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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9 comments so far

  1. Ann on

    Each time I read your blog, I am intrigued by Bonnie’s relationship with Mr. R. Is there always someone the patient’s focus on? How does her relationship with Mr. R remain consistent (or, is it not)? It’s so crazy that family members can be forgotten, but a relationship inside the center can be maintained (somewhat). Thanks for continuing your blog and sharing these transitions.
    XO

  2. Julia on

    i’m very sad after reading this. sad for you, sad for her, sad for my mom. it’s so hard to accept and let go when things aren’t as they should be and never will be again. and it seems the loss is freshened again and again with each sad new milestone.

  3. Sherri on

    So sad for you that she’s having trouble recognizing her Emily. Does it help at all that you and Emily (whether she can put together that you are the same person or not) are definitely special to her? I know this is hard for you.

  4. momsbrain on

    Ann: Mr. R is there all day every day, so he is sort of a habit for Mom. That’s how I see it. If I had been visiting every day, she might be able to keep some memory of me. But even that doesn’t last forever – my support group friend Bill visited his wife every single day, and she eventually looked at him and said, “Who are you?”

    Julia: Very true that the loss gets freshened repeatedly. Which is one of the worst things about this disease for caregivers – not so much for the patient, I think.

    Sherri: I know what you’re saying, and that does help some. But I assumed she’d always know by looking at me that I am special even if she didn’t know my name or my relationship to her, and I’m just not sure that’s the case. It leaves me with some regret that I don’t visit more often – though even if I did, that would not guarantee that she would consider me special.

  5. patwhite67 on

    Emily,

    I have just reread your recent blog and am saddened to hear about this latest change in your mom. That you have been the constant for her throughout her illness and the one of her children who has been with her the most makes it even harder to understand. But I guess there is no understanding Alzheimer’s. The hurt is comfortless when it comes to losing a mom’s recognition.

    Thinking of you, Pat

  6. Gemma on

    So this is what you mentioned at Taj. I can understand how sad this visit was. I’m glad you realize that on top of the usual stress of visits during meals, there was the extra bustle of having a whole lot of other people. Maybe a calmer situation will bring better results?

  7. momsbrain on

    Pat: You are so right – there is no understanding this disease. Which I should try to remember at all times… Thanks for your thoughts.

    Gemma: It could be that the commotion affected lots of things about the visit. But she seems to consistently not be quite sure about who I am. I think I have been in denial about it. But I also do know that someday she might be quite sure that I am, indeed, Emily. That just doesn’t seem to be the norm now.

  8. Jennifer Jayhawk on

    This is a hard post to read. I have to say when I call my Mom and I say, “Hi it’s me” she always replies “Hi doll”.

    My three brother’s who live in the same town however are taking a brutal beating. They love our Mom but they don’t “like” her much anymore.

    The memory can play tricks and games with your mind. It’s just so hard as you know.

  9. momsbrain on

    Jennifer, that is a nice response from your mom on the phone. I like that. I’m sorry to hear your brothers are having a hard time. I always consider myself lucky that Mom’s difficult period was relatively brief.


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