Caregiving during the holidays

Over my last twenty years with the Alzheimer’s Association, I have found that one of the most joyous times of the year for our caregiving families is the holiday season. As families gather to celebrate their faith and family traditions, enjoy a meal together, or exchange presents, homes become filled with the scent of evergreen, the sounds of laughter, and the music of the season.

This time of year can also be one of the most challenging as well, bringing with it stress, disappointment and even sadness. The person living with Alzheimer’s may feel a special sense of loss because of the changes he or she has experienced. Those with early Alzheimer’s may experience minor changes. Some withdraw and become uncomfortable in social settings, while others relish seeing family and friends. At the same time, caregivers may feel overwhelmed trying to maintain traditions while providing daily care for their loved one.

With some planning and adjusted expectations holiday celebrations can still be joyous. The key is to check in with each other and agree that you may need to make some changes to the traditions that you’ve held dear.

If you know a caregiver offer them a helping hand, run errands for them and sit with their loved one so that they can go shopping and run errands. Plan the holidays together, focusing on the things that bring happiness and letting go of some of the activities that may seem overwhelming or stressful.

Rethinking holiday plans and simplifying them will help everyone involved. It may be something as simple as planning a movie night together to watch “It’s A Wonderful Life” or “Miracle on 34th Street” then putting on some holiday music and baking cookies.

Here are some tips for reducing holiday stress for those living with Alzheimer’s and dementia and those who are caring for them:

• Set expectations: Let guests know what to expect before they arrive and offer them ideas on how they can be helpful. Recommend activities that your loved one can do with them and share tips on how best to communicate with them. Keep in mind that simultaneous conversations can be challenging for people living with Alzheimer’s – try engaging them one-on-one, in a quiet part of your home.
• Involve the person with Alzheimer’s: Involve your loved one in safe, manageable holiday preparation activities that he or she enjoys. Ask them to help prepare food, wrap packages, help decorate or set the table. Avoid using candies, or artificial fruits and vegetables as decorations because a person with dementia may confuse them with real food. Bright blinking lights may also cause confusion. Be aware of your surroundings and how they may cause unnecessary stress and anxiety.
• Plan ahead: When attending a holiday party, prepare the host for special needs, such as a quiet room for the person to rest when they get tired, away from the noise and distractions.
• Adjust expectations: Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands how important it is to manage expectations and ask for help. You would be surprised how much others want to support the caregiver if you allow them.
• Let others contribute: Host a potluck dinner or ask others to host one in their home. Consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer’s from getting overtired and overwhelmed.
• Adapt gift giving: Provide your family and friends with a list of suggestions for useful, safe and enjoyable gifts. These may include comfortable, easy-to-remove clothing; CDs of favorite music; or favorite foods and photo albums of family and friends. If friends or family members ask, suggest a gift certificate or something that will help make things easier, like house cleaning, lawn or handyman services, laundry services, restaurant gift cards or even volunteers to visit with your loved one for an afternoon.
• Do a variation on a theme: If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit.
• Maintain a normal routine: Sticking to the person’s normal routine as much as possible will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest for yourself and your loved one.

If your loved one resides within a residential community, join them for their community’s holiday party. Encourage other family members and friends to come with you to this special event and take lots of photos while you’re there. After you’ve printed out the photos you can bring them with you during your next visit. The lingering impact from that joyous occasion will warm the heart of your loved one as they recapture that moment when you were all together and will give you an opportunity to recapture a warm memory for yourself, as well.

Please know that you are not alone. The Alzheimer’s Association is walking the journey with you and we want you to know that we are here for you when you need us most.

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.

Teresa Galbier is executive director, Alzheimer’s Association Rochester & Finger Lakes Chapter