Help with coping with Alzheimer's

Daily Press (Newport News, Va.) (MCT) - One reveals that her mother's cruel, manipulative behavior has intensified, becoming almost unbearable. Another reports that his wife now resists any offers of help and deters visitors. Another says that sometimes her husband falls and she's not strong enough to lift him.

Every caregiver faces a different challenge, but they also share in a task that routinely takes its toll on their own health and quality of life. A code of silence, of protecting the cared-for at whatever cost, of not identifying themselves as caretakers, is common to all. "So many are uncomfortable with calling themselves anything other than a spouse, a parent or a loving adult child," says Suzanne Mintz, president of the National Family Caregivers Association.

First and foremost, they're husbands and wives, sons and daughters, people taking care of those they love even when they're no longer the people they know.

That's evident at a recent Alzheimer's Association support group meeting _ just an hour, so they can return to their charges _ when the dozen caregiver participants take turns describing their particular situation, outlining the problems they face, and sharing their scattered successes. The tone is matter-of-fact. There's no self-pity. They're coping, as they're prone to say.

There are no solutions to their grinding routines and the relentless demands, both physical and psychological, which require round-the-clock vigilance. The best they can hope for is some relief, a break, a sympathetic ear, others who have an inkling of what they're experiencing.

Each takes a turn to vent, others are given the opportunity to pitch in with advice or empathy or something that has worked for them, and all are guided gently and expertly by facilitator Judy Hutchinson, a senior social worker from the Peninsula Agency on the Aging.

The stress of caring for someone with Alzheimer's or dementia has been shown to impact a person's immune system for up to three years after their role ends and it can knock 10 years off their life span. It increases the incidence of depression in spouses six-fold and doubles it in children caring for parents.

Linda and Ed Miller still attend the meetings to help others, even though her aunt whom they cared for died in 2004. "It was an 18-month intensive training in Alzheimer's," confides Linda. It took a toll on Linda's health, aggravating a congenital heart problem that she was previously unaware she had. Even though they placed her 90-year-old aunt in a home, caring for her remained a two-person full-time job, says Ed. While he took care of her financial and legal matters, Linda provided necessary daily supplementary care to the nursing home. To the group, Ed emphasizes the importance of gaining a durable power of attorney and taking advantage of all the help that's available from doctors, pharmacists, lawyers and specialized institutional care. The silver lining for the Millers, who were thrown into a care-taking role without warning, was finding so many people so willing to help.

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From each person's story, the underlying message that emerges is the intense pain of caring for a loved one whose personality has changed. Of looking after people, often lifelong companions of more than 50 or even 60 years, who no longer recognize their partners, or who become belligerent and aggressive. Of looking after people, once accomplished and talented, who can no longer manage the simplest tasks. Of letting go of a loved one while bearing the physical burden of round-the-clock care.

The one-hour meeting is an oasis for caregivers taking vital time out to care for themselves.

These are some of the problems participants discussed:

Problem: Resentful of offers of help

Suggestion: Language matters. Ask visitors to use a cooperative approach ("What shall we do?" "Let's go out.") rather than a top-down, "How can I help?"

Problem: Short attention span leading to loss of interest in TV

Suggestion: The TV show "Whose Line is it Anyway?" or any show that uses short skits.

Problem: Paranoia

Suggestion: Silence, don't react to irrational accusations.

Problem: Needing constant attention.

Suggestion: If there's an activity they still enjoy, such as crossword puzzles, bowling on Wii, computer games, see if they'll play with someone else.

Problem: Need for continuity and stability so can't just invite someone over to step in for an hour or two.

Suggestion: Introduce "helper" at church or other visited place and when they come to the house, remind them that they know them from that setting to take away the suspicion of person being a "helper."

Problem: Their desire to continue activities that are no longer safe for them to pursue.

Suggestion: It's important to be proactive and remove potential dangers, such as car keys and power tools. Use distracting techniques as with a child to get them interested in alternative activities.

Problem: Extreme manipulation, such as suicide threats.

Suggestion: Get a full medical evaluation, or if an imminent threat, call 911. Any change in behavior _ or memory and communication skills _ should not be attributed to the aging process; rather it indicates the need for medical assessment. An accurate diagnosis is essential to treatment.

Problem: Knowing how much to tell loved ones who may be lucid at times and not at others.

Suggestion: This is extremely hard for the caregiver, but they must recognize that they can no longer share information as an equal, and it's not necessary for them to be completely candid.

Problem: When caregiver isn't physically strong enough to lift a person who has fallen.

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Suggestion: Try to have a plan before there's a crisis, someone you know whom you can call on for help at short notice. Otherwise, remember you can call 911 for help.

NEWS TO USE

What: The Alzheimer's Association conducts monthly support groups. Only caregivers _ not care recipients _ are encouraged to attend.

Cost: There is no charge for attendance at support group meetings, though it's requested that people call in advance.

Info: The association's Web site, www.alz.org, lists all the monthly meetings.

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© 2008, Daily Press (Newport News, Va.).