Caregivers: Alzheimer’s calls for flexibility

Experts say a little thoughtfulness goes a long way to ease stress.
Wednesday, December 22, 2004 | 12:00 a.m. CST; updated 4:16 a.m. CDT, Saturday, July 19, 2008

Be generous with hugs and be flexible. That’s the advice of experts for families who have loved ones with Alzheimer’s and dementia this season.

Although each person’s situation is unique, there are some general approaches to use that will help make the holidays more enjoyable for everyone.

“Go with the flow because some things are going to be different,” said Donna Ostercamp, Columbia site director for communications for Community Hospices of America. “I took the knobs off my stove at Christmas because my grandmother kept turning them on to cook and then walking away.”

Ostercamp said that flexibility applies to other family members as well because everyone’s learning curve about the disease is going to be different.

“Be willing to modify traditions; if you always went to midnight Mass you might not be able to do that anymore,” she said.

Penny Braun, director of the Mid-Missouri Chapter of the Alzheimer’s Association, said patience with other family members is a key to getting through the season without stressing out.

“Seagull relatives will fly into town at the holidays, eat everything, swoop around and criticize the way his caregiver is handling the situation, but they don’t stay long enough to understand the complexity of it,” she said.

Braun has seen both sides of this scenario, as she was once critical of her father for ignoring her mother’s questions after she was diagnosed with Alzheimer’s.

“She had asked him four times what street he lived on growing up, and he ignored her while saying ‘right now I’m trying to read the paper.’ I finally said, ‘answer the woman,’ and he explained she had asked him that question more than 300 times that day and whether he answered or not she was going to continue to ask.”

Braun also recalls taking her mother to the beach with her sister when they were visiting her parents in Corpus Christi, Texas. At the time, she didn’t understand why her father didn’t want to join them, but later realized that the break he got from being a 24-hour caregiver meant a great deal to him and was necessary for both his and his wife’s well-being.

According to the Mid-Missouri Chapter of the Alzheimer’s Association, an estimated 12,000 people in the area have Alzheimer’s or related disorders. It was a need to educate and cope that prompted Walter Heidlage to write his book, “My Spouse Had Alzheimer’s, My Experiences as a Caregiver.” His book chronicles his experiences living with his wife from the time she received a diagnosis of Alzheimer’s in 1993 until her death on March 29, 1998, 16 days after their 55th wedding anniversary. Heidlage said he and his wife searched for a personal book explaining the experiences of other couples, but most of the literature available was written by experts. His book was designed to fill that void and to help him heal after the loss of his wife.

Ostercamp said she sent a copy to her father-in-law for Christmas this year.

“Reading about someone else’s experiences, especially someone in your own generation, really helps you understand how someone else went through that emotionally,” she said.

For Heidlage, maintaining normalcy was the most important part of everyday life.

“We loved to travel, and we kept traveling after Sarah was diagnosed,” Heidlage said.

Heidlage said they never made a big deal of the holidays because of their dislike for cold and snow.But they continued to pull their RV from Columbia to the Rio Grande Valley in Texas, as they had since retirement.

“I just refused to make any changes,” he said.

Heidlage said he receives letters or telephone calls once or twice each week from people who have read his book, and he continues to stress normalcy for as long as you possibly can.

For others it’s about striking a balance and remaining observant.

“Zero in on the things they still enjoy,” said Peter Koukola, president of the board of directors of the Mid-Missouri Chapter.

Koukola’s niece gave his mother, who has Alzheimer’s, a family picture album and a family member updated it each year. Koukola said she has since lost some interest in it, but his mother still enjoys receiving a nice personal gift such as a blanket or lotions. He also donates to her nursing home on her behalf.

Joetta Coen, program director for the Mid-Missouri Chapter of the Alzheimer’s Association, said continuing to emphasize a family member’s qualities and interests is important.

“My mom loves to share and has always been a giving person,” she said. “I took popcorn, chocolate-covered cherries and cashews to her, and she divided them up on plates and distributed them to everyone who would take one.”

Experts agree, it is imperative not to forget caregivers during the holidays.

“If you don’t take care of the caregiver, or if the caregiver isn’t getting enough sleep, the whole thing falls apart,” Braun said.

Whether that caregiver lives at home with the patient or is part of a staff at a facility taking care of them benefits the patient, Simpson said.

Nicole King, assistant director of the long-term care ombudsman program for the Central Missouri Area Agency on Aging, suggested contacting the activity director or social services director at a facility to help guide family members through their gift-purchasing decisions, and find out what resources they have and what they need.

“Schedule quiet visits with close family members and do something they enjoy,” Simpson said. “They just want be listened to and to reminisce,” Simpson said.

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