When Illness Mars the Joy : Health: The holidays can be difficult for patients and their caregivers. Experts suggest some simple, thoughtful ways to help both.
Calvin and Glenda Hamilton loved the holiday season.
But five years ago, Calvin, 69, a retired city planner, was stricken with Alzheimer’s disease. The couple rarely socialized and gave up such Christmas traditions as decorating their home and baking Glenda’s carrot cake.
“The holiday season used to be very heavy,” says Glenda, 54. Now, the couple has learned to adjust by reducing expectations and creating some new traditions.
They say, however, that friends and extended family are still uncomfortable with the situation. “It’s the outside people who seem to have the problems,” Glenda says. “There is a problem of wanting to celebrate the holidays and not knowing what gifts to give or how to talk to the ill person. They tend to stay away. That makes it harder for the caregiver. We need that social contact.”
Between the illness and other people’s reactions, the holidays can be especially hard for some patients and their families.
Family caregivers often struggle with extra duties, such as holiday shopping, but are also likely to feel more isolated and cut off from festivities.
Patients sometimes feel a sense of greater loss because they are unable to see friends or do what they used to enjoy.
Others--extended family, friends, neighbors and co-workers--can also feel uneasy, wanting to help out and to include the family in activities and yet not knowing how to approach them.
In dealing with a chronic or serious illness during the holidays, “the ultimate tool we have is the tool of empathy,” says Steven Boksenbaum, coordinator of the Cedars-Sinai Medical Center Brain Injury Programs. “If we can touch people, or see the world through someone else’s eyes, that gives people a sense that they are not alone in the world.”
Here are some things you can do for patients and their families:
Holiday Care for the Patient
* Create a pleasant atmosphere:
Illness can heighten common holiday depression. This is especially true if the patient is separated from loved ones or if the holidays don’t live up to expectations.
So do you attempt to cheer the patients up? Invite them to parties? Avoid asking about their illness?
Approach them with sensitivity and openness, says Dr. David W. Trader, chairman of the division of psychiatry at Century City Hospital.
“It’s good to try to cheer someone up,” he says. “But you should take cues from the patient and not try to inflict your own views and attitudes on them.”
For example, says Boksenbaum, if the patient wants to attend a party, try to arrange it. But don’t force activities on him or her.
If the activity involves travel, plan ahead to ensure their comfort, says Sheila Moore, coordinator of the Alzheimer’s Disease Institute at Century City Hospital.
“If, prior to the disease, they have been used to traveling, they may be more apt to try to keep doing it,” Moore says.
* Keep them active:
People who are ill tend to give up on all their plans.
“Some people feel that, in order to appropriately celebrate, you have to do a lot,” says Dr. Philip J. Wilner, assistant professor of psychiatry at Cornell University Medical College in New York.
“But ill people have enough trouble getting out of a chair. And they say, ‘If I can’t do it all the way, I won’t do it at all.’ That’s a very common problem. But if you can’t do everything, do less. If you are much more modest in your approach, you are able to enjoy it more.”
* Talk about the illness:
Should you avoid discussing the patient’s health?
At social gatherings, people tend to pretend the illness doesn’t exist, says Boksenbaum. “It’s the proverbial elephant in the room. The patient is aware (he or she is) not up to par. They are struggling and sick. But they need to know they are not alone going through this. We recommend family members talk about the illness.”
And, says Wilner, “You don’t have to get intrusive or go into picky details, but ask: ‘How are you feeling?’ It allows the sick person to elaborate or not.”
* Don’t be afraid to give presents:
“People shouldn’t be inhibited from giving gifts, even if you don’t know what to give,” Wilner says. “The recipient is appreciative even if it isn’t the right gift. It’s just the fact they will be remembered.”
Focus on what the patient has always enjoyed, like music or books.
“Sick people are not that different from the way they were when they were well,” Wilner says. “If they like flowers, they still like flowers. Nothing has happened with their personalities. . . . People assume somehow those aspects of their personalities have changed. Even with dementia, not everything is wiped out. Those things they once liked, they will still like.”
Elderly people may enjoy pictures, either framed or in albums or collages, and these are gifts children can help make, Moore says. Family video tapes are another good gift. Easy-to-put-on clothing, like sweaters, sweat suits, robes and slippers, is appreciated.
Glenda Hamilton also suggests picture books or coffee table books about places the patient has visited. For people with dementia or Alzheimer’s disease, get simple puzzles and coloring books and markers or paints.
“A set of washable magic markers and a pad is a good idea,” says Hamilton, who also takes care of her elderly mother. “Both of my people love art. It’s not demeaning in the least to get a simple color book.”
If you’re still stymied, consider a gift certificate or the gift of time or companionship. Moore says one woman asked friends to donate to an organization that provides respite care, temporary relief for caregivers.
Holiday Care for the Caregiver
Giving to the caregiver is a way of helping the person who is sick or disabled. “If the caregiver is doing well, the patient does better,” Wilner says.
* Send invitations:
Well-meaning friends assume the caregiver will be unable to attend holiday events or won’t be in the mood, Boksenbaum says.
“I recently had (one woman) mention that she was feeling sad because she hadn’t received the usual amount of luncheon invitations,” he said.
People shouldn’t shy away from sending invitations.
“It’s a good idea to offer,” Trader says. “The caregiver will decide whether or not she wants to go or take the ill one.”
* Offer to help:
Caregivers can easily become even more overworked than usual during the holidays. One woman, Trader says, cares for her mother, who had a series of strokes. She is torn about taking her mother to family gatherings this season.
“The daughter doesn’t get any help from the other relatives and knows if she takes her mother, (the daughter) is not going to have a good time,” he says.
For a caregiver who also has a family to shop and cook for, the holidays can be extremely stressful. Visiting relatives can provide relief if they are helpful. If they are not, “it just adds to the burden,” Trader says.
Caretakers, in their quest to brighten the holidays for the patient, often take on too much. They need to lower their expectations, Moore says.
“I think we need to say, ‘Maybe I won’t have that dinner this year. Maybe I’ll let someone else do that.’ ”
The hectic days sometimes mean that caregivers who attend support groups skip their meetings when they most need the extra encouragement.
“The more support that one has during difficult times, the easier it is,” Boksenbaum says. “And one of the greatest tools these groups provide in addition to emotional support is education and information.”
Perhaps the best gift relatives and friends can offer is to help the caregiver take time off to do things like attend a support group or have some fun.
“Give them some respite,” Hamilton says. “Caregivers are a proud, stubborn bunch. We have a lot of difficulty asking for help. Be very specific: ‘I would like to come over and give two hours so you can go shopping. What day would be a good day?’ Or, ‘I would like to pay for respite care and take you to the movies.’ ”
