The notice came while I was sorting Dad\u2019s mail at my kitchen table. $390 a month for oxygen therapy. Sixteen hours a day. The amount was printed beside a little picture of a smiling older man, like that made it easier to look at.<\/p>\n
I\u2019d been at the facility that morning. Dad had stopped twice trying to finish one sentence.<\/p>\n
The machine beside his bed was cold.<\/span><\/p>\n I didn\u2019t know what that meant yet. I just put my hand on it because I\u2019d been staring at the tubing and trying to figure out whether it was plugged in. The aide, June, was folding a towel near the closet. She said they checked Dad\u2019s oxygen levels regularly and they were \u201cwithin range.\u201d<\/p>\n I\u2019d heard that before. I\u2019d accepted it before.<\/p>\n Dad\u2019s name is Walter. He was seventy-eight then, and I\u2019m his daughter, Elise. I live in a paper-mill town in Maine where the roads get named after families that stopped owning the land two generations ago. I\u2019m not a nurse. I work in payroll at a plumbing supply place. I know how to match a charge to a date. That is about the whole of my medical training.<\/p>\n I took a picture of the machine\u2019s hour meter. It read 112.<\/p>\n Dad had been in that room for nineteen months.<\/p>\n The thing I kept looking at was not the number. It was the dust around the plug.<\/span><\/p>\n Dad wasn\u2019t always sick. He used to split his own firewood and keep a coffee can of screws sorted by size, even though he\u2019d forget where he put the can. He had a laugh that came out before the joke did. After Mom died, he\u2019d call me Sundays and ask whether I\u2019d eaten anything besides toast. I\u2019d say yes, even when the answer was toast.<\/p>\n Then he got short of breath. His doctor prescribed oxygen. The facility said it would be handled.<\/p>\n So I let them handle it.<\/p>\n That was the first thing I was ashamed of. Not the bill.<\/span> The weeks I\u2019d walked into Dad\u2019s room, seen him sitting upright in the chair, and told myself the staff knew what they were doing. I\u2019d touch the tubing sometimes. I\u2019d ask if it was working. Someone would say yes, and I\u2019d feel relieved enough to go home.<\/p>\n The bill kept coming. $390, month after month. I paid it because Dad\u2019s pension covered most of his care and I covered the parts that didn\u2019t. There wasn\u2019t a dramatic family meeting about money. There was just me moving one payment around so another one would clear.<\/p>\n The notice that started this had a new line on it. \u201cOxygen therapy, sixteen hours daily.\u201d I read it twice, then checked my picture again.<\/p>\n I called the billing office. A woman named Denise answered. I wrote her name down because I\u2019ve learned to do that.<\/p>\n \u201cHis treatment\u2019s documented,\u201d she told me.<\/p>\n \u201cI\u2019m looking at the meter.\u201d<\/span><\/p>\n \u201cThose machines don\u2019t always reflect the full care provided.\u201d<\/p>\n \u201cThen what does it reflect?\u201d<\/p>\n She paused. \u201cI can have the clinical director call you.\u201d<\/p>\n I said fine. I was still trying to be polite. I thought maybe I\u2019d misunderstood what the meter counted. That was a small, comforting thought. I held onto it longer than I should have.<\/p>\n I called the oxygen supplier next. I asked whether the hour meter was optional or if it could be reset. The man on the phone told me it was built into the unit and recorded the hours the machine ran. He said the number could be low if the unit had been replaced.<\/p>\n It had not been replaced. The serial number matched the delivery sheet from nineteen months earlier.<\/p>\n I didn\u2019t tell the facility that part yet. I wanted to be sure before I accused anybody. Also, if I\u2019m honest, I didn\u2019t want to be the difficult daughter. I\u2019d seen other families make scenes at the front desk. I judged them. Then I went home and spent half an hour deciding how to phrase a question so no one would think I was accusing them.<\/p>\n The next visit, I brought a notebook.<\/p>\n Dad was in his chair, wearing the brown cardigan with the loose button. I\u2019d sewn it back on twice, badly. His breathing sounded like he\u2019d just come in from shoveling, even though he\u2019d only walked from the bathroom.<\/p>\n \u201cDid they give you oxygen today?\u201d I asked.<\/p>\n \u201cThey said I\u2019m fine.\u201d<\/p>\n \u201cThat\u2019s not what I asked.\u201d<\/p>\n He looked at the tubing. \u201cSometimes.\u201d<\/span><\/p>\n I kept my voice even. \u201cDoes it run when you\u2019re asleep?\u201d<\/p>\n \u201cNot always.\u201d<\/p>\n I asked why. He shrugged. \u201cIt makes a noise.\u201d<\/p>\n The machine did make a low rattly sound. I\u2019d heard it the first time I visited. It was the kind of thing you stop noticing if you\u2019re there long enough.<\/p>\n I checked the plug. It was in the wall. I pressed the power button. Nothing happened. The little screen stayed dark.<\/span><\/p>\n June came in carrying a tray. She set it down and looked at the machine.<\/p>\n \u201cIt\u2019s been temperamental,\u201d she said.<\/p>\n \u201cSince when?\u201d<\/p>\n \u201cI can\u2019t say. I\u2019m not the maintenance person.\u201d<\/p>\n I wrote that down, too. I could tell she didn\u2019t like it. I also didn\u2019t like myself for writing it while she was standing right there, but I did it anyway.<\/p>\n The clinical director, Mr. Pike, called two days later. He spoke in that careful voice people use when they want to sound helpful without giving anything away.<\/p>\n \u201cMr. Bell\u2019s oxygen level is checked by staff,\u201d he said.<\/p>\n \u201cIs the concentrator working?\u201d<\/p>\n \u201cOur records show treatment was provided.\u201d<\/p>\n \u201cI have a meter reading.\u201d<\/p>\n \u201cI\u2019d rather review it in person.\u201d<\/p>\n So I drove back. I took the picture and the bill, and asked for the treatment chart. Mr. Pike met me in a small office with two chairs and a box of tissues nobody had opened. He showed me a page of numbers. There were entries in neat handwriting, sometimes at 8:00, sometimes at 8:15. The notes said \u201coxygen on\u201d and \u201ctolerating well.\u201d<\/p>\n I asked who had made the entries.<\/p>\n \u201cSeveral staff members,\u201d he said.<\/p>\n \u201cCan I see the names?\u201d<\/p>\n \u201cWe don\u2019t usually release staff records.\u201d<\/p>\n I put the picture beside the page.<\/p>\n He leaned closer. \u201cThat unit may have been off for maintenance.\u201d<\/p>\n \u201cThe meter says 112 hours since it was installed.\u201d<\/p>\n \u201cIt doesn\u2019t capture all oxygen therapy.\u201d<\/p>\n \u201cThe supplier says it records machine run time.\u201d<\/p>\n He looked at the paperwork for a few seconds. \u201cI\u2019ll have our nurse review this.\u201d<\/p>\n I didn\u2019t yell. I didn\u2019t have to. My hand was tight around the paper, enough to bend the corner.<\/p>\n \u201cPlease do,\u201d I said. \u201cAnd send me the full record.\u201d<\/p>\n He promised he would. I took the page he\u2019d shown me and left with no answer.<\/p>\n That night I couldn\u2019t sleep. I kept adding it up. Sixteen hours a day for nineteen months was well over nine thousand hours. The meter said 112.<\/span> Even if there had been days when Dad didn\u2019t need it, even if the machine had been replaced and the records were wrong, something was badly off.<\/p>\n I called the supplier again and asked when the unit had been delivered. They sent me the delivery record. Same serial number. I called the doctor\u2019s office and asked whether Dad\u2019s prescription had changed. It hadn\u2019t. I went through the bills and circled every month.<\/p>\n It became a stack of paper on my counter. The kind of stack I used to tell Dad to throw away.<\/p>\n At the facility, people started saying \u201cwe\u2019re looking into it.\u201d June stopped making small talk with me. Mr. Pike told me the chart entries could reflect checks, not necessarily the machine running. That was different from what the page said. I asked him to put that in writing.<\/p>\n He didn\u2019t.<\/p>\n I asked the state ombudsman what to do. I\u2019m not proud of how long I waited before calling. I think some part of me wanted this to be a faulty machine, one person forgetting to plug it in, something small enough to fix without changing what I thought about the people who cared for Dad.<\/p>\n The ombudsman told me to keep copies and not leave the original documents. So I did. I also asked Dad if he remembered anyone turning the machine on.<\/p>\n He said, \u201cJune tried.\u201d<\/p>\n I looked at him. \u201cTried?\u201d<\/p>\n \u201cShe\u2019d put it on. I\u2019d take it off.\u201d<\/span><\/p>\n \u201cWhy?\u201d<\/p>\n \u201cIt hurt my nose.\u201d<\/p>\n He showed me the red place where the cannula had rubbed. It was a small mark. I\u2019d seen it before and thought it was from sleeping on his pillow.<\/p>\n That didn\u2019t explain the chart. Or the bill. Or why no one had told me he kept taking it off.<\/p>\n I called the facility again. This time I asked to speak with June. She didn\u2019t come to the phone, but Mr. Pike did. I told him Dad said he took the cannula off.<\/p>\n \u201cPatients can refuse treatment,\u201d he said.<\/p>\n \u201cThen why did you charge me for sixteen hours a day?\u201d<\/p>\n \u201cWe\u2019ll review the billing.\u201d<\/p>\n \u201cI need the full records. Not a page you picked out.\u201d<\/p>\n He said he understood. He said he\u2019d get back to me.<\/p>\n I thought the next step was a complaint. It was. But before I filed one, June called me from her own phone. I was standing in the grocery store parking lot with a bag of apples in the passenger seat.<\/p>\n \u201cCan I talk to you for a minute?\u201d she asked.<\/p>\n I didn\u2019t say yes right away.<\/p>\n \u201cI\u2019m not trying to get you in trouble,\u201d she said.<\/p>\n I was tired of hearing that from people who had already gotten me into trouble.<\/p>\n \u201cWhat happened?\u201d<\/p>\n There was a pause. \u201cYour dad asked me not to tell you he wasn\u2019t using it.\u201d<\/span><\/p>\n I sat down in the car. \u201cWhy would he ask that?\u201d<\/p>\n \u201cHe said you were paying too much already.\u201d<\/span><\/p>\n I didn\u2019t answer.<\/p>\n June said she\u2019d tried to get him to wear the cannula. She\u2019d adjusted it, asked maintenance about the machine, and reported the problem. The machine had been checked once, she said, but the record of that check wasn\u2019t in the paperwork I\u2019d seen.<\/p>\n \u201cWhy didn\u2019t you tell me?\u201d I asked.<\/p>\n \u201cI should have.\u201d<\/p>\n \u201cYou told me his levels were fine.\u201d<\/p>\n \u201cI checked them. They were okay when I checked.\u201d<\/p>\n \u201cThat doesn\u2019t mean the oxygen was working.\u201d<\/p>\n \u201cI know.\u201d<\/p>\n I wanted to be furious at her. Some of me was. She\u2019d let me leave those rooms thinking Dad was getting the treatment I was paying for. But her voice sounded worn out, and I could hear a cart rolling over a floor behind her.<\/p>\n \u201cI can\u2019t talk long,\u201d she said. \u201cI\u2019m on break.\u201d<\/p>\n \u201cDid you know about the billing?\u201d<\/p>\n \u201cNo. I don\u2019t see bills.\u201d<\/p>\n \u201cDid you write those chart notes?\u201d<\/p>\n \u201cSome of them.\u201d<\/p>\n I gripped the steering wheel. \u201cDid you write \u2018oxygen on\u2019 when it wasn\u2019t?\u201d<\/p>\n \u201cI wrote what I was told to write.\u201d<\/p>\n That didn\u2019t clear her. It didn\u2019t tell me who\u2019d told her. It was the first honest thing I\u2019d heard, though.<\/span><\/p>\n I filed the complaint the next morning. I sent the meter photo, the supplier\u2019s delivery record, and copies of every bill. I requested Dad\u2019s full chart and asked the facility to stop billing the oxygen charge while the review was open.<\/p>\n They did.<\/p>\n The state investigator came out about three weeks later. By then, Dad had been moved to a working concentrator through his doctor\u2019s office. A respiratory therapist showed me how to check the machine and what the numbers meant. Dad still didn\u2019t like the tubing. We tried a softer one. He kept it on longer.<\/p>\n He began finishing his sentences.<\/span><\/p>\n Not all at once. Some days he still had to stop and catch his breath. But when I asked what he wanted for lunch, he could say \u201cchicken soup, the one with rice,\u201d without losing the last part. I noticed. I tried not to make a big deal of it because he hated being watched.<\/p>\n The facility eventually refunded five months of charges. They said they couldn\u2019t confirm that every billed hour had been delivered. That was their phrase. I filed another complaint about the rest, but it took time and several calls. I kept records. I didn\u2019t make it easy for them to forget me.<\/p>\n Mr. Pike said the staff charting had \u201cnot met expectations.\u201d He wouldn\u2019t tell me whether anybody had been disciplined. June was still there when I visited. She didn\u2019t come into Dad\u2019s room as often, but she still brought him the tea he liked, with the tea bag left in until it was almost too strong.<\/p>\n I was still mad at her. I was also grateful she\u2019d called. Those feelings didn\u2019t cancel each other out.<\/span><\/p>\n One afternoon, while I was helping Dad sort the drawer beside his bed, I found a folded piece of paper tucked under the spare socks. The paper was soft at the creases, like he\u2019d opened it and closed it many times.<\/p>\n I thought it was one of his old lists. Then I saw June\u2019s name.<\/p>\n Dad said, \u201cThat\u2019s nothing.\u201d<\/p>\n I opened it anyway. I know. He was tired, and I should\u2019ve asked. I\u2019ve never been good at leaving a closed thing closed.<\/p>\n It was a short note in Dad\u2019s blocky handwriting. He\u2019d written that he knew the machine wasn\u2019t running, and that June had been trying to help him. He asked her not to tell me because I already had enough to pay for. Then he asked her to bring him a cup of tea when he was awake.<\/p>\n At the bottom, he\u2019d added one more line.<\/p>\n \u201cPlease don\u2019t let Elise blame you.\u201d<\/span><\/p>\n I read it twice. Then I put it back under the socks, exactly where I\u2019d found it.<\/p>\n Dad had been trying to protect June. June had been trying to protect me.<\/span> And I\u2019d spent weeks looking for someone to blame while the person who couldn\u2019t breathe was still trying to make sure I didn\u2019t add one more bill to my life.<\/span><\/p>\n <\/p>\n