Here is Chapter 9 of Dreaming Out Loud, the book about my mother’s stroke.
From deep inside a tunnel, I hear someone call my name — at least it sounds like my name. Off in the distance, I see a light approaching. As the darkness dissipates, I try to look at the light but it hurts my eyes. I am forced to squint.
Someone repeats my name. The voice is loud, shrill, insistent. Blinking, I struggle to focus, but I am so lethargic and disoriented I have trouble answering. The earth beneath my feet shakes violently and I feel as though someone has hoisted me off the ground.
“It’s for you.” Paula rocks my shoulders.
“What’s for me?”
“The phone. It’s for you.”
I sit up in bed and reach for the lamp on my nightstand. The light near Paula’s side of the bed is already turned on.
Yawning, I vaguely recall a pleasant dream about cheerleaders and whipped cream. This rude awakening is most unwelcome.
“What time is it?”
Shielding her eyes as the room explodes into bright light, Paula gazes at the alarm clock on our dresser across the room. “It’s early — 4:08.”
“Four-oh-eight in the morning?”
“Here.” She hands me the phone receiver and rolls over onto her hip.
“Hello.” My voice is small, barely above a whisper.
“Is this Mr. Martinez?”
“I don’t want to change my long distance carrier.”
“Who is this?”
“I am sorry to disturb you so early in the morning, sir, but it’s critical. I am Nancy Smith, the on-call nursing supervisor at the Joan Glancy Rehabilitation Center.”
That piece of news grabs my attention. The Joan Glancy staff would not call me at 4:08 a.m. unless something important had happened — something bad.
I feel as though I have been punched in the stomach — or elsewhere. Whatever sleepiness I felt now dissolves away like mist exposed to the morning sun. “What is it? What’s wrong?”
The sudden shift in my tone of voice causes Paula to turn toward me. Still lying amidst the tumult of the bed covers, she squints up and tries to read the expression frozen on my face. “Is everything okay?”
“Mr. Martinez, is Laura Martinez your mother?”
“Yes, yes.” I can barely get the words out of my mouth above a whisper.
“Well, sir, we wanted to alert you to your mother’s condition.”
“We discovered during routine tests that she had developed a series of blood clots in her lungs.”
“Blood clots — in her lungs.” I repeat the words in a monotone.
"Who runs routine tests at four o'clock in the morning?"
"Last night she complained of breathing problems, so we ran tests. I just received the results."
"How do you get blood clots in your lungs?"
"It sometimes happens with stroke patients."
I may not be certain about what I am hearing, but Paula knows how seriously mom’s condition has deteriorated. “A pulmonary embolism — is that what they’re telling you?”
“So this is a pulmonary embolism?”
“Yes, sir. I am afraid so.”
I nod my head even though the lady on the phone cannot see the gesture.
Paula is sitting up, leaning close to the phone. “They need to transfer her upstairs into the hospital ICU.”
“Has she been sent up to the hospital ICU?”
“No, sir, we believe we can treat the condition here in the rehab center.”
Paula hears the woman’s remark. She shakes her head before I can relay the conversation. “Huh uh, no. No. They have to send her upstairs right away. She needs to be in a hospital.”
I cup the receiver with my hand. “But Paula, they say they can treat her right there in the rehab unit.”
“Gimme the phone.” She snatches the receiver from me and immediately orders that mom be moved into the hospital ICU.
The nurse is surprised. “Who is this?”
“This is Mrs. Martinez’s daughter-in-law. Now, you need to move her into the ICU without delay.”
“I assure you we can treat her in the rehab unit.”
“Look, I work in the health care field, okay? I have been managing doctor’s offices for many years, and I know that a pulmonary embolism is very serious.”
“This lady needs to be in the hospital. Now.”
“I can assure you she will receive the very best care here in the rehab — ”
“ — And I can assure you that you better move her now or my husband, who is a lawyer, will sue your ass.”
“Ma’am, there’s no need to get nasty.”
“Apparently there is because she hasn’t been moved.”
“As I said, she doesn’t need to be moved.”
“Move her now!” Paula slams the phone down and turns to me. I am constantly amazed at her presence of mind, even at 4:08 in the morning.
“Are they gonna move her?”
“I don’t know, but you need to get on the phone to Philip and tell him to call those bozos. This is too serious to wait.”
I look at the clock. “But Paula, it’s still not even 4:15 in the morning.”
She is already reaching for my address book. “Your problem, Mike, is you’re too nice, too weak. You don’t want to bother anybody. Philip is a doctor. He’s used to being on call. Don’t worry about whether you’re bothering him — worry about your mother. That’s what’s important here.”
Begrudgingly, I accept her assessment of the situation and my motives. Now is not the time to be a wallflower. Mom needs for me to be strong. Reaching for the phone, I dial Phil’s number and wait for a response. It rings for such a long time I am convinced he is asleep or not at home. Eventually, I hear his voice.
“This is Phil Mead.”
“Phil.” I sigh. “This is your cousin, Mike. Sorry to disturb you at such an early hour, but something’s come up with mom and I need your help.”
He does not sound sleepy or inconvenienced in the least. He is all business. “What’s up, Mike? How can I help?”
I outline developments as best I can. Even before I ask, he offers to call the hospital and have mom shifted from the rehab unit upstairs to the hospital.
“Thank you so much.” I feel sweet relief wash over me like a tsunami invading a barren stretch of beach unaccustomed to the tides.
“No problem, man. Sorry this has happened. Blood clots are serious, I won’t lie to you, but they can be treated effectively. Do you have the phone number?”
A few days earlier, I scribbled the number onto a piece of paper. I keep it in my bedside table. Opening the drawer, I fish out the scrap and read off the digits.
“I’ll call the rehab unit and keep you posted.”
“Thank you, Phil.”
“Now.” Paula smiles as we rise from the bed and head for the Mr. Coffee machine. “Don’t you feel better?”
I have to admit I feel considerably better at having done something. Still. Mom is in danger, and I am worried.
After a couple of hours, I tiptoe into the guest bedroom and wake Polly and Loren. They are alarmed at the news, but I assure them their son is on the case and a happy ending is not beyond the realm of possibility.
When everyone is up, we dress and eat a light breakfast. Paula and I call our respective offices to ask for time off even as Shelby boards her school bus. Around 9:00 a.m., we head over to the rehabilitation center with my aunt and uncle in tow.
Mom has been taken upstairs to the hospital and assigned a private room as a result of Phil’s telephone call. She is awake and fairly alert when we arrive. Her eyes light up and her face erupts into a grin when she sees us.
Polly places her hand over her heart. “Laura. We were so worried.”
Then mom does something that is so much like her — so much a part of the old, pre-stroke Laura — I am encouraged. She heaves an exaggerated sigh, a sigh that can be interpreted as, oh, brother; don’t be such a worrier. It is a little thing, but it carries immense significance, at least in my mind. It shows she understands what is happening. She is alert and reactive, always a promising sign.
Paula relays what we have learned from the floor nurse about mom’s current condition. “They have her on blood thinner and other medications. With enough time and good luck, she should be okay. The clots should dissolve.”
The problem with a stroke is that it affects the mind in different ways, depending on which part of the brain is damaged. No two strokes are exactly the same. Sometimes a person is only mildly affected. In such cases, the patient can be prescribed blood-thinning medications and rehabilitation is minimal. In other cases, the devastation leaves the patient, in effect, brain dead. My mom appears to lurk somewhere between the two extremes.
I sigh. “Oh, thank God.”
Paula nods. “Thank God for Philip.”
“Yes, he is awfully handy in a crisis.” Loren has justifiable pride in his voice. His son has come through for the family.
So this will be our new life. We will spend our time — not all of our time, but a significant portion of it — acting and reacting to mom’s health. Finding the right institutions, the right doctors, the right medications will be our lot. I am not sure I am up to the task. I have never been one to wade through the muck of life stoically, without complaint.
Up to it or not, I have little time for a respite. Assuming she recovers from the blood clots, mom can only stay in the hospital briefly. She either must return to the rehabilitation center or be transferred to a less aggressive health care facility. She is not ready to come home and will not be ready anytime soon, if ever.
Where can she go? I think about it on and off throughout the day.
Later that night, after the relatives have retired, Paula first mentions the dreaded n word: Nursing home. I gasp when she utters the words.
Once when I was growing up, I heard the awful news that a friend’s grandmother had been relegated to the sidelines, out of sight, but not out of mind: “We’ve had to send mawmaw to a home.” My friend, John Harris, spoke with genuine regret in his voice. It was too painful to use the n word even after the dirty deed was done. One thing was clear: A nursing home was the hinterlands, the end of the line, the next-to-the-last step on a journey from the cradle to the grave.
As a consequence of my early exposure to the concept of a nursing home, I react negatively. Nothing good can come from a nursing home. It is as though a person bound for a nursing home has been marginalized, shunted off stage left and only to be seen on occasions when such dreadful duty cannot be avoided. Mom is only 64 years old. By all rights, she should have many years of life ahead of her. The thought of her banishment is almost debilitating.
I have visited nursing homes briefly on two previous occasions, and my feeling is that such places are hovels where people are warehoused until they die. The only time I ever hear about a nursing home is when some 60 Minutes-type television investigative journalist uncovers signs of abuse and neglect in nursing homes. No thank you — the n word is out of the question.
Paula will not take no for an answer. “Look, I know what you’re thinking.”
“No, you don’t. You have no idea what I’m thinking. It’s not your mother we’re talking about.”
“You’re thinking we’re just going to shuffle Laura off to some home where she can sit out however much time she has left until she dies.”
“Okay, well, yes. That’s exactly what I’m thinking.”
“Nursing homes have changed in recent years, Mike. There are some bad ones, of course. But there are some good ones, too.”
“I don’t want to discuss it.”
“Don’t make me the bad guy here. I am not saying this is an ideal solution, but we have to keep our options — all of our options — open.”
“I said I don’t want to discuss it.”
I can hear anger creeping into her voice. Paula is a patient woman, but anyone’s patience only extends so far. “What are our options, then? What if Joan Glancy won’t take her back after she gets out of the hospital? Tell me, please — what are our options?”
“They’ll take her back.”
“What if they don’t? What if she still refuses to cooperate with physical therapy? What then?”
“Maybe we could bring her home.”
Paula rolls her eyes. “Be realistic, Mike. She can’t walk. She can’t talk. She can’t clean up after herself. Who’s going to get her to the bathroom? Who will cook her meals, wash her clothes, get her medication, take her to the doctor?”
I feel myself losing control of the argument or whatever kind of discussion we are having. “I’ll do it.” In saying those words, I am portraying myself at the Son of the Year, the ever vigilant, dutiful caretaker heroically preventing my mother from wasting away in a forgotten nursing home on the outskirts of some broken-down hamlet at the end of a weed-infested cul-de-sac.
“You’ll do it?” Paula sounds incredulous. “Don’t be so dramatic.”
“Dramatic? I’m not being dramatic. I am deadly serious.”
“Think about what you’re saying. You can’t do those things and still live any kind of life. You still have to work. You still have obligations to other people, including me.”
She is so pragmatic, so relentless. I hate her in this moment. Her logic is so inexorable it wears me down and destroys my carefully constructed wall of defenses. My shoulders sag and I surrender.
Paula takes pity on me. Her assault lessens in intensity. “We’ll visit some nursing homes, talk to people, get the facts. Okay?”
“Okay.” I wipe tears from my eyes. When did I become an old woman?
“I’ll talk to my docs and to the nurses. We’ll get recommendations.”
True to our word, in the coming days, we occupy our time with phone calls, web surfing, and inquiries into nursing homes. I research strokes, expectations of recovery, advances in therapy, and other matters germane to mom’s situation. I bookmark www.stroke.org — the website for the National Stroke Association — so I can find much-needed answers with a few clicks of a mouse. No doubt my efforts mirror the efforts of other families facing long-term illnesses and a difficult recuperation.
The most disturbing fact I uncover during my research blitz concerns aphasia, a condition I have never heard of before. Aphasia is a language impairment that affects a person’s ability to speak, read, or write. Because the use of language and writing is considered a central communications function distinguishing human beings from lower animals, a large part of someone’s personality is due to his or her ability to use language. Aphasia robs a person of this communicative function, which changes part of the person’s personality. The extent and duration of aphasia depend on the extent and duration of the injury. Spontaneous recovery from aphasia occurs during the first three months after a head trauma, although some recovery is possible later.
I learn that aphasia is common in stroke patients. Notice I used the word “patients,” not “victims.” The National Stroke Association suggests that people avoid negative words that emphasize a sufferer’s helplessness. People who see themselves as victims cede control of their lives to others — family members, friends, doctors, caregivers, God, or fate — when they need to take charge of their own recovery. A “patient” has rights and responsibilities for recovery that a “victim” lacks.
Research indicates that about a third of all stroke patients develop aphasia. I find a dizzying array of types — global aphasia, Broca’s aphasia, anomic aphasia, Wernicke’s aphasia, isolation and transcortical motor aphasia as well as fluent and nonfluent forms of aphasia. Each type is related to the others, but each type also has its own distinct recovery pattern.
Unless the stroke patient exists in a vegetative or near vegetative state, the person inevitably will feel frustrated at the loss of power over the routine of living life. Frustration can morph into depression. Consequently, physicians often prescribe antidepressant medications such as Lexapro to counteract stroke patients’ depression.
I learn these factoids during my initial research, and I feel more confident that I understand what has happened to my mother. Still, I have immediate needs that must be handled. I must find a place to send mom after she leaves the Joan Glancy Hospital.
After a few days pass — while Loren departs to fulfill a long-standing speaking engagement and mom’s brother, Billy, arrives to help out — Paula and I sit down to consider our options. As usual, my research has been wide-ranging and theoretical. Paula’s research has been far more practical and productive.
“Look at this place.” She hands me a brochure for the Parkwood Nursing Home and Rehabilitation Center in Snellville, not far from the Emory Eastside Hospital where our adventure began. According to the brochure, Parkwood specializes in all levels of care, including the less aggressive regimen of therapy recommended by the doctors and physical therapists at Joan Glancy. Leafing through the glossy pages, I like what I see.
Paula smiles. “We’re pretty lucky, too. They have a bed available. I set up an appointment for us to look at it tomorrow afternoon. I hope that was all right.”
I hug her. It is better than all right. It is a relief. Thanks to Paula, we have a plan.
We tour Parkwood the following day, and it is everything I hoped it would be. It is better than I hoped it would be. The staff is friendly and courteous. A lady in the business office loads us down with paperwork and instructions for filling out the complicated Medicare and health insurance forms. Another lady leads us around the nursing home on a tour of the building and grounds. She shows us the private room that will be available for mom. It is small, but clean and well kept.
Yes, it is still a nursing home and I worry that it is the first step in a long, slow, inevitable decline ultimately leading to my mother’s death. What does Thoreau say? “The mass of men lead lives of quiet desperation.”
On the tour, I see many old people who appear desperate as if they are struggling, unsuccessfully, to breathe underwater. Their wrinkled faces and hands form an indelible image in my mind as we creep through the halls. Mom seems far too young to be living among these octogenarians. But I also see a caring staff, splashes of bright colors and flowers everywhere. I see a chance for a long, slow recovery — a chance unavailable to mom at Joan Glancy.
Paula is right — what other options are available to us? On one hand, mom cannot return to the rehab center. The therapy is too strenuous for her; she is too uncooperative and refuses to exercise. On the other hand, she cannot come home. We have no means to care for her in her condition. She cannot struggle up out of bed, get to the bathroom, feed or dress herself, or handle any of dozens of everyday, routine matters of life without assistance. That leaves a nursing home as our only viable alternative.
At the end of the tour, Paula and I huddle together in the hallway to discuss what we have seen. I surrender to the inevitable, but at least I feel better about the terms of my capitulation. As nursing homes go, Parkwood is the top of the line.
Paula anticipates my objections. “I know it’s still a nursing home, but I like it. It doesn’t have to be permanent. She can come here and recuperate at her own pace. Then one day, maybe, we can bring her home.”
I shrug. “I agree.” With that, we shuffle into the business office to consummate the deal.
Visiting mom in the hospital later in the day, I carefully lead her through our plan. Like me, she does not initially embrace the idea of entering a nursing home. It sounds so final. Like me, too, she knows our options are limited. A nursing home is the only answer.
Her voice is weary, filled with resignation. “Scootch, scootch.” She sighs, yawns. “Scootch scootch.” I guess that is stroke-speak for I will do whatever you think is best.