Adjusting expectations from the holidays: reflections from a family living with dementia — part 2
Traditions – customs or beliefs that are passed on over time. These can be a key part of the ritual or the experience of a shared event. They are something that can be counted on between people.
Traditions tend to be key parts of family celebrations, repeated year after year – birthdays, anniversaries, Christmas. But when your world is turned upside down through a diagnosis like dementia, traditions may be one of the first casualties. Everything changes. Traditions change too.
Paul was diagnosed with a progressive form of dementia many years ago. Anne, Paul’s wife (not their real names), became his full time caregiver.
The rituals of Christmas
Paul always loved the rituals of Christmas. He would spoil Anne rotten, buying her special gifts she would never purchase for herself. Cards were always carefully chosen and Paul always added in a hand written poem. He would buy the kids something special from himself, separate from the family, separate from Santa. He loved being part of the adventure of picking the perfect tree, cutting it down, decorating it. They even bought Christmas decorations throughout the years on trips as special keepsakes.
Dementia changed all that. The malls were too noisy and too crowded. The rituals of planning and cooking a large meal were not of interest. The special ornaments no longer had a meaning or a memory attached to them. The love and connection of gift giving and celebrating others were now lost on Paul – all impacts of the disease.
In the first few years following Paul’s diagnosis, the family tried to keep things the same. They joined the extended family celebrations; they continued their Christmas morning family time around the tree. But Paul was just not able to be present. He would ask why they were buying things they didn’t need; he refused to open any gifts and asked why they couldn’t just have hamburgers for dinner. His reaction to these traditional celebrations was upsetting and disorienting to the family.
A time they all looked forward to throughout the year was no longer the same. The traditions they enjoyed together as a family were no longer possible.
Establishing new ways to celebrate
It took several years, but with support, Anne and the family were able to establish some new ways to celebrate Christmas. For a few years they volunteered at a food bank, preparing meals, and serving them during the holidays. This was a simple, focused activity that Paul seemed to enjoy. More recently they started taking a family hike together on Christmas day, enjoying an easy meal by a fire afterwards.
The key to these new routines is to keep them simple and remove all expectations of what the event should be. The greatest gift is having your loved one “present” and participating in the moment.
“You have to go with the flow, change it up. Traditions are lovely but as anyone dealing with dementia knows, each day is different. Rather than fighting to keep things the same, embrace change and try to find one activity that will bring your loved ones together to share some joy, ”recommends Anne.
As the holiday season approaches, we hope this short series of articles has reached people living with dementia and their families, and has provided some new ideas to improve the holiday experience.