How families, caregivers affected by dementia can navigate the holidays

Holidays can be stressful and overwhelming, both for caregivers and people with dementia who need care.

But it’s possible to create a joyful time for everyone.

Experts who assist families and patients shared their suggestions on how to navigate the holiday season to ease the stress and strain on all involved.

There’s always the adage of the caretaker thinking they have to give everything away to care for their loved one, or that it’s all or nothing. You have to take care of yourself.”

—  Kathy Miller, former care advocate for Leeza’s Care Connection’s former Joliet location

Make plans

Hadi Finerty, senior manager of education and community volunteers for the Alzheimer’s Association Illinois Chapter, tells families that as the holidays approach, they should make plans.

For instance, if a person with dementia “sundowns” – becomes confused, anxious and paces as evening approaches – eat the holiday meal at 2 p.m. instead of 5 p.m., Finerty said.

If the loved one naps at a regular time, take that into consideration, too.

Control stress by asking family members to bring their positive attitudes and a dish to pass, Finerty said. Ask someone to arrive early to keep the loved one company, and assign a “buddy” to help keep the loved one safe that day.

Prepare family members by explaining where the loved one is. “Then they’ll know what to expect.”

When visiting, identify a quiet space if the loved one needs time alone, away from the activities, she said. If you have dark-colored area rugs about, consider removing them for the day.

“For the person with the disease, dark-colored rugs appear like holes,” Finerty said. “They might be scared to walk on them, afraid they’ll fall into the hole.”

Loud talking and children being excited and loud can be hard to process and can provoke reactions from dementia patients, Finerty said.

A simpler celebration with just two or three people, a holiday meal and old movies might be more enjoyable, she said.

That’s possible even if the person lives in a nursing home memory care unit.

“You can say, ‘I brought you cookies because today is Christmas,’” Finerty said.

But keep the routine as much as possible, said Kathy Miller, a former care advocate for Leeza’s Care Connection’s former Joliet location, which supported caregivers.

Routine is how people with dementia feel safe, secure and that “their basic needs are being met.”

Still, prepare the person with Alzheimer’s or dementia for the gathering,” Finerty said.

“Don’t say ‘Christmas is coming’ four weeks ahead of time,” Finerty said. “But maybe say the day of, ‘We need to start getting in the shower.’”

Make holidays meaningful

“Meaningful” is contingent on the loved one’s stage of dementia and their abilities that day, Miller said.

Use the five senses to determine what makes the loved one feel safe, Miller said, giving examples. Photographs of loved ones. Favorite carols. The smell of cookies baking. The taste of chocolate. A soft blanket, doll or Teddy bear.

Family traditions still have meaning, even if the loved one can’t recall them.

“Instead of focusing on the loss, focus on the joy of remembering,” Miller said, “even if it’s the caregiver doing the remembering.”

What if the old traditions are too painful?

“You can always make new ones,” Miller said.

Be inclusive

Address the loved one by name, speak slowly, be patient and don’t argue, Finerty said. If someone mentions Christmas trees and the person with dementia insists they’re angels, then they’re angels.

“We’re meeting the disease where it’s at,” Finerty said. “Their reality is their reality. If we argue with someone who can’t remember, you’ll cause them to become anxious.”

Finerty suggested inviting the loved one to participate in holiday activities by saying, “We just ate, let’s go for a walk,” or “Now it’s time to ice and decorate the cookies.”

But make sure they don’t misidentify objects. Miller recalled a craft project at Leeza’s Care Connection where a woman thought the round painting sponges were cookies and tried to eat them.

Finerty said photo albums may encourage conversation, but refrain from asking “Do you remember that person?” or “Do you remember me?” or “Do you remember when?”

Buy gifts the loved one can give and wrap it together, so the loved one is spared the embarrassment of arriving with “empty hands,” Finerty said.

Prepare to adapt to the situation in the moment, and at the very least, “acknowledge that they still have a heart and a soul,” Miller said. “The worst thing to feel is left out.”

Find balance and accept help

Caregivers should balance their needs with the needs of their loved ones, especially during the holidays, Miller said.

“There’s always the adage of the caretaker thinking they have to give everything away to care for their loved one, or that it’s all or nothing,” Miller said. “You have to take care of yourself.”

People may ask “How can I help?” or “What would you like for Christmas?” Suggest they stay with your loved one while you shop, have lunch with a friend or see a movie, Miller said.

Locate respite services in your community, Miller said, such as the one offered by Senior Services of Will County.

Seek support

Miller said the support group at Leeza’s Care Connection was “the main lifeline for caregivers.”

Roger Bromley of New Lenox agreed.

Bromley said he joined that support group after moving to the Joliet area in 2008 to care for his mother. He now facilitates a caregiver support group at 6:30 p.m. Thursdays at The Timbers of Shorewood.

But in 2008, Bromley was on the “fast track” for a major health event, he said.

“And I did not know it,” Bromley said. “Because I thought taking care of Mom was going to be a walk in the park. And it became very, very brutal.”

Newcomers to the support group often hesitate at the door. Bromley reassures them they are in the right place.

“You are not alone in what you’re experiencing,” Bromley said. “When you get together with other people in the support group, that lifts you up.”