The Trip No One Wants to Take: Looking For A Nursing Home For My Mother.

Maybe you’ve noticed I’ve been gone from this page for a while. I’ve been on an unexpected side trip, one that I have very little control over that takes me places I didn’t think I’d have to go for years yet.

On the 4^th of July my 61-year old mother went outside trying to see some of the fireworks, missed a step leaving the deck and fell. She laid on the sidewalk for a long time because she couldn’t get up and my dad is a little hard of hearing and couldn’t hear her calling. The neighbors finally saw her in their headlights as they returned from the festivities and came over to check on her, which made the dog bark and finally brought Dad outside. He wanted to just pick her up and get her inside, but she said “No, I’m not going anywhere, you need to call 911.”

Her left leg was broken in two places just below the knee. At first the doctor said they would do surgery right away, but then they decided to wait. On the phone Mom didn’t know why, later Dad said he thought they were worried about her diabetes or her blood pressure. It turned out that it was a rare kind of break that they didn’t see very often and the surgeon wasn’t sure how to go about fixing it. After three days of her lying in the hospital with a broken leg and no apparent plan for when they might fix it, Dad called to tell me the hospital wanted to just send her home until they decided what to do, maybe they’d do surgery next week if the swelling went down. That’s right, just take your broken leg home, we’ll call you when we decide we’re ready to fix it. That was the point when I felt the need to get involved.

I hadn’t seen my parents since Christmas. We had been planning a visit to see them in St. Louis this summer, but when I called to talk dates Mom told me they had moved. Dad’s job had changed and she had waited out the last of their lease and by May they were in Cedar Rapids, IA. They had just moved to St. Louis from Iowa City, (just south of Cedar Rapids) last July and we had been the moving crew. It had been hot, nasty work, and Mom and I had argued about how it should be done, so when they moved back they just didn’t tell me. It ruined the trip to St. Louis I had been planning, and yeah, it hurt.

Dad tells me I’m the mean one in the family, that my sister doesn’t like to talk to me because she’s afraid I’ll yell at her, and I know my parents avoid talking to me when they know I’ll disagree. I prefer to think of myself as opinionated and able to stand up for myself. When there’s something that needs to get pushed through, though, I’m the one they call. Mom was hurting too much to do anything for herself and Dad was feeling helpless and confused; a lot of people do when they find themselves unexpectedly at the mercy of our health care system. My parents needed a patient advocate to step in, maybe be a little forceful. I took the day off work and got in the car.

On the two-hour drive to the hospital a million things are going through my mind. How long will she be there? How long will it take her to recover in rehab? Will she be able to recover in rehab? Her health had been getting steadily worse over the last few years and this wasn’t her first fall with an injury, although this was a lot worse than the twisted knee a few winters ago that I had helped her through. I had told her to be careful, that all it takes is one bad fall to put many people in a nursing home for the rest of their life. Will this be the tipping point that keeps her from living independently?

Working in nursing homes I’ve seen it happen to so many people; they have a fall and while they’re being watched 24/7 it’s decided that they’re not safe to live at home anymore. They’re too unsteady and might fall again, their diabetes is out of control, they show signs of dementia; so many little things that can change a person’s life and take away their freedom. What was meant to be transitional rehabilitation becomes their home, whether they like it or not. If they try to leave they’re told that their insurance might not pay for their care if they go against doctor’s orders, and while it’s manipulative it’s not a lie.

I wouldn’t let that happen to anyone in my family. Mom worked in nursing homes as a dietary manager and cook, so she has said that she wouldn’t mind living in one someday but I’ve always insisted that she would come live with me. Jason and I discussed it years ago and fully expect that someday we’ll have her in our house, but I thought it would be longer. I still have 3 kids at home and grand travel plans. I’m not ready yet, and I feel selfish worrying about myself when my mom is the one who’s hurt.

As a Registered Nurse I know how hit and miss good care often is in the hospital. They weren’t controlling her pain or being careful with her leg. The first night nurse yanked the pillows out from under her leg, sending it crashing down with a jerk. She got annoyed when Mom cried and told her “The immobilizer is on it so it won’t hurt.” As if the device holding the leg straight would insulate it from rough treatment. If someone says they have pain, you’re supposed to take their word for it and act on it.

It scared me to talk to Mom on the phone and hear her slurring her words, exhausted and suffering. What was going on? It was just a broken leg, why weren’t they helping her? Dad told me they were waiting for the swelling to go down, which made it irritating that they had waited days after the injury in the first place. And what were they doing to help it? No one was putting ice on her leg, no one had even opened the huge immobilizer that covered it from hip to ankle for the three days before I came in. The doctor had examined her in the ER and hadn’t been seen since, but there was another doctor fretting over her blood sugars, two nurse practioners, and a rotating staff of varying degrees of competency. Health care has become so specialized it has fractured into a million disjointed pieces.

When I got to the hospital I found my way in, purposely by-passing the nurse’s station and going straight to her room to see what was going on. She was in the best shape she’d been since the fall, sitting up in the chair and eating for the first time in 3 days. Before she’d been in so much pain that anything she ate came back up but she finally got a nurse who paid attention and got her pain under control. It was a relief, but there was still more to do.

To my dad’s surprise I slept in the hospital to watch over Mom, doing little things for her continuously. It’s the little things that make the difference between getting through something and being taken care of. In the morning I questioned everyone who came into the room to find out as much as possible about her condition. I also had them make some changes to her medications like adding a muscle relaxer to stop the painful spasms in her broken leg and showed each person who moved her how to support her whole leg instead of just holding the foot. I’m not a terribly experienced nurse, I’ve only been an RN since 2010, but good care doesn’t seem that hard to me, it just takes some consideration of how to help someone.

Word seemed to get around that I was there and we saw everyone except the doctors that morning: social worker, care coordinator, visitor greeter (who brought me food coupons and a free newspaper,) nurse practitioners, physical therapy and occupational therapy, and of course the nurses and nurse’s aides. However despite asking several times I couldn’t get anything in writing regarding what medications she was getting or how often; the details of her care seemed to be a secret everyone danced around.

Mom complained that it was hard to plan ahead when they didn’t really know what was going on, and I told her this was normal. No one knows what’s going to happen for sure until the order is given, and they don’t want to speculate and be wrong so they don’t say anything. She worried over their half-unpacked house, what Dad was eating while she was gone, who was going to do the laundry. Over and over she said “If I had known this was going to happen I would have….” until it became a joke. No one plans to break their leg!

The social worker told me that they wanted to send her to a rehabilitation center (nursing home) until they could schedule the surgery to fix her leg, maybe until Friday or as long as Monday. It was Tuesday, and she had broken it on Friday night. Mom would go back to the same place after her surgery for more rehabilitation until she could go home. They looked up three places that her insurance would cover and sent me out to tour them and choose.

The first place was small and outdated, but it was clean with private rooms. Each room had a huge recliner that I knew Mom would really love. She’d had a recliner for as long as I could remember, sitting in it every evening with her feet up. I walked past the office and down the hallway, peeking in the rooms and watching the staff. No one was crying out for help, and the staff seemed relaxed and pleasant. It was a little loud, but in a bustling way that I didn’t think Mom would mind. I passed another woman in the hall who turned out to be there on behalf of a friend who had become an amputee; she was doing the same thing I was doing, checking the place out without anyone there to smooth over any unpleasantness. Back at the front door I poked my head into an office and the administrator came out to lead both of us around officially. We saw a few empty rooms, the physical therapy equipment, and met the Director of Nursing and therapists, whose names I jotted down. I didn’t tell them I was a nurse until near the end of the tour; people react differently when they know you work in the industry, they are more careful.

No one seemed to be suffering, but their blank faces gave me the creeps. People in nursing homes often do. They were stuck here, bored and alone. Their physical needs were being met but their lives were empty shells, family and home far away while they sat in rehab limbo. Nursing homes are not a place to go to live; they are a place to go while you wait to die. Rehab is the best case scenario because it holds the possibility of escape, but it didn’t make it any easier. I found it hard to imagine my chatty mother among these wheelchair bound shadows and reminded myself that it would only be temporary.

The second place was very large, easy to get lost or overlooked in. Most rooms held two beds squeezed into the same space that was private in the smaller facility. I was immediately jumped on at the door and ushered into an office away from any activity in the halls. The administrator pressured me for information, wanted to call the hospital social worker and start the process of bringing my mother here right away. When she led me around we repeatedly entered rooms while their occupants were present, just parading me in as if there was no one home. The invasion of privacy made me uncomfortable but she didn’t seem to notice. She also made a show of helping people who needed medication or to go to the bathroom by fetching their nurses or aides. I wondered what would have happened to those people if we hadn’t been touring just then, how long would they have had to wait? This was not the place for us.

I went back to the hospital and helped Mom wash her hair while we talked it over. Neither of us was excited about the idea but the first place looked pretty good, we’d have to go with that and remember that it was only temporary. There really wasn’t much of a choice. The social worker started working on getting pre-approval and making the arrangements for Mom to move.

Then my boss called and wanted to know what I was doing and if I was coming back to work tomorrow. After some back and forth I was told that if I didn’t come back tomorrow they would cancel all my shifts for the rest of the month. I had no real choice but to leave my mother alone again, and I really hated that. It’s inspired me to start looking at the want ads. Family comes first with me.

I didn’t really feel ready to leave; sadly, the people who get the best care are the ones who have someone there to keep the staff on their toes. Where are her pain meds? Support her leg with two hands, not just grabbing at the heel. She assumed that the people assigned to her were communicating and would know how to take care of her, but really each patient is different and a new experience for their caretakers. As a nurse I often tell people, “Let me know what I need to do,” or “How do they usually do this?” By asking I learn what works and what doesn’t before I might hurt them, but most people don’t think to do this and patients don’t want to be bossy. If I wasn’t here no one else was going to say it for her; all I could do was tell her to do it herself and hope she would.

Driving back home 24 hours after I had arrived I felt like I had hardly been there. I had come and made a few changes and picked out what might be my mother’s home for months to come and now I was heading back to mine. I wished there was someone else who could come and stay with her but my dad has to work and my sister is focused on her own life. There was no one, and I am the nurse after all. If she doesn’t get better, if rehab doesn’t go well and she needs to be taken care of that will fall to me as well, and of course I’ll do it.

But she won’t go to Mexico, and I’m a little terrified that this will be the end of that dream. If we were already there and this happened it might be different but if she needed me and I left anyway I would feel guilty forever. I hope it doesn’t come to that. I hope the pain stops waking her up at night, that the leg heals after the surgeons tack it back together, and that she’s able to go home. Maybe she’ll even benefit from the physical therapy and come out of this stronger than she was. That might be too much to hope for. Maybe I’ll just hope we all get through this unexpected detour and return to our normal plotted course. That would be enough for now.

Update: As of today she went home, and I felt like everything was stable enough to start writing about it. Her insurance wouldn’t pay for rehab, so she’s doing without, but her leg seems to be doing well for now. She has an appointment with her surgeon to check it this week that I will be going to.