Family Matters


Family Matters

Whose Mom Is It Anyway? Learning to Love My Mother’s Caregiver

By Robbie Conrad, LCSW

May/June 2022


As I climb the stairs, I hear, “Lyn!” Rosalina, my mother’s home health aide, is shouting in the direction of my inert mother. “Lyn, your daughter is here!”

My mother, lying in a hospital bed with her eyes closed, squeezes them even more tightly shut. I wince: this small rejection never fails to hurt. I want Rosalina to leave the room so I don’t have to continue this familiar charade with her there. “She just had her eyes open,” she says apologetically. She leans over my mother. “Lyn! Open your eyes!”

“It’s okay,” I tell Rosalina. I place my hand over my mother’s stiff, bony one. “Hey Mom, it’s me!”

This is what happens every time I come to my parents’ house. “How are you doing?” I ask Mom, knowing there won’t be an answer. My mother is in the last stages of Alzheimer’s and has been confined to this bed in her guest room for months. When I visit, her eyes are usually closed, and she never speaks. When her eyes are open, they aren’t focused. She has to be turned, bathed, changed, combed, clipped, and fed. She hasn’t recognized or acknowledged any of her family in more than a year.

At least, that’s what I observe. Rosalina tells a different story. Mommy sat up the other day! Mommy was watching the birds outside the window! Mommy was smiling! Mommy said thank you to me!

Did she, though?

If in life, my mother belonged to my father, in dementia she was the property of Rosalina. Lively and spirited, Mom had been an ideal ’60s housewife, whose main job was keeping her husband happy. She cooked the dinners he liked, devised vacations he’d enjoy, and made sure the attention was focused on him. “Let’s hear how Daddy’s day was,” she’d exclaim at dinner. He adored and appreciated her, returning the favor: “Isn’t your mother’s pot roast just wonderful?”

These days, I think back fondly on their mutual admiration and love, but their dynamic made it hard for me and my siblings to squeeze in—as though in order to get access to Mom’s warm attention and laughter, you had to bypass Dad.

This pattern continued into my adulthood; when I visited, I’d have to listen to all Dad’s stories before he’d excuse himself to go watch the Mets game or play the piano. Then I’d greedily engage Mom on whatever problem I was having that week. She was an excellent listener, always laughed at my jokes, and usually had some pragmatic advice. But if he returned, she’d sweetly defer to him again.

When Mom began forgetting things in her 70s, Dad was making (and often not making) all her medical decisions. My sister and I began worrying about her. She was getting lost when she’d go out, burning food, and repeating herself, but Dad refused to get care for her until she was hospitalized with a stroke and returned home bed-bound. Then he arranged for a home health aide six hours a day: Rosalina.

So now there was a new gatekeeper. And a new Mom. This person was an old crone, nothing like my vivacious mother—a hostile, uncaring presence, who’d scrunch her eyes shut any time one of her family members came near. She and Rosalina had their own world, up there in the mauve bedroom with all the medical supplies. Entering it felt like invading.

Rosalina was a busy, efficient person. When she wasn’t cleaning or feeding my mother, she’d do the laundry or work in the garden. She also fed my dad, now that he no longer had his wife to cook his meals. She’d take only an occasional break to smoke a Marlboro on the front steps, or conduct heated phone conversations in Tagalog.

That’s when I’d sneak into Mom’s room so I could talk to her the way I had before the illness: telling stories about my life and the kids, making irreverent or inappropriate jokes, the kind that used to make her laugh. I still just wanted to be alone with her.

Of course, Mom didn’t laugh. She didn’t respond in any way. Sometimes I’d just tell her soothing things: how pretty her hair looked or what a beautiful day it was outside. I held her hand or stroked her cheek. No response. Then Rosalina would barge back in with some food on a tray, telling my mother in a loud voice that it was time to eat. That’s when I usually got up to leave and Rosalina would implore me to stay.

“You don’t have to go!”

But I did.

Talking to the shell of my mom was painful enough, but to have to do it with an audience was unbearable, especially when that audience was Rosalina, who seemed able to pretend that my mother was actually comprehending anything.

“She can hear you,” Rosalina would say. “She knows!” Or, “I tell her she’s my baby girl, and she smiles!”

I hadn’t seen my mother smile for over a year, so either Rosalina was lying, or my mother preferred Rosalina to me. I hated Rosalina, I hated the withholding crone, I hated the whole production.

Eventually, my mother contracted pneumonia, became deathly ill, and was assigned to hospice care. Dad, Rosalina, and I took turns gently administering morphine and timing her breathing. At one point, it was just me and Rosalina on either side of the bed. She had my mother’s hand clasped in hers. “Baby girl,” she pleaded. “Don’t leave me! Please stay with me!”

When Rosalina left the room, I leaned over and whispered: “Mom. It’s okay if you go. We love you. You did a great job.”

After three long days of this, Rosalina went home to get a break, and I eventually went home to sleep. That night at 1:00 AM, the phone rang. Mom was gone.

In the days that followed, Rosalina continued to cook and keep house for my dad. Then abruptly, at the end of the week, Dad fired her. “I just told her I don’t need her anymore,” he said simply.

This was of course untrue, at the very least because he still didn’t know how to cook for himself. More than that, though, dismissing her so swiftly and completely seemed cruel. Rosalina had been with them for three years, and she’d taken care of my mother with such great compassion and devotion. She was a member of the household, and he was treating her like a day laborer! How could he just dump her?

“She cried to me for two hours the other day,” he explained, a bit exasperated, “about how much she loved your mother.” Ah. That was it. Dad never could tolerate any outpouring of emotion.

At this point, it began to dawn on me: Rosalina really had loved my mother. Mom was not a job to her, but a person. How could she love her though, when, by the time they’d met, there was nobody there to love? Who was it that Rosalina loved? Who was Rosalina’s “baby girl”? A helpless creature who depended on her? She hadn’t known the lively animated person I’d lost. Somehow, Rosalina loved the old lady who’d taken over my mom’s body! It was incomprehensible.

Rosalina attended the memorial service several weeks later, and then we didn’t hear from her for a couple of months. At my dad’s house, the flowers withered, the garden went brown, the laundry went undone. Every time I visited, Dad seemed noticeably thinner and paler. I tried to cook for him, tried to do the laundry, but things were happening that I couldn’t control: he fell down several times, mixed up appointments, wound up in the ER with an infection. He refused my suggestions and continued to protest that he was fine, didn’t need any help.

In a panic, I called Rosalina, but by this time she’d gotten another full-time position. “I miss your mommy,” she said wistfully. “Me too,” I told her.

After we hung up, I turned to an online service to find a new caregiver. After a few interviews, we hired Eunice to cook dinner for Dad three nights a week, do his laundry, go with him to the grocery store.

And that’s what she did. And that’s all she did. There were no special superfood shakes in the blender. The garden stayed brown. I realized slowly how much more Rosalina had immersed herself in the life of my parents’ home, looking after my father as well. She used to tell me if Dad was looking more pale than usual or seemed more fatigued. She’d tell me if he was drinking too much sherry in the evenings or scold him about it. I remember her massaging ointment into his thin pale legs, explaining that it would help his aching muscles.

One winter morning, in the middle of a nor’easter, she’d showed up at the door unexpectedly. No one else in the state had gone to work that day, and we didn’t expect Rosalina to make the drive. But there she was, her old Kia having skidded to an awkward angle in front of the house. When Mom had been in the hospital and then in a rehab facility, Rosalina had sat with her every day. She’d badger the nurses for instructions on how to care for her once back home, and study the occupational and physical therapists, learning the exercises so she could help Mom do at home.

She did what I would do, if I wasn’t working full time. No, the truth is she did what I wouldn’t do. Sure, I’d cook from time to time, or run to the drugstore, but I wasn’t changing my mother’s catheter bag! I didn’t want to sit with the mute shell of my mom, or spoon puree between her lips! I wanted my old mom back. I was showing up at my parents’ house still hoping, like a child, to get what I needed. But Rosalina was wiping the feces and the drool, washing Mom’s body and combing her hair and feeding her and gently putting lotion on her—mothering her at the point in her life when she could no longer mother anyone else.

I wasn’t up to the task of mothering my mother.

Rosalina was. She was able to love Mom, at those moments I couldn’t bear. Loving her as she was: helpless, unresponsive, incontinent. I was filled with guilt: Why couldn’t I love her like that? How was it that Rosalina could be loving with another human being without receiving any love in return?

Months after Rosalina had gone, I felt ashamed for having once resented her, for thinking she stood between me and my mom. What had separated us was Alzheimer’s disease. It wasn’t Rosalina’s fault that my mother no longer spoke. It wasn’t Rosalina’s fault that Mom would squeeze her eyes shut in that hurtful way.

Mom had always dreaded Alzheimer’s, having watched her own mother’s decline from it. Maybe the refusal to open her eyes was just a refusal to accept this reality. Maybe she just couldn’t stand being seen, by her daughter, in such a humiliating state. Perhaps it was easier at that point for my mother to be with Rosalina.

I dread dementia, too; after two generations of Alzheimer’s deaths, I could be next. I’ve imagined what it might be like: no longer able to speak, or write, or laugh, or walk, or even sit up at a table and eat. Just lying there, mute and uncomprehending, with a terminal illness. Who would I want to be with me, in that terrible state? Who would I even allow to behold me like that, with all my failing bodily functions? To love me?

Someone like Rosalina, who’d stroke my hair, and coo to me, and tell me I’m loved, even in this final stage of disrepair. Who’d care for me, even when I couldn’t care back. Who’d be the one person, in the end, to beg me not to leave.

In Rosalina’s absence, I find myself more often at Dad’s house. I decide I’ll try to restore his garden, a task for which I have absolutely no talent. One afternoon, kneeling on the damp grass in front of the dry remains of a hydrangea bush, I feel overwhelmed. How can I coax life into this plant, which is clearly almost dead? Do I use fertilizer, water it a lot or a little, prune it? This helplessness feels familiar, and I absentmindedly crumble some dirt in my fist.

What would Rosalina do?

* * * *

Robbie Conrad, LCSW, is a psychotherapist in private practice in Verona, New Jersey.


Topic: Aging | Families

Tags: caregiver



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