catapult magazine

catapult magazine

Vol 8, Num 23 :: 2009.11.27 — 2009.12.10


A eulogy in 12 days


Twelve days, she lay in her hospital bed. Twelve days, we filtered in and out, her family by proxy. We held her hand, her leg, her head—whatever we could touch. We sat crowded on her bed, drawing warmth from the fever that was killing her. I loved Lucy. Watching her die—watching others watch her die—changed me.


I work in adult foster care. Sometimes, I say that I wipe butts for a living to stave off the jokes and awkward questions. I’ve been at my job for over three years. It has become my calling. My residents are developmentally disabled with dual diagnoses. In layman’s terms: they are an extra fun kind of crazy. It’s not unusual to have a resident with Down’s syndrome, Obsessive Compulsive Disorder and multiple heath concerns. I cook, I clean, I pass medications. Most importantly, I deal with the different personalities and petty dramas that arise during the shift. My residents have lived together for years—some for decades. They are family in every sense of the word and they have all the squabbles that come with that.


One night I arrived in Lucy’s new hospital room—they transferred her from a room by the ER to the Heart Center to die—just as the others were leaving. My co-worker Jason wasn’t due for another hour and I had Lucy all to myself. I remember urging her to stop hanging on. I don’t know why I bothered; she rarely listened to me while her brain was active. I told her to let it go, whatever was keeping her body going. I pled and cried until it was time to be calm and sit again. Jason showed up and we watched The Office on her television until I left for home.


We were at our bi-monthly Team Meeting, a mandatory gathering for which only half the staff show up. Team is where we voice our ideas on resident care and coordinate on issues. Residents, as do most people in treatment, do best with consistency. Our boss Heidi was conspicuously absent. The message spread slowly by text: Lucy was in the hospital. It became obvious to Heidi by the number of texts from concerned staff at the meeting that no one was paying any attention, so she called the supervisors still at the meeting and it was cancelled. The official line was that Lucy choked at supper. Staff did their best to get her breathing again, but she had to be taken to the ER by ambulance.


Lucy was special—and not just, as I horribly joke, Special Olympics. She had Severe Mental Retardation. She rarely spoke and was as stubborn as she was obsessive. Her few words were about those items she was obsessed with: “stockings,” “coffee shopping,” “go to the bank,” “go for a van ride.” She had a particular way of speech that was slow and very sweet. And, oh boy, did she love to mess with new staff. She would take your measure with her piercing gaze and proceed to do everything you didn’t want her to do. Once she got to know you she would listen sometimes. But often the only tactic that would work once she decided to do something was to either wait her out or get her obsessed with something else.


Within thirty minutes some twenty staff members had congregated at the Spectrum ER downtown. We all came in at a run and then proceeded to sit. And sit. And wait. We called everyone we could think of and had numbers for. The attendants gave us our own room, which quickly filled. I had a horrible head cold at the time and chose to stay in the main lobby rather than infect my peers. Those gathered told stories of her strength and stubborn nature in the clipped sentences and catch phrases of those who work together with another person for years.

“Tell her she can have all the soda pop in Grand Rapids if she wakes up.”

“And coffee cups.”

“And stockings.”

“Heck, I’ll throw in one of Larry’s shirts and Paul’s orange sneakers. My latest trick in getting her to bed was to sneak them out of Paul’s room and into bed with her until she fell asleep, when I’d sneak them back to Paul.”

We had to request more Kleenex. We told stories of all the other residents who survived trips to the ER with practiced hope. Most of my residents are in their fifties and sixties. The average life expectancy of people with those types of disabilities is around sixty. This was not my first sick resident. In fact, they are quite resilient. I have one resident who is 89 and shows no sign of slowing. Even when they get deathly ill, if no one ever tells them that going on Hospice Care means “you die now,” they have a tendency to get better.


Lucy lived in a high-behavior home. To an outsider this seemed strange until one knew the history of Lucy. Understand that she was a little lady, skin and bones with a paunch. She had the pronounced slouch and off-center gait of someone who lived through a stroke. She hated loud noises. She had been kicked out of more than one home and day program center for her outbursts, which ranged from falling on a person, delivering the strangest flying kick in the history of DD Martial Arts to a brilliant aim with coffee mugs and flower pots. What made her so dangerous was her ability to sit on a grievance. Say a peer was yelling too close. It might be three days later before they got wholloped with her large red lunchbox. So we did our best to keep her away from the noise, often sending her on van rides that lasted hours, multiple times in a shift. The gas tank on the house mini-van was filled every other day. This worked for years to keep her behaviors in check. When the house was quiet, we would have her put together simple foam puzzles. She could sit calmly and force foam pieces into often-as-not-incorrect holes for hours. Her oldest puzzles had animals with missing limbs, stained brown by the coffee or diet coke she was often spilling. She obsessed over her beverages being filled to the brim and could easily be covered in brown splotches if staff weren’t careful. 


One night a number of us co-workers went out to German Fest and tried to drink away the pain of our dear friend lying in her bed dying of pneumonia. An hour after our designated drivers had each dragged us our separate ways the word went out: Lucy’s nurse called and she was not expected to live through the night. I talked my driver into a detour to the hospital, knowing I could find a ride home. Her fever had spiked to around 105 degrees and her nurse knew from experience that if it held that way she would die. The nurses did not expect the strangely merry, half-in-the-bag group that arrived. Coffee was sent to us and we crowded around and watched as her temp dropped and her breathing steadied out. After four hours when it was obvious she wasn’t going anywhere yet, we dispersed once more, our hearts heavy and our heads throbbing.


Her mouth was usually set in a pout, especially pronounced due to her lack of teeth. She could smirk with the best of them. Her smile, when aimed your way, could easily wipe your heart of all her past behaviors. At night she would say her prayers, when prompted. This was one of the only sure-fire ways to keep her in bed, so it was prompted often. “Now I lay me down to sleep / I pray the Lord my soul to keep / If I should die before I wake / For Jesus’ sake, Amen.” No amount of prompting could get her to remember to ask Jesus to take her soul. That part was forgotten years before.


Lucy choked on her supper. The staff member who cut her dinner up is one of the best. It was a freak accident. Either some food was missed or Lucy took too big of a bite, both were known to happen. Those who work with people who have been without teeth for a long time know how powerful those gums can get. I’ve seen residents with no teeth chow down on potato chips with no complaint. Lucy was one to eat anything as long as she wasn’t obsessing over something else. After getting over the fact that a 63-year-old mentally retarded woman had 20-some people waiting for news, the doctor in the ER explained that when the Heimlich didn’t work and the EMT’s put in her breathing tube, they perforated her esophagus, pumping air into her belly instead of her lungs. She had been without oxygen for too long. They would do all they could, but it did not look good. She still had food in her lungs that would result in pneumonia and would have to be surgically removed. The family chose not to go with surgery as she had vastly outlived her life-expectancy at birth. Most developmentally disabled children born in the 40s were expected to survive only until their teens. Lucy’s family also felt that her quality of life would be greatly diminished and after a number of days her breathing and feeding tubes were removed.


One of my strongest memories of Lucy is from when I worked a third shift. When she didn’t fall asleep right away, you knew you were in for a crazy night. She would wreak havoc in her slow and steady way until she passed out from exhaustion around 5:00 a.m. During this shift, I was deliberately withholding attention from her. I shut the doors to the office and locked up anything dangerous, watching her through our windowed office walls. She spent some time climbing onto chairs, trying to get instant coffee or diet pop. Every time she did, I had to be right there to catch her when she fell. I got very little work done. Around 3:00 a.m., she gave me a look through the glass and I heard the unmistakable sound of her urinating on the floor. She continued to look at me as, over the next half hour, I cleaned her, the mess, and checked on other residents to make sure the noise of the carpet extractor didn’t wake them. I sat back down in the office, determined to just make it two more hours until other staff arrived. Just as I began to relax, I heard something splattering and ran out to see her urinating three feet from the still-wet spot. As she usually did, she broke me. I woke up our emergency-only sleeper staff.  “I have murder in my heart,” I said, and let him clean her up while I attacked another two-foot puddle on the floor. I returned a week later and the smile she gave me over some soda pop erased any anger I had.


Lucy died September 30 at 5:30 am of pneumonia. Her breathing had gotten steadily worse until it was hard to sit in the room with her. She died surrounded by all of her favorite obsessions, which staff had brought in one by one: a pair of shoes, some socks, a kitty purse. And lots of soda pop. Her family sent us many cards thanking us for being her family in Grand Rapids. There are little reminders of her spread throughout the home I work in and staff divided up her stuffed animal collection, each taking one. I close my eyes and I see her, stumbling toward me with her uneven gait. She smiles with her upturned pout as she opens her arms.

“Go to the bank?”

She looks at me with persistent, yet hopeful eyes. I look back with the knowledge of how much I can love. I will always think fondly of Lucy and how she could break me across her stubborn nature and lift me back up with only a smile. She was a special woman. I loved her very much.

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