"The first time talking about this is going to be really, really hard because it's a painful subject to think about," said Gayle Doll, assistant professor in Kansas State University's College of Human Ecology and director of the Center on Aging. "However, it is also one of the most important conversations you can have."
An expert on aging, Doll has studied and published on numerous gerontology aspects, including culture change in nursing homes; physical functioning of older adults; and the sexual expression by residents in nursing homes. She also visits regularly with residents at Meadowlark Hills Retirement Community, a nursing home in Manhattan, Kan., to learn from those living these topics.
According to Doll, many residents voluntarily chose to move into a retirement community that included a nursing home to protect their children from having to make the difficult and painful decision about caring for their parent.
"However, only a small percent of older adults are this forward-thinking, leaving many other families, especially now with an aging baby boomer population, to be involved in this important decision process," Doll said.
Thinking about and discussing the topic can be difficult and painful in the beginning, Doll said. But avoiding it can potentially create an even more painful situation in the future.
"The most critical thing is to start this discussion before a crisis occurs," Doll said. "At the time of a crisis you're going to be looking at nursing homes and trying to make a decision. Without ample time, that decision may not be based on which home is the best, but rather which one has an opening. That's a factor nobody wants to have dictate a decision."
Although there is no step-by-step or standardized approach for how to effectively begin a conversation about nursing home and end-of-life options with a loved one, Doll offered several tips for how to maximize the conversation outcome:
* Be honest and direct, beginning with the first conversation. "It won't be something easy to talk about, so that's why it's important to be direct," Doll said. "Say something like, 'I know we don't want to talk about this and I can't stand thinking about a time when our life can't be like it is now, but I want to make sure that when things change we do this the best way we can. The sooner we talk about this the easier it will be in the future and the more we'll get what we want from the situation when the time comes.'"
* Do not make unrealistic promises and promises that cannot be kept. "So often kids will say, 'I won't ever put you in a nursing home,'" Doll said. "Other times it may be the parent who will say something like, 'Kill me when the time comes' or 'Never put me in a nursing home.' Those are all such horrible things to say and may not be realistic."
* Make it an annual talk about the same time each year. "A lot can happen in a year, and it's common for people to change their mind a million times about something," Doll said. "By reassessing previous decisions on a frequent basis, you and your loved one can have the latest decision about what you want and don't want because those circumstances will have changed."
* Start discussing nursing home and end-of-life wishes earlier in life rather than later. Although these topics are affiliated more with older age, an unforeseen injury or crisis could happen, requiring an immediate decision, Doll said. Discussing these topics earlier in life will also help with addressing other difficult and complex issues in life.
* Do not assume that parents may have a stigma about discussing these topics. "In talking to groups of older adults I've found that they are much more comfortable talking about this subject than we may think," Doll said. "They read the obituaries and they have had friends who have died. The door is open to talk about it; they're just waiting for you to start the conversation."
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