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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Wednesday, September 06, 2006


What does it mean to visit? I have been to The Birches twice since my last posting, but it's hard to know what to say.

The first time I arrived to find Mother with sevearl other ladies in the TV room. She looked up, "Well, you never know who you're going to see here!" she said with a smile. Next to Mother on the couch was a woman holding a birthday card for someone who had turned 90 years old. Maybe it was hers, maybe not, but she looked at it many times, taking in the beauty of the artwork, but then opening the card to find the inside blank.

Mother, on the other hand, was holding a lovely birthday verse from "Bob and Marcia," with a suspiciously blank front and back. She looked again and again at the blank cover, just as the woman beside her looked again and again at the blank inside. I tried my best to get the two parts of the card back together again, but to no avail. So I settled down in the third place on the couch, next to Mother, and joined in the group activity, which was watching a video of The King and I.

I tried several times to engage Mother in some sort of conversation. She would look at me briefly and then turn her attention back to the TV. I wrestled with whether I should take her back to her room in the hopes of having more real interaction. But then a part of me was grateful for the diversion. As I think about visiting Mother, I always have this bit of anxiety...what will we do? Will we both just sit and stare? What does it mean to visit when you can't have conversation or play a game or, now with her decreased mobility, even take a walk?

I never really had training in how to have visits that didn't involve either doing or saying anything. Of course in my job as a minister I visit non-communicative people in the hospital or in a nursing home from time to time...but I don't stay long. I go in and do something. I hold a hand, pray, and leave.

We stayed and watched The King and I. Others drifted in and out. A woman came by carrying a basket with several things wrapped in towels and facecloths. "I had to do it," she said. "I left everything to my daughters. He wants me dead. He brought me a poison drink, but I was onto him. I poured it out and the fish died." She then went on her way. Another woman who had no signs of dementia that I could detect came in and sat down. "Oh, The King and I" she said within about 10 seconds. She asked me about the weather and was soon joined by a friend who had come to visit. "Come on," she said to her friend, "Let me show you my room." An odd bit of normalcy on the foreign soil of dementia.

A woman with a walker came in and indicated that I was in her seat. So I got up and moved to a nearby chair. The woman with the basket came back through. She stopped to talk to Mother. "Don't worry," she said, "I won't be dead. He won't get me. I'm going to leave everything to my daughters." Mother smiled and nodded. And then it was time for me to leave to get to a 5 pm appointment. Mother still patted the birthday verse from Bob and Marcia beside her. The other woman still looked at the blank insides of her card. The King of Siam still worried about being considered a barbarian, and I had exchanged perhaps ten words with Mother in an hour.

The next time I visited was Labor Day, when we had a family gathering in the private dining room to celebrate David's birthday. We chatted about various events, but I can't recall that Mother spoke a word. Eventually we finished our meal and went up to her room. She has a new cubby to house her ever-growing menagerie of stuffed animals. The aide came in and helped her in the they do each time after meals. Then we took her back out to the common area and she joined in the next activity of the day.

Is that a visit? I don't know. I often teach others about the ministry of presence...just being there with someone, even when no one is speaking or doing much of anything. But is presence one-sided? Did Mother really know that I was there with her watching The King and I? I have no clue. But I do suppose that she knew she was in community. That there were others there with her, reassuring her that there was no danger...except for the guy with the poison drink...and participating in something that normal people do, often with about as much responsiveness.

I don't know if you can call it a visit, but I suspect it is still sacred, no matter how awkward it feels.


Anonymous Deb Peterson said...

Anne--I've often wondered the same thing with my mother. Is it better to ask the same questions that I know will provoke the usual answers, just to hear us speak? I'm suspecting that the silent, "present" visit is something that I have to learn. I think it does reassure my mother, being able to sit without the pressure of having to speak, which is becoming more and more difficult for her. I strongly suspect that such visits are sacred, too, and I love your description of yours.

I also love the image of the two women, each holding part of the greeting card and not quite knowing what to do with it, but accepting the incompleteness, nonetheless. That is actually a lovely little metaphor!

7:14 PM  
Anonymous Mona Johnson said...

Beautiful post, Anne. I too think just "being there" is important - with or without conversation.

6:30 AM  
Blogger Bailey Stewart said...

Very thought provoking post.

Mother just wants me with her. We don't have to talk, but if I leave the room, she is constantly calling me back there. Sometimes she'll lay with her back to me and periodically call my name - when I ask "what?" she says "Nothing, I just wanted to know you were there." I think presence is very important to them.

9:37 PM  
Anonymous Jean said...

Although I am so VERY sad that your mother has Alzheimer's, I am EVER so glad that you are experiencing all of this. My pastor Dad had Alzheimer's too, living in a 'Methodist' retirement housing. He was at home with Mother, so my experience visiting was different. I went to a Kubler-Ross workshop week to try to learn a bit about how to help him. Fortunately a Buddist woman who specialized in helping people die was also there and of much much help. I have tried, unsuccessfully so far at least in publishing, to write something of what I experienced and learned. One of the things that hurt me most (and him) was the day a group of visiting pastors said "He used to be such a fine man." A very fat tear rolled down his cheek. I believe the person continues to be present; it is just that we have trouble accessing where they are. My neurologist also told me that her Dad spoke coherently to her the day before he died. So VERY much to be done re this horrific illness, and the church has not yet done it, to my knowledge. I could not obtain 'help' for my Dad to deal with the awfulness afer the diagnosis, so it was up to me, and I was also ill... ANYway, PLEASE continue to grow in the ways that can make living with this awful diagnosis better for both the person and loved ones!!! Jean

1:45 PM  
Blogger Anne Robertson said...

Jean, I'm so sorry for the things that were (and weren't) said at your father's side. So many people don't know how to respond...even those who should know better.

Your statement about your father's coherence right before he died is a surprisingly common one. Of course I'm not to that stage yet with Mother, but my take on that is a spiritual one.

It isn't only with Alzheimer's. Many, many people with drawn out illnesses have a sudden surge of energy and alertness a day or two before they die. It's so frequent that when a family member tells me that they believe a terminally ill loved one may be recovering because of the sudden improvement, I start clearing my calendar for a funeral.

I believe that last surge is a gift from God to allow a person the opportunity to make their peace and say goodbye to loved ones. Maybe it's just some biological quirk, but I prefer to think that God is gently guiding all of us through a difficult time by giving a last opportunity for communication.

2:06 PM  
Blogger Karma said...

I very much believe that these visits can be about both being in the presence. I like the "best friends" approach to this sort of thing. I try to go to wherever my mom is in the moment - is she thirsty? is she comfortable? I try to get her to talk: "Mom, do you like the movie? Do you want to sing along?" My mom loves to sing. I also try to get her to engage in conversation with another resident, because she feels more comfortable with that. I'll put my arm around her...whatever I think she might enjoy. But the most important thing is to keep visiting.

3:43 PM  
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