I made the 400 mile trip to Ohio again over July 4. One of the things that came clear to me during my sabbatical was the importance of seeing my mother as much as possible as she slips away, before she no longer recognizes me. (A nurse at the green house home in Bluffton told me on my previous visit over Memorial Day that I shouldn’t assume that moment is inevitable or soon, because she has improved so much since she moved from the Mennonite Memorial home into the house on Willow Ridge.)
My brothers and I had an agenda for this visit. My mother had been pastor at Oak Park Mennonite Church, which became Chicago Community Mennonite Church, and they are celebrating their 35th anniversary this year. My previous blog entry led to several communications with church members who wanted to include her somehow in their November commemoration. So Chris, Kevin and I tried to see if we could get some usable video.
We knew it would be hit or miss. To jog her memory, we got a cross from her room that an artist in the church, David Orth, had made for her and talked about her time in Chicago on a July 4 visit, but in the end just recorded ourselves saying, “Happy 35th Anniversary.” Afterwards we had lunch with her, and she looked at Chris and said, “You look so much like my oldest son Christopher.” One of the shahbazim, the name given the helpers in green houses, told us of the conversation they had had recently about a member of the Oak Park congregation who had adopted two brothers, confirming that the memories are still there somewhere.
The next day, two people who had been members of Mom’s congregation—one living in Bluffton now and one visiting from Chicago—came to visit. We talked some more, took some more inconclusive video. We got out a ceramic bowl from her room, into which members of the congregation had put slips of paper expressing their gratitude for her ministry, and read them to her. Jan talked about her wedding, at which Mom had officiated. Mom was thinking hard, and I think she almost did remember the ceremony. I have the impression that her thoughts come two her like those power point slide presentations, with images presenting themselves, and then dissolving into other images, and she just doesn’t have the control any more to freeze the frame to take a closer look.
But the hours we spent over those two days were actually a lot of fun. We spent most of the conversations laughing. Mom would even laugh at herself when she would make a wrong word choice—“instret” instead of “insert” for example. And when my vegetarian brother picked the bacon out of his baked beans, she called it a “bacon massacre” which we all thought was pretty funny, including her. I asked her if she wanted some baked beans, and she said, seriously, “They’re wild but senseless in their displays.” Decided that was “no.”
Anyway, the mood was light-hearted when it came time for us to go on July 5, our final visit. Chris stood up and said that he and his wife, Cookie, would come to visit in a few weeks, and then everything changed. Her facial expression became lucid. It was as though she saw for the first time that her beloved oldest son was there in front of her—and now he was leaving. “Where have you been all this time?” she asked, tears filling her eyes. Chris again assured her that he was coming again to visit soon. I hugged her, and told her that I would be skyping her on Friday; she would see me on the computer. She just looked at me, helpless. Was I her daughter, or just some kind stranger, calling her “Mom?” As we left, one of the shahbazim put on some music that Mom likes to listen to as she naps, and I thought I saw her smile as Chris and I walked out the door. Chris told me in the car he thought she was smiling because she heard our voices conversing as we left the house.
But I called the house that night anyway, to see if she was okay. A shahbaz that came on at 2:00 p.m. told me that Mom had been fine when she started her shift; that I shouldn’t worry. And we should probably cancel the Toledo Blade, because Mom doesn’t even look at it anymore.
It’s not fine.
It’s not okay that my brothers, sister and I all live more than 100 miles away from her in four different states.
It’s not okay that I felt a fleeting moment of jealousy that she recognized Chris and I wasn’t sure she recognized me when we said good-bye.
It’s not okay that I thought as we left, “In another two minutes, she’ll forget how sad she was.”
It’s just not okay.
Social tagging: Alzheimer's > Betty House > Chicago Community Mennonite Church > dementia > green house project > Mennonite Memorial Home > Oak Park > Parkinsons > Shahbaz > shahbazim