Driving Miss Patience
When everything goes wrong with your ill parent
Sometimes you're the windshield, sometimes you're the bug.
Some time around the 1994 Winter Olympics I found myself on a plane to New Jersey, in a position that is, or will soon be, familiar to many of my peers: travelling in response to the news that my mother was in the hospital following a stroke. My sister and I had been called by a family friend on a February day, and Ruth (living in Kansas) and I (working in Arizona) boarded flights to begin an act one expects to be called to eventually, almost as immanent as one’s own death: to go to the side of an ill parent.
This is not the story, however, of our mother's stroke, of how she got better and came to live comfortably with her new disabilities. This is our story, the children's story, of how we entered the situation to be the helpers and became the helpless. For us, it is a tale of how the mission of coordinating, supporting and assisting—to which we naïvely thought we were being called—became a six-week pageant of frustration, embarrassment and anxiety. Rather than being an indictment of the medical system, it is about who our mother and her friends turned out to be, the increasingly surreal cast of characters who appeared as the weeks passed, and our ultimate inability to effect the simplest agenda of recovery.
Common sense expectations have made this story hard to tell. Of course a person in a hospital is difficult: who could find fault with the patient, particularly one so old and struck down? She can’t even defend herself. She is at a disadvantage. We must put ourselves out to help the patient; one does not attack the bedridden. How naïve we were.
When we arrived at the hospital that day, the scene was sobering but well-defined. At age 71 our mother, whose name is Patience, had lost feeling and sight on her left side and was connected to an IV and a urinary catheter. The hospital room was made of a dull, concrete block with a small window to her left—the side out of which she could no longer see. She looked frightened and disoriented, and we decided that one of the three of us—we were also joined by our cousin Margot from Colorado—should remain in her hospital room to reassure and help her around the clock. We kept up this practice for twelve days in good faith. It allowed us to begin what we conceived of as our job, to intercept the doctors and physical therapists during their serendipitous rounds, to learn about the medical causes and consequences of her stroke, to understand her prognosis, and do what we could to help.
That initial situation was sad yet humanly acceptable. I hand-fed mom spinach from a spoon. We entered into the intimacy of helping her with bedpans and noting whether there was a bowel movement or merely gas. We soothed the nerves of relatives, such as her sister Sally in California, calling frantic with worry that she had not been able to get a telephone call through for a few hours. We enlisted the help of one of mom's friends to regulate the large flow of visitors: no more than two at once, and visits of only a few minutes. It was tiring, but we were emotionally prepared for all this, as if we had read the script ahead of time and knew how we would bring it to life until it was time to go back to our own lives.
We lost the script on the second night. Just after midnight, as I was dozing off in my chair, Mom spoke up.
"I don't like being a prisoner here," she said.
"Well," I said, groping for a fair answer, "you're not a prisoner here. But you have to stay until you get better."
"I'm trying to find an escape," she stated in a bitter monotone. "What do you do when you're trapped, Mor?" She was droning, as if thinking aloud.
"When I'm trapped?" I said, prompting her.
"I get very judgmental on myself. Do you know what that's like? I don't want to be conscious any longer." It was as if I were listening to her talk to her diary. "You could help me out of consciousness by giving me my valium," Mom said. Extending her right arm out over the bed without looking at me she went on in a raspy, semi-delirious voice "This is your mother speaking. Put the pills here."
"I don't think there are any pills, mom."
"Just look for the pills in my purse."
But there were no pills and the nurse on duty told me that mom's chart showed nothing having been prescribed to help her sleep. So mom stayed awake on and off for the rest of the night, watching TV and talking to me.
"At this moment many people are having their drinks at home and heading off to bed," Mom said the next evening. "Drinking helps in going down the road to oblivion. Get me water and get me my pills!"
"Apparently you're not allowed either of those," I said warily.
We were familiar with the story of her long history of low self-worth and bulimia—even into the years of our childhood. Mom had been to so many therapists and therapies (all of which she loved and none of which actually changed her) that our house had always been awash with talk of her inner child and Buddhism. But an attachment to valium had not been part of the picture.
"She needs to be present to do the PT," I said to Ruth in the morning, "but she is interested in not being present."
That night (Margot on duty now) Mom learned that not only was she not permitted valium, but also no wine.
"Get me my pills!" she declared, seizing her purse with one hand and emptying it over the bed. "Are they on the floor? I've been robbed!"
The situation developed quickly as Margot, appalled, watched. Mom developed an acute pain in her left leg, called for a resident, and convinced him to approve valium for her. In his absence, Mom talked to Margot about the pleasures of drinking oneself out of one’s judgmental consciousness. Was this woman who needed drugs our mother?
Ruth and I, on our occasional visits home over the years, had seen Mom drink an entire bottle of wine while watching late night television by herself. We were repelled by this but had essentially ignored it. Your parents do so many things you wouldn’t do yourself. Phone conversations with her, if they occurred late in the evening, were noticeably blurred by wine. Had she been combining valium with alcohol? Now it seemed the stroke had presented us with an opportunity. Mom was fated to be in the care of real medical people in a hospital for some time, and that, we were sure, would be the end of her drinking and drugs. This was a place where no one would allow her to continue something unhealthy like that.
The next day her family doctor came to her room and wrote a standing order for Mom to have valium every night and a half a glass of wine every day. We were incredulous. She had allies in this?
"She's been taking valium for twenty years," he bluntly informed us, indicating that we had to undo history before we could enlist Mom in her own recovery. In an effort to assess the allegiances of other players in the tournament, Margot telephoned Mom's close friend Charlie, a daily visitor, and asked him to consider not bringing the wine shr requested. He said, "I'm not going to pretend to be her analyst! I'm going to treat her as someone I love!" His equating of love with the delivery of wine was echoed by Sally, who said, "You don't think a little wine can hurt, do you?"
We were stunned by this apparent support for her drug habit. This was not going to be, we slowly realized, the story of children supporting their mother as she gave up her wine and valium habit. This was going to be protracted negotiations between two camps with separate lifestyles and values. Ruth and I could not really accept this. We were angry at the doctor. We were disgusted at Mom’s support network. We were outraged that we were alone in this.
Meanwhile, Mom had stroke-induced delusions that lasted from several hours to an entire day. One morning she woke up and asked how she had got to England. She phoned her sister to inform her of where she was, and then marveled that I too had come across the Atlantic. I explained carefully that we were not in England; we were in Princeton as we had been every day. Kate, my girlfriend, entered the room and Mom said promptly, "Oh you must have taken the Concorde to get here so quickly!"
It was as if two parallel universes were occupying the same hospital room. We continued to correct her, but she didn’t respond by inquiring about the source of her error; instead she cheerily revisiting her mistake regularly—as if she thought a delusion made her a more delightful and interesting person. When asked if she wanted green beans with dinner she said, "Let's see how they do them over here in England!" This was a waste of our time. We were irritated by the delusion as game. We refused to let go of the idea that our mother had to be our ally in this situation.
She wanted her friend who was a masseuse to come in and give her a massage. I think if it's OK [with the doctors] we should definitely give Mom things she wants, Ruth wrote in the log book that we kept in the hospital room. "Phone Nancy about the massage, honey," Mom said to Ruth. "Not yet, Mom," Ruth answered, "I have to ask the doctors first." Then a few minutes later: "Phone Nancy about the massage, honey." Neither accepting nor petulant about the delay, Mom just kept asking, as if what Ruth was telling her did not register, and the thought were just coming into her head for the first time again.
It became increasingly surreal. She wove as many events as possible into a fantasyland in which we had no interest. She insisted on calling Rita (a nurse) "Ouida" because Rita reminded Mom of a character by that name in a movie called Beau Geste—a movie Mom had swooned over in her youth. For Mom a visit by Ruth was not a chance to discuss her recovery but an opportunity to plan a trip to England on the liner QE II. She referred to the rehabilitation doctor only as "that theatrical woman," as if the theme of her stay in the hospital was amusement. We brought her a VCR and with her watched hour after hour of the Wagner opera videos she loved.
Denial is a normal and to a certain extent healthy reaction to catastrophe, and we would not have begrudged Mom some denial. But she never displayed denial. She refused to acknowledge anything about her condition one way or the other. And when her endless detours into fantasy and away from the issues at hand suggested that we could go no further from reality, Mom’s colleagues from the Holistic Health Association (where she was the executive director) would arrive to lay on hands, condemn the hospital system, note that cherry juice was good if she had gout, manipulate her limbs through postures that promoted energy flow, and insist that wine would nurture her soul.
Between the emotionally draining eight-hour shifts with the patient, we returned to Mom's house, the 94 year-old structure in which we had grown up. We found that the upstairs heat was out, the driveway had been plowed in during a recent snowstorm , and the tenant in the garage apartment (Nancy the masseuse) had nowhere to park her car. These things all needed to be responded to; as well, there were a host of long-term concerns: the house was a warren filled with piles of magazines, papers, cassettes, letters, newspapers and art objects. There was a huge selection of wine. The five of us—we had now been joined by my girlfriend Kate and Ruth's boyfriend Gordon—needed sleep, decent food, and maybe some laughs. Certainly we needed perspective on this wacky world of alcoholic adults into which we had stumbled. Instead we set about shoveling snow, fixing the dryer for Nancy, cleaning up—an endless series of projects to maintain the house. We read books and pamphlets on stroke, made notes, and created information sheets for Mom’s friends. We always answered the phone. The idea of using the house as a safe haven in which to hide, of making it a refreshing center of our interests and values, did not occur to us. It was merely a base from which to coordinate care.
The house was still Mom’s focus of attention. She may have believed she had an untouched stash of valium in the house; in any case, she began her campaign to get home ASAP. Daily she set the tone for conversation by greeting us with a breathless and excited, "Am I going home today!?" The rehabilitation doctors advised us that only a further month in a rehabilitation hospital could give her maximal recovery, so we answered her with a sympathetic "No," while secretly fuming at her. Why can’t you acknowledge that you have to do rehab? We gave her pep talks about staying in the hospital and working hard at physical therapy, "the path to get home!" Our brand of delayed gratification held no interest for her however, and the next day she would again meet us with a cheery, "Am I going home today?!?"
Her difficulty in comprehending the time-scale of rehabilitation was understandable because of the effects of the stroke. But the delight she took in repeatedly dragging us through a scenario in which she was the victim and we were the jailers was just an indulgence of her love for the melodramatic—something that dated from long before the stroke. We were now spiraling down to a deeper circle of hell in which she pulled the strings and we danced.
Mom ceased to ask for anything directly. She was pleased when we picked up on her hints, and irritated and withdrawn when we didn't.
Mom: I wonder what they're having for dinner tonight in the next room?"
Me: Oh, would you happen to be hungry , Mom?
Mom: Oh, yes!
If she wanted visitors to leave she would display her exhaustion, prompting us non-verbally to ask them to leave.
Into this tournament of hint-and-guess, Mom introduced the game of going on strike. When she ignored the hospital food, we and her friends brought her whatever we could think of, as if we were trying to please a finicky cat: home-made lasagna, soups, pasta with pesto sauce on it. Slowly we were making it our responsibility that she eat, although we did not realize this. When she ignored the water provided for her (although her need for better hydration was a daily message from the nurses) the result was a delivery service of juices, wine, coffee and cappuccino, regular and decaf.
The occupational therapist came to her room in the first week and asked her to make a fist with her left hand, and then to look at her left hand. He would ask her to use the left hand to push against his arm, and then to push with both hands. After a few minutes of this she looked over at me and gave a helpless smile which I knew meant she had lost interest and was just putting up with it to be polite.
"No, Mom," I said, "This is the stuff you have to work on." But she participated with less and less attention, until a few minutes later he wrapped up and came to talk with me in the hallway.
"I've had about two thousand stroke patients," he said kindly, "and she has an attention problem." But to me it seemed that the "attention problem"—that he perhaps thought was a result of the stroke—was in fact my mother’s typical response to tasks she didn’t really care for, especially when someone else expected her to do them.
"You've got to put effort into the PT, Mom," I went in and said to her, referring to the physical therapy. "It's the way you are going to get better."
"He's so mean to me," she said in a flat voice.
"He's not mean," I said: "he's helping you practice to get use of your muscles again."
"He's like my father," she said, gazing into the distance and going silent.
Mom did not warm to PT the next day or any other. She would urinate in her wheelchair when on her way to the physiotherapy room for appointments—forcing the orderly to take her back to her room and miss the appointment. If she made it to the therapist and I was with her, I had to hide behind her or out of sight to her left to prevent her from finding, in me, an opportunity to forget what she was doing and strike up a conversation about something new. She was always looking for a way to sabotage this hard work she didn't want to do. Falling asleep in the audiology lab finished the annoying test of her hearing. Changing the topic or turning up the TV could drive away guests or derail a conversation in which one of us was trying to get her to acknowledge what her situation was. Unaware (because of her new partial blindness) that we were watching she often failed to conceal an air of satisfaction after each of these events. Her sabotage was subtle and frustrating, and invited all of us to engage in a struggle to control her.
Eerily, when we did outflank her, sometimes the gods would intervene on her side, such as when the building's fire alarm went off during a PT session that was proceeding unusually well. After hours of trying to get her to go to sleep one night, I watched Mom roll over onto the TV remote, turning the set on at full blast and waking her up. She broke a tooth while eating a sandwich, so we had to check her out from the hospital and take her to the dentist.
Ruth and I were in despair. I don't remember any specific conversations we had at that time, but one of them might have gone like this:
Ruth: "I don't get it. Mom doesn't seem to be reacting at all to the wake-up call. She almost died! Does she want to save herself?"
Me: "She just couldn't care less. All she wants to do is go home, and she has no idea that life won't be the same at home as it always was."
Ruth: "If she doesn't do PT, she'll never get home!"
There was no specific turning point in our commitment to "be there" for our mother, but it is fair to say that it began with that sickening sensation that these behaviors were not new for Mom, that we recognized them. Doctors and physical therapists assumed Mom’s romantic flights of fancy and avoidance of discussing the current situation were the products of delusion and disorientation. Nurses thought the giant pieces of food Mom ate, filling her mouth with as much as possible before biting down, were part of a stroke-induced impulsivity. Yet we knew all of these behaviors from our childhood. It was clear to us that the majority of her willful behavior had nothing to do with her stroke. There were certainly some effects of the stroke—a difficulty hearing, a difficulty digesting new information—but most of it was just her. It was who she was: self-absorbed and unmediated by drugs.
I had been living elsewhere for sixteen years. Ruth had been gone from Mom’s house for perhaps six. We had had some notions about what Mom was like as a person, but she had been far away. Now she was very close and we were discovering that we didn’t like her. Even so, had she had been invested in her recovery that would have made a difference. We hoped to hear her say such things as, "Rehab seems like it’s going to be so hard and take so long," or "Sometimes I just want to give up." Yet we heard nothing of the sort, nothing to indicate that she had a difficult task. It was always, "this thing happened to me" or "how am I going to get out of here?" When we prompted her about her responsibilities in her recovery, she answered with a long, drawled "Whaa-a-a-at?" as if she suddenly couldn’t hear us well. We were longing for her to reach out and take the steering wheel for just a few moments, to tell us one realistic idea she had for her recovery, so we would know that she could someday participate in structuring her own life. It did not happen. She was happy to let us drive.
"If she doesn't want to deal with life and get better that's fine with me," Ruth said, "but what are we going to do with her?" It was the essential problem. Which was the more attractive prospect: moving her to a nursing home where she could remain bedridden and self-medicated—and having her sister and friends ask us why she wasn't getting the best PT with the goal of moving home—or forcing her to do the PT against her will, depriving her of valium and alcohol so she would be present, and dealing with her continuous ability to sabotage us?
We didn’t relish trying to defend the former: "Who cares that she doesn't want to do the PT," Mom’s friends and relatives would say. "Make her! It's for her own good. You can't just give up on her!" It was becoming increasingly clear that only we saw the real Mom. When she would exclaim at the possibility of going out to dinner at a nearby bar with "cold beer!" her friends did not pick up on the source of the thrill behind her enthusiasm that we did. She had done such a good job of keeping the deficits of her inner world hidden that, if we gave up and left town, her friends would only see the cruel abandonment of a hospitalized senior. Even as her disabilities made her devious intentions and thought processes more transparent, the fact that she was a recovering stroke patient gave her a terrific coincidental cover. That left only the other prospect: to drive her to focus on the PT, to get her into a good rehab hospital, to motivate her to be present, and to sell her on the idea of taking responsibility for her recovery. From this point we were doomed.
There was a lot to do in being the ideal family. Margot, Ruth and I assiduously left notes for each other recording information the therapists had told us and observations of Mom's use of her left side. We recorded which well-wisher had sent each bouquet of flowers. Each day we evaluated the ways we could have done a better job. We played the well-intentioned but foolish game of trying to be understanding of Charlie, Mom and her personal doctor, rationalizing why they might be acting the way they were and sympathizing with them. We pursued the ever-changing nurse staff to keep them abreast of what Patience could do on her own, so they would not miss opportunities to stimulate her. We tried to keep all of her friends informed about the status of her recovery.
Then came the Brain Injury Rehabilitation Unit (BIRU) at the St. Lawrence rehabilitation hospital. At the regular hospital, we had tried to be in Mom’s room all the time to mediate between her and the health-care system. Now, as she went to a rehabilitation hospital, we decided it was an acceptable time to cease that role. Initially she was moved into a regular ward on the third floor of St. Lawrence, where the nurses expected everyone to be fully invested in their rehabilitation work. These efficient agents of the rehab system would come at 7:00 a.m. to get everyone out of bed, and told patients to wheel themselves to the elevator in time for the en masse PT sessions. This lack of coddling was a profound crisis for Mom. When she hissed at the nurses and proved herself either unable or unwilling to arrive at PT on time, she was promptly moved up to the fourth floor BIRU. Here, behind a locked door which could be buzzed open only by a nurse on the inside, the hospital dealt with those sufficiently brain injured to need a specially structured and simple environment.
It was paradise for us. This ward was a quiet and peaceful world which had rules and procedures for everyone, from the patients to the doctors. The nurses forbade more than two visitors at a time, and there was no importing of food or drink. The flow of coffee, sandwiches and treats dried up. We could not bring a VCR into her room, as we had done at the hospital so that she could feed her passion for Wagner operas. As if they recognized us as a family inextricably intertwined with the patient, they interceded to define roles—and ours was purely to visit once a day. The flow of Mom's flaky friends dried up, perhaps because the novelty of her illness was wearing off, but also perhaps because their modus operandi was circumventing or evading authority—and the BIRU staff tolerated none of that. Mom too seemed to feel safe here. She liked the nurses (who treated her gently) and the one-on-one PT (where she could maintain control of the pace), and she repeatedly thanked us for rescuing her from "the third floor," a locale forever identified in her theatrical mind as a torture chamber. It was precisely what we needed; never mind our mother: we felt safe here.
"Your mother's stroke has affected her frontal lobe on the right side of her brain. Now, amazingly, it has not touched either her long-term memory, or her fabulous verbal abilities. In fact you can see every day how she compensates with these abilities to cover up what she has lost. Specifically she's lost some of her ability to digest new information, and she has lost her judgement."
This was Dr. Eng, the neurologist who ran the BIRU. He was the first doctor who was able to explain to us, eight weeks after mom's stroke, what was really going on.
"Her judgement," he went on, "is her ability to project herself forward into new situations and figure out if those will be safe or dangerous. Without that ability she is going to go home and want to do many things which are not safe—use the stove, drive the car and so on.
"But," he continued, "her verbal ability is so good, she's going to fool a lot of people into thinking she has fine judgement. Inside she is like a toddler—she doesn't really think ahead to the consequences of her actions or what she says. Outside she looks like an engaging and articulate adult who is worldly and capable."
"So no one is going to believe she has her deficits."
"Not if they only have superficial contact with her. Anyone who spends a significant amount of time with her will see through her attempts to cover up."
"How does she perceive all this?"
"She is unable to be aware that life has changed for her. In her mind, her abilities are as they always were. She's not really capable of digesting what's happened to her. That will only come over time."
"Your second problem," he went on, "is that she is an alcoholic."
Thus Dr. Eng and Dr. Nancy Termine, a psychologist, gave Ruth and me (Margot had now returned home) the tools to set the boundaries that would apply at Mom's house. In a series of meetings which—to our huge relief—validated our ideas, these doctors confirmed that Mom could no longer have alcohol because of the blood-thinning drugs she would now be on for life.
The range of dangerous or irresponsible acts that she might attempt once she got home was compelling. She would try to drive a car without realizing she could not see to the left. She would try to cook without anticipating that her wandering and numb left hand might come to rest on a burner. She would try to walk alone, risking a fall or tripping over something she did not expect on her left. She would try to buy a puppy without realizing someone had to take care of it. She would invite 100 people to the house for a party and not deduce that she would have to prepare anything. She would impulsively spend money without considering how much she had. And the doctors were right: every one of these was an act which Mom either did or asked to do upon her release.
Altogether it was good and bad news. Our spirits soared that someone was finally recognizing what a whirlwind of trouble our mother was. But it also meant that someone would have to be living with Mom twenty-four hours a day, would have to see through her good cover-up, and would have to be involved in every facet of her life. The doctors also confirmed how difficult our role was and would be. Dr. Eng pointed out that because of her strong verbal ability Patience would never be declared mentally incompetent by a court, and although we might be able to keep her away from alcohol, car and stove, we would have no legal back-up if she decided not to cooperate with us.
"I have a fantasy," Mom said, "about being caught escaping from the hospital in my wheelchair—with a bottle of Burgundy!"
Once Mom was safely behind the locked and guarded doors in the BIRU, Ruth and I only visited her once a day, and could even alternate our days. This left time for what was becoming the more pressing task: preparing the house for her return home.
By now our goal was to build a machine, a machine of home health aides and assistants that would run on its own, a machine we could walk away from. We documented everything we knew about the house, about its regular maintenance, about the quirks of the furnace and the plumbing and the electrical system. We documented everything we knew about Mom, her deficits and strengths, her interests and vices. We documented her bank accounts, her income and her regular bills. We became technical writers, pouring our knowledge onto paper so someone else could walk in and take our place. Believing that if we just tried a little harder it would all come together, we bought a new minivan that would be easy for Mom to get in and out of, replaced the forty-year old furnace, installed some grip bars and gave away (or poured out) all of the wine. Now we just had to find the people to live with her.
The challenge we faced was not the simple one of locating someone who would live with and assist an elderly, impaired woman. In fact I am now sure that this charming and sympathetic domestic scene, where the patient can, for example, no longer walk, yet understands and accepts her inability and just needs someone to help, is the rarest occurrence. The elderly patient at odds with her caregivers is far more common, and our caregivers were definitely going to be at odds with Patience. Our problem was finding someone who could not only cook and clean and shop for her, but would also open and keep track of her mail, pay her bills, administer her pills, police her on drinking (as well as driving), watchdog her spending, fix little things that went wrong in the house, and forbid her to walk when she was alone. We needed someone who combined the friendly attentions and medical knowledge of a nursing assistant, the integrity and head for numbers of an accountant, the patience and intransigent will of a day care worker, and the eclectic creativity of a handyman. But this was not all: it had to be (we thought) someone who understood Mom, who was not baffled when she talked about opera, the Swiss Alps and Ram Dass, someone by whom she would feel understood.
Ironically, we did not see such a person as a rare combination of abilities; we were covering all these responsibilities now and it seemed like a normal enough combination of abilities to us. It should be possible, if not easy, we thought, to find someone who not only could stand Patience but would also enjoy working for two children who were so organized! And while we did not expect to find a caregiver who shared Mom's interests we should certainly be able to find someone willing to respect them. The thought of being Mom’s caretaker ourselves was inconceivable—but surely this was only because she was our mother. Don’t your own parents always drive you crazy?
Through inquiries we soon found a nurse who came to the house, listened to our explanations and replied, "No problem: I've seen it before and I will handle everything!" I’ll call her Cindy, and she was currently sitting at the bedside of a terminally ill patient ("I'll be free in a couple of weeks, I think") and her confidence that she could manage the whole house and Patience was just what we wanted to hear.
With huge relief I left town, although I was still thoroughly involved form my home, phoning various people every day to arrange what needed to be arranged. Ruth remained behind another week until Mom came home (smiling ecstatically: the long-awaited day for her came precisely three months after the morning of her stroke), and then gleefully departed too. Soon we were hearing from Mom over the phone: "Cindy won't let me do this. Cindy won't let me do that!" We were satisfied. It sounded like Cindy was doing her job. The machine was working.
The machine broke down after about four weeks. For all her strength as a watchdog and nurse, it soon became clear that Cindy was not the comprehensive home health aide we had envisioned—the one who would eliminate any need for us to be enmeshed in the continuous rolling disaster that was our Mom. Cindy was befuddled by Patience's rapid-fire requests to find specific operas in the vast piles of videotapes, and selecting the right channel and volume on the TV remote was a challenge for her. She called the police when the alarm system in Patience's house made a low battery warning noise. She didn’t change a broken vacuum cleaner belt and a burned out light—she waited until we came to visit and asked us to fix them.
Cash was flowing out of the house at an alarming, undocumented rate. Cindy claimed she could not get receipts for her expenses. When we returned to Princeton and sat down with her to go over problems, she skipped from one topic to another without taking any notes on what we said. We had no sense that she was remembering or going to act on all the information we gave her. After two weeks she said, "I'm going to need to get some other help in here—I'll call my people." It seemed reasonable that perhaps Mom was a riot that required more than one Ranger, but who were Cindy’s "people?!"
This was not like having one of us there; Cindy was not coming across as the organized, responsible, calm house steward we needed—she was herself beginning to resemble as a continuous rolling disaster (Ruth characterized her as a "Tasmanian devil run amok"). We were frustrated and emotionally exhausted: what had we done to deserve this? "I want a puppy," Mom said over the phone, "so I phoned up those monks in New York State—have you read their book?"
Plus, the machine we had in place still needed lots of attention from us. While there we had to convince the bank to honor the power of attorney Mom had given us, and accompany Mom into the doctor's office so we could evaluate her assertion that he had told her she could drink again. We despaired that we would ever see the day that we did not have to go to New Jersey every three months to check the books or buy a new appliance or clean the gutters—tasks which surely someone else could be doing.
Mom was walking without support now and doing well in general—too well. "I'm getting someone from the Holisitic Health Association to bring me the résumés of applicants for the new position," she said excitedly, "so I can read them!" We knew from experience that anything she tried to read she soon put down on her left side and lost track of, after which she inevitably stepped on it or ground it into the left hand corner of the couch. So we took the résumés and got them copied—inserting ourselves into the system again. "The acupuncturist," Mom said, "tells me I should go to San Francisco for a special treatment. Would you come?"
Mom had been transformed from the fragile but willful patient into a manic whirlwind which generated so many ideas that the people around her could barely contain them. Yet the concern uppermost in the minds of most of the people around her was that she feel empowered—so they were indulging her requests. The phone rang, and it was a travel agent. "Could I speak to Patience?" "Sure—" I hesitated: how to find out what this was about without appearing nosy. "Uh—why?" "She phoned," he said, "about information on a cruise to England…?"
Ruth and I were so stressed out that we suspected that we were on the edge of nervous breakdowns. There was no BIRU to protect us. Mom was right here—in her own house, making phone calls and having things delivered. We found jam with liqueur in it in Mom's fridge, lost perspective and went ballistic. I began to note that my mind was splitting—that I could be talking to someone and be far away in my head at the same time. My memory was gone. I was exhausted constantly.
In a renewed effort to put a barrier between ourselves and Mom, we now hired a social work agency to manage the situation for us. We needed local, sane, objective fact finders who could respond to a health aide getting sick or quitting (Mom was such a whirlwind that this became a more real possibility every day) without us. The social workers improved the machine immensely, no doubt observing wryly to themselves that these children had some pretty unrealistic expectations of the home health care worker.
They brought in an accountant to control money flow in the house and a handyman who could cover the tasks which caregivers could not be expected to do. They also ushered Cindy and "her people" out (there were now a total of six women total involved in different shifts) and replaced her with three health aides, women who did not ask to be paid under the table. This agency was not only a light in the darkness for us, it proved to be the light at the end of the tunnel. They were so effective that within a few months we were able to cease short-notice visits. That’s not to say that the gods weren’t still having fun with Patience: sewers backed up in the house, trees almost fell on it, and the air conditioning failed. But we didn’t have to go.
It became clear that the reality of the machine was not and would never be what we had envisioned. Each home health aide (in time we would go through fourteen) was lacking in some area which Ruth and I naïvely thought was a prerequisite for being a normal person: how to be kind, or organized, or firm, or flexible, or understand how houses work. No aide was ever found who could get a receipt for each time they spent Patience's money. One of the best saw a squirrel come down the chimney and into the living room, and called the police. This was the kind of irrational response we came to accept as part and parcel of Mom’s house, as if the sphinx who lived there—a creature with the judgment of a toddler, the wiliness of a midlife alcoholic, and the memory and verbal ability of a fascinating older woman—exerted a strange field in which otherwise ordinary adults lost track of their common sense.
It took us at least two years to recover from that close encounter with Mom and her world, and to set up the boundaries that would allow us to interact with her at a safe emotional distance. Ruth got a new, unlisted phone number and put an answering machine on the old line so that she could take calls from Mom only when she felt she could handle it. We alternated responsibility for dealing with the occasional issue that the social workers could not handle—typically one phone call a week. Mom’s household evolved into what was literally a small, non-profit business, funded by her investment income and savings, employing directly or indirectly some ten people, with us as a sort of "board of trustees. "
The business functions well. Mom never has drunk again, although you couldn’t really say she "in recovery" because given the opportunity she would drink wine in an instant. She’s replaced that addiction with a number of others that are not so lethal: café latte for one. She’s not allowed to drive, although she’s never acknowledged that this is appropriate. Her physical therapy continues, and she continues to resist going to it. She still goes to the opera. She still wants a puppy. Her house is still a lightning rod for random Acts of God.
The tale, in my mind, stands as a lesson on many levels. Personally, we learned why we had put so much geographic distance between our mother and ourselves even before her stroke. As mortal people, we learned about what the health care system can and cannot see, what it can fix and what it cannot even record. As employers, we learned that some home health aides are better than others. As members of the community in which we grew up, we learned that we do not like or respect many of our mother’s friends, and that we did not have to please them. As engineers, we learned that we cannot construct a "machine" to take care of our mother.
Could we have been better prepared? Understand this: we were well prepared. We had all the right ideas in our consciousness, ideas you can get in the family counseling section of any good book store: relationships have to have boundaries; you might not like your parents; you must take care of yourself; don’t be too good for your own good, etc. When we needed them, those ideas were there for us as quickly as our little overloaded brains could locate and implement them. What we got that snowy winter was combat experience.
Were it to happen again, and it well might, we hope it would look more like this. We would, first of all, allow Mom to reach her own truce with the hospital staff—they’ve seen patients like her before and they can give them decent care without a family member running interference 24 hours a day. We would pour far less energy into being support staff, coordinators and information officers—family members can get away with acting a bit stunned and disoriented if no one knows that they actually aren’t that way. We would take our role far less seriously—family members can make a lot of mistakes and the world will not end. We would be bolder about explaining to relatives and friends what we were really seeing—and if they chose not get it, that would be their problem. You have to assume that being supported, being heard and being honored is as important for you as it is for the patient.
It has taken us years to get to this point of understanding. We didn’t expect what we found in New Jersey. It's no one's fault. On the ski slopes of parent illness Mom was a double black diamond run, and aside from a couple of good turns that we made at the top, we basically fell all the way to the bottom. We wanted it to be a heart-warming story of cooperative care—and when it wasn't we took a while to accept that fact that we had become cannon fodder in someone else’s war. We wanted to find allies around us, and when we didn't we failed to be confident that we had the power to explain what was happening and recruit some. We wanted to believe that it would all be over soon enough, and when it wasn't we just hunkered down and tried to tough it out. We had hopes about who our mother might be, but the person we met was far, far different.