing regrets."
Later, accept help when it's offered. If Mom balks at having a housekeeper in her house, let someone clean your own house.
Forgive family members who promise to help and don't come through. Seek someone to talk to when the times get rough. "We are . . . not meant to be alone," Brown said.
One of the hardest periods is when caregivers must switch from doing all they can giving great care to simply being with the caree as death nears.
Laura Gitlin, director of the Center for Innovative Care in Aging at Johns Hopkins University, recommends having a professional evaluate patients and their homes for falls and other safety risks.
Clutter or loose rugs that may not have been a problem in the past need to go when patients have cognitive problems.
Caregivers also need to think about the risks inherent in driving and smoking. Don't leave medications sitting around.
Sharp knives and guns, she said, are particularly dangerous in the hands of dementia sufferers.