Holidays altered for families of Alzheimer’s patients
Experts say letting go of some traditions, knowing what to expect during different stages of disease key to coping
Sunday, December 18, 2011
Tips for preparing for a holiday with a loved one with Alzheimer’s
During parties, provide the patient with a quiet room.
Use name tags at gatherings.
Reduce outings from all day to one to two hours.
Trade out cooking for a potluck.
Hold a family meeting about how to divide tasks.
Use holiday cards and letters as a learning opportunity about the disease.
Ask for help.
Prepare visitors for what to expect from the patient, and how they can respond.
Arrange for respite care to complete holiday tasks or just to take a break.
Source: Shanti Potts, caregiving instructor at Clark College
During Barry and Laurel Peterson’s more than 50 years of marriage, one of the Brush Prairie couple’s cherished holiday traditions was to decorate the Christmas tree together.
“I put the lights on the tree; she always put the ornaments on the tree,” said Barry Peterson, 77. “This year, she didn’t even understand what it was.”
Laurel Peterson, 76, was diagnosed with Alzheimer’s disease in 2006, but it wasn’t until two years ago that she lost all memory of the significance of the holiday, Barry Peterson said.
“What do you do for somebody who doesn’t understand Christmas?” Barry Peterson asked.
That sense of helplessness and frustration is common among family members of people diagnosed with Alzheimer’s and other forms of dementia, experts say. The disease afflicts about one in eight people older than 65, according to the Alzheimer’s Association. The holidays can intensify the emotions that come along with having a family member with the disease. But experts say making a few modifications to the holidays can make them go more smoothly.
“Having a spouse with Alzheimer’s is a terrible journey,” Barry Peterson said. “I don’t wish it on anyone, but there are ways to handle it.”
Making the holiday as enjoyable as possible requires learning what to expect in the different stages of the disease and adjusting expectations accordingly, according to Nataly Rubinstein, author of Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide. Don’t dwell on past memories of the season or popular culture’s depiction of the holidays as a blissful time of year, Rubinstein said.
The holidays will not be as they used to be, but they can still be enjoyable if everyone is prepared for what to expect, she said.
Battle Ground resident Lenard Davis, 77, has learned that lesson well. His wife, Faye,
80, has had Alzheimer’s since 2006. He and Faye sing each week at Vancouver’s Caretique memory care facility, as well as other rest homes and senior centers. The activity keeps them busy and helps prevent them from falling into self-pity, Davis said.
“Don’t keep lying to yourself, because a lie will never solve a problem,” Davis said. “A lie can kill you. The truth may hurt a lot, but you’ll get over that. If you know the truth, you can take care of the problem.”
Rubinstein said learning about the stages of dementia allows family members to interact with the patient in a way they can handle. The family member who lives with the person with the disease can help prepare other relatives for what to expect. That gives relatives a chance to adapt their behavior. For instance, in the moderate stage of the disease, family members may want to subtly remind the patient of their name by saying, “Hi, Dad. It’s your oldest son, Nathan.”
Let go of some traditions
Shanti Potts, a Clark College caregiving instructor and advisory council member at the Southwest Washington Agency on Aging and Disabilities, said family caregivers may feel overwhelmed with efforts to maintain holiday traditions on top of caring for their loved one with Alzheimer’s. Potts gives an annual presentation for family and friends of Alzheimer’s patients on Preparing for the Holidays as a part of her work with the Portland chapter of the Alzheimer’s Association.
“Caregivers give thousands of hours of care with little or no respite or help,” said. “The holidays are just one more thing for them to have to deal with.”
Opal Swanson, who leads an early stage Alzheimer’s support group in Vancouver, said she recommends letting go of some holiday traditions or considering giving the responsibility to someone else, she said.
“Don’t try to do everything you used to do, the long Christmas cards or doing all the baked goods,” Swanson said. “Stop things that cause stress.”
Potts said try holding a potluck instead of providing an entire meal or downsize the number of people you invite to your home.
Lenard Davis agrees.
“I go by priority: What’s the most important thing to do?” Davis said. “I don’t straighten things up around the house much. The house is clean but cluttered. You know what I found out? It hasn’t killed me yet.”
Another idea is to use some holiday tasks as a form of therapy and education. That’s what Barry Peterson did. He made his own Christmas cards this year using a painting his wife, Laurel, did last year. Laurel’s counselor, Marti Sanders, wrote a description of her observations of Laurel and how Laurel responded to questions about the painting. The painting and the description not only serve as a window into the mind of a person with Alzheimer’s, it also reinforced Peterson’s coming to terms with the disease.
Potts suggests holding a family meeting during the holidays to find ways to divide up some of the tasks of the caregiver.
“Talk about the challenges of caregiving and maybe delegate some of the tasks,” she said.
Seek those who know
Lenard Peterson said he has avoided depression by seeking out others going through the same experience. He and several spouses of patients at the Hampton Alzheimer’s Care Community in Vancouver formed a close circle of friends they dubbed the Hampton Honeys. They met as part of a weekly support group for family of people with dementia. But now, they make plans together outside the support group.
The group decided this year to spend Christmas Day together after spending Christmas Eve with their respective families.
“I don’t know how I would get through this without this group,” Peterson said.
The Southwest Washington Agency on Aging and Disabilities keeps a list of support groups for those experiencing Alzheimer’s. Call 360-694-8144.
Enjoy what you have now
Barry Davis said living with his wife’s Alzheimer’s has taught him the importance of living in the present and appreciating what you have.
“The only thing that’s changed is I’ve learned to settle down and to enjoy what life I have,” Davis said. “I’ve learned you don’t let things bother you. A lot times you worry about things that don’t happen anyway, and you’ve wasted all that time.”