Two ideas help explain the work Davina Porock does in Western New York. One is about dying; the other, very much about living.
The first comes in a quote from an unknown source: “In the Orient, death is seen as a necessity. In Europe, death is seen as inevitable. But in America, death is seen as an option.”
Porock, 53, a British-born researcher in the University at Buffalo School of Nursing, sees the American view play out in some of the region’s skilled nursing homes. Which brings the professor and associate dean for research and scholarship in the nursing school to another powerful idea. She culled this one from the real-life story of a brother and sister with very different notions about their mother’s later years.
The daughter would allow her mother, who had mild dementia, to work for an hour or two every morning to make the two ladies lunch. “It didn’t look like much of a sandwich at the end of it,” Porock said, “but for that mother, that’s what you do, you prepare lunch for your family.”
The brother blew in from out of town, and was put off by what he saw. “Why are you making mother do all this work?” he asked. “You should be looking after her.”
“We’ve got this really weird way of thinking about what it means to be looked after,” Porock said. “It has to be like you’re in a hotel with room service or on a cruise ship, when in fact, an older adult wants nothing more than to be a full-fledged member of a community or family. They don’t want to be told to sit in a chair.”
This is the bedrock philosophy the UB Institute for Person-Centered Care. Porock is executive director, and she and other UB researchers are working with several area nursing homes to research the best practices and help stir the most meaning from the lives of those who still have something to experience, and give.
Porock, a native of Hampshire, England, spent most of her educational and professional life in Perth, Australia. She came to Buffalo three years ago and lives a short distance from her office in Wende Hall on the UB South campus.
November is National Caregivers Month, so let’s start there. What is the best piece of advice you can give to a baby boomer doing his or her best to hold a job, help tend to the needs of parents and deal with demands of teens or young adult children?
There’s no silver bullet here. Sleep well, eat well, exercise a little, and get as much information as you can about whatever the issues are.
I think boomers have this thing about they’re the only ones who can do it, and they’re the best person for it, but you can ask teenagers to pull their weight with grandparents, and give them more purpose and sense of direction, and the feeling they can accomplish something. Also, because they’re old, don’t assume your parents aren’t capable of doing anything to help. It should be a team effort. If the boomers think they have to fix it all, they’re going to only disappoint themselves.
What do nurses, doctors and scientists know about Alzheimer’s disease and dementia?
If you let people do for themselves, they maintain their skills better, but they’re also happier. Their whole adult lives they’ve been doing things for themselves. You take it away, why would they behave any differently than a 3-year-old who says, ‘I can dress myself?’
As doctors and nurses, when we assess people, and we’re trying to work out how bad the dementia is, we’re often doing it for our own benefit, not the person’s. … If you give them a test, they might not remember the three things you told them half an hour ago but they still know how to pot a plant, make a meal, tidy up, do some gardening. So sometimes, we see the person as a list of deficits rather than a whole person, in context, who’s still able to do a lot of things. I think all of this sometimes gets overwhelmed by: ‘This is a disease and we’ve got to cure it.’ We’re so far away from finding a cure, and it’s like cancer. Can you cure them all?
So you’re saying make the time, whatever time, as meaningful as possible?
Always. Also, to make your life meaningful, because it could be the Number 9 bus that gets you when you walk out on Main Street. We talk in health care about saving lives. We don’t really save lives, we prolong the point of death, push it back. It’s impossible to save a life, isn’t it, because we all die? So if you want to know in a nutshell what the purpose of my research program is, it’s to try to make sure we don’t have a miserable end. It’s relatively easy when you’re in control yourself, but when you start to lose abilities, that’s when it becomes harder and you rely on the people around you to support you, to compensate for you.
What tends to bring the greatest joy to people who have dementia?
Other people, animals and children. If you want to make a difference, you spend time with a person, even just holding their hand. Whenever a baby comes into a long-term care facility, men and women alike, their eyes light up watching that. They love to interact with babies, children, dogs. The other thing that almost immediately, almost always makes a difference is music.
On the Web: Find out Thursday how one activity can bring together a family Thanksgiving weekend at blogs.buffalonews.com/refresh