Alzheimer's Club

"Editor's note: Part one of this two-part series on dementia illnesses such as Alzheimer's disease centered on the experience of caring for a patient. Part two concerns taking care of the caregiver — how to seek help and avoid the stress and burnout that are common to caregivers.

In her role as training and consultation director and dementia specialist for Family Alliance, Woodstock, and as co-author of a new book titled "Dementia Caregivers Share their Stories," Lynda Markut is a strong voice for more education and awareness of dementia-related illnesses.

November is National Alzheimer's Awareness Month, and one awareness issue that needs to be raised is that caregivers of dementia patients need to learn to ask for and accept help in order to keep their own stress levels manageable.

Markut cared for her mother, Helen, for 15 years after Helen was diagnosed with vascular dementia. Markut's book, written with co-author Anatole Crane, is a collection of the stories of family members of dementia patients who have come together in support groups at Family Alliance to find help and share experiences.

Keeping it in perspective

Becoming totally involved in the care of a dementia patient can easily become overwhelming, said Markut. But overextending oneself and never taking time off to walk away from the situation from time to time can have an adverse effect on the health of the caregiver.

"It's when you lose sight of your own life ... if your life has become disease-focused, then I would say you are stressed out and need to start the process of caring for yourself," said Markut.

"The most calls that we get (at Family Alliance) are about starting someone in a day care program," said Markut. There is help available, but the caregiver has to be creative and persistent in looking for it.

That help differs from patient to patient, according to the capabilities of the patient and the family. It will involve a combination of home care, the help of family members, friends, paid caregivers, day care programs and sometimes a residential care facility such as a nursing home.

Family issues

"If you want to work together as a family, you need to realize that every person has a certain level of capability to respond," said Markut. "Some can, some can't. The act of caregiving, by itself, does not enhance family connections. All the ways your family worked together before, and all the ways they did not work together before, all that still applies.

"What works, often, is to have a family meeting with an outside professional, an objective person," said Markut. "What that does is to help everyone get the words out and listen."

You don't have to do it alone

Markut explained the concept of "rent a friend."

"It can be a friend, a next-door neighbor, someone the patient knows," said Markut. Asking that friend to stop in and check on a patient as a paid service can reduce stress for both the patient and the caregiver. When the relief caregiver is a familiar face, the patient won't know they are being taken care of.

"There are places that will take a person for the weekend, or a 24-hour period, like nursing homes. They may have an empty bed, to offer respite care, like a stay for a weekend," said Markut.

"No one said that caregiving has to be a solo journey," Markut added. "Statistics show that only 11 percent of (caregivers) use support groups across the United States. What we are taught in this country is that we are supposed to be independent. I blame John Wayne," Markut said with a laugh. "We are taught that, when we are really all interdependent."

Giving permission

"What we try to do is give caregivers permission to take care of themselves," said Markut. "Think about what they tell you on a plane, for parents to put the oxygen mask on themselves first, so they can then take care of their children."

According to Markut, without relief, the nonstop stress of being a caregiver will result in serious health consequences. Ironically, research shows that it is factors such as high stress, lack of creative mental stimulation, lack of connection to a larger group of people, poor diet and lack of exercise that can make a person more susceptible to dementia-related illnesses.

Life after caregiving

"When people are so much into caregiving, they are lost when they let go of it," Markut said. "For a long time, their life was solely caregiving for that person, and that person is no longer there ... they are lost. Life is empty, and they have to work hard to get those connections again."

The bottom line, Markut said, is that, "We try to give caregivers permission to take care of themselves. We all need somebody. When you are caring for someone with dementia, you need a lot of somebodies."

Support for caregivers

Family Alliance offers support groups for caregivers, drop-in day care for dementia patients and a host of other services and resources. For information, call Family Alliance at 338-3590.

The book "Dementia Caregivers Share Their Stories" is currently available at Read Between the Lynes book store, 129 Van Buren, Woodstock; and online at Amazon.com. The book is also available at the Woodstock Public Library."

Source: Eileen Millard. It is important to take care of the Alzheimer's caregiver. The Woodstock Independent (23 November 2005) [FullText]