How Some Stories End
Words have been swirling in my head for days. But they’ve been in the making for years.
Her story began in Sioux City, Iowa where she was born. It continued in Minnesota where she married and started a family. It continued in Rochester, where she worked for years for Mayo Clinic. Where she walked countless three day, fifty mile walks to find a cure for MS. And eventually moved to St. Paul in retirement to be close to her brother and sister.
Our stories crossed paths when I met her son and married him two years later in 2000.
But this story began eight years ago after tests with a neurologist and the diagnosis of mild cognitive impairment. I don’t believe Alzheimer’s was spoken. In the coming years, it was only whispered.
A few years passed before we moved her from Minnesota to Georgia. Just three and a half miles from our front door. Three years later and two years ago this week, we moved her again to a memory care facility when she was walking to the grocery store along a mile stretch of a speedy country road. There were no sidewalks, only a rocky ravine for a shoulder and there was no perception of the danger in walking there. Even when she fell and gashed open her leg on the rocks, she was insistent there really was a sidewalk and it was completely safe. The bleeding gash was dismissed as nothing. For days.
Once moved into memory care, she would pack up her belongings almost daily, determined she was going to move back to Minnesota. Or her previous home down the street. We would unpack everything and I covered her room, photographs, furniture, wall hangings, and even toothbrush holder with post-it notes saying, “This is my home. I never have to move again.”
Alzheimer’s is a tricky beast and I don’t know that there’s anything anyone can say to prepare you for how devastating it is to watch someone you love disappear right in front of you. It doesn’t matter how many reminders are spoken. Or written on sticky notes around a one bedroom apartment. It doesn’t matter how tightly you grab a hold of their shoulders, face, or hands…the personality comes and goes. Vanishing and reappearing on its own accord.
My husband and I toured nearly a dozen memory care facilities. So many were filled with people in wheel chairs who looked like immobile zombies. His mom was still incredibly active and needed a home with vibrant staff and residents. It was a process of repeated city permitting delays in the building of one facility and the increasing dangerous situations for her that led us to change our choice on a memory care facility to one that was closer and opening sooner. At the time, it twisted our mouths a bit. We thought the larger facility farther away was the best choice. But fate has a way of working its way into our lives if we let it and we don’t push too hard for the way we think things are supposed to work out.
Camellia Place was founded by two women who were nurses and wanted to build a home perfect for their own moms in their last years. Perfect, even in the handling of Alzheimers and memory care. When we walked through their buildings and rooms, one person mentioned it was their goal to add more happiness into the days of their residents. Even if it was just one moment, that was important.
The last eight months, they have been hard. They have been filled with blood clots, hospital visits and ICU stays, infections and a declining appetite. Falls and staples in the back of the head. Walkers and wheelchairs. CNAs and hospice nurses. The physical disappearance matching the mental vanishing of a strong woman determined and successful in creating a life for herself where she would be a burden to no one. Fiercely independent, even to this last week.
And the last eight months have been filled with incredible kindness and love. In the care of a woman who always took care of others. Who loved growing hibiscus bushes and gerbera daisies on her deck. Who loved cooking feasts for others. Who loved pizza nights, oreos, and a freezer filled with cartons of ice cream. Who loved her son and daughter. And her grandkids. To the point that anyone who spoke with her knew about my own son and daughter.
The last three weeks have been filled with the sound of an oxygen concentrator humming non-stop. The sound of 80s music that she loved from Chicago and Neil Diamond. The sound of computer keys clicking and conference calls being conducted as my husband and I worked from her room to keep her company and make sure she was never alone. The sound of grandkids coming and going as we made sure we weren’t sheltering them completely from death and dying while also trying to maintain some normalcy in their teenage lives.
Timelines were guesses on days or weeks. Or possibly months. Alzheimers is a wild card that takes the medical certainty out of normal health proceedings and guestimates. Staff came to visit and love on her. To tell her how much her sweetness had brightened their work days for the last two years. Hospice nurses kissed her forehead and told her how much she was loved. I crawled into the tiny twin-sized hospital bed and snuggled in next to her with my arms wrapped around her waist and my nose buried in her shoulder. My people gathered in as we all put our hands on hers. And we let her know that she was not alone.
I don’t know how my story will end, just that I want to be loved on like this. By my children and grandchildren. With hands on mine, filled with love and kindness. Surrounded by people who know the value in creating happiness, moment by moment. Day by day.