This post will begin a new series of reflections.
As you may know, I am primarily a teacher. I have been teaching since I was a child, and it is one of my greatest gifts. The corollary is that I love to learn; I am always seeking out new information and new people who can teach me what I do not know. Over the past several years I have taken quite a few courses and classes, achieved several certifications in fields that were entirely new to me, and read at least a dozen books about my specialty areas. But as always, it is the residents from whom I learn the most important and enduring lessons. I will change their names as required by law, but the stories are real.
This new series will share some of the most significant and life-changing lessons I have learned as a Nursing Home Chaplain, and during my brief career as an Activities Director for a skilled nursing facility. I hope you enjoy this opportunity to walk alongside some of the best teachers I have ever encountered.
Ramona – a Touching Story
“Ramona Victoria Quinn!”
“Ramona Victoria QUINN!”
“RAMONA! VICTORIA! QUINN!”
The screams reverberated in the busy hallway.
I crashed the tray onto the "dirty" cart and sprinted around the corner. There stood Ramona, her face contorted with rage, tears practically spraying from her eyes. Her hands were clasped in her hair, causing her parka to ride up and show the ragged hems of the four sweaters underneath, and her hospital pants sagged alarmingly. This posture made her look even larger than her normally-imposing stature. Her back was pressed up against the hallway wall across from her room, and she focused all her fury on the tiny aide in front of her.
The aide, Joy, was alone in the hallway. Everyone else – three nurses, the Interim Director of Nursing (iDON), five aides and the Medical Records Assistant – had taken cover behind the nurses’ station. Ramona had a rep. Large, brooding, unkempt and rude, she had several significant mental illness diagnoses and was given to outbursts of violent verbal and physical rage “for no apparent reason.” We had accepted her for admission, and now we couldn’t really get rid of her unless she hurt herself or someone else. She hadn’t hurt anyone yet, but we all knew it was coming. And now Joy – 5 foot 2 and maybe 90 pounds – was facing Ramona alone.
Joy lived up to her name; she was one of our most cheerful, caring and gentle aides. She had a real heart of compassion for the residents she cared for, and she was operating that way now with Ramona. Quietly, she reached out a hand to guide her. “I know you’re upset, Ramona. Come on with me. Let’s go back to your room now.”
Ramona watched Joy’s approach with outrage. If she had been a dog she would have torn the extended arm off. And then I saw something that chilled my blood. Ramona turned her head and looked down at the wheelchair footrests someone had left in the hallway. Weapons. This was it. The time we knew was coming. Ramona would kill her. And it all could have been prevented if Joy had just read the Care Directive. I admit I was angry. I dodged around a treatment cart and skirted the vitals machine. Practically tackling Joy, I pinned her arms to her sides, jerked her back and called out, “Ramona! I’ve got her. You can make it now!”
Immediately she took her hands out of her hair, grabbed the waistband of her pants and scooted across the hall. She was still wailing, but the tone had changed from furious to forlorn. She crashed the door open and disappeared into the room.
In the silence that followed, a small tearful voice came from the darkness. “Are you coming in to talk to me?”
“I’ll be right there,” I said, almost panting, as Joy looked at me with shock, confusion, and betrayal in her face.
When I came out of Ramona’s room, still alive, a half hour later, the staff glanced at me out of the corners of their averted eyes with a mixture of disbelief and respect. It was at that point that the Director of Nursing began to call me “The crazy person whisperer.”
The lesson I learned from Ramona is one of the most important and influential of all. It has brought me more success and been the source of more anguish than any other lesson I can think of. Ramona’s lesson was the vanity of assumptions.
When she arrived, I completed her intake assessment, and as part of that process I read the summaries from other people. She was in her 60s, had mental health issues, had been homeless, was a smoker, and could not live on her own. She refused to participate in our required assessment process when it was done formally, so I started in observing her behavior so I could craft my own assessment and begin to take a whack at care planning.
Observing her was not difficult; she spent much of the first few days stalking briskly about the building, rattling her walker, glowering at everybody. Whenever we invited her to an activity, she would either shake her head or bark “NO! Leave me alone!” She would occasionally make herself coffee, and she always knew when it was time for smoke break. I marked “smoking” down under favorite activity, and gave it a 4 out of 4 on the importance scale. I supervised the smoke break once a day and so was able to observe her for a longer time. She came down, took her cigarette, sat down as far away from the others as possible, and smoked. If addressed, she would draw on the cigarette until it glowed red and the ash grew in volume alarmingly, but would not answer. When she had finished her single cigarette she would put it in the ash can and leave abruptly to go back into the building.
Right off the bat there were a couple of odd things about her. First and foremost, she wore all her clothes at one time. Even though it was a warm Spring, she put on five sweaters and her winter parka every day. After a week she doubled up the hospital pants and added a knit beanie in a very incongruous shade of pink. Incongruous because all her other clothes were dark, masculine colors. Olive drab and black and grey and brown. She wore no socks under her unlaced lumberjack boots. Her voice was low-pitched and gravelly from smoking; her salt-and-pepper hair shoulder length, unkempt and lank. She presented an altogether masculine appearance except for that bright pink beanie.
Another unusual behavior I noticed was that she always came down last for smoke break. She was invariably early; waiting by the elevator up to half an hour before smoke break, but when the smoke break supervisor came with the cigarettes she let everyone else go first.
I thought about what I’d read and decided I at least had an explanation for Ramona’s layered look. She’d been homeless. She was used to wearing all her clothes so they wouldn’t be stolen, and to keep warm through the cool Pacific Northwest nights. So I mentally checked that item off as “resolved” and added it as a brushstroke in the painting I was making of her. In her willingness to go last I saw some vestiges of politeness, or perhaps animosity or low self-esteem.
After a month she began to relax and to sit sometimes at the intersection of two hallways, still glowering but not stalking. But then things began to go wrong. She swatted an aide. Leaped out of bed and fell when the night nurse came in to give her meds. Started screaming at people to leave her alone. She threw a pillow. Picked up her walker and slammed it into the glass door.
The staff stepped up their efforts to connect with her, to no avail. Her behaviors became worse, and we began to talk in our daily Stand-Up Meeting about needing to transfer her someplace else. Someplace more suitable; better able to handle her outbreaks. Unfortunately, noplace else would take her. The word “Dangerous” began to be used. “I’m afraid of her…” was said at least weekly. The instructions given to staff were “Care in pairs. Don’t engage her. Just let her alone.” Of course, it's not possible to totally avoid a resident (particularly if you're their aide or nurse), but she was given a wide berth, but still she had outbursts, at “random” times.
I did wonder, sometimes. It seemed that everyone who spent any time on the floor had had scary encounters with Ramona, but I never had, and I was around her frequently. My experience with residents is often different from that of others, so this in itself didn’t stand out to me. She didn’t frighten me, and I had seen some of her outbursts. I also do know that people don’t have behaviors for no reason, so I didn't buy the "random outbursts" line. But, to my shame, my none of that caused me to investigate for myself. I was told it was part of her complicated mental illness, and that seemed like a good answer. I was not, after all, a nurse or psychologist, and the people who were telling me that were well-qualified to know.
The warmer it got, the more clearly uncomfortable Ramona became in her snow clothes, but she persisted nonetheless. I wondered how long she had been homeless and how long it would take her to be secure enough that she begin to dress cooler.
One day at the end of May I was supervising smoke break and my cellphone kept pinging. One of the residents asked, “Who keeps texting you like that?”
“It’s my students. They are working on their final projects, and these are their last minute panic attacks going “Mrs Carson – I’m way overtime…can I have an extension…” or “Do I have to memorize this???” or “How do I set up the projector for my presentation?”
“You’re a teacher?” asked Ramona. I nodded. “Yes – that’s why I’m not here on Thursdays. I teach high school that day.”
I immediately forgot all about this interaction, until Ramona showed up at my office a few weeks later. I always came in early before the Stand-Up Meeting to do the prayers over the Intercom and get my ducks in a row for the day. My office was on the lower floor, while all the resident rooms were on the upper one, and I had never seen Ramona down there before except to go out for smoke break and come right back in again. She came to the door. Fantastic. How does one not engage when the resident comes looking for you?
“Morning, Ramona,” I said as I checked my Email. “Do you need something?”
“Hi,” she answered. This was unusual. She didn’t usually answer. But she said nothing more. I glanced up at her but she was looking away. I went back to my computer.
“I was wondering.” She said, and just stopped there. I stopped typing, looked up and folded my hands in my lap.
But she was looking away again. After a confusing few seconds of silence, I noticed my computer telling me I would be logged off for inactivity, and moved the mouse to dismiss the dialog.
“You’re a teacher. Could you give me some school work to do?”
“WHAT?” The response just popped out, louder than I wanted it to, and Ramona backed away and stalked toward the elevator.
“Wait!” I called, and thank the Lord I didn’t get up. “I can do that. You took me by surprise is all.”
She pushed the elevator button and didn’t answer. I kept trying.
“I’ll have something for you tomorrow. What kind of school work would you like?”
The elevator door opened and she barged inside and I thought I’d lost her. But she pushed the door hold button and said quietly “Letters. And ads.”
“Ads?” What kind of ads, I wondered.
“ADDS. You know, 2+2 is 4 and like that.” The door slid closed and she was gone.
I sat for a long time staring at my screen without seeing anything. Letters and adds? At home that night I went to one of our homeschooling support sites and printed out some worksheets. Cursive writing templates, printing templates, and basic math. I looked at them doubtfully. I didn’t think I’d need them. There was no way she’d venture downstairs twice in two days. But I was wrong. When I arrived the next morning, there she was - waiting for me.
“Got my schoolwork?” she asked. I turned on the light and pulled out the worksheets.
“Is this what you wanted?”
She looked through them and handed some back. “Adds. I can’t do minus.”
“Oh, OK. Would you…um….like to sit down?”
“No.” She shook her head and stood there in the doorway staring at the sheets in her hands.
“Is….everything OK?” I asked.
“Pencil!” she barked, and I fished one out of Kathy’s pens and pencils can.
She balanced herself and held the papers and tried to use the pencil.
“Really, you can sit down. Use Kathy’s desk.” My assistants didn’t come in until 9:30.
But she ignored me and kept struggling with the pencil and I just let her be. At 9:00 I stood up. “Ramona, I have to go to a meeting.”
“Bye,” she said, and I’d never heard her say that before.
The next morning she was there, and had completed two of the worksheets. She held them out to me.
I glanced at them. “You finished,” I said, smiling.
She shrugged. “Yeah.” I handed them back and she snatched them away angrily.
“What’s wrong?” I asked in desperation.
“I thought you said you were a teacher – you’re supposed to grade them.”
I went over them and checked the wrong ones and gave the paper back.
“What’s my grade?” she asked, and I took the papers back and wrote C+ on the top. The next day she came back and handed the same paper to me. I just looked at her.
“I fixed them,” she said, and I checked her work while she struggled to write the letters. In my purse was a sheet of the stickers I used for my highschool students’ writing. I took out a sparkly star sticker and stuck it to the top and handed it back. Ramona froze, all the other pages falling from her hands and fanning out around her on the floor.
“What’s that?” she asked, pointing to the star.
“You got them all right. A+,” I said, and for the first time I saw her smile.
Thus began our surreal tradition. After a few days, I had an idea: before she got there I clipped some new worksheets to a spare clipboard. She was very suspicious, but she tried it out. It worked better, and for some time she stood in the doorway with her clipboard resting on her walker, doing her letters and adds. Every time she got a perfect paper I gave her a sticker. But I couldn’t get her to come into the office.
One morning in June I was coming in with my arms full of decorations and Ramona was waiting for me. I got my keys in my hand but couldn’t reach out to open the door without dropping my load. “Here,” I said to Ramona, holding out a finger with my keys on it. “Would you please open the door?”
Ramona looked as if someone had thrown cold water on her. She looked from my face to the keys and back again. “Please? This is heavy?”
Slowly she reached out for the keys, like someone reaching into a mousetrap. Taking them from my finger, she inserted the key into the lock, and with a last uncertain glance at my face she turned the key and stepped back.
“Um….if you could open the door…???”
I thought for a minute she was going to run away. But finally she turned the handle and pushed the door open a tiny crack. I went in and dropped all my stuff on the floor. I logged into my computer and turned around but the doorway was empty. Where had she gone? But then I saw her behind me, seated at Kathy’s desk, scribbling hurriedly at a worksheet. I let her sit, afraid to say anything lest I frighten her away, and prayed a rather unsteady prayer of thanks for unexpected blessings over the intercom.
For the next few weeks she came in and sat at the desk, working on her schoolwork while I prayed, graduating from individual letters to sentences. Clearly she had just needed a little brush-up.
My assistants were not pleased.
“I won’t come in if she’s in there. I’m afraid of her,” said one, who had had a few scary encounters with her in the past.
“She makes me nervous. She doesn’t like me. I think she’s evil,” said the other.
I agreed that they didn’t have to come in when Ramona was there, and indeed she didn’t stay after I left for Stand-Up Meeting. I began coming in earlier so she would have more time. The only time I saw her quiet and content was when she was sitting at the desk doing her schoolwork.
Throughout this time, we had tried to do two quarterly assessments, but she would not answer any of the questions on the short MDS paper we use. But one day I was putting together some new admit assessment packets, grumbling about having run out and she said, “I could do that.”
“I’m sure you could.”
“Really. If you give me some papers I’ll make the stacks.”
I handed her the 5 different pads of forms and she put them together and paperclipped them neatly. She looked through one and said, “What are these for?”
“When new people come in, we ask them these questions to help us get to know them.”
“Could I fill one out, do you think?”
My heart soaring, I pretended nonchalance, saying, “Sure. Just use a pen to do it. It has to be filled out in pen; it’s the law.”
She picked up a pen and filled out all five pages. She had to stop several times to ask me what the questions meant. She was flabbergasted at some of them.
"What does it mean in...inco..." her brows came nearly together as she struggled to read the unfamiliar medical word. "Inco-TINE-tent? Is that it?"
"Incontinent?" I asked.
"Yeah. I guess. What's that?"
Why do these questions always come to me??
"It means can you go to the bathroom by yourself or do you have accidents."
"WHAT?" she bleated, and for once she turned and looked right at me. "You're the church lady! Why do you need to know if I poop my pants?"
I cobbled together an answer, and she returned to the form without further comment, though I heard her rehearsing "In-content" several times under her breath.
I skipped Stand-Up Meeting that day because we had not been able to complete any assessments for her up to that point and I wanted her to be able to finish. My assistants came and went upstairs without stopping in the office, but at the end of 90 minutes she handed me the completed forms.
“Very nice,” I said, trying not to sound too enthusiastic.
“Do I get a star?”
“Well, not on the forms – that’s a legal record.”
She seemed to be alarmed at that information, so I handed her the sheet of star stickers. “Here. You can put stickers on another form and I’ll keep this one to check, OK?”
She sat there staring at the stickers. Reaching above her head, she took down a blank piece of cardstock from my fancy paper pile and began affixing stickers to it. She made an almost perfect circle. When she was finished, she asked, “Do you have more of these pretties?”
That’s what she always called them.
“Tons,” I assured her.
“Could you bring me some to use myself? I might like that,” she said quietly.
The next day I brought her a bag of various stickers, and she sat happily at the desk for more than an hour sticking them onto printer paper, making designs.
Things had been so peaceful that I should have expected something to go wrong. Ramona had begun talking – more to herself than me – while working, and at first I didn’t really hear it, because I was at my desk, typing up progress notes and making calendars and other vital tasks.
“Come see this,” she said one day, and it was the first time she had invited me over to her desk. When I looked over her shoulder, she had filled a paper with butterfly stickers, and written a message to God on the top. Here is the picture Ramona made:
I had no idea she thought about God at all. “Ramona!” I said in an awed voice. “That’s the most beautiful thing!”
With a cry that nearly knocked me backward she snatched up the paper and leaped to her feet. Crashing her walker into the desk and doorframe she left the office, cursing and yelling “YOU’RE a LIAR!” before finally throwing herself into the elevator.
I just stood there for a long time, staring at the elevator door.
What the heck?
In the back of my mind, the voices of the others started talking. “She’s mentally ill.” “Her behavior doesn’t mean anything…it just happens.” “No way to prevent it..”
But I’d been spending enough time with Ramona listening to her self-talk that this time I didn’t take those comments at face value right away. I realized that we had hammered out a sort of relationship. All relationships require effort, and maybe I couldn’t do anything about her end, but I had to do what I could to make my end right. I gave her a chance to cool down, then went upstairs after her. This was something that just. was. not. done. I found her sobbing into her pillow, her butterfly picture placed carefully on the tray table.
“Ramona,” I said quietly.
“Liar!” she screamed.
“I didn’t mean to offend you,” I said. “Your picture made me happy. And you said you loved God, and that made me happy. It makes God happy too. ‘Worship’ just means telling God we love him, and He enjoys our worship. I still think your picture is beautiful.”
“It is!” she cried out, and I left the room shaking my head, having no idea what I’d just participated in.
The next morning, she was not waiting by my office, and I unlocked my door with a sinking heart. But there on the floor, shoved under the door, was her butterfly picture. Only this time, she’d written another note at the bottom. Here’s what Ramona wrote:
My autistic brain saw immediately what had occurred. I had said her picture was the most beautiful thing. But in her mind, God was the most beautiful thing, so her picture was not. And she reacted violently to this assault on God’s majesty. Now her “meaningless, disturbed behavior” was not only understandable; it was laudable. Why don’t we all get upset when God’s name is maligned or used in vain?
I didn’t know whether she meant me to have the picture or was just showing it to me, so I set it aside carefully in case she came back later.
I saw her at smoke break in the afternoon and I said, “I understand about the picture now. You’re right. It’s a lovely picture, but not beautifuller than God. Do you want it back?”
She shrugged. “If you want you can have it. I can make another one. Do you have more pretties?”
I told her I did, and the next morning she was back at Kathy’s desk.
By the end of the summer she had progressed from sentences to poems. Her poems were very insightful, and short, and I committed them to memory and typed them out. I had begun praying for her, and soon I got a fantastic idea: for Christmas, I was planning to take some photos to go with them and make a photo book at Walgreens so she’d have a book of her own poems.
But Ramona continued to have troubles upstairs. Periodic violent rages and fits of sobbing which I only heard about the next day at Stand-Up. The staff as a whole was afraid of her, and with our survey window coming everyone had heightened anxiety about her outbursts. But she sat for longer and longer periods in the Activities office every morning. I shared this information with the Interim Director of Nursing, who came surreptitiously to observe a time or two. She let the nurses know that they could ask for my help if they were having trouble or were afraid of her.
Something more significant (to me) happened in August. Ramona watched me every day when I came in. I’d come in the door, turn on the light, take off my sweater and hang it over my chair, turn on the fishtank light and feed the fish. Rather like Mr. Rogers, only my Keds were flag-print and not red. If I had too much in my hands, I would give her the key to open up, and she would turn on the light, turn on the fish tank, and feed the fish while I arranged my parcels. She did not hand my keys back to me until she was ready to leave; rather, she kept them right next to her on the desk. I’d tried retrieving them myself but she had reacted very strongly to my picking them up and so I let them be. That amazing morning in August she stood behind Kathy’s chair, took a deep breath, and taking her parka off she hung it on the back of the chair and sat down.
I had never seen her without her parka. She even wore it in bed. My heart was rejoicing inside but I took it in stride and said the morning prayer. She did not remove any of her sweaters, but the parka was a big step. It was very hot in my office even with the fan running, so I had reason to hope she would remove the sweaters before the weather cooled off on the Fall.
Early in September, while we were sitting at our desks with our backs to each other with the fan running, Ramona began to talk. She talked all the time and it was just white noise to me while I worked on my administrative minutiae. There was nothing different about her tone of voice, at least not that I can remember, but for some reason that morning I listened to what she was saying. The first few statements were standalone, but then the rest all ran together into one long sentence.
“It’s hot in here. It’s hot on the street. Or cold. Either hot or cold and never comfortable. I’ve been on the street allmylife. Since I was 8. Little Ramona Victoria always looking for a place to pee. I had an uncle dan. He put us to bed. All of us. Boys and girls too. My brothers Robertvictor and ReginaldVernon and RichardVick and Rusty my sisters RainyVeronica and ReneeVeronica because they were twins and RebeccaVista because she hated me. He didn’t care boys or girls he just wanted a kid to sleep with on the floor. I never looked down. I wonder where my brothers and sisters are. They don’t care about me that’s for sure. They never come to see me. Or ask where I am. I wish someone could tell them where I am.”
I knew from prior experience that she would only talk if I kept typing, but I was flabbergasted by the appalling story that was spilling out on the other side of my office. I kept my fingers going but I was typing jibberish, with bits of her story in it. Her voice was getting angrier and angrier as she narrated.
“But they don’t care. And I don’t want them to come. Maybe. I’d like to see them but that’s all. Just seeing. No hugs. I’ve been arrested for trespassing 27 times because I wanted to go in out of the street but I didn’t have a key. Keys mean you can come in. No keys mean stay out. I went to jail three times for no keys. And when you go to jail they put you in a little cell all by yourself and they use their keys in the door and take them away and no one touches you for maybe a year and it makes you really sad because you just want someone to touch you but then you get used to it and then you like it and you don’t want anyone in there to touch you anyway because they always only want to hurt you. Like uncle dan and rusty and Becca and Mama. And then when you get out you’re afraid to be touched. And.you.don’t.want.anyone.to.touch.you.ever.again. But they keep on touching you and you hate them because they don't listen and sometimes you hate them enough to kill them.”
My mind was reeling. She’d given me the key. Several keys, in fact. She kept talking, but I didn’t hear much more. After the Stand-Up Meeting I went to the iDON and closed the door. “I know why Ramona wears all those clothes,” I told her.
When I reported what Ramona had said, her eyes grew wider and wider and her mouth started to hang open. I finally finished, “And so she wears all those clothes to keep people from touching her.”
I’d mentally reviewed all the examples I knew about. She swatted an aide who was trying to lead her to the shower room. The night nurse probably came in and touched her arm to wake her. I told the iDON, “We need to put it in her care directives that the care staff shouldn’t touch her. She’s independent in all her ADLs and can take her own meds. They just need to not touch her.” She agreed and told me to draft something up.
On my way to the office, I reflected that I now understood why my keys were so significant to her, and why she kept custody of them until she left; they were her permission to be in the office. I recalled that she had not agreed to come in until the morning I had handed her my keys and asked her to open up.
It’s fine to put something in the care directives, because all the aides are supposed to review the care directives for their patients before each shift. But this rarely happens; there just isn’t time. And the notes at the bottom (the ones Activities contributes to) are often skipped because they don’t relate to important care areas, like dietary texture or how to transfer. So training is often necessary. I tried to go around and train all the aides and nurses, but there are always people you can’t get to. The aides didn’t have regular assignments: there were 14 possible sets plus two shower aide positions and anyone could be anywhere at any time. But the fear of being touched explained her seemingly “random, unpredictable” behaviors, and the aides were relieved beyond description to be told they didn’t have to touch her.
So here we were, Joy and I, locked in opposition because the information that would have prevented the confrontation was buried in the care directives. I set out to find Joy and explain all this to her, wishing once again that there was some kind of alert sheet I could use that would get information out.
I did eventually make a sort of alert sheet. And it was well-received. But it was too late for Ramona. As turnover worsened and a new Director of Nursing took over and the culture changed, Ramona had more and more problems. She still had her daily hour of peace when she came to the Activities office, and she began talking to me during the smoke break. But one Friday while I was on vacation, she attacked a staff member and was sent to the hospital for psychiatric evaluation. From there she went to the state mental hospital, too far for me to visit her, and I never saw her again.
I have her butterfly picture hanging above my desk, and a packet of her poems in my file drawer.
From Ramona I learned humility. I could have possibly reached her sooner if I hadn’t thought I knew all the answers, or just accepted the verdict of others who thought they knew the answers. “Oh, I know why she does that…” A little bit of observation and investigation would have shown me that the answers I was getting from other people were off track, and mine weren’t hitting very close to home either. Ramona taught me that everyone is unique. Don’t assume. And most importantly, nothing is beautifuller than God.