A Daughter's Journal

The Whole is More than the Sum of the Parts

by Ann D. Gross

Not everything that can be counted counts, and not everything that counts can be counted.
--Albert Einstein

The unforeseeable had happened, and it had happened through my mother's laser-focused will to beam herself out of the skilled nursing facility (SNF) and back to her ocean-view apartment: She was going home. On a date certain.

She was triumphant and at the same time scared of leaving the giant whose breasts she had beaten ever since the giant enveloped her. Like a child pummeling their parent's chest--holding the parent close for comfort, but railing against her lack of power in the parent's grasp then letting go and sighing with an "I love you"--my mother began to praise the SNF that had housed her for six months in Room 306. This started as soon as her doctor delivered the news that she could leave.

"You know this is a wonderful place," she lectured me. "There are so many activities. I wish I had gotten to go to bead-making." It was as if she had missed out on an activity at summer camp.

"Yes, Mom," I responded dutifully. I had learned not to raise the specter of reality. Nearly every waking moment she was in the SNF, my mother had complained loudly and bitterly about everything: the food, the certified nurse assistants (CNAs), the other residents ("inmates" she called them)--some of whom had unnervingly died while she was "staying" there. No temperature was ever right: The room was "boiling hot" or "freezing cold." The food served cold should have been served hot; and the food served warm should have been served cold. "And the blankets are too heavy!" she growled.

Truth is, I knew it wasn't about the food or the blankets. Although it's uncomfortable to be too hot or too cold, I suspect had she been staying at The Ritz, she would have found a way--with great élan--to get the cutest guy at the concierge desk to fix it. The complaining surely was about her terror of how she had gotten to the point in her life with her body and mind that she needed to land in a SNF in the first place. I hope the staff members repeat that as a mantra to themselves at each moment.

A Blessing & a Curse

For now, Mom was as triumphant as a high school graduate with no plans for the upcoming year--thrilled at the promise of independence, but secretly frightened at the possibilities freedom might hold.

My theory? She worked so hard to get herself out of the SNF, that she fantasized going home as if from vacation. She imagined walking in to her apartment, making herself a stiff drink, sauntering to the balcony, and staring serenely at the Gulf, enjoying her solitude as much as she could without her beloved husband. Then she figured she'd stroll around the pool area, flirt with the men, and chat with the women. Life would be "back to normal."

So when the doctor said that she could go home from the SNF, provided that she always had someone with her to care for her, she focused on the going home. She likely made a note to herself that she could always pick up a boarder (preferably a young college guy, easy on the eyes) to live in the second bedroom and help her around the house.

Our Family's Executive Function Gene is on the Y Chromosome...

When Mom was in her prime some 25 or so years ago, it took the two of us all day to prepare for having four of her closest friends over for dinner. Wherever the "executive function" gene lay in other families, ours missed the X chromosomes completely. However, my brother (the elder by 14 months) took the executive function gene to the next stage of evolution.

He and his wife could boil down anything to the least common denominator and make it happen: a party for 100 people in their home, a treasure hunt for six-year-olds, my husband's and my wedding at their house (with less than 24 hours' notice), and, now, care for my mother, in her home, 24/7. I felt I could sooner sprint up Mount Katahdin in Maine than set up care for my mother at home.

Indeed, one physician friend said to me, in reference to getting my Mom home, with round-the-clock care, "You can make it happen. But only if you're willing to move down there and devote your entire life for at least two months to making it work." I would have rather moved into a SNF (or other appropriate institution) myself.

As it turns out, for all the Ying of suffering at my brother's hand as his younger sister for all those years, this was the Yang that balanced it. My brother had moved to Florida 25 years ago, married, and raised two children. He is the most disciplined, organized, successful businessperson alive on both sides of the family. For what I felt he always lacked in brotherly caring, he more than makes up for in efficiency. And the way he handled the business side of Mom's care was nothing short of brilliant, and surely a model for all families.

While I was deer-in-the-headlights stuck about getting Mom care in her home--a masters degree in gerontology notwithstanding--my brother made it happen like someone being granted a wish from a genie in a bottle.

I agonized over the issues: How much would it cost? How could we find someone who was honest and wouldn't be emotionally or physically abusive with Mom? How could we find someone she would like? How could we find more than one person she would like and who could cope with caring for her? Who would be in charge of making sure caregivers arrived and left when they agreed to? How would they get paid? Who would check on the caregivers? What if someone was late? Did she really need care around the clock, seven days a week? How could we trust someone to give her her meds? Could I give in to her protestations ("I don't need that much help." "Do you know how much that costs?")?

I thought about our friends back at the SNF and felt guilty. One woman whose 90-year-old grandmother had far more money than my Mom, got stuck on all of these questions that baffled and stopped me in my tracks. Her grandmother ended up staying on the inside, complaining bitterly and aspiring to get sprung.

Honoring My Mother, Suffering Myself

And how could I do any of this from New York? I started to see my life in Gotham pass before my eyes and pictured myself phoning my husband each night, longing for our daily routine in our Upper West Side apartment together with our shaggy, aging dog (about the only aging being that I feel almost equipped to care for).

I spent two full (unbillable) days researching geriatric care managers (GCMs) in the Florida area. In once case I spent 45 minutes on the phone with a woman who sounded delightful. But even if I could get my brother to agree to spend the money to hire a GCM at $75 per hour, we would still need the caregivers 24/7.

The next day I received an e-mail from my brother: "Found someone who...has agreed to stay with Mom and take care of her full time until we can hire other people. She's going through a divorce so she doesn't mind staying. J."

My brother wasn't given to long narratives. The three lines told the whole story, and it was brilliant. Essentially, my brother found Suzy, an "anchor caregiver" who he put in charge of Mom's household. Instead of paying exorbitant fees to agencies and hoping that Mom would get more or less the same caregivers most of the time, my brother created an elegant solution: Find one trustworthy, competent, motivated good person and make her the "general contractor" in charge of finding support workers. And so he did.

Now he schedules a weekly meeting with Suzy, who has run her own successful nanny service for years. At Suzy's behest, she and all other caregivers close their shifts by writing "notes" about Mom's mood, what she ate and drank, and when she took her meds (like chart notes) in a designated notebook that stays in the kitchen drawer in Mom's apartment.

The Gift

When Suzy actually began, my brother and I held our collective breath, hoping our mother wouldn't send Suzy running out of the door screaming. But Suzy was indeed a gift: funny, upbeat, energetic, competent, and in need of a place away from her home to begin the recovery from the break-up of her 25-year marriage.

The "breaking-in" period, however, was rough for everyone. Mom's chief complaint: "Suzy is in charge of everything, and I've lost control of my own house! Now your brother only talks to her. He's taken away my checks. And she drives my car, and your brother says I can't drive my own car."

All this replaced Mom's former complaints about the nursing home staff.

For poor Suzy, caring for my mother was a far cry from even an inconsolable newborn. My mother didn't cry all the time, exactly, but she was inconsolable. Mom complained about Suzy's pushiness and bad temper.

"If I jump, I'm tying a cord to you and taking you with me," Suzy quoted herself to me over the phone, recalling with a laugh what she had told my mother. Like a distracted child, my mother stopped complaining momentarily when Suzy delivered such a "threat."

My brother and I were overwhelmed with Suzy's energy, intelligence, and level of tolerance for Mom's angry, resentful behavior. We collectively exhaled when we saw how Suzy treated Mom: with respect, but also with a sense of humor. And she wasn't afraid to give Mom back some of what Mom gave out. Taken aback by Suzy's standing up to her, Mom began to bully her less, knowing she would speak right up.

Soon Suzy hired two others, creating a schedule worthy of a highly efficient Fortune 100 manufacturing plant. The schedule worked just as efficiently, with each woman showing up on time to relieve the prior shift.

Are there problems? Oh yes. Does the world turn? Apparently it does. And when the sun sets and the sun rises, it finds my mother, for now, at home, in her own bed if not in her own skin. Stay tuned for next month's column.

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