I always thought about what my Mom was still able to DO and not what she couldn’t do, so I created craft and decorating opportunities on what she could still participate in.
The holiday season is the perfect occasion to celebrate with the people you care about the most. Although full of festivities, holidays can also be challenging, especially for people living with dementia and other neurocognitive disorders and their loved ones. Just because the holidays hustle and bustle can be bittersweet does not mean that they are without joy, love, and connection for people living with Alzheimer’s and other dementias. As the former care partner for my Mom with mixed dementia, we always found ways to celebrate and enjoy the season together by focusing on living in the moment, setting boundaries, and planning ahead for specific holiday events.
My focus as her caregiver during the holidays was to create memories together. Even if my Mom was unable to remember these events, she was able to enjoy and live in the moment while we were participating in the holiday activity. I constantly thought about what my Mom enjoyed doing before her dementia diagnosis (cooking, crafting, decorating, etc.) and modified those activities to allow her to be successful in still participating. We still baked cookies together, I just would pre-measure the ingredients and allow her to help me in pouring the ingredients, mixing, and of course enjoying the cookies together. I always thought about what my Mom was still able to DO and not what she couldn’t do, so I created craft and decorating opportunities on what she could still participate in. She couldn’t put the tree up, but she could still help put ornaments on the tree or fluff out the fake tree branches. By allowing her to help with these activities, it helped to maintain her dignity and allowed her to feel helpful and connected to the holiday.
Set Boundaries, Plan Ahead
In addition to focusing on allowing my Mom to still participate in the activities she loved with support, we also set boundaries around holidays to help support the stress. As her caregiver, I learned how to say no to activities that were not going to bring us joy. We would often choose to attend events that were in a small group setting or one-on-one because they would be the most supportive for my Mom’s ability to process and enjoy her time. In addition, I would often plan a day (or two!) of rest after a busy day. It would help us to maintain a familiar routine and not feel burnt out. Do not shy away from asking for help and giving friends/families specific tasks to help with. It was often supportive for me to ask my sister to send a meal or do a grocery delivery, so that I could focus on enjoying the time with my Mom rather than focusing on all of the tasks that surround holidays.
It was also important to have a plan in place for all fall/winter activities we had scheduled. We would think carefully about time of day for the activities we chose to attend (mornings/afternoons were easier rather than evening when my Mom was sundowning). We also thought about how many people would be there, accessibility for events, and noise level. It is also helpful to prep family and friends about the changes that may be occurring in your loved one ahead of time, so they can develop a plan to communicate effectively and with kindness.
Live in the Moment
Holidays are supposed to be a time for joy, love, and connection. Granting yourself (and your loved one) grace and patience, while keeping love and connection at the forefront, will help with planning and keeping spirits bright. Holidays may look different, but my Mom and I still found joy together in singing songs, decorating, and enjoying favorite holiday treats together.
Something that I learned as the care partner for my Mom with dementia was to live in the moment. My Mom was never thinking about what had happened before or what was going to happen next, she lived in that exact moment. So take a breath, look around, and enjoy the moment you get to share with your loved one. Holidays can be exhausting, chaotic, and amazing all mixed into one, but try to enjoy every moment you get to share together because one day you will wish for another day together. •
- Check out Patti LaFleur's website: 'Shining a Light on Dementia as the care partner for my Mom with dementia, type 1 diabetes and in a wheelchair'
- Follow her caregiving story on Instagram, Facebook
- Article on TODAY: A caregiver shares how she found joy caring for her mom who lived with dementia (Nov. 15, 2022)