Holiday Tips for Caregivers

Holiday planning with dementia

Preparation for the holidays can be stressful and tiring even under the best of circumstances. For families and caregivers of individuals with dementia, the holidays are often sad and difficult. However, with acceptance and planning, they can be sources of great meaning and enjoyment.

Traditional family activities may have to be adjusted. Set limits early, stick to them and be clear about them with others. You do not have to live up to the expectations of friends or relatives.

Try to avoid situations that may confuse or frustrate people with dementia:

• Crowds of people who expect the person with dementia to remember them

• Noise, loud conversations or music

• Strange or different surroundings

• Changes in light intensity — too bright or too dark

• Overindulgence in rich or special foods or drinks

• Changes in regular routine and sleep patterns

If possible, schedule activities — especially some outdoor exercise early in the day — to avoid the fatigue of added activity at the end of a long day. Holiday music, storytelling, singing or church services (even on TV) may be enjoyable.

Preparing for the holidays

Before you make holiday plans, take time to think about what you wish to achieve from your holiday festivities. Is the mere presence of your loved one with dementia at family gatherings important? Which traditions are the most important to your family? Is simply spending time together with family and friends — regardless of the activities involved — the primary goal?

During the hustle and bustle of the holiday season, be sure to get adequate rest. Try to allow some quiet private time for yourself. Caregiver support groups can be especially helpful during the holidays. Protect your health and your sense of humor, and let others help you.

Involving the person with Alzheimer’s

Consider the level of functioning of the person with dementia. How will you be able to incorporate holiday activities into the person’s routine? For example, it may be best to have visitors or plan outings during the day to avoid evening restlessness or “sundowning” that affects some people with dementia.

Think how the person can safely participate in holiday preparations such as helping you hang decorations, wrap gifts, set the table or prepare food — just avoid using potentially distracting decorations such as candy, popcorn or artificial produce and remember that garlands and blinking lights may confuse the person. Substitute new activities for ones your

loved one can no longer take part in. Take your loved one out for a drive to see others’ holiday decorations.

Maintain the person’s routine so holiday preparations don’t become disruptive or confusing. Remember that taking on too many tasks at once can wear on you and the impaired person alike. Try to blend seasonal rituals into daily activities you both depend upon, such as taking a relaxing walk.

Consider your own abilities and resources as a caregiver, and do only what you can manage. Take inventory of the people and organizations you may be able to ask for help. Some experienced caregivers might suggest you ask for help before you feel you need it.

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 playing seasonal videos that a less active person may enjoy.

With careful thought and advance planning, you and your loved one will be able to share a meaningful holiday season.

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.

Holiday gift ideas

Selecting holiday gifts for individuals with dementia can be challenging, because there are many things to consider. Be mindful of where the individual is living, as this will influence the kind of gifts that will be appropriate.

If the person is in a facility, make sure to ask the staff what is best. Finding useful and appropriate gifts for people with dementia can seem difficult. Yet, there are a number of excellent gift options to meet an individual’s needs at every stage of the disease.

• Look for items the can mitigate the problems caused by short-term memory loss. For instance, electric coffee makers and teapots with automatic shut-off, day planners to keep track of appointments and special occasions, medication holders with timers that can be set to signal when doses need to be taken, and ID bracelets purchased through the Alzheimer’s Association’s Medic Alert ® Program. Contact the Hudson Valley Chapter to learn about financial assistance opportunities for this program.

• Moderately impaired individuals usually have

some difficulty communicating and need help with daily activities. Appropriate gifts include easy-to-manage clothing, such as tube socks that can’t be put on the wrong way, slippers with Velcro closings or gift certificates for hair salons or manicures. Other ideas include warm slacks, sweaters, leg warmers and comfortable jogging suits/sweat pants that are easy to get on and off.

• Peaceful posters can brighten up walls and ceilings.

• Pictures of family members can provide a meaningful focus of conversation with staff and others. It is helpful to label photographs with the names and relationships of those pictured. Family photo albums also

should be labeled with names and dates next to each photo, although it’s important to remember not to give anything irreplaceable if someone is living in a facility.

• Materials to sort through with varied sizes, textures and colors can provide mental stimulation.

• Exercise videos designed for the chair-bound can encourage activity.

• Although it’s important to remember that someone with Alzheimer’s disease is not a child and should not be treated as such, the degree to which the person has regressed should be considered. Cuddly stuffed animals are often a comfort to people with late-stage dementia and many women enjoy having a baby doll to hold. Soft pillows and afghans are also a welcome gift.

• Another popular gift idea is a bird feeder with recordings of bird songs. Feeders come in a variety of styles, from small ones that can stick on windows to freestanding feeders

for yards or gardens. The person with Alzheimer’s will enjoy watching the birds at the feeder and can often be prompted to fill it with seeds when needed — an activity the individual and the caregiver can enjoy together.

These are only a few of many gifts people with dementia could enjoy. People with Alzheimer’s disease may not recognize the event or holiday as it happens, but even the most impaired person will feel the love included in the gift you give.

Gift idea list

When others ask you what the person with dementia might enjoy for gifts, encourage them to think along practical lines.

Here is a quick list of gift suggestions for family members and friends who are looking for ideas:

1. Electric coffee makers or teapots with automatic shut-off

2. Large desk calendars to mount on the wall

3. Medication holders with timer to indicate when to take them.

4. Photos or videos of family members and photo albums with names and dates next to each picture

5. ID bracelets or registration in the Alzheimer’s Association’s Medic Alert® Program

6. Simple-to-manage clothing such as tube socks, easy-on sweatshirts or tennis shoes with Velcro closings

7. Gift certificates for haircuts and manicures

8. IPods with recordings of the person’s favorite music, including from the era when they were young

9. Recordings of sermons or church services

10. Cuddly stuffed animals or baby dolls for people in the later stages.

11. Tickets for musical events

12. Trips to a shopping mall and lunch.

13. Visits to a local senior center to participate in activities.

14. Bird feeders and recordings of bird songs

15. Gift certificate to adult day care services

16. Subscriptions to magazines or cable television