Years ago, I had extensive surgery and spent several nights recovering in a hospital in Atlanta. The anesthesia was working itself out of my system and I was hooked up to an IV with pain medication. Mealtime came and nothing was brought for me to eat. So when the nurse finally arrived, I asked her about my breakfast and she said, “Honey, you have to order it.” She pointed to a dry erase board with a phone number scrawled on it. But the board was blurry; in fact my nurse was blurry because my contacts were apparently stuffed in a drawer somewhere.
Things spiraled further downward when I woke up in the middle of the night with relentless pain. I pushed the ‘Call Nurse’ button but no one came. I pushed it again. And again. And again. I hoisted myself out of bed, held onto my IV pole with one hand and the back of my hospital gown with the other and hobbled out of my room and down the hall to the nurse’s station. I yelled at the blurry nurses standing there and they said, “Something must be wrong with your call button.” I hobbled back to my bed and within a couple of minutes, the same nurse who didn’t explain ordering meals to me came into my room in a frenzy and hurriedly gave me more medicine. As soon as it was daylight, I called home and begged Mom to come get me.
Last week, my parents and I toured a nursing home/rehabilitation center in Atlanta. We did not tell my Father that we were thinking of placing him there for a few days. Instead, we told him that we were there to visit someone. (Yes, it was a lie, but an anxious person with Alzheimer’s is like a petrified cat up a tree while a barking bulldog stands below.)
I didn’t alert the staff of our visit because I wanted to see what it would be like on a normal day, without preparation or fanfare. Once we signed in, I filled out a form while we waited for a staff member. The décor was quite dated, but the lobby was neat and clean with a couch, a couple of chairs and a table. Straight ahead was the courtyard, where an elderly woman sat outside in her wheelchair enjoying a rare few minutes of sunshine.
A woman came to greet us and when she shook my Father’s hand, she said, “And you’re the one who might be staying with us?”
I’m sure she meant well, but that should have been my first clue that something wasn’t right. My Father held onto Mom and I prayed that either he wouldn’t understand what this woman had just said or that he would forget it immediately. I quickly explained to her that we weren’t telling him anything yet about a potential stay.
The building was divided into a long-term wing and a short-term wing. We walked down the latter while I peppered our tour guide with questions. “Would he be in a private room or share with another resident? Does anyone tell him it’s time to eat or is he supposed to know that on his own? Do residents walk to the dining hall alone or is someone available to help them? What if he has a food allergy?”
We stepped into a vacant room that held two beds with a thin curtain between them, a closet and a TV. The weekly menu was posted on a board close to a restroom that only held a toilet, sink and closet. There was a room for showering down the hall. Residents could either eat in the dining hall or in their rooms. I told the staff member that my Father was allergic to cheese, so when she pointed to the lunch for that day and saw ‘grilled cheese sandwich’, she said, “So he would get something different.” I wasn’t so sure.
We walked past a nurse’s station on the left while four residents on the right of us sat in their wheelchairs watching TV. They looked depressed. I got depressed looking at them. The dining hall was a modest room with about 10 round tables with pink paper tablecloths spread over them. The activities director stood at one of the tables talking with a resident. A piano sat silently against the wall.
“This is where your Father would eat,” said our tour guide.
“Is there anyone to bring him to the dining hall?” I asked.
“This facility is self-directed, so residents come and go on their own.”
All I could think about was my hospital stay years ago when I couldn’t read the board in my room, wasn’t told I was supposed to order my meals and had to hunt down my medication in the middle of the night with my IV pole in tow. I will never forget that horrible feeling of needing care but being left alone to take care of myself.
We walked through the courtyard and ended the tour where we started. I asked our tour guide what would keep any of the residents from just walking outside toward the parking lot.
“Nothing,” she said. “Residents can come and go as they please.”
There was no way in the world we could bring Dad to this facility. He would be stuck in his room and have no idea that the menu was posted by the restroom. No one would be available to help him to the restroom or tell him it was time to eat, or even guide him to the dining hall. And I know my Father. He would bolt right out of the front door the first chance that he got, telling everyone he was “going home.”
Mom held tightly onto Dad while we walked to the car. She wondered aloud if we really needed a respite that badly. And perhaps for the first time, I understood what people meant when they told us that we take really good care of my Father.
Caregivers are always learning. We’ve learned that there’s no need to visit a facility unless it has a memory care unit. But we do need respite. So we keep looking.