When you are small and your biggest worry in life is whether or not you are on Santa’s naughty list, Christmas and the holidays are full of pure and unadulterated magic. It isn’t until you get older and hardened a bit by life’s struggles and journey that you realize these times can bring a bit of sadness and stress for some. My perspective on Christmas shifted when our mom was diagnosed with a rare form of dementia called FTD.
For the majority of my life, my mom was the reason holidays like Christmas were so memorable.
She was a die-hard traditionalist. She never skipped out on baking Christmas cookies and buying matching pjs for the five of us. She sent Christmas cards with handwritten notes and there was always a lasagna or stuffed shells on the table on Christmas Day. She created a warm and welcoming holiday home that was filled with family and friends. She cooked and cleaned tirelessly and showered everyone she loved with gifts. Nobody left empty handed.
She would bust her ass for days before the holiday so that everything was perfect, right down to the tiny details of her tablescape. (Something I have yet to master.) Her energy was abundant. She would go hard until the last dish was washed. And only then would you find her snuggled on the couch, finally catching a nap, fireplace quietly flickering in the background, while the rest of the party stayed up late and shared laughs and stories from years past. She was a force when she was healthy. God, I miss her.
My mom is in the advanced stages of her dementia and, for the most part, she is housebound. Mobility is starting to become a struggle and things like stairs and unfamiliar, chaotic environments simply aren’t realistic anymore.
We have come to realize and accept that holidays with my mom will look much different.
It is better for her and her quality of life that she stay in her own home for the holidays. Like all aspects of dealing with this disease, we evolve with it. The pain is gut-wrenching at times but this is our life and our new normal and we must keep on trucking. Life must go on.
It is majorly important to me that I continue to do the things she would have done for herself and her family on the holidays, had she been well. I have been donned the family matriarch, which is an honor and also a back-breaker, but I can handle it because she always told me so. She took her holiday swag seriously so I make sure to decorate her home like she would have–on a much smaller scale, of course. Giant wreaths are hung in her glorious picture windows and she gets to enjoy the most perfect little Christmas tree. It is dripping with that Christopher Radko sparkle. Her favorite. I find comfort in knowing she is safe and at peace in the confines of her own home under the selfless care of her dream team, Flora and Zena.
Now here is the silver lining: we are only a few blocks away. We will cook and eat our traditional seven fishes and celebrate like we always have and then we will then head over in groups to be with her, shower her with gifts, and feed her Christmas dinner.
I only hope she is at ease this Christmas. That is all we can hope for and my one true Christmas wish.
Writing this has given me a lump in my throat that feels the size of a grapefruit. I try to view life with a positive outlook but I won’t pretend that all of this doesn’t leave a huge hole in my heart. I miss my mom, especially during the holidays. The grief can be overwhelming when I think about her sitting in her chair looking out her window, especially at Christmas while we are all going on with our lives. But, I try not to go to that place for too long. It’s too sad. I know she would have given her right arm to be with us on the holiday she worked so hard to make memorable for all of us. I have come to accept that our new normal is bringing Christmas to her and that is more than okay. I will honor her by doing my part to create warmth and magic in my home for years to come.