ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Thursday, December 19, 1996 TAG: 9612190089
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE: DARRYL E. OWENS KNIGHT-RIDDER/TRIBUNE
For most people, the holidays mean family gatherings where the young and old get together to share good times and good memories.
Those get-togethers are not so carefree, though, in families where one member is a caregiver and one is a relative suffering from a disease such as Alzheimer's or other debilitating problems associated with aging.
But with creative planning and family cooperation, the holidays can be less stressful for those involved.
``The holidays tend to be a stressful period for all of us,'' said Terri Hosto, a research instructor in neurology at the Washington University School of Medicine in St. Louis, Mo. ``If someone is in a caregiving situation and trying to do additional things to keep up with the family traditions, trying to do all those things will add to the physical fatigue and emotional stresses of the day.''
More than seven of every 10 people with Alzheimer's disease live at home, and family and friends provide nearly 75 percent of their home care. Alzheimer's is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior.
Depending on the stage of the disease, holiday plans may have to be modified to accommodate the relative living with Alzheimer's. For many families, these changes have become commonplace - 19 million Americans say they have a family member with Alzheimer's, according to the Alzheimer's Association.
One in 10 people over 65 and nearly half of those over 85 have Alzheimer's disease. A person with Alzheimer's can live from three to 20 years or more from the onset of symptoms.
Approximately 4 million Americans suffer from the disease.
Holidays can have a different feel to them when a relative is suffering from Alzheimer's or from a related condition such as Parkinson's disease, a degenerative disease of the central nervous system, or Huntington's disease, an inherited, degenerative brain disease.
The relative with Alzheimer's might not be able to participate in activities as before. It can be difficult for family members unfamiliar with the symptoms of the disease to understand why Grandpa repeats himself, forgets his name or confuses his granddaughter with her mother.
``Visiting family members may be upset by changes in the person with Alzheimer's, or make demands on that person that he or she cannot handle,'' said Maurine Behrens, a professor of psychology at Whittier College in Whittier, Calif. "And these [situations] make the primary caregiver's lot - as mediator - much more stressful.''
Family members may feel under pressure to make things as normal as possible if it is the first holiday after the diagnosis, said Loretta C. Buffer, assistant professor of adult development and aging at Virginia Tech.
If grandmother has been institutionalized, the celebration shifts locale. Gift-giving may change: Relatives may shower her with nightgowns rather than perfume or jewelry, figuring she no longer has need for gifts without a useful function.
Still, experts agree that much of the stress and many awkward moments that could potentially wreck the holiday celebrations can be stamped out by adapting the following strategies to suit your family's makeup:
*Allow the primary caregiver to call the shots. Because she has the inside track on the condition of the Alzheimer's patient, it's a good idea to funnel holiday plans through the primary caregiver.
``The caregiver should be in charge of saying what should happen - don't let `the children' or other family members push you into trying to do things as they have always been done,'' Behrens said, ``unless that is reasonable to you.''
Get other family members to shoulder as many responsibilities as possible, she said. And don't be afraid to back out of an event at the last minute if the relative with Alzheimer's is having a ``bad day'' - or if you are.
*Simplify. Perhaps in the past, holiday gatherings included everybody. But now large, boisterous groups may confuse or even frighten the ailing relative. They often are confused by several conversations in the same room. Schedule several small gatherings instead of one grand family supper. And remember, a stampede of all of your relative's grandchildren may not be best.
*Incorporate activities into the routine of the ill relative. Just because you have always carved the ham after watching Thanksgiving football doesn't mean that tradition should be etched in stone. Many holiday activities unfold in the evening, but perhaps the relative with Alzheimer's is at his best at midday. Pencil in the carving for earlier in they day.
``Do we have to do all the things we used to do before? What are the objectives, what are the goals?'' Hosto said, noting that families should be more interested in sharing company than gorging themselves at a specific time.
Being flexible ``doesn't mean you can't keep the meaning of your tradition, but it does mean you might have to substitute new ways.''
*Be flexible. In the past, Christmas wasn't Christmas unless Grandpa assembled his miniature version of the B&O railroad around the tree. With Alzheimer's at work, the train tradition may be derailed. If so, let it go.
``We need to be flexible, to not force an activity to its completion. If an [Alzheimer's patient] becomes restless, they don't have to finish completing the decorations on the Christmas tree,'' Hosto said. ``Or perhaps you can break activities down into smaller chunks.''
In addition, caregivers might consider giving family members a primer on Alzheimer's before the festivities, explaining what to expect, how to react and what not to say.
``I think that it's important to prepare the people we spend the holidays with for the changes in the person,'' said Hosto, a social worker in the Washington University's Memory and Aging Project, ``so that we can still spend some quality time together.''
Likewise, just because a relative with Alzheimer's is now living in a nursing home doesn't mean they can't enjoy the holidays with the family.
Half of all nursing home patients suffer from Alzheimer's or a related disorder. Still, there's a lot of activity buzzing in nursing homes this time of year with community groups, churches and families floating in and out with crafts, flowers and good cheer.
*Take the holidays to your relative.
``Institutionalized Alzheimer's patients need the same love and attention as those in home settings,'' Buffer said.
Families can decorate his or her room with familiar holiday symbols, share in the nursing home's holiday programs and bring favorite holiday treats. Research shows that Alzheimer patients lose their sense of taste more rapidly than ``normal'' older adults, but that the taste for sweets is the last to go. If the center has no dietary restrictions, slip Grandpa some marzipan.
If possible, take your loved one out for a drive to see the holiday decorations.
What's important to remember is that while Alzheimer's disease renders the patient childlike in the final stages, it's important to continue to afford loved ones the dignity they deserve.
``Families need to take a positive attitude to the whole situation. Typically they spend too much time on `Poor old dad, he can't do this, he can't remember that, he's all confused,''' said Trish Parfitt, director of family services at the Alzheimer Resource Center Inc. in Orlando. ``Think of all the things your loved one can do. Love him for who he is now and be thankful for those things at this time of year. Consider the blessings and the love of the season, because it is so important to share that with your relative.''
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