The Observatory: Eddie Edition

I am a planner. I prefer plans that lead to actions. For example, when we made the decision to move out of Minnesota as soon as I retired, three years hence, I was looking at houses online and packing anything I wanted to keep but probably wouldn't need in the next three years. All with detailed lists of contents (hello, 30 boxes of books). That worked out well for us.

It looks like one of my myriad grandsons may be getting married. The plan is for 2028. The other night I was looking at dresses for the wedding. It doesn’t matter if the plan works out or, in some cases, is even feasible. I just like to know what my options are.

I was pretty sure I did not want to be shuttled into a nursing home as I aged. That always rested on the assumption of my continued good physical and mental health. I began thinking about this when I was in my 50s, now a couple of decades ago. But my maternal grandmother, my mom, and five of her seven sisters died with Alzheimer's. (Every time I open the wrong kitchen cabinet drawer, I wonder if this is the beginning of the end.) At this point I will not risk burdening any of my children with that type of care and hope the adjustment is not necessary. But let's go back a bit.

My mind began to change when I started volunteering at a senior living center near us (this was in 2017). The place was gorgeous, more like a hotel than an institution. I walked into a huge lobby full of stylish furniture and beautiful carpet. The hallways were lined with artwork from a nearby gallery, which was changed out every month. And the grand staircase! From the lobby you faced two-story high, floor-to-ceiling windows which overlooked the pond and woods. It led to the dining space featuring the same views. I was sold. Sign me up! I have been in other senior centers since then, though none nearly as grand. We no longer live in the area, and, if dementia is not an issue, even given the grandeur of that center, a small place of my own would be preferable.

Yes, another change of plans. Let me explain.

In the latter half of the 1990s, I was the parish secretary for a small church. As such, I had my regular collection counters. One was this 80-something little short lady, about half as wide as tall. She was named Peggy. Peggy was a hoot who took no nonsense. She had three adult children, two girls and a boy. Her boy was Eddie. Eddie was born in 1949 with Down Syndrome, at a time when the expected life span for a Down Syndrome baby was 12 years. That's right, 12. Peggy had been told by the doctor that Eddie would never be able to learn, read or write, and advised that Eddie be placed in an institution. Being that Peggy herself had been adopted, she was having none of it.

By the time I knew him, Eddie was not only able to read and write, but could manage the computer at the public library well enough to print pictures and articles about celebrities that he kept organized in a file cabinet at home. I didn't see him often, but when you spoke to him, you could tell he was about a 10-year-old in an adult body. He was kind of a hulking man, tall and big, with black hair and a mustache — almost scary looking if you didn't know him. He used to hitchhike from the library to his home, something his mother discouraged. I imagine that most people in the area knew him, and besides, I don't think too many strangers would pick up a guy who looked as though he could be a serial killer. I stopped for him once. He did his due diligence. He asked, do I know you? I told him, I know your mom. That was good enough for him, and he climbed right in.

Fast forward to 2017. I had left my position at the church, and due to the jerk priest lost touch with those I had worked with, though I knew Peggy and her husband had died. I was working full-time as a school psychologist and didn't think I was doing enough, so I went to volunteer at the senior center. I had limited availability, but the volunteer director considered my expertise and said she would like me to be a one-to-one visitor with...Eddie!

Imagine my shock, to actually know the person I was going to work with. But Eddie had changed drastically. No longer big and tall, he had shrunk and was bent over a walker. He had no clue who I was, but I didn't expect him to. He still had that Down syndrome angelic smile. The director introduced us, and I put out my hand to shake his. Are you ready for this, ladies? He kissed my hand! Let that one sink in.

Each visit, he was ever the gentleman. He would let me precede him through a doorway. "After you," he would say. Mr. Suave. Twice a month, I would spend half an hour or so with him. We started by doing puzzles. Neither of us liked that. We tried dominoes, but neither of us really knew how to play. We eventually settled on Go Fish. He liked that game. The walls of his room were covered with dinosaur posters. I asked him once if he had a poster of Godzilla. Eddie said that he's too scary.

He was a center volunteer, putting up monthly calendars on the bulletin boards. Once we walked by one of the boards and noticed that the calendar was already there. He took it down. "That's my job," he said. I noticed a whole pile of calendars under the seat cushion of a chair in his room. After a little more than a year, his behavior was getting a bit more bizarre and the decision was made to move him to memory care.

His room was much smaller, and he was now restricted to a few hallways and a small community and dining room. No grand view. No freedom to wander. He spent his time in his room, watching DVDs from his vast collection. He still seemed happy to see me — he had never called me by name, but I knew he recognized me. We would go to a small enclosed porch and play Go Fish. Sometimes he would get into the game, sometimes it failed to distract him. At one point in 2019, his sister and management took away all his movies. He had been taking the ones from the community room and insisted they were his. He was on the verge of tears as he told me this. As was I. All the guy wanted to do was spend some of his long hours with John Wayne.

I last saw Eddie in January of 2020. He was not well. He kept coughing and spitting into a glass (I did have to turn my head away from that.) He kept complaining that he was hungry and wondering when it would be time to eat. I just talked softly to him, telling him I knew how hard it was to wait. When it was time for dinner to be served, I told him goodbye and that I would see him in a couple of weeks.

Then, of course, the Covid lock downs began. I sent a card to him for his birthday in May. It was returned to me by the post office. I searched for his obituary online. He had died in March. When I questioned the volunteer director through email, she told me that since I was not next of kin, and due to HIPAA rules, they were not permitted to notify me. I can only hope he did not die alone and frightened. I decided at that point that I never wanted to be in a place where they could just lock you away from the people who care about you.

I am sure of one thing, though. I am sure that when Eddie met our Blessed Mother in Heaven, he kissed her hand.