Detours on the road home

Author: Patrick Gallagher '83

When I was young, Grandma asked me, “What’s that word kids say that sounds like ‘Jesus’?” A worldly fellow of about 8, I knew she meant “jeez,” although I’d never connected the two words. I had to get much more worldly to realize the two words were likely related in the same Commandment-skirting way that “gosh” came into usage as a substitute for “God,” a way to obey the letter of the law if not the spirit.

There’s hardly a person I can imagine less likely to curse than Grandma, except possibly her daughter. Mom let out an extremely rare “damn” or “hell,” but she was too gentle and genteel, too unfailingly polite, to stoop to the easy curse.

Crosscurrents GallagherIllustration by Elissa Turnbull

Until the cancer. Then Mom’s language changed. It was probably the treatment that unleashed something. She tolerated a first round of chemotherapy and radiation well and seemed cancer-free, but a few months later the lymphoma reappeared. Then she underwent heavy-duty treatment that put her in near-comatose states, required hospitalization and accelerated a gradual slide toward dementia. She ended up in a nursing home in a matter of a few weeks. This is not to criticize the physicians’ treatments. The alternative seemed to be death, and in her late 70s, neither she nor her family was ready for that.

But with the change came an unexpected onslaught of expletives — outbursts of “damn, damn, damn” or “sh*t, sh*t, sh*t” in response to minor frustrations. In addition, F-bombs. I would have been less surprised to learn she didn’t know the word. I explained often that it wasn’t the real her.

And it wasn’t. While there’s something undeniably amusing about an 80-year-old sweet, gentle lady letting loose with a string of expletives, not settling for those innocuous substitute words, it was a symptom of something unfunny: the decline of her health, her cognitive abilities, her will — her self. This cursing Mom, the weaker, confused one, was not exactly her but was a not-Mom, a substitute as the real one gradually drifted away, no longer fully present. Like those alternative curse words — the same thing, but not really.

It made me think of old photos of her. The young girl. The pretty homecoming candidate. The beautiful bride. The young mother of two boys, my older brothers. At home with her siblings. At First Communion. At costume parties with friends. Being goosed by Dad. Many from before I was born, all these were not the Mom I knew but were part of the person she was becoming — as opposed to the one she was losing.

While her profanity had a certain charm, the fading of her faith troubled me. When she first needed a nursing home, the Catholic facility had no openings. The secular place offered weekly Mass and priest visits but didn’t seem adequate for someone whose faith had been so important, who had attended Mass and prayed the rosary daily, who made the Sign of the Cross whenever she passed a church. When space in the Catholic home opened a year later, we — well, I, as the child who lived in the same town — moved her there. I believed she would have wanted that environment, but maybe the change was really for my benefit, for my conscience.

For her, the dislocation was traumatic, triggering increased profanity. Maybe if she had been placed in the Catholic home right away, the milieu might have slowed her flight of faith. Instead, she seemed to forget. When I didn’t come to take her to Mass, the staff would take her in her wheelchair, but after a while she declined the trip, staying in her room to look at the newspaper or TV. This to me was a distressing way she was not Mom. Faith was a fundamental, indispensable part of who she was — as integral as sight or speech. Without her faith, she would have been a different person from the one I knew.

Eventually I told the staff to take her to Mass no matter what she said, rationalizing that she wasn’t really of sound mind to make decisions opposite to her decades-long custom. This was contrary to my approach to her legal and financial affairs. Although I had power of attorney, I hesitated to exercise it. I’m not sure why I respected her agency in decision-making in one area more than the other. Maybe one was more important for her and the other more important to me.

Mom had always been relatively restrained about her faith, modeling it for us rather than imposing. Like her G-rated language, however, her seeds fell on my rocky, thorny ground. Still, I prayed for her daily, using the rote prayers she had taught me (and the “spontaneous” petitions I memorized), but I didn’t pray with her. I hadn’t learned to pray that way. I’ve since encountered people who prayed or sang hymns with their demented loved ones, making connections to those parts of the ailing one’s life. Such practices are slowly becoming part of the care in some nursing homes, and unlike me, these people knew to do it intuitively.

Wondering about the science behind the apparent exodus of Mom’s faith, I learned that research on faith and the brain is relatively recent for both scientists and theologians. Investigators are recognizing the effects of dementia on faith and spirituality, although the results are not consistent. For some people, faith clings; for others, it can disappear. Although research has found that spirituality can help dementia patients cope with their disease and even slow its progression, for Mom, it seemed to be gone before the coping could start.

I found this incomprehensible, because Mom was steeped in faith. She taught CCD, volunteered with the Altar Society, participated in a faith study group for decades and took communion to the homebound. Unlike Mom, I declined to be a Eucharistic minister. I never disbelieved, but it would have felt like an imposture. For her, it was her. I remember watching her walk up on the altar after communion with her pyx, the Eucharist container, which the priest filled with consecrated hosts for her to distribute to the sick. For a long time, I’d thought the word host was a functional term, referring to the wafer being the “host” for the real presence, a temporary home for its guest. Rather, it comes from the Latin hostia, or “victim.” A double victim of cancer and dementia, Mom should have found solace in communion; instead she lost the desire to go. When she was taken to Mass, she often fell asleep, and the priest gently stroked her cheek to wake her to receive. Who was this woman?

About 15 years before Mom’s nursing home experience, when Dad had late-stage cancer, they went to a Catholic hospital far from home to consider last-ditch heroics. My siblings and I, all living 1,000 miles away at the time, visited them at the hospital. Dad was on his own path to dementia, with the worst still to come. Having prayed for the intercession of Saint Peregrine, the patron of cancer patients, for about a year, he was shifting to Saint Jude. Now, from his bed, he watched the hospital’s daily Mass on the closed circuit TV. He wanted to be there, but we wouldn’t let him go because of his IVs and unscheduled doctor visits. I decided to attend, however, despite our worries he would be angry if he saw me take communion on TV. I thought about him as I went up to receive, but I escaped his notice.

A year into his cancer, Dad still prayed, hoping against hope, and wanted to go to Mass. It was different with Mom, but maybe Dad’s experience sheds light. A few months after that unproductive hospital visit, his dementia serious, Mom moved Dad to a nursing home. He didn’t take it well, feeling abandoned and threatening divorce. His anger subsided as, like Mom later, the disease and cognitive fog gradually consumed him. A feeling of loneliness, even though Mom spent most of her time with him, probably lingered under it all.

For Mom, it must have been worse. No spouse to keep her company, as she had for Dad, who died a decade before her disease struck. Me, the only nearby child (having returned home soon after Dad died — for a job, not a higher purpose), with a family of my own, making brief visits a few times a week. My siblings far away, visiting when they could. Most of her friends, also aging, visiting less frequently. Her loneliness had to be deep and, perhaps evidenced by the expletives, bitter. She might not have been ready for death before treatment, but afterward, wishing herself dead was too common a refrain — making it more disheartening that she didn’t seem to benefit from the company of her faith.

Was her faith not as deep as I’d always assumed? The daily rosaries, the saints’ devotions, a lifetime of prayer — wouldn’t those beliefs and practices have strong roots? Did they not have staying power? While I didn’t think my faith depended on her faith, it was still a little like the Earth moving under my feet.

Then I saw myself in an article about faith and dementia that made me realize I was being too hard on Mom: “We may want to believe that a person’s faith is written into the very core of their being, closer to them than breathing; but all the information we can gather from a person’s speech, behavior, and mood imply that their faith is as vulnerable to loss in dementia as any other habit they have acquired at the same stage in life.” For Mom, it seemed, the chemo struck the superstructure and the dementia flooded the foundation, and it was gone.

Schooled by science, I took a second punch in a message from someone who is a health care professional, a minister and a dementia researcher: “My suspicion is that we, with the best intentions, make it hard for people with declining cognitive abilities to connect with us, as we tend to measure them only according to what fact they can remember and communicate back to us.” Not finished with me (although her comments were not directed at or about me — but I got the point), she noted her own experiences with the still viable spirituality of some persons with dementia and pointed to another cause of the predicament: “it is a cognitive problem that prevents us from seeing possibilities for communication with the person who has dementia.” In other words, the cognitive problem was mine. Jeez!

When, in Mom’s fifth year as a resident, the nursing home called to say that she had taken a “turn” and that it might be “time,” I believed they had overreacted. Still, I went to her. Conscious, she looked up at me, moving her lips but making no sound. “Look at that love,” the minister said. It was a sweet thing to say, and I didn’t doubt Mom’s love; I just wasn’t sure what the look meant.

A young priest administered the anointing of the sick. While I wasn’t sure she was ready yet, I nonetheless choked up during the rite as I had during all my children’s sacraments. My reflexive response gives me hope that, despite my otherwise shallow faith, something connects. Something akin to the survival instinct — something in the “core” of being, as the dementia researcher put it — that I hoped would have given Mom’s faith the strength to penetrate the dementia.

Although Mom rarely acknowledged pain, over the next few days, she suffered. About five days after our vigil started, the nursing home called again, at 4:30 a.m. on Mother’s Day, to say it was really time. When we got there, my sister, who had flown out the day after the first call, crawled into bed with her. We gave Mom permission to leave.

Humble to a fault, Mom would have been mortified to know she would die on Mother’s Day, drawing that extra attention, that extra poignancy (35 years before, her mother, having suffered a massive stroke days earlier, had had the grace to die a few minutes past midnight on the day after my brother’s birthday — Mom believed she’d waited).

For most of Mom’s nursing home stay, we’d been able to have minimal conversations with her, but these became entirely one-sided. The amusing cursing declined, as did she. Frail, wheelchair-bound, and barely interactive. More not-Mom than Mom. In another delusion to which we’re probably all susceptible, I believed the real her was hidden under the scar tissue of the disease.

Maybe I wasn’t so deluded. During the last rites, the priest broke the Eucharist — the host, the viaticum, company for the journey — and offered her a tiny piece. Whether it was good manners, a deep-seated reflex or something else, she put out her tongue and received.

Patrick Gallagher lives in Aberdeen, South Dakota, where he works for a community development nonprofit organization.