BOSTON -- Clara John's ability to do many of life's routine tasks started to drift away 10 years ago as Alzheimer's disease took hold. Her husband, James, now 84, could not bring himself to admit that she needed more care than he could give.
That left Clara's two adult sons to ponder the difficult questions about their mother's future -- questions that had never before occurred to either of them.
''We were two guys who didn't really know anything about caring for their elderly parents,'' said Greg John, now 43, who co-owns a marketing and advertising firm. ''Our parents were always healthy. It seemed like a few weeks earlier, they were doing great -- and then we were at this point where we thought, 'How did this happen so quickly?'''
The Johns eventually sought the help of an elder care consultant and in 1997 got their mother, now 77, into a nursing home in Lawrence where she still lives. Their father visits frequently from his home less than 3 miles away in Methuen.
They are not alone in facing tough decisions about aging parents.
A survey by AARP of seniors 65 and older with children 35 or older revealed that 67 percent had not talked with their children about what their future needs might be.
The San Francisco-based Family Caregiver Alliance estimates that the number of older persons needing long-term care may double over the next 25 years to over 14 million.
Many of them have no plan for their end-of-life care.
''We don't look at death as a natural part of life. We fear it,'' said Suzanne Mintz, president and co-founder of the Kensington, Md.-based National Family Caregivers Association. ''So we don't want to go there. I think that's one of the primary reasons that people don't talk about end-of-life of issues with their parents. Some don't even want to talk about it with their spouse.''
Mintz knows firsthand what delaying an end-of-life discussion can do.
When her own father had a stroke, her mother became his primary caregiver. Though Mintz urged her mother to straighten out her father's finances and figure out a long-term plan, it took a while before her mother gave in. Just as the family was about to jointly decide what to do, Mintz's father had a medical emergency that required him to be admitted to a constant-care facility immediately.
''Instead of being a proactive meeting, it became, 'Wow, we have to find a nursing home this weekend,''' Mintz said. ''You never know when that major problem is going to occur, and it pays to put in order, what you can, as soon as you can.''
The costs of a parent's care can be astronomical even in the best of situations. Before the Johns put their mother in a nursing home, they had in-house care for her to help with her bouts of dementia. When the period covered by insurance ran out, the Johns paid $30,000 of their own money for a year's worth of home health aides.
Greg John said his costs would have been even higher had he not used an elder care consultant to help him.
''You can waste a lot of money if you don't know what's going on,'' said Margaret Shaheen, president of Elder Care Coordinators in North Andover. ''We're not brain surgeons, but we have the information.''
Even informed people can spend a lot of money on care. A year of nursing home care will cost, on average, $56,000, according to Elinor Ginzler, AARP's Manager of Long-Term Care and Independent Living. The average stay at a nursing home is roughly two and a half years.
Ginzler said that Medicare only covers nursing home costs under very specific conditions for a very short period of time -- and eventually, doesn't pay anything.
For wealthy people who want to protect their assets, there is a solution: long-term care insurance. Most people don't know this specialized kind of insurance exists. Only 5 percent of nursing home costs are paid for by long-term care insurance. But it is available in every state (each state's insurance commissioner has a list of the companies that sell it).
''Here's the most important factor about long term care insurance: You're best off if you purchase it way, way, way ahead of when you need it,'' Ginzler said. ''Because annual and monthly premiums increase with age. It's also not inexpensive. It's important to remember this is not an option for everyone.''
Dr. Muriel Gillick, physician-in-chief at the Boston-based Hebrew Rehabilitation Center and author of ''Lifelines: Living Longer, Growing Frail, Taking Heart'' recommends a multidisciplinary geriatric assessment that involves a nurse, a physician and a social worker evaluating the patient. Gillick said this provides a more comprehensive service than an elder care consultant.
She also said that many people want to make an end-of-life plan -- even those who don't do it.
''When people are asked if they want advanced medical planning, 95 percent say they want to. What's kept them from doing it is that no one brings it up,'' Gillick said. ''Children trying to protect parents have a hard time bringing up frightening things, but it's something that needs to be done.''
National Family Caregivers Association: http://www.nfcacares.org/
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