The grieving process

That's the strange thing about Alzheimer's...you grieve a person's death while they stand there in front of you. It took me awhile to realize that I was going through the process of grieving her death. That's not always obvious when you're talking to the person on the phone.

I remember the anger phase. I was angry with my mother for being frail. When she lost so much weight and stopped some of her activities, she became cold often. In the heat of summer, she would show up wearing a sweater, and inside I was furious. I knew rationally that was silly. If she was cold, she was cold...period. I wasn't upset with other people who were cold when I wasn't. But this wasn't other people. This was my mother and she was supposed to be sturdy and vigorous and alive.

As her ability to put together a wardrobe began to fail, I was angry that she began to look like a bag lady. The vibrant, classy dresser now wore things that didn't match in colors that didn't suit her. "Who is this?" I would ask myself. "This is not my mother." I wanted to shake her..."What have you done with my mother?!!"

And then I realized what was going on. Anger is an early stage of the grief process, and that's what I was doing. At some point when I wasn't looking, my mother had died. This was a different person, and I needed to relate to her differently. When I realized that, I cried a lot. I cried at odd times...when I heard a favorite song of hers or when I looked at her. Because of course she is both the same person and a different person. You can't just grieve the dead, because there is this living body that needs care, but the living body is a continual reminder of the one who was dead.

In thinking about that I remembered Dickens' story A Christmas Carol. Remember that one reason Scrooge couldn't deal with his nephew was that he reminded Scrooge of his sister, Fan, who died giving birth to the nephew. I've also known people who have a tough time dealing with children or siblings who bear a strong resemblance to someone who has died. Alzheimer's magnifies those issues. The sight of the body is the visual reminder of what was but is no more. It's hard.

One of the hardest things for me was dealing with it all in church. Of course I am the minister, and she was there every week in the pews...and every time the church was open for any event. Church has always been a huge part of her life--she is the one who gave me faith as a child. My father taught me to boo the New York Yankees, and my mother taught me to pray. But that presented a dilemma. At church, I am at work. I need to be at the top of my form, focused, and ready to meet the demands of a church service or other event. But every time I went, I was confronted with my dead/living mother, having to work through the devastaing emotions. Just try on Ash Wednesday putting ashes on everyone's forehead and saying "Dust you are and to dust you shall return" and then she's standing in front of you, waiting her turn.

As time went on, she would come down to the front to receive communion, but couldn't really understand why she had come. She thought maybe she was just coming to talk with me, and then she couldn't find her way back to her pew. Wanting to scream or cry, I would have to preach instead. It's hard.

I began to remember conversations I'd had with families of Alzheimer's victims when I would do their funerals. "I'm so sorry for your loss," I would say. "Oh," they would answer, "It's a relief, really. We did our grieving long ago." I understand now what they mean.

The Beginning

Not that this is news, but Alzheimer's is a terrible disease. I began to notice that something was wrong with my mother when we went to a conference together in 2001. She has always been sharp as a tack and super organized. A Brown University graduate, she was an English teacher and then a guidance counselor in a large high school. She was the senior class advisor for years, managing classes of about 500 students, running graduation and honors night and the schedules of her many counselees without ever missing a beat.

But at this conference, I noticed she was slipping. She was having trouble figuring out what materials to bring to each session...she who at one time could have designed the materials. And then, on the day before the conference was scheduled to end, she turned to me and said, "Should we check out of our room now?" I was puzzled. "No," I said. "If we do that, the nice hotel people won't let us spend tonight in our rooms." She laughed. But then a couple hours later, she asked the same question again. And then later in the day she asked a third time.

The next thing I noticed was that she was having difficulty driving. The mechanics were fine, but she had trouble with directions and road signs. She picked me up at the airport and I thought surely we were going to die trying to get out of the parking garage. She was in a complete panic and stopped dead in the middle of the garage, completely unable to cope with the signs and arrows.

Then she started getting lost driving home from my house, less than a mile away. It was moving fast. We took her for some neurological testing. Scans showed that there had been some mini-strokes, but that wasn't the whole story. The doctor said the "A" word. It's funny, that "A" word. I've noticed that people are reluctant to pronounce it. People who have no trouble talking about cancer, Parkinson's, strokes, and other debilitating or even deadly diseases will say to me, "Does she have it..I mean...uh...you know..." "Yes," I respond, "She has Alzheimer's." They look at me like I am the pilot of the Enola Gay.

By her 70th birthday in 2002, it was obvious to everyone that something was wrong. She often had a sort of vacant look, and she had started to lose a lot of weight. Doctors put her through every test on the planet to find a reason for the weight loss...even taking out her gall bladder, more of a test than anything else...before finally saying, "Well, that can be a part of Alzheimer's too."

The grieving began.