I love my mother very deeply. As her primary family caregiver, I am most in touch with her daily rhythms, I yield and honor the power to make decisions about her quality of life on an hour-by-hour basis. She lives in a home now, behind locked doors meant to keep her safe from interacting independently with a world she no longer understands. Her former self would never have tolerated life without her freedom.

Mostly I am past the daily ache that comes from knowing her independence has been permanently taken from her. Today, I savor the little things that make life joyous for her and for her loved ones who visit. Her caregiver companion Melinda picks her up several times a week and they take walks in the park and always stop in for blueberry pancakes at IHOP. Just try and convince her that maybe this time she might like banana pancakes! If only to preserve our own souls, Mom’s loved ones must keep their relationship with Mom intact, who we must occasionally address as “Martha”, as she no longer recognizes herself as “Mom”. We put aside our sadness and enjoy our brief hours with her.

I am getting married in a few months and I worry that I can’t protect her from suffering what I imagine could only be an onslaught of over-stimulus that will come when 50 family members give her hugs and share a smile. But I know that being surrounded by family again is what she truly wants. I have poured every ounce of creativity into giving her the best chance that this time will be joyful and give her loved ones peace.

Mom is a photographer. Her 1991 photograph is the background for Adam’s and my wedding invitation. The photograph’s colors are the inspiration for the wedding flowers and bridesmaid dresses. It thrills me to have found a way to connect her spirit to my wedding, to find a way for her to participate and in the creative way she would have loved the most. She would tell me she was proud of me.

Mom has always loved massages. Having lived a lifetime where PTSD and frequent bouts of anxiety nipped at her spirit, massage brought her peace. I decided to schedule weekly massage for Mom with the hope that repetitive exposure to positive touch and direct human interaction would help her remain calm when family arrived for the wedding. Maybe, just maybe, she would make it through the wedding pictures and the ceremony before her energy waned. Maybe after an hour’s rest, she could join us and enjoy the reception at the NC Museum of Art, atmosphere infused with soothing music emanating from the Integrity Strings trio. Would it be too much? Perhaps I shouldn’t hope for her to be there when our cake is cut.

After about three weeks of massage, I began receiving reports from Melinda, from her home caregivers, and from her therapist that something transformative was happening. After her massage and up until late the following day, Mom spoke in full sentences. Rather than describing her environment in broken sentences, “Fluffy, quit talking” that must be translated into “let me enjoy the clouds passing by with peace and quiet”, she came out of her inner world and interacted with the people around her. “Hello, what a wonderful time. That felt good.” “Where are we going next?” If I asked her about her massage a few hours later, rather than ask me “What massage?” I would hear reports of “I liked that” with full arm expressions and joy in her face.

The ice storms disrupted Mom’s outings and weekly visits to Hands On Health. Needless-to-say, her home’s caregiving staff pulled me aside and begged me to find a way to get Martha back on the massage table and back to her routine outings. They could practically touch and taste her boundless energy that found no outlet but to pace, walking in circles around and around. Well, most certainly!

Does massage matter for Martha? Is her spirit enlightened? Does all that matter? What if those brief moments too are forgotten by her? Should I therefore limit her massage time, deciding it is too expensive?

Perhaps our April wedding will write the final chapter.

Written by Laura Landsiedel Ford

Originally published March 2015