Here is Chapter 33 of Dreaming Out Loud, the book about my mother’s stroke.
Chapter 33
I arrive at Piedmont Hospital an hour and fifteen minutes after speaking with Dr. Mininberg. Fearing the worst, I expect to find mom alone and afraid, inconsolable after receiving dramatic, incontrovertible news of her own mortality. I have already informed Paula and Polly via cell phone. All of us are struggling to keep a stiff upper lip.
Standing in the doorway of her hospital room, I look into mom’s face. She does not appear especially troubled. She is watching a rerun of a crime documentary called “City Confidential.” We are frozen in place for perhaps thirty seconds until she sees me with her peripheral vision and turns her head.
“Hey, mom. So you saw the oncologist, Dr. Mininberg.”
She breaks into huge grin. “He was good looking!”
This comment — so spontaneous, so open and optimistic, so trusting and childlike — triggers a bizarre, unexpected response in me. I burst out laughing even as tears stream down my face. I am an absolute mess. Stepping into the room, I collapse in the chair beside her bed.
The smile slips from her face. “Michael, what is this one?”
I cannot look directly at her.
“I mean, what is wrong with this one, Michael?”
Struggling to keep myself under control, I swipe my face with the back of my hand. “Are you scared, mom?”
She shrugs. Waving at her body with her left arm, she answers in a matter-of-fact manner. “Blessing in disguise.” With that, she turns her attention back to the television screen.
I lean forward, cradle my head in my lap and, for the first time in a long while, I weep. It is water bubbling up from a spring; the flow cannot be damned or diverted. I cannot control it even if I try, which I do not.
Mom leans down from her hospital bed and pats me on the back with her good hand. “There, there, Michael. There, there.”
Her voice is flat, emotionless. Paul Winfield, the narrator of “City Confidential,” overrides her soft words with his explanation of how the charming hamlet of Hanover, New Hampshire, becomes the scene of a grisly double murder.
Our roles have been reversed since her stroke — I am now the decision-maker, the responsible one, the parent — but briefly, for the last time in our lives, we reverse roles yet again. She comforts me when I should be comforting her.
Like a summer thunderstorm, my eruption is fierce and unrelenting, but also transitory. It passes in less than five minutes.
I am standing at the sink in her bathroom, splashing water on my face and blowing my nose, when I hear Paula’s cheery voice.
“Hey, lady. How are you doing?”
“Pretty good, lady. How you doin’?”
I step from the bathroom and half-wave. My face must show the remnants of my partial meltdown because Paula appears shocked. She recovers quickly, but I know what I see: For a brief, flickering moment, I see the pitying look from her that I have seen on the faces of the health care professionals with whom we have dealt.
Paula holds up a paper bag with “Wolfgang Puck Express” written on the side. “Have you eaten yet? I thought we could enjoy some good food for a change.” She looks at mom and winks. “Something better than yucky hospital food.”
Mom smiles. “Sumpin’ shut of yucky hospital food. Yes.”
I frown. “I don’t know if she should be eating that stuff, Paula.”
She tilts her head at me as if to say, oh, come on now, Mike what difference could it possibly make this late in the game?
I nod. The message is received. We’ll eat what we eat.
After cutting mom’s chicken salad sandwich and outfitting her with a bib, Paula distributes the food. I slide into a chair next to the radiator while Paula sits in the chair beside mom’s bed. We quietly munch our sandwiches and chips while we watch “City Confidential.” It ends and Paula switches channels to the musical variety show “American Idol.”
She looks at mom. “Do you mind?”
“No. This one is the bomb for this one.”
I laugh. “I take it she likes ‘American Idol.’”
Mom nods her head and points at me. She has a dab of mayonnaise stuck in the corner of her mouth. I step up from the chair and wipe her face with my napkin.
About ten minutes later, the hospital case manager enters the room to tell us that Mark, a representative of Abbey Hospice, will stop in to talk with us shortly. Abbey is located in Social Circle, Georgia, a small town about 20 miles from our house. It is the closest hospice to us, and it comes highly recommended by the Piedmont physicians.
Paula nods. “Thank you. We’ll look forward to speaking with Mark.”
The case manager does not chastise us for eating food brought in from outside the hospital, although clearly it violates the rules. Perhaps she realizes, as Paula did, that some rules do not apply to terminal cancer patients. She displays the now-standard-issue look of pity (which I think of with all capital letters — the Look of Pity!) and disappears into the hall.
Approximately 20 minutes later, as promised, Mark steps into the doorway of Room 231. He is a thin, young fellow with a crew cut and thick black glasses leftover from the mid-1960s. He wears Khaki pants, a white shirt, and a striped tie. He reminds me of a young Mormon missionary bicycling from door-to-door distributing religious tracts and seeking converts in a suburban neighborhood.
He clears his throat dramatically. “Knock, knock.”
Mom surprises us all with her reaction to his remark. She speaks without looking away from the TV screen. “Who’s there?”
We all laugh, including the young man standing in the doorway.
“Mark — Mark Knopfler, nurse liaison from Abbey Hospice. I think the case manager told you I would stop by.”
Paula and I open our mouths to speak, but he raises his hand, palm facing outward.
“Not the Mark Knopfler who plays in the rock band. It’s an unfortunate coincidence.”
I cannot help myself. “Do you get money for nothing and your chicks for free?”
He smiles, but it is strained. His face says, gee, I haven’t heard that one before.
Ignoring my silliness, Paula steps forward and shakes his hand. She is all business. “So what have you got for us?”
“I am here to talk with you about hospice care at Abbey.” He pauses. “When I say ‘hospice care,’ do you understand what that means?”
Paula and I nod. Mom is watching television and seems disinterested.
Mark stands there for a moment, looking at the three of us, taking us in. Despite his youth, he appears to appreciate the sensitivity of the diagnosis as well as the family’s obviously raw emotions. I do not see the Look of Pity.
“I will tell you about our services this evening, but I do not want to pressure you in any way.”
Paula and I both nod. Oblivious to the discussion, mom chuckles as she watches a slew of untalented “American Idol” contestants warble along, hopelessly out of tune, as they make fools of themselves on national television.
“We offer a variety of palliative care options. This means that we try to make the patient comfortable. We do not treat symptoms or participate in a plan to restore patients to health. Hospice care is reserved for persons” — his voice drops a notch — “in the last six months or less of their natural lives.”
Without looking away from the television screen — and apparently without realizing she is speaking — mom mutters under her breath. “The last six months or less of their natural lives.”
Mark continues his spiel. “Hospice care is available through Medicare, at no charge to patients or their families. If you are interested, you simply complete the paperwork and we can enroll Ms. Martinez as soon as she is released from the hospital.”
Paula steps away from the hospital bed so she can hear and be heard over the noise of the television. “Does she enter a facility or can she come home?”
Mark nods as if he expects this question. “Either option is available. It depends on the family’s desires as well as the physician’s assessment of a patient’s physical condition.”
“We’re bringing her home.” I speak before I realize the words have left my mouth. My voice is more adamant and authoritative than I thought possible.
Paula nods. She agrees with my determination.
Mark nods, too. He probably realizes the doctors will have to sign off on the option, but he does not challenge our wishes. Without pressuring us, he presents us with a folder full of information about hospice care in general and Abbey Hospice in particular.
“I understand from the case manager that Ms. Martinez won’t be released for at least another day. Anyway, take a look at this information and give us a call when you have made a decision.”
Paula walks him to the door. “Thanks. We will.”
After he is gone, I leaf through the folder. It reminds me of the Joan Glancy Rehabilitation Center in Duluth and the Parkwood Nursing Home and Rehabilitation Center in Snellville. They, too, had slick, well-produced brochures touting their patient benefits. Of course, in the early days after mom’s illness, we were searching for institutions that would assist in her recovery. We have reached the end of the line with the Abbey Hospice. Recovery is no longer an option.
After “American Idol” ends, I mute the television. “Mom, we need to talk with you.”
She sighs. I have interrupted her schedule on a heavy night of quality television programming.
Paula and I explain what Mark told us and what we have read in the folder. Mom watches us part of the time and part of the time she fixes her eyes on the now-silent television. I cannot read her reaction on her face. In the autumn of her years, my mother has developed the best poker face of anyone I know.
“Does that sound like a good plan, mom? You’ll be coming home.”
She nods. It is fine with her. In fact, she seems cheered by the prospect of returning home. I cannot tell how she feels about the need for hospice, but I let it go. I am no psychiatrist.
The following day, while Paula is at work and I am waiting at home, Piedmont Hospital discharges mom. She is weakened by the advance of the cancer and the massive drugs she has received, so the good-looking Dr. Mininberg requires that his patient be transported in an ambulance. The irony is lost on no one in our family: the woman who hates to make a scene and who was so resistant to being transported to the hospital in an ambulance after her stroke returns home in a vehicle she detested.
The ride becomes all the more melodramatic when the ambulance driver is confused by the driving directions and cannot find our house. He stops in the Wal-Mart parking lot, calls me on his cell phone, and waits while I lead him to mom’s apartment in the basement of our house. Thus, despite her best efforts, my mother inadvertently arrives with more attendant drama than her overly dramatic mother, Weeze, ever generated.
And so we settle into a final routine. The doorknob still turns each morning around 9:00 a.m. as Shirley slips into mom’s apartment. Sometimes she brings breakfast from McDonald’s and sometimes she whips up a patch of the Quaker instant grits, bacon, toast, orange juice, and coffee so beloved by my mother. They still share the food and bicker as though they are an old married couple that likes nothing better than to snipe at each other. I join them for breakfast when I can, but I have duties that preclude my participation every day.
As usual, Shirley washes mom and dresses her. We believe it is important for mom to get out of bed and put on clothes each day. If she lies around in her housecoat, she may sink into depression. The hospice brochure warns us to keep the patient as happy and engaged as possible, recognizing that a fine line exists between being optimistic and being falsely, excessively cheery, which strikes everyone as paternalistic and perhaps degrading.
Aside from her silly insistence that the Walton Regional Medical Center would kill mom if she stayed there, Shirley has been a source of strength for all of us. She is one of the few people around who acts exactly the same after the diagnosis as she did beforehand. The rest of us walk on eggshells, worried we might say or do something that is insensitive or causes mom emotional pain as she faces the end of her life. Shirley does not respond to myriad subtleties. She is who she is, and she acts as she acts. If she has something to say, she says it; the heavens be damned.
As she has done since she began caring for mom, Shirley also cleans the apartment and feeds the pets. One afternoon, she cuts Mister’s toenails even though he pees on her blouse as she clips away. She presses clothes with the iron, folds sheets, towels and pillow cases, and goes about her business as if our lives have not changed, and never will change. I have explained the situation, but Shirley has adopted mom’s apparently cavalier approach. They both have mastered the difficult art of living one day at a time.
Shirley clips Mister's toenails
When I am in town and working from home, I trundle downstairs and eat lunch with mom from noon until 1:00 p.m. As always, we try our hand at solving real and imagined crimes by watching “American Justice,” “Law & Order,” “City Confidential,” “Unsolved Mysteries,” or any of the other detective shows that repeat endlessly on cable TV throughout the day.
Mom is alone from 1:00 p.m. until 6:00 p.m., although Paula or I will pop in if either of us is at home during that time. Not surprisingly, mom increasingly spends her days napping, although occasionally she plays with Mister on her bed. The television runs twenty-four hours a day. The Food Channel — especially Paula Deen’s cooking show — has become her favorite diversion.
The routine winds down as Shirley returns from 6:00 until 8:00 every evening except Sunday. She helps mom undress, cooks dinner, and cleans up whatever she missed during her morning visit. Paula and I usually show up at least once in the evening. Sometimes one or both of us will sit with mom and watch a TV show for an hour or two. On other occasions, one or both of us will simply look in around 11:30 p.m. to make sure that everything is okay. Sometimes I watch my sleeping mother and marvel at the rhythm of her breathing.
Despite our attempts to return to her normal routine, life is subtly different than it was in the months preceding mom’s cancer diagnosis. Apart from our tendency to gaze at mom and poignantly reflect that this may be the last time we see her, she obviously is growing weaker. Pulling herself out of bed and making it to the toilet becomes a Herculean task. As a result, accidents occur more frequently than ever before.
Abbey Hospice sends an army of nurses to ensure that mom is comfortable. One nurse usually arrives in the morning and another at night. They assist in administering medication, straightening up the bedroom in Shirley’s absence, and monitoring her vital signs. Paula and I are instructed on how and when to administer doses of morphine. At first, we are told to be careful in our administrations, but as mom grows weaker we are told to use our judgment. It is not as though she will live long enough to become an addict.
I am in constant contact with my cousin, Phil Mead, the doctor. Polly calls almost every day. Many other friends and family members check in either through the telephone or e-mail. And then the visits begin.
I cannot help but think of them as farewell visits, which is what they are in many cases. My Aunt Bonnie and Cousin Martha spend a weekend not long after they learn of the diagnosis. They are fortunate to find mom is relatively good spirits, and reasonably alert. Visitors who come in the ensuing weeks find mom far more lethargic and uncommunicative.
Still, people come. Uncle Bobby stops in again with a ham and cheap wine in his arms and unverifiable versions of “near perfect” on his lips. My long-time friend, Alex Thrower, brings his fiancée to see us, a gutsy move on his part. Hey, honey, I want you to meet my friend and his dying mother. I know how to show a girl a good time! My cousin, Chris Mead, visits twice, as does his brother, Walter.
How can I describe the changes that occur during those weeks? It is difficult for Paula, Shelby, Shirley, and me to notice because we see mom every day. It is subtle, but each morning she seems to have faded a bit. She is an old photograph left sitting in the sun to grow progressively dimmer and washed out as the corners curl up and the colors bleed. Where she was once animated, engaged with her family, willing and eager to eavesdrop on juicy gossip, now she seems too tired and disinterested to react. We occasionally see flashes of the old Laura, but they grow increasingly rare.
On the last night when she is still all there, we sit around her kitchen table as Shirley prepares the evening meal. Mom is propped up in her wheelchair. Close family members have assembled for the farewell performance. Polly and Loren, along with their daughter Barbara, as well as Paula, Shelby, and I laugh about old times. Even Shelby, normally so quiet and reserved, regales the adults with the tale of how she found Nana spitting her potassium pills into the trash.
Mom whips her head around. “You? You said this one for scootch this one?” We cannot understand all the words, but the meaning is clear: You were the one who ratted me out, eh, Shelby? I understand now! I see who my friends are!
It is the last good night of my mother’s all-too-short life.