The holidays are supposed to be a joyful time, full of celebration with family. But for caregivers and the millions of people living with Alzheimer’s disease or a related form of dementia, the holidays can be nothing short of overwhelming.
The holiday season brings additional financial strain, a disruption in routine and many more unforeseen commitments that can contribute to caregiver stress. Read how one daughter sees through the holiday stress and finds peace with her father’s dementia through the holidays.
Finding Triumph in Tragedy: Christmas with Alzheimer’s
Colleen Carrol Campbell is an author, broadcast journalist and a former presidential speechwriter. In a recent post on Maria Shriver’s blog, Campbell opened up about her father’s Alzheimer’s and the impact it had on her family’s Christmas celebration.
Her father, a devout Catholic, loved Christmas and would stay up late putting together toys on Christmas Eve, rising early Christmas morning to watch his children open their gifts. It was a very special time for their family so that when Alzheimer’s came, the changes in Christmas were apparent and devastating.
Campbell shares how she found writings of her father’s favorite saint, Therese of Lisieux, who was coping with her own father’s illness. Saint Therese found meaning in her father’s illness, seeing that as the importance of earthly possessions fell away, her father was becoming more childlike in his faith, which she believed was making him better prepared for eternity. Similarly, Campbell began to see that her father’s dementia was leading to an increase in his own faith, hope and love despite the progression of Alzheimer’s. She states:
“I realized that Dad’s irrepressible joy — undimmed by Alzheimer’s and particularly apparent during the holidays — could be a Christmas gift all its own, if I could see the season through his eyes and celebrate it at his pace.”
While she admits this did not ease the agony of Alzheimer’s, it did help her bear the burden of the diagnosis, especially around the Christmas season.
New Ways to Celebrate the Holidays
For many caregivers, the holidays can be stressful and a reminder of what Alzheimer’s has stolen.
Here are some great things to remember to help keep your holiday joyful as the season is upon us:
- Celebrate small moments of success. Maybe this is the year your Christmas cards don’t go out to 100 people, but instead, they go to your 10 closest friends. Maybe this is the year for one tree, instead of three. Finding important traditions that you can keep while toning down extravagance can help save money and time while reducing stress.
- Create a safe environment in your home. Keep decorations simple and avoid using candles. Make sure there is plenty of space in your home for someone to assist your loved one, if needed. Keep aisles and walking spaces clear and plan where your loved one will sit at dinner to best engage in conversation and make an easy exit.
- Have a quiet room. Make one place in your home a quiet room specifically for your loved one to escape to if things get too loud. This can give them a place of security in chaos and also give them confidence in social events, knowing they have a quiet room waiting, if needed.
- Include your loved one in holiday preparations and celebrations. It’s the holidays for your loved one too, and including them by inviting them to decorate cookies or wrap gifts are great ways to involve them in the season. In later stages of the disease, a gentle touch or kind word is a great way to let them know they are acknowledged and involved.
- Join a support group. Being around people who know what you are going through is crucial to relieving caregiver stress and preventing burnout.
- Know who to call for help. Aside for family and friends, caregivers can call the Alzheimer’s Association at: 727-578-2558 or the 24 hour helpline at: 1-800-772-8673 for assistance, to answer questions and help people with dementia and their caregivers. The hotline is open year-round, including Christmas Day and New Year’s Day.
- Maintain a normal routine and schedule as much as possible. The holidays bring a number of additional commitments and parties, all of which are fun and a great way to partake in the season. However, keeping your routine and schedule can help bring your loved one peace and security in a busy and often stressful time.
- Prepare out of town guests and be forgiving when mistakes happen. Try to let visitors know what your loved one is going through and any known behavior issues before they arrive. If guests do or say something hurtful, give grace and try to let it go at least for now.
- Realize that you don’t need to attend every party you are invited to. Giving yourself permission to say no to social obligations can free up your time and your mind to say yes to relaxing, holiday preparations or spending time with loved ones.
- Tweak and adapt existing family traditions, if necessary. If your family has consistently done a late Christmas Eve dinner but you know your loved one has trouble sleeping at night, consider changing your family tradition to a Christmas Day brunch. In the same way, do what you can to tweak existing conditions in a way that will better involve your loved one. For example, if your family gathers around the piano to sing holiday classics, pick a few your loved one will remember. Or, spend some time going through old photo albums, remembering past family holidays.
Do you have any tips for celebrating Christmas with Alzheimer’s or managing caregiver stress throughout the holidays? We’d like to hear your suggestions in the comments below.