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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Tuesday, March 29, 2005

Invisibility

Easter Sunday had been a big day. David drove the hour to Concord, picked Mother up, and brought her back here for church. I imagine it was my last Easter to celebrate with my mother in worship, but perhaps not. She did very well and so many commented on watching her sing all the verses to all the hymns, hardly ever even looking down at the hymnal.

After church we went out to dinner at a restaurant where she and David used to go very frequently. I'm sure it helped that the surroundings were somewhat familiar. Then he took her back to Concord.

So my Monday visit was a little subdued, since she was tired. I got there a bit earlier than normal and she was lying down. Marek has decided to come every Monday now and he joined us for lunch. The dining room looked beautiful as always. Fresh flowers on the table, large colored Easter eggs in a basket and the always genial staff.

I had them bring the salads right away, even though Marek had not yet arrived. She ate all of her salad as usual. But Marek was quite late and thus so was the hot food. I lost count of the amount of bread that she ate in the meantime and, consequently, ate less of her main meal than usual (although she didn't leave any of the hot fudge brownie sundae).

Marek and I chatted about the nature of church as an institution and the sad fact of a United Methodist church in his town...which is the only church in his town...that isn't really open to new people or ideas. It was almost time for him to leave to go back to work, and as I talked, I glanced over at Mother. And then I realized that I'm a cad.

She returned my look, not really understanding the conversation, but what struck me was my realization that before that moment, I had not looked her way during conversation even once. Once Marek arrived, she was an invisible person in the room. No, she couldn't engage the conversation or really comprehend what was going on, but she could know that no one was looking her way, speaking to her, or caring about what she was doing...except for the moment when she accidentally flipped the little margarine container so high it almost hit the ceiling.

I felt terrible. After Marek left, I went back with her to her room. We did the bathroom routine (hairbrush count was down to 2 and the big, huge tube of toothpaste that was missing last week was back in the medicine cabinet. The new tube I brought last week was nowhere in evidence) and then I rearranged some pictures for her. For two visits she has been distressed about the pictures on her dresser. I finally figured out that it was simply too cluttered for her taste, so I moved one of the pictures somewhere else, moved some cards up to the plate shelf around the room and she was happy.

And then I discovered another bad thing about myself. Although Easter had been busy, she wasn't automatically ready to lie back down after lunch. It was pouring rain, so a walk was out; and when we passed Russell and Frances, they were playing gin rummy...an activity in which Mother couldn't participate. I could have offered to do a puzzle with her, but the flat truth is I didn't want to. I was afraid she would disrupt the card game, and I didn't want to deal with that; plus I was tired. Easter had started for me at 4 am and after four services and dinner that day, I was wiped on Monday. I wanted to sit in a chair and read a book, and I wanted her to lie down and go to sleep. It was easier.

But she didn't lie down right away. She began to examine the little beanie babies and other little stuffed animals and gifts that she has acquired on her nightstand. At least I'm hoping they were gifts! One little bear in a winter sweater and hat she seems especially fond of. Last week she wanted to take him out for our walk, since he was suitably dressed. Now she was calling the bear a poodle, and under his sweater was a guardian angel pin. I find it hard to believe that the pin came under his sweater like that. In any case, she was worried about that, so I took the pin off its backing and pinned it on the bear's sweater.

Eleanor was not having a great day. She wasn't angry, really, but she was agitated about something. Mother can always hear the agitation in her voice and goes out to try to help. Eleanor's room is right across from Mother's, although most of the time she is roaming the halls in her wheelchair. So we went out of the room several times to calm Eleanor. I came back in and watered the Easter lily from yesterday's services. Eventually a couple of the aides figured out her problem and wheeled Eleanor down to her room. As she rolled by Mother's door we could hear her loud voice saying, "I love this place!"

At last I picked up my book and plunked myself down in a chair. After a couple of minutes, Mother lay down on the bed. I was relieved and hated myself for being so. I wanted her to go to sleep. In her sleep I could pretend that nothing was really different; that she didn't need the kind of care she did. In her sleep, I didn't have to deal with her illness or that of the others around me.

The Easter lily on the table next to my chair convicted me. I love the smell of Easter lilies, but there had been no scent of it in the room...that is, until I gave it water. Now, the fragrance was filling the room as it must have when the woman poured the whole jar of perfume on Jesus. With no attention and care, it still looked just as lovely, but it could not praise God with it's scent. Within 60 seconds of receiving water, it gave its greatest gift...its fragrance. Just a little attention...

I would need to be better in my conversations with Marek, to be sure to visually include Mother in the conversation. And perhaps on another visit I would not let my own tiredness rule and allow a visit to be a visit. I must remember to water the lily.

We prayed, and I left.