“You gotta have heart to do this job,” Sieta said. Sieta was one of my mother’s caregivers and her long braids, wound like those of an African queen, and topped off by a bun at the crown, swung in the air as she turned away to pour my mother a glass of juice.
I tried to spoon lumpy cream of wheat through my mother’s pursed lips and wondered about the meaning of her current life. How would I define meaning? How would she? Would she feel there was meaning after being confined, imprisoned by dementia and a useless that would sway to Sinatra no more? And how would the assembly of caregivers, those who surrounded her and fussed over her every need, feel? Any different from me?
On a low dose of pain medication, my mother was still dressed in baggy pajamas and chewed and swallowed. But she seemed to be in a fog from the narcotics. At the intersection of pain medication for comfort after a hip fracture versus a state of constant wakefulness and distress for my mother, I had turned to the drugs.
She finished her breakfast. As she nodded off, I wheeled her into the courtyard. The day was warm with rain just spittin’. Before the broken hip, she would have yelled at me. But now, she didn’t. I chuckled a bit, getting away with something.
Having obtained my driver’s permit for her unwieldy wheelchair, I now steered her outside at all hours. I was more determined than ever to make her days refreshing ones, and fed her breakfast al fresco and we picnic-lunched with nippy ants.
Wherever she was in her disease, I wanted her to have the prickle of sunshine on her arms and a whoosh of fresh air in her face. Wherever she was going, I wanted her to have a some sense of the world until the end.
Did that give meaning to her life?
I returned to the theories my husband and I had batted about all week following the fracturing of her hip. Was she leading a meaningful life?
Was the honest answer No. No, she is not, and Sieta’s words about heart floated back into my head.
In the days after my mother’s accident and subsequent confinement to a two-wheeler, I sobbed and embraced the caregivers every time I scurried in and out of her room, the kitchen and the outdoors. I thanked each woman—and they were ninety-nine percent women—for whatever they had done, for whatever they were about to do, especially as it related to my mother’s bathing and cleansing. Self-care had been utmost to her, and therefore important to me.
I had always shied away from talking about my mother’s incontinence out of respect for her. Over the years, she underwent several surgeries and owned a digestive tract that never cooperated with what she wanted to eat. And she always wanted to eat, except when she was younger and went on a grapefruit diet.
Her early years with dementia were spent in shame after losing control of her bowels and soiling her clothing in public, or worse, church. Her condition was the cause of much hardship for my now-dead father and sister, Jeanne as well as for my mother and anyone else who cared for her. She and I often found ourselves twisted and tangled in a cramped bathroom stall of a Bob Evans, a city park or even in my own home, changing out her pants or socks into an article of clothing that belonged to my husband or son, eventually transitioning to Depends.
As my mother’s dementia worsened, her brain lost all bladder and bowel control organs. If I could have taken one condition away in all this, it would have been that embarrassment. I would have chosen for her to keep her dignity.
Yet, never once did any caregiver of my mother’s complain. They jumped or rushed to change her clothes to keep her comfortable. Not doing so would lead to a bladder infection that led to seizures that led to…that led to.
Back in bed, my mother lay with legs curled into herself, a flower calling her petals inward, unwilling to extend them for fear of hip pain. Two of my mother’s regular caregivers, Janice and Angel, bathed her ninety-year-old body. Her shower would come tomorrow with hospice help. For now, warm, worn washcloths tickled her tummy and the short arms and the legs she kept pulled in to her core. It was most sacred what I witnessed as Janice tenderly ran the cloth along my mother’s legs, under her arms and beneath her single breast.
Inside, I melted to see her so vulnerable. I was humbled by a level of servitude that I had not accomplished. Surely these women were angels.
A former boss of mine once said, Never ask anyone to do a job you wouldn’t do yourself. That was my mantra for my mother’s care. I did things when I had to, but also had the support of the caregivers who had performed a job nobody else would do.
Janice, her smooth face crinkled with worry, told me to text her while she was on vacation if my mother’s condition changed or worsened.
Kre, who grinned, her white teeth gleaming, leaned in and said, “Hello Mamma.” My mother beamed back.
Lakeisha, once employed as by the care home, now visited my mother as a hospice caregiver and my mother’s face lit up in Lakeisha’s presence. My mother loved her sassy attitude.
Jayna stressed out over not changing the residents immediately, yet in other care homes, there were residents who lay about all day in sopping sheets and undershirts.
My mother was best at mothering and the women here—Jayna, Kre, Lakeisha, Janice, Becky, Cleo, Valerie, Suzy, Sieta, Angel, Tiffany, Angela, Bobbi, (and so many other givers of care for one woman’s body and mind)—had been like daughters to her. I so desperately wanted them to know my mother as the woman she had once been, the one I was still pining for.
Yet they were content to love and care for the woman in front of them. While I, as family, felt as if her humanity was diminished, her caregivers still saw her growing into who she was.
Janice plated the meals for lunch, ladled gravy over the potatoes, knew who wanted cereal for lunch instead of chicken, who needed ketchup or Diet Coke, who still required sleep and who just needed to see her serene countenance.
Her face always fresh with light, Janice found us outside. With somewhat of a southern accent, she said, “Here you are my friend,” and set the plastic plate on the table.
My mother gazed up at her with the adoration of a second-grader taking communion. She used to echo, “Friend,” back. Now, she was silent.
I jumped in, and echoed, “Friend,” instead.
Nevertheless, Janice’s actions acutely demonstrated an unrequited devotion. And while I bragged my mother was one of her favorites, Janice lavished on all residents the same love and attention anyone would wish for when turning eighty-four, ninety or one-hundred-and-three. The staff breathed a culture that adhered to this notion.
On Mother’s Day, I woke to a touching email from Becky, the activities director. Over our chats, Becky and I determined she started work at the care home two months after my mother arrived. She had observed my recent struggles to cope with my mother.
Happy Mother’s Day. I am thinking of you today and standing with you in spirit. I read your blog today. I don’t know what your particular spiritual beliefs are, but my experience as a witness to many last years of living is that, far beyond the time people are able to communicate, they are able to love and accept love. Your mother has been absolutely blessed by the fierce, unwavering, unconditional love you have given her in the time I have known you both. Please know you are not alone. Lean on those people you trust. Take care of yourself. I’ll be there- Janice will be there- for your mom through the end.
The email was proof of the commitment of the women at a place I generally referred to as Mom’s. Proof that we were all capable of loving with no genetic strings attached.
What was the definition of meaning? Something intangible that knew no bounds?
With the tip of her tongue, my mother pushed at a spoonful of brown potatoes and gravy and clamped her lips tight. Lunch was over. I handed in her plate like a kid in a junior high cafeteria.
Was my mother leading a life with meaning?
Twelve years earlier, my mother had undergone hip replacement surgery. She prepped and cooked her meals and froze them before her operation. Now, in her weakened state, she required more care than ever before.
If this end was not what I wanted for my mother, the best I could hope for was she had been welcomed, raised, and loved by the women (and occasional men) at her care home. Her life gave others work filled with meaning, and hearts filled with love.