Five days in a row

As I had planned, I have spent my lunch hours with Mom this week. That makes five visits in five days, including Sunday, before she hurt herself. And my feelings about this have been odd. I could get addicted to visiting this often, in a way. There is something comforting about a daily check-in. But it is also exhausting and I can feel the effects later – my neck and shoulders are holding a lot of tension. It can be upsetting, too. Especially the hard days.

Tuesday was a very hard day. Mom was not in bed anymore, but she had stayed in bed all day Monday with her sore leg. By the time I got to the Alz center, she was finishing up lunch. She was sitting at a table, and her plate was fairly clean. An aide passed by, picked up a spoon and fed Mom a bite of peaches. And then walked away. I took this as a sign that I could help Mom finish her peaches. I was happy to find her out of bed, but was stunned to find that the eye infection had returned. And her eyes looked just terrible – the skin around them was a hot red, and her eyes were watery and goopy. It looked so uncomfortable. I also noticed, though, that her behavior was off. She was very quiet. She would tilt her head back and contort her mouth. She would let her head drop forward as if she could fall asleep immediately. When she spoke, her words were slurred – that was completely new. I just touched her arm or leg or back and talked soothingly to her. When she was finished eating, we stood up together. She expressed that she was in some pain. Two aides passed by and said it was significant for her to be talking about pain because she so rarely does. They seemed a little worried about her. I was worried, too.

We went to a couch and sat next to Mr. R, whose behavior has stabilized since the problem on Friday. He had also stood over Mom when she was trying to finish eating, but had eventually walked away. I considered pulling Mom’s legs around on the couch so she could lie down, but I was afraid of hurting her. I sat next to her and put my arm around her and we just sat. I wondered if Mom had taken a dive that she wouldn’t be able to recover from. She just seemed so different. Even though I know pain and infection can cause behavior changes, I couldn’t convince myself that this was a temporary thing. I found it very upsetting to see her this way, and it was because, for the first time in a very long time, I could see that she was suffering. And I do not want her to suffer. An aide came and asked Mom if she wanted to lie down. She said, “Kiss Emily goodbye. I’m taking you to bed.” I appreciated this, because I did think Mom seemed exhausted. And I numbly returned to work, and was grumpy and mopey for the rest of the day.

I returned on Wednesday, not sure what to expect. Mom was sitting on a distant couch in the program area. The couch had obviously recently been urinated on and the cushions had been set to the side to let it air out, and Mom was just sitting right in the middle of the spot where the cushions normally would have been. I pulled up a chair to face her, and talked to her. Her spirits seemed better. Her eyes still looked pretty bad but I knew she was getting drops again. When the lunch cart came, I helped Mom stand up and saw that she could walk pretty well. I took her to a table, put a bib on her, poured her milk and cut up the chicken breast and baked potato. She began eating with her fingers. She picked up her fruit cup and drank juice from it. She sipped at her ice cream. She obsessed on a sour cream container until she could get it open. She stuck her finger into the container and licked off the sour cream. She drank her milk with enthusiasm. I occasionally helped her find a utensil. But she is so adept at eating everything with her hands that I just let her do her thing. When I knew she was done, I put her tray away and told her how happy I was to see her feeling better. She pretended to conduct an orchestra. She danced a little in her seat. She seemed to have turned around, and I was so relieved. I started making motions to leave, and an aide came by and suggested that Mom should go to the bathroom. Mom doesn’t like doing that. She said, “I don’t want to be old.” The aide thought that was a good one.

Today, Mom was eating when I arrived. She didn’t have a bib on and she had dribbled gravy and potatoes onto her clothes. I put a bib on her and sat with her. She said a few things that sounded like complaints, and they seemed to be directed at people nearby. But then she turned her attention to me and chatted and worked on her food. She used a knife to inefficiently scoop up small bites of corn and meatloaf. I fed her an occasional bite of meat with a fork. She drank her own milk and then helped herself to another resident’s glass of milk. He didn’t notice. She finished up by sipping her melted ice cream – after first using the little cup to scoop up one last bite of meatloaf, gravy and corn. She did a lot of talking, and at one point told me I was pretty. Her eyes looked a tad better, but the skin on one eyelid looked bumpy and more irritated than usual. She just digs and digs at her eyes so I know she is uncomfortable. But at least there is progress. We stood – she stood without help – and walked a short distance to another couch. She complained of pain. I hoped it was mostly caused by stiffness after sitting for so long. The wife of a resident happened to mention to me that she, her husband and Mom had taken a walk together in the morning, so that eased my mind. Mom and Mr. R found each other and Mom was in a lounging position, her feet hoisted onto his lap, when I left.

6 comments so far

  1. Jennifer Jayhawk on

    Emily, I have read this post five times trying to think what to say or how to respond. It is stunning how quickly Alzheimer’s has slowly eaten away at your Mom. I don’t know if it feels that way to you since you are living it.

    The bib’s, no eating utensils and someone urinating on the couch have to be overwhelming. I can still have conversations with my Mom. Almost all of her friends are in their last stages at this point. Anderson Cooper is still a frequent visitor in her bedroom at night. It’s so different then what you are experiencing. We have many conversations about Anderson and his guests in her bedroom. following her to the bathroom and leaving the lights on!!! I guess both our scenarios are quite weird.

  2. Laura on

    Although Mom’s recent behavior may be disconcerting, I feel confident that she will bounce back when she feels better. Mom always had a low threshold for pain and hated discomfort of any kind so it makes sense that she would react negatively to her leg injury. I only see Mom a few times a year and I don’t think this new development seems particularly alarming or stunning. She is in a great place with an understanding staff and a daughter to be there for her in times of need. Your presence is clearly a comfort to her. Thank you so very much!!!

  3. momsbrain on

    Hi, Jennifer – It has felt a little overwhelming, but for me the worst thing is the recurrence of the eye infection. That kind of makes me mad, though I don’t know how possible it is to really control in a patient who digs at her eyes all day long and doesn’t wash her hands. If my mom is hallucinating about visitors, she doesn’t talk about it! I hope your mom doesn’t feel scared by that. Weird – that is for sure.

    Hi, Laura – I do think Mom is doing fine overall. Like I said to Jennifer above, I’m mostly upset about her eyes. I just hope that clears up pretty soon. The leg pain seemed to be tolerable pretty quickly. I just hope she doesn’t decide to protest showering again in such a destructive way – by sitting to abruptly on a toilet. What a way to hurt herself!

  4. patwhite67 on

    From your words about your mom this time I could sense the sadness and frustration you are experiencing because your mom is unable to really tell you where she is having pain. That is one of the most cruel aspects of dementia, that communication is broken.

  5. Lesley Austin on

    After reading your words, Emily, what stands out for me is what you already put your finger on….you don’t want your mom to suffer. It is the hardest thing to face, especially when you can’t always alleviate it. I have become aware that the main indicator of what is a “good” day or a “bad” day with my mom is whether she has been suffering…for my mom at the moment that is mental suffering. She is aware something is wrong and is saddened and depressed by it and expresses it to me in phrases like “I wish this would be over” “I don’t feel like myself” “I want to go home”…usually accompanied with all the physical signs of dejection. It is heart-rending. Your mom’s comment about being old sort of reminded me of that.

    Wishing us all strength and peace.

  6. momsbrain on

    Hi, Pat: I was feeling sad and frustrated. I felt better when I was able to see her close to normal – her normal – last week. And then I got so busy at work and over the weekend that another week has passed, and I am definitely wondering what I am missing! I’m going to see her tomorrow.

    Lesley: So true, it is just dreadful to see Mom suffer. Surprisingly, she reached a place of acceptance about having the disease while she was still aware. At first, she’d say she was stupid, and I always assured her she was not. And those were difficult times, so I sympathize with you and your mom on that front. And later, my mom would kind of shrug her shoulders and say, “well, you know I have Alzheimer’s.” It was very unexpected. Now, she doesn’t know she is sick, and all I want for her are no fear and no pain – essentially, no suffering. Strength and peace – yes, we need lots to go around!

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