Archive for September, 2011|Monthly archive page

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.

Trouble in paradise

I got two calls in three days from a nurse at the Alz center. While I was driving home from work Friday, she called to let me know Mom had been involved in an incident with another resident. He had tried to pull her off of a couch, and she resisted and screamed. And later he tried to pull her off of a bed, and she resisted and screamed. Because the interaction was contentious and in a room rather than out in a public area, the staff couldn’t be sure Mom wasn’t hurt. She didn’t show any signs of injury. The two were separated. The staff members are not allowed to identify other residents at times like this. But I know it was Mr. R. Who else? After they were separated, Mom had an aide dedicated to her for awhile. Mom ate dinner that evening in the dining room near the lobby, on the skilled nursing side of the facility. They decided to inform me mostly because there was a chance Mom had been hurt and because Mom was a victim. I have previously received calls like this when Mom had been the instigator. I felt sad about this news. Even though Mr. R is not my favorite person, he has been Mom’s favorite for quite some time. It’s a shame that that companionship might be a thing of the past. But it seems his disease might be changing, causing this new, more aggressive behavior. And I don’t want Mom to be in the line of fire if he becomes angry. The nurse described Mom as calm and unaffected once it was all over. A rare good thing about Alzheimer’s disease.

I visited Mom for awhile on Sunday to see how she was doing. I found her in the program area, sitting on a couch with her lunch tray on her lap. She had eaten everything. There were some traces of food on her clothes. I got her bib and wiped off her clothes and returned the tray to the cart. Mom sat very quietly, almost frozen. She held her right hand out to her side, in mid air. I thought she might be tired. She didn’t acknowledge me. I talked to her, patted her leg. She just sat, staring. And then she looked at me and said something. We chatted. She smiled. “Should we learn something new?” was a memorable thing that she said. The activity for the afternoon was going outside in the courtyard. I asked Mom if she wanted to come. I helped her stand up. She walked about five feet and found a chair. “That’s what I want,” she said. I figured she might be exhausted. So I kissed her goodbye and went to the grocery store.

Late Sunday night (late for me, about 9 p.m.), the same nurse called again. Mom had been in the shower with an aide – one of Mom’s least favorite things to do. In a show of frustration, she plopped herself hard onto a toilet. Later standing again to finish the shower, she complained about pain in her right leg. Movement side to side didn’t bother her, but when her leg was lifted to the front, she complained of pain. So the nurse had ordered an X-ray. I went in this morning before work. Mom was still in bed while most residents were finishing breakfast. The X-ray had been done at night by a visiting service. No results were available yet. I touched Mom’s arm and talked to her, but she was sleeping. The aide that had been showering her was in again this morning. She said Mom hadn’t moved her leg all night. She also talked about the verbal abuse she takes from Mom during a shower: “You’re ugly. You’re fat. You’re going to die.” These are things my dear mother says to the aide who showers her. On top of the screaming she does. But this aide likes Mom. She told me so, and I can see it.

I visited with another daughter for a little while, who was feeding her own mother. Then I went back into Mom’s room, and the aide was feeding Mom. Or trying to. Mom was refusing to open her mouth for the pieces of grapefruit the aide offered. Eventually, she grabbed a piece of fruit off the spoon and put it in her mouth. “That’s what I want,” the aide said. I asked if I should leave. “I don’t want to make your job any harder,” I said. But she said Mom was eating now and had refused before I came in, so it was no problem for me to stay. “See, Emily’s here. I told you she’d be here,” the aide said to Mom. I sat at the foot of Mom’s bed and rubbed her good leg. She ate the grapefruit and the aide then turned to a plate of biscuits and sausage gravy. I said, “Mom, it’s comfort food. The best kind of Bonnie food.” Mom’s response was inconsistent, but she ate several bites after initially turning her face away from the fork. It was very interesting to see her refuse to take bites because she likes to eat. She eventually yanked her leg away from me. I guessed she was feeling overstimulated. And in pain. The aide got her to take a few drinks of milk. “Are you finished?” she asked. “Yep,” Mom said.

I pulled up a chair and sat with Mom. The aide had put a stuffed dog in the bed with her. “What should we do, Nancy?” Mom said to that dog. Nancy is Mom’s sister. “I’m going home, home, home,” Mom also said. She never says that kind of thing. She closed her eyes and twitched as if she were drifting off to sleep, and then opened her eyes. The Monday morning church service was taking place out in the program area, and we could hear the piano music and singing. Mom pretended to sing along. She also made a few odd noises and contorted her face. She didn’t seem to be in any distress, but she wasn’t her usual pleasant self. I attributed most of her behavior to pain. But I also felt like I was seeing a more demented Mom than I saw just a few weeks ago. I know an injury or infection can change behavior in patients with dementia – temporarily, usually. So perhaps the cheerful Bonnie will resurface after her leg heals. I learned from the nurses on my way out that the X-ray was negative – nothing broken. So Mom just has a couple of serious bruises that need to heal. I’ll be spending lunch hours with her this week until she can get out of that bed.

Family photos

My family gathered in Columbus over the Labor Day weekend for our baby sister’s wedding. It’s funny – several people asked me if it was my sister’s first marriage, I guess because I am sort of old to have a sister getting married for the first time. This is a half sister, but it’s a distinction I don’t really bother to make unless someone needs an explanation. My parents divorced when I was young, and Dad remarried and had three additional children. My stepmother has been in my life since I was a very young girl, and she and Mom got along, and Mom and Dad got along. We were lucky. And it is fun to have a bundle of kids now (now grown) and spouse/partners around for our family gatherings.

Sister Laura, brother-in-law Tom, niece Julia, Mom, me, brother Jeff.

Someone at the Alz center also said it would be nice if Mom could go to the wedding. Well, then again, maybe not. It’s not her daughter. It’s just interesting, how the residents’ family stories are a mystery to the staff.

We all got some time with Mom. She did well with the extra company, and stayed very relaxed. We gathered in the lobby of the Alz center and took a bunch of photos. Mom barely moved the whole time, which is funny. She lounged on the couch while we all maneuvered to arrange ourselves around her. When we were done with the visit and had to get going for the wedding rehearsal festivities, we walked with Mom back to the program area. Mom spotted Mr. R and her face lit up. She went and sat with him on a couch and they hugged. It was nice for my siblings, brother-in-law and niece to see Mom’s happiness in this relationship.

Mom with Julia, her oldest granddaughter. My other niece was unable to come to Ohio for the wedding.

One more family shot, with some laughter.

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