by, Jenna Orkin
My students chastised me for not taking care of my mother myself. In their cultures, the elderly are looked after, by all accounts without resentment, sometimes even by non-blood relatives. One student, from Tajikistan, had a friend who’d taken care of her husband’s grandmother for fifteen years until she (the grandmother) died at the age of 112. And in Tajikistan, “taking care of” is no simple matter, even if the oldster is able to manage her own “toileting;” in that case, it involved hauling in wood for the fire and water from the well.
In the eyes of my students, therefore, I was a sorry excuse for a daughter. I bit that bullet and found a senior residence that was nearby and boasted expertise in Alzheimer’s.
The close atmosphere, with cozy lamps that cast a sepia tinge over the furnishings while show tunes from the 40’s played in the background, (surely audible only to visitors,) – wasn’t my mother’s style but would, if she remained at all sensitive to her surroundings, bemuse her. The place evoked the gentility of the deep South, as in the final act of Streetcar, when Blanche gets carted off to the loony bin. But, lifting my hopes, a large calendar on the wall was scribbled over in magic marker with the month’s activities: Movies, Ballroom Dance, Art Class and so on.
If Mum overcame her prejudices, (most likely through forgetfulness,) she could end up getting a kick out of this place. It was, after all, not unlike a cruise, but for the condition of her fellow passengers which she might be too out of it herself to notice.
I packed her a couple of suitcases: Night clothes, comfortable track suits and a few elegant blouses in the hope – pathetic, as it turned out – that they’d earn her some respect.
On the morning of the move, Anthony and Elizabeta took Mum out for breakfast before strolling down the street where they “happened” to run into the residence director who, as had been arranged, was standing at the entrance. She invited them in for tea. Charming conversation ensued; Mum must have been tickled.
Then it was time to leave.
Or so Mum thought.
When she realized the truth of the situation, Anthony said, “She tried to bite me,” only calming down when a nurse (in my imagination, the six foot tall one with the androgynous name) wrestled her into submission and injected her with a sedative.
Ms. Competent had wisely opted out of taking part in this scene. But, she had said, “I’ll come by when it’s over to introduce myself and make sure everything went smoothly.”
In other words, Anthony and Elizabeta would do the heavy lifting after which Ms. Competent would use the occasion to network with the residence director.
However, Anthony did not object. Indeed, he was relieved by the participation of Ms. Competent; when it came to people in charge, I, like my mother, had not been known, recently, for playing well with others.
The next day, I visited around lunch time. The floor was dark; the curtains drawn.
Most of the residents were women. But there was one squat man who waddled over to Mum and felt her up. She waved him away, not interested but at the same time, sympathetic to his desire. Unfazed, he moved on to a Frenchwoman who, with the same degree of absence as Mum, permitted his caresses as she talked a stream of surrealistic fragments to no one in particular.
“What’s today’s activity?” I asked the attending aide.
She stared back blankly. A few residents were sitting in front of the t.v., intermittently glancing at it before returning to their thoughts or absence thereof. One snored on the couch. Another walked around, sat down for a while, got up and went back to her room while a third came out of her room, walked around, sat down for a while… This seemed to be how they spent most of the day, like zoo animals who’ve become habituated to captivity.
At two p.m., an activity director came by to round up participants for Ballroom dancing.
“Do you want to come dancing, Gisella?” she asked Mum.
“What? No!” said Mum, not understanding the question and recoiling in fear.
“All right,” responded the woman pleasantly, before returning to the elevator with the sole resident who’d expressed interest. She already had enough takers from the early-stage Alzheimer’s floors.
“It’s dancing, Mum!” I protested.
But all Mum knew was, I was there and she didn’t want the visit to end. I made a mental note not to come at activity time.
During our initial interview, the director had said that there were regular trips outside but somehow, once Mum was enrolled, the weather was never quite right.
I hired an aide to take her across the street several times a week for decaffeinated coffee and a sandwich (she wasn’t eating much here, either) and kept her on the waiting list for the residence recommended by Ms. Competent.
It was when a bed became available there that we learned that what we had taken to be a routine deposit at Mum’s current residence was, in fact, a “community contribution” and therefore had to be forfeited.
Apparently, this graciously furnished human warehouse had anticipated family reactions to the real, day to day routine and devised a novel way to keep residents from jumping ship.
No matter – she was outta there.
The next home was cheerier – the dining-room, awash in sunlight – and quirky; the Montessori of senior residences. When Mum acted up, the nurse took her into her office where she stayed for hours, talking while the nurse took care of paperwork.
Also, the staff made an effort to include the less competent clients, of whom Mum was one. She attended a sing-along where most members were, in fact, chiming in. But either Mum couldn’t hear or she was too drugged to participate; she slept through the entire session, like the kid in school who ends up dropping out.
She was not the only lost soul in that residence. Another woman, a former public school music teacher who could no longer speak, was crying every time I saw her.
Meanwhile, Sunshine sent their bill: $1720.
“Care management; Visit; Care management; Coordination of Services; Communication with Client/Family or Other Social Support: 2.00 Hours; $360.” ” Care Management; Coordination by X.Y. [someone I never met in person:] 3.00 Hours; $540.”
By “coordination of services,” they meant agency employees who had spent whatever percentage it was of the five hours on that portion of the bill conferring with each other, then calling me to find out what each other had said.
“Care Management; Visit; Supported caregiver: 4.00 Hours; $720.”
This last item referred to the fact that the aide had been escorted to my mother’s apartment by the agency rep.
I sent $442, for two hours of “coordinating/management/visiting” services and a full day’s pay for the aide who had been hired and, through no fault of her own, not allowed to carry out her duties.
Needless to say, the bill was resent. I forwarded my previous email which read in part: “I am not sure why the caregiver needed support. She was capable of calling 911 herself. That ability is surely included in the job description. In any case, if the caregiver is the one being supported, she should be the one paying [the agency rep.]” The dunning letters ceased.
Mum’s new residence called. She was “not responding to medication,” residence-ese for “screaming her lungs out and driving us all crazy.” The doctor had tinkered with her meds to no avail; it was time for her to be hospitalized once again.
She was there for several weeks before the doctors determined that they had no medical cocktail adequate to control her enough to meet the standard of a senior residence; she must go to a fully staffed nursing home.
Only one of the homes they recommended in New York City was both able and willing to take her.
Anthony and I visited.
“The sheets are changed every day,” said the guide, “and if the resident has a bowel movement in bed after that, we change them again.”
“That’s good to hear,” said Anthony. “Once.”
“And this is the Activity room,” said the guide.
The residents were sitting in two rows in front of the television where a frenetic game show erupted in applause. There was no response from this audience; everyone was either asleep or unable to hold his or her head up to look. The back row wouldn’t have been able to see anything anyway. As usual in these homes, only the aide was watching and that, only desultorily.
The advantage of this home was that it was near enough for me to visit frequently. However, it was more important for Mum to be someplace where the staff would pay more attention to her.
She went to a home in New Jersey that had an excellent reputation for working with dementia patients.
It was two and a half hours away by public transportation, too far for Elizabeta. But there was one aide there who was able to induce Mum to eat. Probably she smiled or said a few phrases that allowed Mum to feel she was engaged with another human being.
It wasn’t long, however, before Mum made trouble here too. Once again, she needed to “have her meds revised,” code for “sent to the psychiatric ward.”
Here, the Activity Room was aptly named: It was a hive of activities. The t.v. was on, of course, but at the same time, directly in front of it, was a music class. An aide led the patients in a song, regularly sounding a triangle by way of accompaniment.
Anyone actually watching t.v. would not be able to hear while anyone paying attention to the music class would be distracted by the t.v. The word “bedlam” came to mind, (deriving from “Bethlehem,” this was, in fact, originally the name of a lunatic asylum.) Any resident who wasn’t crazy already soon would be.
Out in the hall, other patients lay on cots; some, groaning, as in a scene from Dante’s Inferno. Soaring above the general din, at regular intervals came a cry from a patient at the far end: “Help me!”
The staff walked past her, oblivious as figures in a dream where you’re screaming and no one hears.
Another patient took up the lament, like a bird recognizing the call of her own species.
“Help me!” cried the first patient.
“Help me!” echoed her soul-mate.
Since Mum was dozing, I went over to the first crier.
“What do you need?”
“They haven’t got, well, you know…,” she said, with a covert look as though I was in on whatever she was talking about. “It was… the other one… didn’t go there.”
I nodded knowingly until the woman had had her say. And the “Help me’s” went quiet, for the moment, from her end of the hall.
But “Help me!” Number 2 was still going strong.
“What do you need?”
“What time is it?”
“A quarter to three.”
“Afternoon or night?”
The woman lay back in despair. “I’m so tired. I want to go to bed.”
She was in bed but had, if not miles, then hours to go before she could get a night’s sleep.
Mum was on one of these cots too. A versatile contraption, it can function as a wheelchair when necessary. An aide unlocked the device so after rousing Mum, I took her for a walk through the halls where we toured the impressionistic reproductions on the wall. More importantly, we talked to anyone who was up for a chat. Mum was starving for a social life and I introduced her around in the hope that these people would greet her also when I wasn’t there.
In between visits, she got Physical Therapy as well as Occupational Therapy for her wrist which was curling in with the atrophy of her muscles. I’d signed her on for whatever the nursing home offered on the theory that if nothing else, she’d benefit from the contact with people. Even the visits from the pastor were welcome although in her coherent days, she would have been appalled.
“What’s her religious affiliation?” he asked.
“None.” Then, lest that be misconstrued, “N-O-N-E.”
The social worker had said that if the nursing home learned that my mother was born Catholic, she might end up with some heavy duty religious talk as well as last rites.
If she understood any of it, this would be sure to set off a fit of despair.
One day, I arrived to find Mum in her room, rocking back and forth. A string about six inches long was clipped to the shoulder of her gown at one end; at the other, to the back of her chair. She had been trying to “escape” again; this time, simply to go to the bathroom. But that was not allowed because it was dangerous for her to get around unassisted and there was no one available to escort her. Therefore, like a child in a classroom, she had to stay seated.
If I were a twenty-something, I would have had one of those smartphones to record the moment. The video would not have revealed Mum’s face; this was not her finest moment and in her finest moment, she would have detested the record. But posted on Youtube, it might have had some effect.
However, I am not a twenty-something with a smartphone.
I summoned the nurse.
“You wouldn’t do this to a dog.”
“I’ll call the supervisor,” said the nurse, smelling trouble, and left the room ASAP.
“She was trying to get out of the chair,” explained the supervisor with faux patience, as though the act were equivalent to attempted jailbreak. Did she think that settled the matter? (“Oh well then, of course you must tie her down. For $560 per day, you couldn’t possibly be expected to help her walk around the room a few times.”)
“You can’t restrain her all day,” I objected.
“It’s not a restraint!” responded the supervisor with unaccustomed vigor. “We don’t restrain patients. It’s not attached to her; it’s attached to her nightdress; she can get out if she wants to.”
“No, she can’t; she’s not strong enough. She’s been trying for the last half hour. And anyway, if she could get out, then it wouldn’t be effective, would it?”
However, with the word “restraint,” I had unwittingly hit a nerve. It is against the law, I subsequently learned, to restrain patients. The following week, the tether was longer and Mum, unaware of it and therefore, at peace.
In the interim, her doctor had been informed of The Situation (Read: Irate Family Member) and called to discuss it (Read: Placate Said Family Member.)
“The whole time I was there, she was trying to get out,” I said.
Agreeably enough he replied, “Yes, I know. I’m trying to find a medication to stop her moving so much.”
Why don’t you just kill her? That’ll stop her moving so much. Her movement, however potentially dangerous, is a sign of the life-force.
She was also continuing to lose weight. A lean 119 pounds for most of her life, she was down to 93.
“Her appetite is poor,” said the nurse, evoking a line from a Ring Lardner story: “‘Shut up,’ he explained.”
My mother’s second husband, the screenwriter Albert Hackett, (with his first wife, Frances Goodrich, he co-wrote It’s a Wonderful Life and The Diary of Anne Frank, among other films,) died at ninety-five after a “battle with” Alzheimer’s and anyone else who was around at the time. For the last five days of his life, he closed up shop which is to say, he refused to eat.
In her “right mind,” my mother had admired the expeditiousness of this exit and said that when her time came, she would follow suit.
A casual observer might assume that her time had indeed come. Mum, who was raising Cain whenever the staff bathed or even moved her, also shook her head when they offered her food, refusing the white roll, the gray beef, the boiled spinach. (I didn’t understand how anyone could stomach that turgid green mass but the nurse, a trooper for the institution, stalwartly asserted, “I don’t see what’s wrong with it.”) However, she gobbled up the papaya or mango I brought and smiled enchantingly at anyone who behaved not as though they were clinicians doing their job but friends who were happy to see her. Although, God knows, she could be implacable, there were times when she was not rejecting food so much as authority or simply being treated as a job rather than as a human being. (The nurses and aides are not to blame for this; they are victims too, overworked and underpaid; but the reality remains.)
Each of her residences had asked for any information the family would like to add about the patient. Each time, I’d provided a list of her preferred foods, especially the fresh fruit she craved.
“We can’t keep food like that on a large scale,” said the woman in charge of meals. “But,” she smiled as though the bright idea had just struck her, “you’re welcome to bring it yourself if you wish.”
I brought those foods but not a week’s worth of groceries. Mum’s weight continued to drop – to 88.
I fed her Ensure and applesauce; she wanted more.
“Sometimes patients don’t like to be fed by a stranger,” explained the nurse. “They’ll only eat if a family member gives it to them. You’re welcome to come at mealtimes.”
“Elizabeta used to feed her; she was no more family than you are. And there was an aide in [the first branch of the nursing home] who also got her to eat.” The implication being, “She’ll eat if you keep trying.”
The nurse busied herself with another patient.
This ward had an Activity room too but this was an Activity room with a difference; it was the end of the line. Even the t.v. didn’t pretend to keep patients entertained; it was set to screen saver – a palm tree bending slowly back and forth.
Probably this was to keep the more agitated patients from going berserk. The rest were so zoned out on whatever medication they were taking that they didn’t notice anyway. Or if they did, they soon gave up and retreated to sleep.
Despite the subdued atmosphere, one week, a fight broke out.
It started when a patient got out of her seat.
“Siddown,” snapped the aide.
“No,” retorted the patient.
“Siddown and shuddup!” snarled the aide, pushing the patient back towards her chair.
“No, you shut up!” returned the patient.
Now everyone joined in: “Yeah, you shut up!”
They were in their element, a dysfunctional family; the aide, wielding power only because she was in better physical shape, for now, at least. The scene brought to mind an article which claimed that people who take care of Alzheimer’s patients are six times more likely to get the disease themselves.
Mum’s weight fell further – to 85 pounds. “Appetite: Poor,” noted the nurse on her chart before wheeling the food away.
Again, I asked for Ensure and after a few protests from Mum (weaker now, like a mewling cat) she ate half the container.
Again, I reported that with respect to feeding my mother, the staff needed to keep trying.
“As they reach end stage, they lose the ability to swallow,” explained the nurse.
Mum had not lost the ability to swallow but the phrase “end stage” triggered the thought: She is now eligible for hospice.
We transferred her to her final stop: a hospice in New York.
Like its predecessors, this home was a place which Mum, in better days, would rather have died than end up in.
But as with its predecessors, now that she was there, she changed her mind. She still intermittently fought off the staff, refusing to eat, then wolfing down Ensure when Elizabeta or I offered it to her.
She was in hell. But she didn’t want to die: She wanted to go home. She was fighting for her independence.
Everyone does, observes a friend who used to be a Clinical Psychologist.
Only when she lost the ability to swallow did she clam up her mouth firmly and consistently, as she had always maintained she would.
Since a feeding tube was not an option and I didn’t want her to suffer hunger pangs, (despite the assurances of a nurse that endorphins make the whole experience more pleasant,) I instructed her doctor to up her morphine.
Three days later, at 5:30 a.m., the call came that she had died.
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