Archive for June, 2011|Monthly archive page

The scream

I visited Mom Tuesday when I was in her neighborhood after getting a haircut. When I arrived, I stopped and talked for awhile with the daughter of Mom’s roommate. In November, the roommate had what now is called an “acute episode,” and we all thought she was close to death. She is still with us, with the major change since then being that she now uses a wheelchair all the time. She can stand up, however, and she taps her hands to music, and she eats sometimes but not always, and her face still shows expressions of recognition and interest. It’s a tough thing to understand. Her daughter goes to the Alz center every morning and at lunch time, mostly to reduce the burden on staff who otherwise would have to feed her mom. She is going away for the weekend, and it will represent the first time since around Thanksgiving that she has gone two days without visiting her mother. It’s really amazing.

And then I was off to check in with Mom, who was in a chair with her legs hoisted over the side. Mr. R was on the far side of a couch just a few feet away. I wondered if they had had an argument. I said hi to him, but he ignored me. I sat across from Mom and chatted with her. The bruise on her head was gone. She looked pretty good, though her clothes were covered with food stains. At one point, she looked in Mr. R’s direction and said, “Hey, Pete. Pete.” He didn’t respond. His name isn’t Pete. A little while later, she said, “My husband. Bill,” while looking at him. No response from him again. His name isn’t Bill, either. The funny thing is, I am pretty sure Mom has never known Mr. R’s actual name. I’ve never heard her use substitute names for him before this.

A visitor was playing piano and singing, and I offered to take Mom over to that area to listen and maybe even sing along. We stood in the general area of the music, looking for seats, and two aides came up and noticed that Mom’s clothes were dirty. “Let’s change you,” one of them said. One went off to get a new outfit for Mom – a blue T-shirt and blue-and-white striped pants – while the other took her hand and started leading her toward the shower room. Mom took my hand on the other side, but we eventually got separated by a table. I didn’t realize until later that Mom had an inkling that she was going to the shower room and she did. not. want. to. go. there. The aides got her into the room, and an activities staffer came up to talk to me while I waited outside the door. I told her I hoped the aides hadn’t decided to change her for my benefit. I didn’t really care that she was dirty. But she said they make the rounds and take residents in as needed. And then I heard a scream. A high-pitched scream, from behind the shower room door. If I hadn’t known it was Mom, I never would have guessed it. In her old life, she might yell and swear, but I had never heard her scream like this. The activities staffer told me it’s not uncommon to hear Mom do that, as well as others. Lots of residents don’t like being changed – the nudity might bother them, or the touch of a stranger’s hand, or the feeling of water on their skin, or especially any cleaning of the genital area – many Alz patients cannot stand it.

Mom surfaced from the room in new clothes and walked quickly away, toward the lobby. I thanked the aides. I said I hoped she just screamed and didn’t fight. “She kicks, bites, scratches, hits, whatever she can do,” an aide said. “It’s our job. It’s OK.” I was just shaking my head. “She’s special. I like her,” she then said about my mom. I also asked about how Mom’s incontinence is – and how her bowels behave. She had just had a very long pee and a big bowel movement on the toilet, they told me. One of the aides said she can see it in Mom’s eyes when she needs to go the bathroom. And apparently Mom can still hold it, for awhile, anyway. I don’t know all the details about this, actually. The aide who likes Mom then also told me, as we watched Mom walking barefoot down the hall, that the visiting podiatrist had tried to treat a callus on one of Mom’s feet, but she fought against that, too. He did manage to cut her toenails. He thinks the callus must hurt. But Mom never wears shoes anymore, and doesn’t often keep her socks on, either. And she still does a lot of walking. It made me wonder again about the twisted signals in Mom’s brain. Maybe she doesn’t feel pain. Or she doesn’t know it should be bothering her, or how to avoid it.

I found Mom sitting in a chair in the lobby. She seemed calm, and I’m sure she would soon forget the trauma of the shower room. I bent over to hug her. She was not very responsive. Her neck smelled clean, like maybe the aides had given her a quick rub-down with a washcloth. I told her I was going back to work, and she said, “OK,” and she sat quietly, not even really noticing that I was leaving.

June care conference

Five Alz center staffers and I met today to talk about Mom in a quarterly care conference. Mom has lost 11.4 more pounds in the last three months. She now weighs 168. Her weight is not considered too low, but a dietitian did recommend that Mom start drinking a nutrition shake to get some more calories. Today was the first day for that, so we don’t know yet how Mom will do with it. She likes sweets, and the drink is sweet, so everyone assumes she will be happy to drink it. She doesn’t walk quite as much as she had been in recent months, which appears to be slowing the weight loss.

The dietary director said Mom’s eating habits range from refusal to eat to finishing 100 percent of the food on her tray. So I guess you might say she remains unpredictable in this area. In the morning, someone on the staff will work pretty diligently to get her to sit down for breakfast. But that doesn’t mean she’ll stay. They try to seat her with Mr. R, which tends to work out. If she spots him across the room while she’s seated at a table, she’ll get up and go to him.

The activities director said Mom has good days and bad with regard to being able to focus and comprehend instructions. She will participate in the ball toss sometimes, and she always enjoys music and dancing. During an indoor golf game recently, though, Mom could not understand how to swing the club. “We all kind of ended up ducking,” she said. I assume that means Mom might have been swinging it like a baseball bat. I told them all about how Mom couldn’t seem to reach out to me to take the chocolate bar out of my hand on her birthday. I wondered aloud if she might not see well. But the staff members said she can see Mr. R, and she will recognize that someone is waving at her from a fair distance. So that’s not it. The doctor at support group last week said there can be some perceptions problems with Alz patients, especially when they walk and encounter a transition from carpet to wood flooring. They perceive an actual barrier and lift their feet very deliberately. Mom seems to do that, too. I wonder if that also contributes to her lack of interest in sitting sometimes – maybe she can’t really perceive the shape of the chair in front of her.

Her medications have not changed at all beyond the new calorie drinks. She had taken a nap on a lobby couch just this morning. I love that about her. The social worker described her mood as always neutral or positive – never really negative. And that’s how I like it. She is known for that, really.

I mentioned that I had noticed the large bruise on her head. “I don’t mean this to be a complaint,” I said at the beginning. And then I said that I thought it was probably substantial enough to warrant a call to me, even if no one knew how she got the bump, which was highly likely. “I guess I might be complaining a little bit,” I eventually said.

She still spends time with Mr. R, but also drifts away from him sometimes. She will hold hands with others, men and women, because she enjoys companionship. I told them how she held hands with me last week and would stop and put her hands on my shoulders and compliment me. “She might do that with other people, too, but as far as I’m concerned, that is special behavior, just for me.” They all laughed and nodded. She sometimes says my name when I’m not around, the activities director said. So something about me is in there somewhere.

When we were done, I visited Mom for a bit. She was walking in the program area and disappeared into a distant corner. By the time I caught up with her, she had come out and was continuing her walk. I stood and said hi to her, and she paused and looked at me. I said, “Hi, Mom,” with lots of enthusiasm. “I’m not sure,” she said. She didn’t seem startled or upset. I walked up to her and hugged her lightly. She took my hand and we walked a little bit, and as we passed a hallway, Mr. R appeared with a group of residents who had gone outside for a little fresh air. He took Mom’s other hand and we walked to the lobby and sat together on a couch. “I like this,” Mom said. Extra companionship, I was guessing. We just chatted a little bit. I touched her bruise; there’s still a small bump and the bruise is fading. I rubbed her head a little bit, and she kind of got a sleepy look in her eyes. Mr. R sat quietly, possibly being grumpy about my presence. I had to get back to work. I kissed Mom goodbye and said to Mr. R, “I’m leaving, so you can be happy now.” The receptionist laughed at that as she let me out the front door.

Bonnie’s birthday

As of today, Mom is 74 years old. I went to visit her today, Hershey bar in hand. I thought that was about the only gift she would need, or want, or understand. I went to the Alz center after lunch. I found Mom sitting with Mr. R on one of their usual couches in the program area. Mr. R waved at me as I approached. I stood in front of Mom and said, “Hi, Mom. It’s your birthday! Happy birthday!” She had just finished putting a sock on her foot. “Who are you?” she asked, just a little abruptly. I said, “I’m Emily. I haven’t seen you in awhile. But it’s your birthday!” I pulled up a chair and sat across from her. I took the Hershey bar out of my purse and said, “Here’s some chocolate.” She liked the sounds of that. I broke off a piece and tried to hand it to her. She would reach out toward my hand but couldn’t seem to place her hand next to mine to take the chocolate. I held it up to her mouth and she took a big bite. With other pieces, I placed the chocolate in her hand, and she fed it to herself. She has had that problem before, where she can’t seem to reach to where she wants her hand to go. I don’t know if it’s a perception problem because that part of her brain is affected, or a lack of vision since she is without her glasses now, or what.

I gave Mr. R a few bites of chocolate. I went to Mom’s room to wash my hands and brought out a wet paper towel to clean her hands. I got one sock from her closet and put it on her other, bare, foot. Her closet was a mess. It is time for me to wash her summer clothes and put them in her closet, and take her winter clothes back to my house until it’s cold again. Maybe this weekend. Mom seemed interested in my pants and feet. At one point, she removed one of my shoes – a flip-flop. She asked me where I lived and what I had been doing all day. And she said a lot of things that lacked context, but sounded like stories, and she amused herself sometimes.

Mom smiles while telling a story. I like it that she still smiles and laughs a lot.

Mom stood up eventually, appearing to want to take a walk. Mr. R declined to come along. I told him I’d bring Mom back. We held hands and walked toward the lobby. When we got there, Mom stopped, faced me, put her hands on my shoulders, and said, “You’re the best.” I said, “You are, too.” And we had a big hug. She talks nonsense much of the time, but she can still convey a compliment like that sometimes, which is very nice for me. We sat on the couch. I had noticed she had a bruise on the left side of her head – a doozy of a bump when it happened, I’m sure. I had slightly conflicted feelings about it. Since it’s such a visible bruise, I kind of felt like someone should have called me about it. However, I know that the residents bump into things, fall, get hit by something or someone, stuff like that, and that whatever happened was surely an accident. Heck, maybe Mom was too enthusiastic with a kiss for Mr. R. They did some kissing today, so it’s possible. But while I was sitting there, I took a picture of it.

The bruise is not all that visible, but from the left-center of her forehead up into her hairline, it probably covered about two inches.

I touched it softly and asked if it hurt, but Mom had no reaction. I could feel the bump. I gently touched her hair and her head, and gave her a little head massage. Her hair was clean and wavy. I checked her head for any other bumps in the process, and didn’t feel anything. Mom mentioned the name Nancy a couple of times – that is her sister’s name, and also the name of a neighbor in her old apartment who shared the same birthday. I told her about her neighbor, and she said, “Is that right?” Just like the old Bonnie would say.

After sitting for awhile, she stood up, ready to walk again. We returned to the program area. Mom sat briefly in one of the chairs in the activity circle. By the time I pulled a chair over to sit next to her, she had gotten up again. We went over to rejoin Mr. R on the couch. Mom patted the seat next to her, and I sat down on the couch, too. I told her I had to get back to work. I kissed her cheek, saying, “Patrick wanted me to give you a kiss.” She seemed to like getting a kiss. She turned to Mr. R and kissed him. We walked a little bit more, the three of us this time. And then we returned to the program area. I worked on convincing Mom to sit down. A woman resident who had been having a bad day, who was crying, sat across from us on a couch, being comforted by a male resident. Mom was a little distracted by that. Mom stood up, put her hands on my shoulders again, and gave me a smooch. I think by this point, Mr. R had had about enough of me and my affection for and from Mom. I pulled a chair up next to him and patted the seat, the way Mom had done to encourage me to sit with her. She finally sat down, and I dashed away before she had a chance to stand up again.

Never enough, or always too much?

I have sort of been on a “pause” setting with regard to Mom for the last few weeks. After Mother’s Day, I managed just two very short visits, the last one being on the Friday before I left for a week-long vacation. I have been back from vacation for four days, and still haven’t visited her. And tonight, I skipped support group – for the third or fourth week in a row, I’m really not sure. Tonight, I accompanied my dad and stepmother to a tasting with a catering company that will provide food for my little sister’s wedding in September. Last week, I was away. The week before, I went out to dinner with Patrick to celebrate his new job. We celebrated it a few times, but we had gotten some especially good job-related news that day and decided to have a dinner out. I’m not sure why I need to justify missing support group. But that’s the thing. I feel like I do. I feel guilty for not attending. And that guilt I can really do without. Not long ago, support group was an appointment I felt compelled to keep every Wednesday evening – in a good way. I looked forward to it. Now, I feel completely unsure about what I would talk about in group. So I guess I have been in a bit of an avoidance phase for a little while.

And then there is the guilt I feel about not visiting Mom very often. When I was last there, and she was so focused on Mr. R, I had familiar feelings: Why bother? I’m definitely not doing her any good, and this visit does little for me beyond assuring me that Mom is OK. And then I think, but that is important. I need to know she’s OK. For my own peace of mind, I want to see her regularly to look for any changes, any signs that something could be affecting her good mood. And even though my relationship with her and visitation schedule are totally my business, I want to be seen by the center staff as an attentive family member.

I have conflicting emotions; sometimes I am overwhelmed by my self-imposed feelings of inadequacy at the same time that I reduce all Mom-related activities, only exacerbating that sense of being overwhelmed. It is clearly a cycle and I’m not managing to do anything to get myself out of it. I have been thinking about this blog post for more than a week, and yet I continued to just not get to it. And the title of the post: I had selected that almost immediately after visiting Mom. I never feel like I am doing enough, and yet lately stuff related to Mom always feels like too much to take on. I rarely really spend as much time as I could or should (by some arbitrary standards, I guess) with Mom when I visit her. And yet, sometimes when I am there, I am tense, stifled, unsure about how I could possibly make the time somehow meaningful for Mom, and almost immediately am planning my departure. I am making it sound worse than it really is, I suppose: we laugh, we hold hands, we walk, I compliment Mom about her hair and she seems glad to have me there. I guess I am disappointed with myself that I cannot make the laughter genuine, that my smiles for Mom are a front, and that behind the fun of the moment I am consumed with sadness and a sense of resentment that I had thought I had discarded long ago.

So, I think I am in a phase. A new and different phase. I’m not consumed with the subject of death. I am able to concentrate at work. I had a terrific vacation. But my emotions concerning Mom are all scrambled and hard to articulate. And I find that annoying.