"The holidays are great," said the man, 80, who takes care of his Alzheimer's-afflicted wife of 51 years. Thanksgiving is not only good for the person with the disease, he said, "it's also good for the care-giver because it gives them a chance to relax with other people."
The man smiled. And then he burst into tears.
The holidays are often hellish for families dealing with Alzheimer's and other conditions that produce dementia or loss of cognitive abilities.
The Hollywood man, for instance, was uncertain whether he and his spouse would be able to join their son in San Diego for Thanksgiving.
His wife has been suffering from a bladder infection recently, and her progressive brain disorder is constantly producing new deficits and complications. Since she became ill, the woman is anxious whenever she travels. Her husband worried that the unfamiliar pounding of the wheels of the train would unnerve her.
It is almost too much to bear, especially alone, the man made clear. When you have Alzheimer's in the family, he said before his tears drove him from the room in embarrassment, "everybody walks away."
At a recent workshop in Century City, the Los Angeles chapter of the Alzheimer's Assn. and the Westside Consortium of Senior Services offered Alzheimer's care-givers practical advice and the bitter solace of knowing that others are suffering, too.
"The holidays are often a very joyful time, but they can also be very, very difficult," said Lynn Morishita, program director for the Center for Geriatric Health at Century City Hospital.
The grown-up children of people with Alzheimer's routinely feel cheated, the experts said. The children gather around the table, remembering when Mom or Dad successfully stage-managed beloved holiday traditions, and they see only loss.
"Holidays carry a lot of emotional wallop," said Nina Luce, a Santa Monica marriage and family counselor who specializes in geriatric issues. "We remember how it was, and if we don't get it, we're crushed."
Holidays often precipitate a crisis among siblings, the speakers pointed out. Family members who live elsewhere often come home for the holidays only to discover that a parent or grandparent is much worse than they had realized from long-distance phone calls. Brothers and sisters sometimes blame the sibling who does most of the care-giving, who in turn typically feels overburdened.
The experts agreed that a good first step in dealing with Alzheimer's is to have a family consultation with a caseworker or someone else with expertise in dementia and the medical, emotional and legal problems it creates. The earlier the family begins to think about these issues, the better, they said. For example, the Jewish Family Service, Santa Monica, is a nonprofit agency that provides such services to anyone on a sliding fee scale.
The experts also recommended that the family arrange to have the affected individual evaluated at a good geriatric health center. Some of the deficiencies associated with Alzheimer's are treatable, they said. For example, better diet may help a little. "A lot of older people are living on toast and tea," Luce pointed out. A complete evaluation will not only reveal what's wrong with the affected person, but also help the family take full advantage of those abilities that remain, Morishita said.
Two sisters at the workshop admitted they dreaded the thought of Thanksgiving. They planned to fly to Arizona, where they were to have a turkey dinner with their father, then visit their mother, 66, who has been institutionalized with Alzheimer's for almost a decade.
"It's real depressing," the younger sister said. "They have all these (holiday) cards and ads on TV, and they just make you feel worse."
Morishita said such sadness is normal. The person with dementia "is here, but they are not the person they were." Their loved ones, she said, "are grieving all the time."
One reason the holidays are so difficult is that they underscore the role reversal that is one of the most painful aspects of dealing with dementia.
As Joyce Brunelle, who does public relations for the Westside consortium, said: "Two things that life never prepares us for are parenting and parenting our own parent." Unfortunately, she noted, the intense emotion that Alzheimer's triggers in a family often complicates the coping process, which involves making difficult decisions about everything from where the patient will live to who will control his or her money.
"You have to be very practical at this stage," Brunelle said. "You have to be very dispassionate about it."
The speakers urged care-givers to give themselves a break over the holidays. Less is more, the experts said. Don't try to replicate the lavish holidays of the past, but pick a few favorite traditions and concentrate on them. Simplified holiday activities are also easier on the person with Alzheimer's, who is often unsettled by changes in routine and unusual bustle and clutter.
Start to prepare the affected person for the coming holiday well in advance by marking the calendar, having daily discussions of what the family will do, playing holiday music and, when feasible, making holiday foods.
As Thanksgiving gives way to Hanukkah and Christmas, gifts become a problem.
People with dementia often enjoy videotapes of family members, the experts said. And Brunelle noted that some people like to give a donation in the name of the person with Alzheimer's to a charity that was especially important to him or her before life changed forever.