Just the Facts and More: Holidays

For most families, holidays are filled with opportunities for togetherness, sharing, laughter, and memories. But holidays can also be filled with stress, disappointment, and sadness.

Because of the changes (s)he has experienced, the person with Alzheimer's may feel a special sense of loss and time passing during holiday seasons. At the same time, caregivers may feel overwhelmed in their effort to maintain holiday traditions on top of caring for the person with this disease. In addition, caregivers may feel hesitant to invite other family and friends over to share the holiday for fear they will react negatively to the changed behavior of the family member.

If you are feeling guilty, angry, frustrated, or trapped before, during or after holiday celebrations, it may help to know that these feelings are normal and that you are not alone. Here are some suggestions that may help to ease the burden of caregiving and make holidays happy, memorable occasions.

Action Steps

Adjust expectations.

Discuss holiday celebrations with relatives and close friends. Call a face-to-face meeting or arrange for a long-distance telephone conference call to discuss major holiday celebrations. Make sure that family members understand the situation and have realistic expectations. By discussing past celebrations, you may be able to agree on how you will handle upcoming holidays.
Give yourself permission to do only what you can reasonably manage. No one can expect you to maintain every holiday tradition or event. If you have always invited 15-20 people to your home, consider inviting five for a simple meal. Also consider asking others to bring dishes for a "potluck" meal or to host the meal at their home.
You may wish to familiarize others with the situation by composing a letter that makes the following points. Here is an example:

"I'm writing this letter to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.

"You may notice that _____ has changed since you last saw him/her. Among the changes you may notice are _____ . I've enclosed a picture so you know how _____ looks now.

"Because _____ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable. Please understand that _____ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do I. Please treat _____ as you would any person. A warm smile and a gentle touch on _____'s shoulder or hand will be appreciated more than you can know.

"I would ask that you call before you come to visit or when you're nearby so we can prepare for your arrival. Caregiving is a tough job and I'm doing the very best I can. With your help and support, we can create a holiday memory that we'll treasure."

Involve the person with Alzheimer's disease.

Throughout all stages of preparation, involve the AD person in safe, manageable activities. This can help to prepare the person for the holiday and give you an opportunity to spend quality time together. You may want to begin slowly by asking the person to help you prepare food, wrap packages, hang decorations, or set the table. (Avoid using candies, artificial fruits/vegetables, or other edibles as decorations. Blinking lights may confuse the person.)
Maintain the person's normal routine so that holiday preparations don't become disruptive or confusing. Remember: Taking on too many tasks at one time can wear on you and the impaired person. Try to blend seasonal rituals into the daily activities that you both depend upon, such as taking a relaxing walk.
Build on past traditions and memories. Your family member may find comfort in singing old holiday songs, for example. But also experiment with new holiday traditions, such as renting seasonal videos that the less active person may enjoy.

Adapt gift-giving.

Encourage useful gifts. Among the practical, useful gifts for people with this illness are identification bracelets, comfortable, easy-to-remove clothing, audio tapes of favorite music, videos of family members, photo albums, subscriptions to magazines or cable television or gift certificates for long distance telephone service.
Warn people about difficult or unsafe gifts. Advise people not to bring dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment or pets.
Allow the person to join in gift-giving. For example, someone who once enjoyed cooking may enjoy baking cookies and packing them in tins or boxes. You may also want to buy the gift and allow the person to wrap it.
Don't neglect your own needs. If friends or family members ask what you want for a gift, suggest a gift certificate to a carryout restaurant, laundry or dry cleaner, or cleaning service. If you don't receive these gifts, celebrate the holiday by giving such a gift to yourself.
Ask for help and support. Develop a bulletin board for listing tasks and responsibilities. If someone ever asks, "What can I do to help?" you can respond with a specific idea.

Try to be flexible.

Consider celebrating over a lunch or brunch, rather than an evening meal, to work around the evening confusion or sundowning that sometimes affects some people with Alzheimer's. Also consider serving nonalcoholic drinks and keeping the room bright.
Prepare to deal with your post-holiday letdown. You may want to arrange for in-home care so you can enjoy a movie or lunch with a friend and reduce post-holiday stress.
Remember that holidays are opportunities to share time with the people you love. Try to make these celebrations easy on yourself and the person with Alzheimer's disease so that you may concentrate on enjoying your time together.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Judy Wunsch, Volunteer Coordinator, Los Angeles Chapter of the Alzheimer's Association.

This fact sheet was also based in part on "Home for the Holidays," a pamphlet developed by the Alzheimer's Association of California Council.

Special thanks to the following Chapters of the Alzheimer's Association: Virginia, St. Louis, Detroit, Cleveland, Portland, San Francisco, Lincoln, Des Moines, Honolulu, Denver, Louisville, Chicago, Western North Carolina and Orange County. Special thanks to the Duke Alzheimer's Family Support Program, Duke University, Chapel Hill, North Carolina.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.