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Friday, November 25, 2011 - Page updated at 07:00 p.m.
Caring for the caregiver
By Marcella McCarthy
After she cared for her husband who had a brain tumor, and after she failed multiple times to have a child, Mary Cail's life took an even darker turn. In 2000, in the middle of winter in Charlottesville, Va., while searching for her husband on hospital grounds, she found him, Dr. Wayne Cail — a Miami native who had attended Hialeah High — dead in the parking garage. Wayne had taken his own life.
Initially, friends clamored around Cail, offering support and an ear as she tried to find the floor that seemed to have dropped out from beneath her. But unable to relate to her loss, it was difficult for them to find the right words and eventually they didn't know what else to say.
Cail withdrew and isolation engulfed her.
"I found myself during those years wishing I had a tool to give to friends to have them better understand what I was going through," Cail said in a recent interview.
"Most of us have been stuck in awkward social situations when, out of the 25,000 words we probably know, only about 10 come to mind, and they aren't the right 10," Cail says, in her new book, "The All Weather Friend's Guide to Alzheimer's disease, Staying Connected to Loved Ones with Dementia and their Caregivers."
According to the Alzheimer's Association, 5.4 million people were living with Alzheimer's in the United States in 2010.
To help assuage her grief, Cail started volunteering in nursing homes. By spending time with Alzheimer's patients, she realized that many "were as isolated in their failing minds and bodies as I was in my grief," she said in a recent blog post.
"Friends seem to fear a person with Alzheimer's. A lot of people they thought were friends — disappear," said Donna True, a licensed clinical social worker with the local chapter of the Alzheimer's Association.
Cail's book threads narrative along with simple points on how a friend can continue to be a friend. It also offers advice for when a friend takes on the full-time role of caregiver.
Cail recommends that friends avoid phrases such as: "I forget things. Everyone does. It's all right." Or: "What you said was (witty, clever, sharp, or insightful). You're back to your normal self."
Other unhelpful phrases include:
— "Have faith. Be strong. We're not given more than we can bear."
— "You're healthy in other ways; that's a plus."
— "I'm sure they'll find a cure. Try not to worry."
— "I don't see anything wrong with you."
Cail calls these "misguided condolences," and says they work against mollifying the situation. That's because the friend is not accepting reality, which only increases the anguish of the patient.
When friends become a caregiver, they too may feel isolated, as they may feel uneasy about taking their spouse or parent to social events.
"Caregiving has taken on a whole new face than it used to have because of the aging boomers," said Nancy Strickman Stein, founder of Seniority Matters, a local referral network and website (www.senoritymatters.com) that strives to connect patients and their loved ones to the help they need.
Stein says much more attention is now given to the caregiver, including their emotional and financial obstacles. Cail spends about half of her book telling people how to be a good friend to caregivers.
"Keep your friend in your life because of the relationship you've built together, not because she's in a position to match your hospitality," Cail says. "There are few more powerful messages one friend can give another than the promise of presence through the bad times as well as the good."
Some of Cail's recommendations include:
"Take over takeout."
Most of us who aren't full-time caregivers would graciously accept a meal we didn't have to spend hours preparing. A takeout meal doesn't burden the friend with the cooking either. But call ahead so you don't catch your friend off guard. And when you show up with the cartons of Chinese food, stick around for dinner and offer "the promise of companionship." Skip the money woes by deciding how to handle the expense in advance.
"Visit by phone."
Don't forget the ease of picking up the phone and keeping your friend company. Caregivers may have a hard time getting out and socializing and, "the more sophisticated and convenient ways of communicating, the greater the despair of being alone," Cail says.
"Understand it's not forever."
Acknowledge that your interaction with one another may need some adjusting, recognize that your relationship with your friend will be different.
"Don't problem solve, just listen."
Men have often been accused of attempting to problem solve when their significant other isn't really looking for a solution, but rather just a listening ear.
And the same goes for an exhausted caregiver.
"When the caregiver needs to talk, don't problem solve or moralize," Cail says, "Reflect emotion and ask nonintrusive questions that show interest and concern. It will be enough."
Copyright © The Seattle Times Company
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