Navigating complicated feelings

Holidays often trigger so-called anniversary reactions, when we become more painfully aware of how much a loved one is missed. People who have lost someone recently are especially vulnerable. The contrast between the expectations — we “should” be happy, we “should” be having a good time — and actual feelings can increase the pain of loss and loneliness. If at any time before, during or after holiday celebrations, you find yourself feeling guilty, angry, frustrated or trapped, remember your feelings are normal and you are not alone. If you anticipate the holidays may be difficult for you, here are a few suggestions:

1. Plan in advance for a holiday season that will meet your current needs. Determine what will be the most meaningful for you. Although traditions are a major part of the holidays, do not let what you have always done bind you to doing something that will not nourish or comfort you. Be able to let go and communicate when something needs to change. Consider holding a family meeting to discuss the upcoming holidays. Review all possible activities and decide what to continue, what to eliminate and what new traditions to begin.

2. Set realistic expectations. Set limits about what you can and cannot do and communicate them early to family members. Ask yourself, “Am I doing what I want to do or what I think others want me to do?” Avoid getting caught in the “I have to” or “I should” trap.

3. Talk to relatives and friends. More than ever, you are likely to need others, especially when memories of happier times get you down. It’s important to have at least one person with whom you can talk openly.

4. Make new memories. Reminiscing about holidays with a deceased family member is appropriate. Build on those memories, but avoid letting them dominate. Too many people reminisce about the past when they could make the current holiday season a new pleasant memory.

5. Give to yourself. All too often, people place their own needs last. Put yourself on your gift list, taking time to do or get something special for yourself.

6. Reach out to others. Some people find that their loneliness and pain decreased when they do something for another person or family in need.

7. Avoid alcohol and drugs. They will only compound your problems. Because alcohol depresses the central nervous system, it can cause depression or intensify existing depression and feelings of loss.

You don’t need to shut yourself off from the holidays, but you do need to make sure you are taking care of yourself during the emotionally charged season.

Holiday visits

The holiday season is a time for visiting and reconnecting with family, friends and neighbors. Traditions may help family members feel a sense of belonging. For someone with Alzheimer’s disease, this link with a familiar past is reassuring and builds self-esteem (ie., “Look at the beautiful family I created!”) But because of the changes he or she has experienced, a person with Alzheimer’s may also feel a special sense of loss and time passing during the holidays.

Encourage family and friends to visit the person with Alzheimer’s disease – even if it is painful for them. Keep the number of people visiting at a time limited, and try having a few people visit quietly with the person in a separate room. Most individuals with Alzheimer’s can pull it together for brief periods if they have adequate rest in between.

Preparing your guests

Explain to guests as clearly as possible what has happened to the person with Alzheimer’s disease. Give examples of unusual behaviors the person may display. Explain that while their behaviors may be inappropriate, the person no longer remembers what is expected or acceptable.

If this is the first visit since a family member became severely impaired, warn guests that the visit may be painful. The memoryimpaired person may not remember the guest’s name or relationship. Explain that the memory loss is a result of the disease and is not intentional. Emphasize that shared moments — and not what the person remembers — are what matter most.

Expectations and action steps

Discuss holiday celebrations with relatives and close friends. Call a face-to-face meeting or arrange for a long-distance conference call to discuss major holiday celebrations. Make sure family members understand the situation and have realistic expectations. Discussing past celebrations may help you decide how to handle future ones.

You may wish to familiarize others with the situation by composing a letter/email that makes these points:

“I’m writing this letter to let you know how things are going at our house. While we look forward to your visit, we thought it might be helpful if you understood our 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/attached a photo 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 other person. A warm smile and a gentle touch on _______’s shoulder will be appreciated more than you 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 best I can. With your help and support, we can create a holiday memory that we’ll all treasure.”

Preparing the person with dementia

If possible, begin showing pictures of your guests to the person with dementia a week before their arrival. Spend more time each day explaining who the visitors are while showing the pictures.

Arrange for a phone call for the person with dementia and the visitors. The conversation may help both. The call gives the visitors an idea of what to expect and gives the memoryimpaired person an opportunity to become familiar with the visitors.

Hints for happier holidays

As you see others gathering for the holidays, you may be overwhelmed with grief. Here are some coping suggestions:

1. Change traditions. Paradoxically, the more you try to make holiday festivities the same as they were before, the more obvious your loved one’s absence will be.

2. Balance solitude with sociability. Solitude can renew your strength, but being with people you care about is equally important.

3. Relive the happy memories. Pick several special memories of past holidays with your loved one.

4. Set aside some “letting go” time.

5. Counter the conspiracy of silence. Because family and friends love you, they may think they are doing you a favor by not mentioning your loved one for fear you will be upset. Break the ice by mentioning the person with dementia yourself. Tell your family and friends that it is important for you to talk about your loved one during the holiday season when that missing person is very much on your mind.

6. Find a creative outlet. Write a memorial poem or story about your loved one and share it.

7. Don’t forget the rest of the family. Try especially to make the holiday fun for the children. Listen and talk to them.

8. Utilize available resources. If faith is important to you, participate in holiday services. You may find fellow parishioners who can help you. Seek out a caregiver support group.

Visiting a long-term care facility

Holidays are supposed to be times of good cheer and happy memories. Having a loved one in a nursing home is not traditionally part of the “holiday scene.” It is hard to know how to include residents in festivities, what they might like as gifts and what activities they would enjoy most. The staff at your loved one’s nursing facility can provide guidance and suggestions.

People who are mentally confused often respond negatively to the usual high activity level of the holidays if the routines that provide them with a sense of security are disrupted. It may be unwise to take the person to a different environment with much noise and holiday excitement. If you wish to try including a loved one with dementia in the usual festivities, be sure to have a plan for someone to return the person to the care facility early, if needed. Often people with dementia tire rapidly and request to return to their nursing center. Rethink holiday outings if your loved one has had difficulty with family outings in the past.

Planning a smaller celebration earlier in the day may work best. Don’t expect the confused person to participate in old roles. Allowing the person to be an observer is often less stressful.

If you plan to celebrate with a nursing home visit, it is best to come in several small groups rather than one large one. Many nursing homes have social rooms that can be reserved for family gatherings. Reach out to the front-desk receptionist to see if this option is available at your facility. If so, be sure to book early.

If the resident is unable to converse, reading holiday cards out loud and reminding him or her of special times you’ve shared can provide comfort and a sense of connectedness.

Nursing homes have activities scheduled for the holiday season, and you are welcome to join them. Special prayers or scripture readings are often welcomed by residents — especially when they come from a family member or friend.

Plan to unwrap the resident’s presents and explain the purpose of the gifts. Because theft and misplacement are common in nursing homes, it’s also important to label items such as clothes and collectibles with the resident’s name.

Many residents enjoy a stroll around the nursing home with their families, whether it’s walking or in a wheelchair. It gives the resident a chance to show off his or her visitors. Ask if you can sit in the dining room and share a cup of coffee or tea, perhaps sharing some of your Christmas goodies — but be sure to check with facility staff first in case of dietary restrictions the resident might have.