Archive for September, 2010|Monthly archive page

Don’t assume anything

At support group last week, and at many support group meetings for that matter, we talked about how different Alzheimer’s is in each patient. The doctor who runs the group likes to say, “When you’ve seen one case of Alzheimer, you’ve seen one case of Alzheimer.” (He declines to call the disease Alzheimer’s.) So we are able to find lots of common ground in support group, but we also find that each of our loved ones has some particular behavior or pattern of disease progression that is completely his or her own.

I said during the discussion that my mom’s disease strikes me as very weird. She scores a 4 on the Mini Mental exam. The maximum score is 30, I believe. A score of 4 suggests very little remaining function. Yet Mom can still eat, and walk, and go through the motions of conversing, and respond to some verbal cues to, for example, put on a pair of socks. And maybe can still take some verbal guidance for dressing and grooming and going to the bathroom. I said that with her test score, it seems like she should be immobile, or nonverbal, or both, or something close to that. “And I get this feeling it’s going to be a long time before she is any of those things,” I said, based on how Mom has maintained at a generally stable level of function in the year she has been at the center.

After the meeting, the social worker running this session pulled me aside. I had missed the most recent care conference because of a conflict with work. And I hadn’t yet picked up the notes. She told me that at the conference, staff members noted that Mom has begun to drift away from Mr. R at times. Perhaps it’s withdrawal of some sort. She is not necessarily gravitating toward others. And she said Mom’s ability to talk had become more impaired, that it is little more than “word salad” at this point. Word salad. A very interesting description. It’s true, I haven’t had an actual conversation with Mom for months and months. But sometimes she can still mimic the behavior of a conversation, asking questions and giving responses to questions, even though little to none of what she actually says makes sense. It was a bit of a blow, to be told that right after I had said out loud that I assume Mom has an indefinite period of verbal communication ahead of her. I have no false illusions about her status – I never take negative news about her disease progression particularly badly, because steady decline is to be expected. What I felt instead was a little bit of embarrassment, I guess. Though no one in support group or on the staff would judge me for what I said about expecting Mom to linger in a stable state for a long time.

I actually checked in with Mom after support group to drop off six pairs of socks for her. I took them to the nursing station, assuming Mom would be in bed. But she was in a distant corner, lying on a couch with her eyes closed, with Mr. R sitting in a chair at her feet. It was 8 p.m. The last time I had been back there in the evening, at 7 p.m., Mom had already gone to bed. I went over to the couch and said hi to Mr. R. “That’s my baby,” he said, pointing to Mom. Mom opened her eyes and sat up to say hello. I put a pair of socks on her and apologized for waking her. She was in her usual good spirits, but said a number of things that did not make sense. Mr. R also was talking, but about what, I am not sure. I didn’t stay long. When I began my goodbyes, he asked me to kiss him. He pulled me in for a little embrace, and I kissed his cheek. I guess he is friendly and frisky in the evenings.

Tonight, Wednesday, is support group night. I am a fairly regular attendee, but I ended up skipping the meeting this week. Had dinner with a friend instead – a support group of a different kind, for both of us, I hope.

In my dreams

In a recent dream, Mom and I were shopping. I don’t know where, or what we bought, but I do recall that Mom was her normal self. It was sort of mundane, in fact, this shopping scene in my dream. It is typical of most dreams – I don’t recall many details at all. But when I woke up, I did remember that Mom had been just plain old Mom in the dream. And it made me kind of sad. I don’t always know that I am missing her. That dream made me miss her.

I also have anxiety dreams on a regular basis. The same thing, over and over. I am in graduate school at Ohio University, pursuing an advance degree in journalism. I am living in subpar housing, renting with a bunch of strangers while living in Athens, away from my husband in Columbus. And I start out each quarter strong, completing all of my assignments. But when finals roll around, or final papers are due, I fail to complete any of them. I don’t show up to class anymore. I avoid checking my transcripts so I never have to look at all of the terrible grades I’m accumulating. I wake up believing this is true sometimes, that I am a complete failure in journalism school at OU. And the thing is, I already have an advanced degree in journalism from OU. And I was a good student. It is a weird recurring anxiety dream, and I am tired of it.

I visited Mom today, once again letting almost two weeks pass between visits. I walked into the program area, and Mom was lying on a couch, awake, with Mr. R sitting in a chair next to the couch. I walked toward at her, staring at her until we made eye contact. She looked at me, but for awhile no sign of recognition showed on her face. As I got close, and I said, “Hi, Mom,” she sat up and said, “Oh, hello.” She seemed pleased, but not exactly excited, like the last time. I pulled a chair up next to her. She had one sock on, so I went to her room to try to find another. I found a bunch of single socks in her drawer. I picked one, a completely different color, and put it on her naked foot. A male resident walked by, and Mom turned her head to look at him. This caused Mr. R to start saying things to Mom that had that tone I had heard before – he was being critical, and was suddenly angry, apparently because of the attention he gave to this other man. Mom would respond to what he said, but she was positively unaffected by the tone of his voice.

A group of older people in patriotic costumes came in to perform for the residents, and I urged Mom to come watch them. She stood up, and I asked Mr. R if he wanted to come, too. He stood up, and he and Mom joined hands, and we walked to the circle. I pulled up chairs so they could sit next to each other, and I sat behind Mom. Mr. R would sing along with some of the recorded songs – “You’re a grand old flag,” things like that. He reached over and took Mom’s hand. I had been upset by the way he had been talking to her just minutes before, but I stayed out of it, because I knew it would pass. I had no idea it would pass so quickly. About six songs into the performance, I told Mom I had to go back to work, kissed her goodbye, and left. I noticed she and Mr. R got up, too, and returned to their couch, away from the crowd gathered to watch the dancers. As Mom headed that way, she waved goodbye to me.

She looked good today. Fairly clean hair, and such a peaceful expression on her face. Breezy in white pants and a yellow fleece shirt. Seeing her like that reminded me of my shopping dream. I have to admit I’m so glad she still looks good – that she looks pretty “normal.” I noticed today that the male resident who was once described as the “new hottie” has changed so much in his short time at the Alz center. Maybe because he is young, the disease is progressing rapidly. He keeps his head hung very low at all times, with his chin resting on his chest. I think it must be so uncomfortable. His hair has thinned, and his body has changed. He has lost weight, but his belly protrudes. His face has thinned, but his cheeks are puffy. I felt sad today, seeing him. And remembering my dream. How nice it would be to go shopping with the regular old Bonnie this weekend. I have a big coupon for Kohl’s. She liked that store.

Occupational therapy

The occupational therapist at the Alz center left me a message today saying that she is going to start working with Mom on dressing, grooming and bathing. She said Mom had become more resistant to these things. She also said she had already gotten authorization through Mom’s insurance for this work. That was a relief. She told me to call her back if I had any problems with the plan.

I didn’t have problems, but I called her back. I had questions. A little over a year ago, I was picking out Mom’s clothes and encouraging her to change outfits about twice a week when she was still in assisted living. She had already started to dislike showers there, but she would take one with my help, and was cooperative with one staff member who helped her once a week. More than a month ago, an Alz center nurse told me Mom wasn’t showering at all anymore – she was getting sponge baths in her room, and all the important parts were getting clean, she assured me. So with that history, how is it that Mom can benefit from therapy now? That was my primary question.

The occupational therapist told me she would evaluate Mom tomorrow so she didn’t really know the details of Mom’s behaviors yet. But the nursing staff had told her that Mom has become more resistant to verbal cues or physical help with the tasks of getting dressed, getting groomed and getting clean. So the therapist will try different strategies and approaches and see what works with Mom. She’ll try to determine what Mom can do with strictly verbal instruction, and what she needs physical help with. And then she’ll try to figure out what words and actions work best to make Mom comfortable with the help. I guess I also wondered, but didn’t say out loud, why they were bothering with this. Inevitably, all Alz patients need help with this stuff. My impression is that Mom has needed help with most elements of dressing, grooming and bathing for a good year and a half or so. The therapist said, though, that once she figures out what works best with Mom, she will train nursing staff in those techniques. So instead of the staff having to take the time to figure out each patient’s individual needs on their own, a therapist takes some of that burden from them. It makes sense to me, but I have never given any thought to the details of successfully working with Alzheimer’s patients. It’s not just a skill, but also an art.

She knows me

Two weeks passed between my last visit with Mom before my vacation and my first visit with her upon my return. I was a little worried that she might really forget me. But when I arrived on Saturday afternoon and found her in the program area, she gave me a big hug, kissed me, and then hugged me again. She took my hand and we started walking. She had just been stepping away from a couch where Mr. R was sitting. Hard to tell what she might have had in mind before she ran into me. We walked down to the lobby. There wasn’t much action there. We turned around and walked back to the program area. When we switched directions, Mom took my other hand. Mom’s old friend from Cleveland had called the day before to say he wanted to take Mom to dinner on Saturday evening, to a mutual friend’s house in Columbus. So I visited Mom after lunch in case her clothes were dirty and she needed to change. Her clothes looked fine. She had on pink pants and a pink shirt with sparkly accents. She was wearing beige socks but no shoes.

I took her to her room to find some shoes. Her pink Crocs have bitten the dust – a strap is missing completely on one of the shoes. The blue Crocs weren’t in her room. I found an old pair of Mary Jane-style shoes in her closet, and put them on her feet. She probably hasn’t worn those shoes in at least two years. She said they felt good on her feet. In case she got chilly, I also put a dark denim jacket on her. This also covered a terrible rash on her arm. There have been repeated problems with scabies at the Alz center. Mom’s recurrent rash has been treated a few times. I think there is some doubt that it is still scabies, but it has been persistent. I checked Mom’s stomach, though, and she didn’t have a rash on her trunk, as she has in the past. Just an itchy-looking patch on the inside of her left elbow.

I left Mom with Mr. R and told her I’d be back in a few days. I mentioned to her that her old friend from college was coming to take her to dinner. She liked the news, but I’m certain she didn’t really know what it meant. As we walked, she did some of her usual nonsense talking. She was in a very good mood, and I had high hopes that she would enjoy the upcoming social activity. One thing I wanted to check was Mom’s toileting habits these days. I took an aide aside and asked her how Mom does with the bathroom. She said Mom cannot articulate that she needs to use the bathroom, but her behavior shows it clearly. She starts pacing around kind of quickly and enters people’s rooms. The staff members have come to recognize that this means Mom needs to go to the bathroom. “She won’t poop in her pants,” the staff member said. That was good to know. But apparently that might mean that she now sometimes pees in her disposable underwear – either as an accident or at times when the sensation to pee doesn’t mean anything to her. I left a voice mail for Mom’s friend to watch for this behavior while Mom was with him, so it would be a sign that she needed the bathroom. He called the next day and left me a voice mail to say Mom had had a pretty good time, but that she seemed anxious. He also said Mom had a bad rash on her arm and asked if the Alz center is treating that to my satisfaction. So that means her jacket either came off sometime or that she had removed it before she ever left the center. I don’t know what to think about Mom’s anxiety. She enjoys visits and chatting, but I wonder if taking her to an unfamiliar setting for a dinner event is too much for her now. Figuring out how to give her special outings that she can enjoy without making her uncomfortable will be a delicate balance for awhile, I think.

Before I left for vacation, a nurse had called to tell me Mom had a bruise in “the cottage cheese area” of her body that troubled her, so she was going to ask either the doctor or nurse practitioner to take a look at it. I went to the center the next day with hopes that I could be with the doctor during the exam. The nurse practitioner arrived first, and since I was there, she agreed to look at the bruise. The exam strategy was interesting: A nurse who doesn’t normally work with Mom held Mom’s hands from in front of Mom and asked for a hug. I stood to the side and was telling Mom I was worried that she had hurt herself. The nurse practitioner stood behind Mom and yanked down her pants. “Hey, you’re pulling my pants down,” Mom yelled. She was fidgety, and the nurse started tickling her to make her laugh or at least distract her. The NP and I looked at the bruise, which took up a lot of Mom’s right butt cheek. I had thought it was on her upper thigh based on the description on the phone. It was nasty, to be sure. Huge, but with a white-ish spot in the middle that made me think it was caused by some sort of trauma. Mom apparently had tried to explain to the nurse that she had fallen onto the side of a chair. The NP said she would do some blood work just to check Mom’s platelets. I never heard any news about it, so I assume all is well. I imagined that the initial nurse was concerned that Mom has a bleeding disorder of some kind. Her arms are sort of bruisy all the time. The NP said that’s more of a skin problem, if I understood correctly. So luckily I didn’t have worries about her while I was away.