Archive for February, 2011|Monthly archive page

The ever-present Mr. R

I am having a hard time mustering up the … I don’t know, strength? interest? time? … to write a full blog post about my sister Laura’s recent visit, and how we passed the time with Mom. It’s not about any problem with Laura. I just go through phases, it seems, with this blog. Sometimes I can’t wait to post. Sometimes I feel a need to post. Sometimes I just sort of avoid the whole thing. Laura and I had a very nice time together. Our visits with Mom were … OK, I guess. Not terrible. Not great. Laura visited Mom alone on her first day in town, while I was away at a conference. She had e-mailed me in advance to ask about visiting by herself. She was a little nervous. But it sounded like everything was just fine. Mr. R was around for every visit. And even though we are both glad Mom has that companionship – we certainly know it is a very good thing – we now both have experienced the resentment it also brings. Laura came from California, and yet she couldn’t get a moment alone with Mom, because Mr. R was always by her side. It’s hard to describe these emotions: Mr. R’s attention gives Mom lots of happiness. We want Mom to be happy. But his presence also deprives us of our mom’s full attention on us. That can hurt, even if her attention isn’t at all what it used to be.

On Tuesday morning, Laura and I met at the Alz center. There is a weekly musical program that I’ve heard a lot about but hadn’t yet seen for myself. Residents, staff and volunteers stood in a circle and sang songs accompanied by one of the volunteers on the piano. For a full hour, the pianist led the group in song. When I walked in, I could see Mom standing in the group, and then walking into its center, and then returning to her spot. She sat down on a couch and then stood up again. Mr. R was singing, which surprised me. Eventually, Mom sat down for good, and I went over and sat next to her. I put my arm around her. I asked her, “Is it OK if I put my arm around you?” And she said, “What are you going to do with it?” We laughed. She seemed fine having me there, but I don’t think she knew who I was. I tapped her shoulder and sang along with the songs when I knew the words. Laura arrived a little later with a cookie for Mom. A nurse had recently given Mom a jelly sandwich for her morning snack. Then she ate the cookie. When the singing stopped, I gave Mr. R his jelly sandwich, which I had been holding for him. He handed it to Mom, and she ate half of it. Her appetite is just fine. She eventually got sleepy.

Laura watched the group sing. Mom dozed off.

The next day, we found Mom and Mr. R in the lobby, on a couch. We pulled up chairs and sat across from them to chat. Mom was really cheerful, which was nice for Laura. On her previous two visits, Mom had seemed very tired. Laura liked bringing Mom treats. And Mom liked these treats. She quickly ate the cookie that Laura had brought.

Mom eats a cookie on the lobby couch. Those are her socks on the couch next to her. Mr. R's arm and leg are visible on the right.

Mr. R was not happy. He soon began making comments generally expressing his dissatisfaction with this turn of events. He said he had to go somewhere, and Mom had to go with him. He said he had to get something over there. Things like this. They didn’t make complete sense, but it was clear he wanted to be somewhere else, without us. He was a little snippy with Mom. She was completely oblivious to his bad mood. Eventually, she was convinced to go along with him. They got up and started walking. Laura and I continued to sit there, wondering what would happen when they returned. A staff member came by and saw us like that, facing an empty couch, and she went down the hall and rounded up Mom and Mr. R and brought them back to the couch. This didn’t last long. We all got up to walk toward the program area. When we got there, I suggested we all sit down together somewhere. “Go to hell,” said Mr. R. I said, “Why don’t we sit down?” and he said, “Sit on your ass.” What a total grump he was. I turned my attention away from him and stopped to chat with another resident. Laura was observing Mom and Mr. R, who was increasingly upset. He grew just nasty enough that staff members separated him from Mom, with Laura’s encouragement. Laura, Mom and I went into Mom’s room while a staff member stayed with Mr. R on a couch. Here, Laura and I were happy to have some alone time with Mom. And within minutes – I am not exaggerating – Mom was asleep.

Mom drifted off almost immediately after she was separated from Mr. R.

We were glad to see her get the opportunity for some rest, but it was also an unsatisfying visit. When we came out of Mom’s room, Mr. R said, “There’s two of them, and they just beat the crap out of her.” So it was clear he was mad at us and not at Mom. As we walked away, we saw him get up and go into Mom’s room. A staff member quickly intervened. And we just left. Later that evening, we attended support group. Before the meeting, we stopped in the program area to see how everything was going. Mom and Mr. R were walking around. Mr. R greeted us in a fairly friendly way. A staff member came over to take Mr. R away when he saw us, but we said that it was OK, that we were just popping in. Plus, all seemed to be forgotten, as is typically the case when Mr. R gets grumpy. Laura, who was leaving early the next morning, got something important this time: a chance to hug Mom goodbye.

Waiting for Emily

So, I think the transition might be complete, and Mom really doesn’t know who I am. I’ve known this would happen. I’ve seen it happen with her friends and my siblings. I have heard others in support group talk about how it hurts, especially for spouses. I tend to think the worst is behind me. But I don’t like this.

I had a really nice visit with Mom on Friday morning. I had a brief appointment outside my office at 11 and decided to swing by to see her before lunch. She was sitting alone in the program area, just outside the activity circle. Residents were playing wiffle ball. I went up to Mom and she said, “Who are you?” with a big smile on her face. I said, “I’m Emily.” She seemed satisfied with that answer. I sat down next to her and we chatted. I had last seen her a little over a week earlier, when a support group meeting was canceled. That was not a good visit. It was evening, and Mom was resting on a couch with her head in Mr. R’s lap, and even though we spent some time together walking around, Mom was sort of out of it.

So I was so glad I made this decision to see Mom Friday. She seemed happy to have me there. At one point, she said, “Where’s my daughter?” She hasn’t said that in a long time. I said, “I’m your daughter. I’m Emily.” Later, she said, “Where’s my dad?” He died in 1991. I said, “I haven’t seen him in a long time.” A little later, she wanted to join the group, which was now bouncing around a big ball. I sat behind her, leaning over the back of her chair and just enjoying being with her.

Today didn’t go as well. The Alz center hosted a Valentine’s Day lunch and invited one family member for each resident. The start time was listed at 11:30 a.m., and I tried to be early just in case Mom felt neglected as a crowd formed with the extra people around (though these days, I don’t think Mom would notice whether I were there or not). We sat at a table together. Mom seemed restless. She had one socked foot and one bare foot. “We could just walk over there,” she would say. And I’d say, “We’re about to have lunch. Why don’t we eat first and then take a walk?” She said, “I thought Emily was here.” I said, “I am Emily.” She said, “Do you wanna take a little walk?” And I’d say, “I think lunch is on its way.” She said, “I’m waiting for Emily. I haven’t heard from her.” And I didn’t say anything.

I have often said I’m surprised that Mom could think about me in the abstract. People often told me she would talk about me when I wasn’t around. Well, now I think I am no more than an abstract concept. She can’t connect my face, my presence, with the Emily she is imagining in her mind. I wonder if some staff member is Emily to her now.

At about this time, Mr. R walked over. I offered him a chair and I moved so he could sit next to Mom. He didn’t say anything and he didn’t stay long. He moseyed away, saying something unpleasant upon his departure. Mom asked me what he said. “I think he’s in a bad mood,” I said. “Really?” she said. And that was the end of that. Mr. R didn’t like having me around today. And you know, I just didn’t care. I ignored him. I took Mom to her room to get a sock for her bare foot, and he followed us, standing outside the door while I sat Mom on the bed and put the sock on her foot. We came out and he went to sit on a couch, and we took a little walk. This was before lunch ever arrived. I finally agreed to a walk because lunch was not on its way after all, until about 12:15.

I got settled at a different table with Mom and another resident and her daughter. And another male resident, who is sort of young, sat at our table as well. He didn’t have a visiting family member with him. His tray arrived first. A piece of strawberry ice cream pie was in the upper left corner of his tray, right next to Mom. Without hesitation, Mom stuck her finger in his pie. He didn’t notice. He started eating, and Mom put her finger in his pie again. He got mad, and I said I’d give him her pie when it arrived. “OK, that sounds fair,” he said. I went over to the cart to see if I could find Mom’s tray. I heard some commotion and looked to our table, and there were splatters of ice cream all over the place. Mom had apparently stuck her finger in his ice cream, and I don’t know what happened next – did he hit her hand? – but the ice cream flew. I apologized to him and moved Mom to another table, where, ironically, Mr. R was sitting by himself. Mom finished the pie and ice cream that I had taken from the resident’s tray. A staff member brought him another ice cream. When Mom’s tray arrived, I passed her pie to his table.

I had received my plate in the meantime, and I gloomily ate my spaghetti, green beans and roll while Mom ate the sweets. Her tray arrived. She drank the milk. She bit into a roll. She was interested in her ice cream. She didn’t take any bites of spaghetti or green beans. I suggested that she eat. She just wasn’t interested. I put her fork on top of her food. She ignored it. Mr. R got up and left. It was clear to me that Mom was distracted, by my presence and by Mr. R’s distance. Mom stood up and started moving her chair, and she took my hand and we walked around the room, with her pushing the chair along in front of her. She walked herself into a corner and said, “Well, this should be alright.” I couldn’t guess what was going through her mind. I turned her around and we went back to the table. I picked up her fork and offered her a bite of spaghetti, and she ate it. I tried again, and she didn’t get it all into her mouth. Some fell on her chair. I picked it off of the chair, which had a fabric seat, and put it on the table. I felt just about done at this point.

I told Mom I had to go to work. She offered to walk with me. We walked toward the lobby, and I hugged Mom and told her goodbye. I told her if she went back to the program area, she could find her plate and eat. That seemed to interest her. I turned to go toward the front door, and looked back to see that she was standing, watching me. So I directed her again toward the program area, and some staff members nodded to me that they would keep her distracted so I could leave.

I sat in my car and cried a little. I was frustrated more than anything. But also dismayed by this turn of events. I think now it is best if I’m not around when Mom is supposed to be eating. She doesn’t do well with the distraction and she isn’t at a point where she needs me to help her, either. And I am aware that because some Alz symptoms have a sort of waxing and waning quality to them, Mom might recognize me and tell me she loves me the next time I see her. Or she might say, “I’m waiting for Emily.” I just have to be more prepared to expect the unexpected.

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