Alexa Wolf’s mother combined conventional and alternative medicine to conquer “terminal” cancer. Sharing her adventures in healing with her daughter, she enabled the two to reconcile after years of mutual hostility that began when Alexa was a teen. Their relationship became deeply loving and remained so for the next quarter of a century.
Then Alexa's mother entered a skilled care nursing hospital to recover from hip replacement surgery.
Ill herself, Alexa fought to save her mother from the health care system. But she failed. Now, still in shock, Alexa struggles to make sense of what happened and to deal with her grief.
A small, greenery-shrouded home in Los Angeles serves as backdrop to this stunning drama of a mother and daughter who grapple with their volatile relationship and with life-threatening health crises in an adversarial system.Spanning half a century, this mother-daughter story inspires with drama, humor and pivotal insights into one of a woman s most important relationships. The book also reveals what you must know about our abusive nursing care system.
Excerpt
FIRST EXCERPT
The first excerpt is from early in my mother's and my relationship, when hostilities were building.
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One afternoon when I was thirteen, I lay on my bed engrossed in the adventures of Tarzan, the novels about whom I’d just discovered. My previous encounter with the jungle hero had been in his stupid movie characterization. Replaying on television, it obtained only my yawns. But now, astounded by this literary Tarzan’s intelligence and absorbed by the epic hero’s quest for a lost city, I felt a sudden intrusion into my mind. I looked up. Mother stood in my room, surveying me.
In my mother’s house you have to go through the bigger bedroom that was then mine to get to the service porch. Mother always seemed to need to go to the service porch for some reason. Consequently, she was always passing through my room, where she could hardly resist commenting negatively upon its sorry state (it was a disaster) or questioning whether whatever I was doing was what I was supposed to be doing. If I looked too relaxed, her brow wrinkled in concern. I should be struggling more with, well, something.
Not that she overtly, or consciously, objected to me enjoying myself. She just felt there must be something else I should be doing, because there were always so many unpleasant things to do in life. “You have to” do this, she would say. “You have to” do that, she would admonish me. “Sometimes you have to do things you don’t like. You have to make yourself, even if you don’t want to.”
Now, on her way to some chore in the service porch, she’d paused, her head tilted to see what I was reading. She frowned and studied me nervously. “Shouldn’t you be doing something?”
Typically unable to respond on the moment (for instance, “I am doing something”), I answered as a sulky and rebellious teen, “No!”
“What about your homework?”
“I did it.” I’d also vacuumed the living room. My lower back ached from dragging the stainless steel canister around and leaning over the hose.
Mother resumed her passage to the service porch with reluctance. I went back to my book. But she continued to traverse my room, each time casting increasingly apprehensive glances in my direction. Without looking up I could almost feel her neurons jumping anxiously. I was relaxing, lying around and enjoying my read of Tarzan when I “should be” doing something unpleasant and difficult. That was life.
Ignoring Mother, I continued to read, immersing myself in Tarzan’s adventure while the early writer part of myself observed how the numerous threads of the plot wove together into a fantastic tale. But my whole body grew steadily more rigid under my mother’s repeated passes through my room and her intensifying, bordering-on-hysterical scrutiny as she pursued countless missions in the service porch.
I began to anticipate her reappearances and jerk my head up, shooting angry red sparks at her as if by the sheer power of my glare I could forestall her disapproval, her imminent verbal attack, and erect a battlement between us. But with her every examination of me, her features appeared steadily more strained until at last she looked as if her face would capsize from stress.
I gave up reading and turned on the television. Or I ate. I don’t remember. But I never forgot the incident, and on the afternoon I binged on chili three years later, the moment came back to me. As I questioned how I could regain control of my eating, I realized that what I needed was a room of my own.
My own room would provide me with a refuge from my mother’s reign of voiced and unvoiced criticisms; her worries and all too vocal cross-examinations of me; her objections to or denial of my every feeling, thought and act; her hysterical outbursts at what she found wrong with me; and the venomous antagonism that was beginning to sear through me in response. Having my own physical room would afford me a parallel interior space of privacy in which I could experience pleasure and not have to defend myself or account to my mother for it or for anything else. Abruptly, I was certain that having my own room would also demagnetize me from the refrigerator.
As I finished the dishes, soaping off the last unlicked specks of spicy tomato salsa from the chili bowl, I turned my attention toward this objective.
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SECOND EXCERPT
The second excerpt takes place about four decades later, after we have reconciled and our relationship has become deeply loving and Mother has commenced her "rehabilitation" following hip replacement surgery.
(about forty years later)
Meadows
“I can’t reach the water!” “I can’t reach my food!” “I’m so constipated it hurts. It won't come out or it comes out a little, and they won’t help me!”
I phone the nurse and repeat Mother’s complaints.
“Oh,” the nurse says cheerfully, “she made a little poo-poo today.”
“‘Poo-poo,’” Mother later quotes in disgust. “That’s what they always call it here. Very professional. Very medical.”
I cannot help a small, rueful smile. This is so my mother. But it's not funny. "I can’t tell you how it hurts,” Mother says. Beside the normal pain of constipation, the effort she must make to push it out puts pressure on her recovering hip and replaced prosthesis.
I call the nurse back to insist, “My mother needs an enema.” But the next day she still can’t reach the water, she’s had no enema and her poo-poo has not improved.Only days later does she get the enema. That’s how it goes here, constipation for days and finally an enema, too little too late.
Months later, when Mother’s terrible journey has ended, Camilla [my friend and a nurse practitioner] will tell me, “One of the first duties of a nurse is to make sure the patient is hydrated and moving their bowels.”
So I had to force them to give her basic care. When I could.
Then there’s the phone. “They moved my phone.” “I couldn’t reach my phone.” “They’re always moving my phone.” But without the phone she can’t talk to me, and I am her lifeline. If she can’t tell me what’s going on, I can’t sit on the nurses to do their job. And she needs to hear my voice, my love. Without the phone, Mother is alone.
And what about a patient’s other needs, not only her ties to those she loves but to her personal identity—her own soul?
“They never delivered my paper.” “My paper’s at the foot of my bed. I can’t reach my paper.” “Someone came in while I was asleep and threw out my paper!” “They only gave me half my paper. Someone else got the other half.” “Maybe we should just give up on the paper.”
“Absolutely not.”
Of course it doesn’t end there.
“She was shaking out my covers. She just didn’t look. My radio fell and she wouldn’t pick it up. I need my little radio! It’s the only thing saving my sanity.” She means the classical music, which, astoundingly, she manages to get pretty often, despite her new short-term memory lapses. “She pretended to look and said it wasn’t there. She came back half an hour later and I asked her to look again. She found it.”
“I guess it just mysteriously re-materialized.”
“I guess so.”
The inadequacies rain on—backdrop to Mother’s excruciating post-operative pain and, perhaps inevitably, in these circumstances, the abuse.
***
Most skilled nursing facilities assign themselves sundry bucolic, beatific or resort-sounding names. There are Villas, Terraces, Gardens; there are also heavenly attributions, Angels or some such. This place I’ll call Meadows. She’s come here after the hip operation for skilled nursing care and a specialist in physical therapy. They’re supposed to care for her while teaching her to walk again with her new prosthesis. When she no longer needs these specialists, she’ll go home. I’ve asked Isela [Mother's friend] for help, and she tells me her friend Maria can move into the little bedroom in Mother's house and help her for a few more months. Maria will charge three hundred dollars a month and will leave when Mother fully recovers and can again live alone. Toward that end, I fight for Mother from the first day.
But my brain torques, my stomach knots, my heart clenches. As her time at Meadows goes on, my tone with the nurses will become more strident, the fights more furious. A mutual antipathy will evolve between us. For no matter my occasional triumphs over their stupefying ineptitude, I keep falling behind the gathering realities, the “anomalies,” as I mistakenly and repeatedly regard them.
“They never come when I call.” “They never tell me what’s going on.” “They treat me like a sack of potatoes.” “I can’t reach the—the—button—the thing,” the call button for the nurse, for emergencies or when she needs pain medication; the call button, which falls between the mattress and the safety bars or rests above her pillow, out of sight and reach.
She picks up the phone to answer my call and her first words, before “Hello,” are, “Oh my god I’m in such terrible pain I don’t know what to do.” It's not the constipation, it is a post-operative agony. This is one of the two dreadful events that bind and blind me.
Caught up in each conflict, I keep missing the big picture and losing the war.
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