Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Saturday, December 04, 2004

The First Visit

The 29th was a Monday. Thursday was the first day we were allowed to visit. I made a mistake. On the Monday, I had talked with one of the administrators about the three-day rule, and she had indicated that the rule was not hard and fast. "It really depends how the person is doing," she said. "Often if there is a big scene when the resident is first left, we need that time to get them settled in and realizing that this is home. But it doesn't look like it will be that way with your mom, so it might not take the three days."

And, in fact, it hadn't looked that way. In one of our visits prior to the 29th, we had actually had difficulty getting her to leave with us. One of the blessings in her version of Alzheimer's is that instead of thinking that the people she knows are strangers, she thinks all strangers are people she knows. She was always trying to get up in restaurants to go see someone across the room that she was convinced was someone from church or a family member. She once thought a man in a toll booth was her father.

So on that day before she moved in, she was resisting leaving...going back to the common area again and again to say hello to this person or that. As we finally dragged her out the door she turned back and blew kisses at them all. And then when the leave-taking happened, she made no fuss at all.

So that Wednesday, I was not far from there doing a workshop. At the close of the workshop, I decided to drop by the Birches and see if they would let me in to see her, even though the three days would not be up until Thursday. I went in to the reception area and asked if it was possible to see her. The receptionist said, "That shouldn't be a problem, but I'll just call down to her area to see." She called and then hung up the phone. "Well, I'm glad I called," she said. "I'm sorry, but they said she still needs a bit more time."

I never should have tried it. Hearing that only made me crazy. "She's not adjusting!" I thought. "She thinks we've abandoned her...she wants to go home...she doesn't understand." I felt horrible and cried for the hour's drive home. David had called on Tuesday and asked how she was doing. They had told him she was doing fine. But what were they going to say to a family member? She's having a meltdown and is inconsolable...come get her? I don't think so.

Having taken a lot of time off getting her room ready, work was really piling up, so I left Thursday and Friday for David to visit and planned my first visit to be on Saturday. When I got there I practically ran back to her room. She wasn't there. I looked around her "neighborhood." Nowhere to be seen. I asked one of the staff. They knew exactly where she was...upstairs in another "neighborhood" helping to decorate a Christmas tree. I went up and found her. She was glad to see me and introduced me to a man sitting nearby. I doubt the introduction had anything to do with reality, but everyone seemed pleased with the interaction.

We went back down to her room and she proceeded to talk...for quite some time. I'm sure she was telling me all about the place, but unfortunately there was little that made any sense. In that sense she is worse off than many of the other residents. They may tell you the same story every five minutes, but at least the story makes sense in the time of the telling. It may or may not be a true story, but you can follow the logic of it, whether it is fact or fiction.

With my mother, however, it is different. "We're having trouble with the weather. We don't know whether to say yes or no to the rain." "The fourteens aren't going in circles anymore to the train." I find myself wondering if there is a logical sentence in her brain and when she reaches for words the wrong ones pop in, or whether there is no logic. I asked her if her bed was comfortable. "Yes, but it's awkward having only one leg," she said, her two legs planted firmly on the floor.

It was clear from the conversation, however, that she considered The Birches to be home. It was equally clear that she was quite peeved at David for not being in that home. "Tell him I want to know that I still have a husband!" she said, plainly irritated, in one of the few sensible sentences of the day.

When she had talked herself out, I suggested that we go down to the dining room and do a puzzle. Each neighborhood has its own dining area and activities room so that residents don't get overwhelmed with large numbers of people all at once. We went down and pulled out a hundred-piece puzzle, which attracted the attention of another resident named Frances.

Frances is a great puzzle-lover and pulled up a chair with us. She was bemoaning the loss of a good friend who had just moved from The Birches to a more intensive nursing facility. As I helped both Frances and my mother do the puzzle, I learned that Frances had been a supervising nurse in a hospital OR. As she bemoaned losing a friend, I tried to hook her up with my mother as a new friend.

"What do we have in common?" Frances asked. "Well, you both like to do puzzles," I said. It was an interesting attempt since my mother's answers to Frances made little sense, but Frances is also fairly deaf and couldn't hear them. Perhaps that will make for a good match. In any case, we finished the puzzle. Frances was still trying to have a conversation with Mother, so I took that as my cue to ease out and go home. I left them at the puzzle table, getting to know one another, and I told Mother I would be back every Monday to visit.

Monday, November 29, 2004

The Birches

It was only three weeks after her start in daycare that David reported her night wandering. She would get up five or six times a night...sometimes he would wake up and sometimes he wouldn't. His fatigue was showing. Twice he found her outside when he didn't know she had gone out, and winter was coming. We began to look at alternatives.

David did the lion's share of the investigating. We visited one place he had found locally where one of the other Alzheimer's patients at the church was living. And then he found The Birches at Concord. One trip out there, and I was hooked. It is only for the mentally impaired and was built just four years ago. We all went out there together to look at it. David, Laurie, and I talked with the administrators while a nurse took my mother for an evaluation and had her sit in on a couple of the activities. They had an opening.

On the way home, I said to my mother, "Well, if you don't want to take that room, I will!" And I meant it. The staff was kind and gracious, there was no feeling of being in an felt like a home...a safe, caring home. We made the arrangements and set November 29, 2004 as her move-in date.

In the run-up to that, David took her out there on several occasions, so she could get used to the place and her room. I went almost every day to prepare her room. I bought furniture, hung paintings, framed dozens of family pictures in collages to hang on the wall or put on a dresser. I bought bedding and pajamas, a shower curtain and towels, and I sat literally for hours in her room at different times of the day and night to see what the atmosphere was really like. I blanketed her room with prayer.

And then the day came. I had arranged for a clergy colleague of mine to come on the 29th and to do a room blessing. We arrived late morning, brought in the final touches for her room, and then went to a private lunch they had prepared for us. There was an aide who ate with us, who was assigned to be with my mother for the rest of the day to help her get adjusted.

After lunch we went back to her room for the blessing. As soon as he began the prayer, I could feel the tears welling up. It was such a good place...I couldn't imagine a place that was better...but oh, how hard it is to have your mother become your child and to have to leave them in a place when they can't really understand what is happening or why.

Her mental state had deteriorated even more. In the preparations for the move it was clear that on some days she understood what was going to happen, but on other days it was all a fog. Leaving her at The Birches was gut wrenching, and it went so much better than it does for many. The aide simply led her away to go bowling and she went without any fuss at all. No tears, no clinging, no begging us not to leave her. We were so blessed.

And yet it was still one of the hardest things I've ever had to do. What did she understand? Did she know we wouldn't be there when she came back? Did she know David wasn't moving there with her? Would she remember that we loved her or would she wake in the night and feel betrayed? We were not allowed to return for a visit for three days so that she could get adjusted. We all held it together until the aide took her away. Then we cried like children and went home.