Alzheimer’s Disease is called the “long goodbye” because of the physical and emotional toll this illness takes on patients and their caregivers given the terribly lengthy journey from onset to death. My blog, “Our Long Goodbye,” will chronicle my experiences with my 82-year-old mother’s late-stage Alzheimer’s.
I’m starting this blog for a few reasons. 1) I want to record my mom’s decline and our family’s experiences as we care for her. 2) I plan to tell my observations and perhaps even some of the stories of the other residents of Golden Age Assisted Living, where my mom has been living for the past year. 3) I am recommitting to a writer’s most important rule: pay attention. I have been visiting my mom at Golden Age two to three times a week for exactly one year this month. I’m afraid I no longer recognize the nuances of each visit, and I’m merely going through the motions of caring for her without realizing that every moment I have left with my mom (and with my 86-year-old dad) is a gift. My Aunt Effie (my mom’s older sister) said to me about my mom recently: “When she’s gone, she’s gone.” I knew immediately what she meant. My family and I recognize that there are some aspects of dying that are worse than death—like living with Alzheimer’s—but once my mom dies, she’s gone from us forever.
Truth is, we’ve been on a death watch for over a year. My dad and siblings and I cared for my mom at home for about five years, and my dad only agreed to let my mom go to assisted living after she suffered a series of strokes and no longer could walk on her own, use the bathroom, feed herself, communicate, or recognize any of us. My mom was in a state she would have absolutely hated and the last thing she wanted was to go to a nursing home. We expected her to come here to die. And in fact, each morning for the past year I have prayed for God to take my mom. When I got to know other residents at Golden Age, I added them to my list of daily prayers: Take away David’s pain. Let Delores and my mom die. Please take Rita soon.
I think of my aunt’s statement often. When she’s gone, she’s gone. Now I can hold my mom’s hands, put her lipstick on, do her hair, wrap my arms around her tiny frame when we sit on the edge of her bed. I can put my face close to my mom’s, and she still knows how to kiss. Though she hasn’t known my name for at least four years, and she hasn’t spoken a coherent sentence to me in over a year, she still likes to give me a big wet one every time I see her.
She is also still nosy, so I know some small part of her has to be in there lost in the fog of her plaque-covered brain. When she’s in the community dining room her eyes dart around the room, and she looks at the commotion at the women’s table. Sometimes she makes eye contact with me and raises an eyebrow in my direction, as if to say, “Will those old ladies ever stop bickering?!”
As with any debilitating, chronic, or terminal illness, a body goes on living long after a quality of life exists. These past seven years as I’ve cared for my mom, each year into her illness I have lowered my standards about what “quality” means.
Today I look around the Golden Age and consider what the residents CAN do: my mom can pick up tater tots and almost get them to her mouth (for a few moments it’s like an old Tim Conway routine . . . she lifts the food toward her lips and stops inches from her mouth so that I have to guide her by the elbow to get the food in). She can sit up straight in her wheelchair. She can kiss me. She can hold my hand. And the others: Eleanor can complain, which means she’s paying attention. “I didn’t get any dessert,” she yells. “Everyone else got dessert. Where’s my dessert?” It’s all one breath.
Margaret can walk the circumference of the building, even with her sprained ankle in a fuzzy booty. “It’s not that bad,” she tells me when she passes our table. She is living proof, at 93, that dairy farm wives are a tough bunch.
David can talk about the book I brought for him last week, Frauen: German Women Recall the Third Reich. He’s an Army veteran and former social worker who is one of the few residents here who does not suffer from dementia. After a few weeks of talking to him at my mom’s lunch table, it finally dawned on me that he’s here for health reasons, not memory loss like nearly every other resident. I offered to bring him what I would miss most if I was stuck here without loved ones or transportation: books and current magazines. He requested World War II biographies (German front only) and graham crackers, lots of graham crackers.
Today Frank can walk to the lunch table on his own—ignore the urine-wet front of his sweat pants—and sit beside me and drink a glass of juice and a glass of milk and return to his room entirely on his own. Last week he stayed in his single bed with his quilts snarled around his head.
I’m trying to be positive. Being here—with these ailments—has to be terrible, but then again for those of us among the young and healthy crowd, so are a lot of aspects of getting old and succumbing to illness.
Sandy looks at me across the table and smiles and nods, babbles like a nine-month old, plays with her fish sticks like she’s having the time of her life. Bernie says in my direction, “You come here right now.” And then she laughs and laughs. I could be anyone. She could be any place.