A busy mind

Mom talked nonstop during my visit with her today. I found her lying on a couch by herself. She looked like she might be considering a nap. I pulled a chair up and touched her hand, which was resting on her right thigh. She didn’t acknowledge my touch. But she began to talk. These are just some of the things she said:

“I am so pissed off at her.” She continued on this topic for awhile, and I wondered if she was actually recalling a negative experience, or if there was a chance she was pissed at me. If that was the case, she didn’t seem to attach the negative feelings to me. I wondered what could have possibly happened.

“Nancy was here.” And I said, “Nancy? Was here?” Nancy is Mom’s sister, and I’m pretty sure I would know if she had visited. It is also the name of an old neighbor of Mom’s. Mom sometimes tosses out these names and it doesn’t mean anything. But then she said, “Yeah, isn’t that something?”

“The horses ran by.” She talks about horses a lot.

“Wasn’t that awful?” (pause, with no response from me) “She said to herself.” This made me laugh out loud, which made Mom laugh. That was classic Bonnie, to say something jokingly snide like that if she felt like she was being ignored. I loved it.

Throughout this conversation, I gently touched Mom’s hand or rubbed her arm, hoping that these physically comforting feelings might make her forget whatever she was pissed about. She was completely unresponsive to my touch. But she didn’t resist it. And she kept talking, sometimes in complete sentences, and sometimes in made-up words or what to me are meaningless syllables.

She abruptly sat up and then stood up. We took a walk around the program area, and Mom kept up the talking. She tapped one woman resident on the shoulder, and the woman said, “Are you crazy?” But Mom didn’t notice. Mom approached a male resident I didn’t recognize and put her hands on his shoulders. She was being friendly, but he said, “Hey, hey,” and she backed away. And she reached out to a university student who was visiting for a community service project. I explained, “My mom is very extroverted today.” And I thanked her for her volunteer visit.

We circled back to the couch, and Mom stretched out again. I leaned down to kiss her goodbye, and she said, “Where’s Roxy?” Roxy is one of our cats that lived with Mom for the last few years of his life; he died 2 1/2 years ago, beside Mom in her bed when she was in assisted living. I haven’t heard her say that name in a long time – even when he was alive, she often called him “Big Boy.” He was a fat cat.

When I made a motion to leave, Mom got up and started walking with me. Just then the lunch trays arrived, so I sat her down at a table and put a bib on her. A volunteer brought her tray. I poured her milk and buttered her bread and cut up her salisbury steak. Once I moved out of her way, she said, “I want that,” and grabbed a boiled potato with her hands. And then she began slurping at her ice cream cup. I could see she was focused on her food and was interested in eating, so I gave her one more kiss and told her to have a good lunch.

‘Sometimes I forget who I am’

Well, it appears I took a little vacation from the blog. It has been no vacation, that’s for sure. I’ve been wallowing in self-pity for the last several weeks – but it has had nothing to do with Mom. I came down with a cold, then I got a dental crown, then I had a toothache for 15 days, then I got a root canal, and then I was hit by a nasty sinus infection that really kicked my butt. I am on the mend now. Things could have been much worse – things could almost always be worse, for sure – but I just didn’t feel inclined to update the blog for awhile.

I have seen Mom a few times since I last posted. And she is doing great. My brother visited with her the week leading up to Christmas, when he was in town. He texted me some questions while he was with her, and I sent back some replies: What’s the deal with Mr. Beard? (He can appear grumpy, but he is actually extremely easy going.) Mom just got up and walked away. (Yes, she does that sometimes. It’s my cue to leave.) Christmas weekend went by, and we left town to visit Patrick’s family in Michigan. I fooled myself into thinking I would visit Mom on Christmas morning before we left. I didn’t make it. There really wasn’t time. And it’s OK, because she has absolutely no idea what Christmas is anymore. But even years into her illness, and on the fourth or so Christmas that hasn’t mattered to her, it still feels weird sometimes to count her out of it completely.

I visited her over the New Year’s weekend, and found her sitting at a table with a man who I have never spent much time with, but who I know to be the husband of a former longtime support group attendee. Ever since she moved him out of her home and into the Alz center, she hasn’t come to group anymore. This man and Mom were sharing the table, but they weren’t really together. I greeted Mom with enthusiasm. She began talking and she just continued to talk. She was very animated, and I was so pleased to see her in such a good mood. She laughed a lot and was full of smiles. I don’t recall most of what she said, but I do remember clearly that she said, “Sometimes I forget who I am.” To which I replied, “You’re Bonnie.” And that was that.

On my next visit, about a week later, Mom was a little more subdued. She was lounging on a couch with Mr. Beard. He seemed nearly asleep, and I thought Mom was probably tired enough to drift off into a nap. Something she said when I arrived confirmed my suspicion that sometimes when she talks, she is describing her perception of what she is seeing. I stepped away to push a chair toward her, and she said, “I can go get one.” I think she was offering to get me a chair. But it was too late; I had gotten it myself. I don’t know if she actually would have gone through the motion of getting me a chair, because that seems beyond her comprehension to me at this point. But something about her saying that just as I was pulling up the chair – I just felt that I knew that was what she was trying to convey.

I talked to her and tried to take a picture of her – she was wearing pajamas that my brother gave her a few years ago for Christmas. They’re fleece, and a pretty shade of turquoise, and I liked that they were functioning as a lounge outfit for her. But it was hard to get a good shot of her so I gave up. She was as pleasant as the last visit, but a little less clear of mind, if it makes any sense at all to describe her that way. We got up to take a walk, and then sat in the hallway on a bench that rocks. We rocked a little, and I put my arm around her, and we just quietly swayed together for a little while. I was on my way to my root canal, so I wanted to brush my teeth. I used her bathroom to do that, and when I came back down the hall, she was gone. I found her in the lobby, chatting with a gentleman friend on a couch. I kissed her goodbye and scooted away while they resumed their conversation.

Conference and Christmas party

I saw Mom twice last week – on Wednesday, before a care conference, and on Friday, for the annual Christmas party at the Alz center. I’ve been carrying the notes around from the conference for almost a week but at the moment can’t find them. I do recall that Mom had gained another 4 pounds in the last quarter, so she’s up to about 180. They consider her weight to be just fine. She eats ice cream at every meal, which was started while she was losing weight, and which is being continued because it’s a sure source of calories – Mom never skips ice cream. She eats 75-100 percent of her meals, so she’s doing pretty well with eating. The dietary director told me that just that morning, she had had trouble convincing Mom to sit down to eat breakfast. So that can still be a problem. Every time I’m around for a meal, Mom seems to enjoy the chance to eat.

Her health is as good as it has been for awhile. No cold, no stitches, no foot problems, no skin infections. She most recently had treatment for a rash on her thighs. I was told recently that it is cleared up. She has a short attention span and isn’t super responsive to cues during activities. But she remains very social, especially enjoying one-on-one contact. She still hangs out with Mr. R, and also sometimes spends time with Mr. Beard. One of the staff members said her waning interest in Mr. R might be related to her shortening attention span. Makes sense.

I went to see Mom before the conference, and I noticed that her hair was a little greasy. I just sat with her briefly until it was time to attend the conference. I also noticed her breath was very bad. During the conference, I mentioned that I am worried that she never gets her teeth brushed. I feel fairly certain she fights any attempts to brush her teeth. I asked if I should give it a try, but the staff members said it is the duty of the aides to get that done every day, or to at least make a concerted effort to clean Mom’s mouth. But I am welcome to try if I want to. I worry that she will end up having her teeth pulled – I see signs of that in other residents sometimes, and I know Mom’s teeth were starting to decay near the gum line in the early days of her illness. Her last visit to her regular dentist was to get some fillings. The social worker told me there is a new contract with a new dentist, and that this dentist is less inclined than the last to resort to extractions. I imagine I’ll get an update on her teeth at the next conference. I was also told Mom was on the beautician’s list that day – lots of residents were being spruced up for the party.

On Friday, I left my office after our holiday potluck to attend the party at the center – my third Alz center Christmas party. Sure enough, Mom’s hair was clean and I could tell it had been trimmed, too. The party was in full swing when I arrived, with Elvis singing in the program area and residents seated in a circle all around him. Staffers dressed as Santa and Mrs. Claus sat me down right away to take a picture of me with Mom, part of the tradition. I’ll get that picture in the mail. An activities staffer handed me a painted plastic ornament made for family members during an art class. And shortly after I arrived, it was time for the door prize drawing. I won the first prize – a basket planter with white flowers. Very nice – I never win that stuff. Mom was sitting next to Mr. R, and on her other side was a longtime resident. I asked her if she could move over but I’m not sure she understood. So I wedged a folding chair in between her and Mom, and I sat facing Mom much of the time. My favorite Elvis impersonator started with Elvis tunes and eventually moved on to Christmas music.

This version of Elvis was a little less flashy. Still a great performer for this venue.

For one song, Mom and I got up to dance. She didn’t move from the spot in front of her chair, and she waved her arms around as if she were conducting. I faced her and danced, sometimes holding one of her hands. She had a beanie baby toy that she enjoyed holding onto – a sloth named “Slowpoke.” I assume those were distributed to residents before I arrived. Either that or Mom had stolen it from someone else… Mr. R and I also danced to one Elvis number. He was in a pretty good mood – good, not great. I ignored him for the most part and focused on Mom. She was in very good spirits, which was a relief because sometimes crowds and loud noise can be difficult for her to endure for a long time. I got her a few snacks early on, and about an hour later, an activities staffer handed Mr. R a plate with a ham salad sandwich and some cookies on it. Without pause, he handed it to Mom. And she began to eat. In the short video I shot, you can see the sloth toy on her lap next to the plate. And this also shows that she retains enthusiasm for eating – especially sweets. She’s got one in each hand. At the very end, the plate slipped off her lap. But no food was lost.

As the party was winding down, I could see signs of restlessness in Mom. She stood up and seemed to want to start walking toward the lobby. I think she had probably had enough of the noise and hubbub. Mr. R made some comment about her being with another man, and he stayed seated. Which was fine with me. I assured him Mom had been with me the whole time. And that I am not a man, but her daughter. He stood, and he and Mom began walking away, toward a couch instead of toward the lobby. And I thought that was a good time to make my own escape. I thanked the staff on the way out, and picked up my flower prize at the front desk.

‘I want my mommy’

That headline – that’s not me talking. Mom said those words today. I went to visit her this morning after a doctor’s appointment. I hoped to also see a support group friend because I heard last night that her husband wasn’t doing well. I found out this morning that he died last night. It is a shock. The last time I saw him, 10 days or so ago, he was all smiles while his wife fed him.

I found Mom walking in the program area with a man I had never met before. I hugged Mom, and she seemed to enjoy being greeted by me. And her gentleman friend held out his hand and introduced himself to me. I told him that I am Emily, Bonnie’s daughter, and he seemed to comprehend what I said. I’ll call him Mr. Beard. He has a beard and he was wearing an Ohio State sweatshirt. I liked him right away. I wondered where Mr. R was and at the same time I was glad he wasn’t around. The door to his room was closed.

Mom, Mr. Beard and I walked around together briefly. Mom seemed just a little bit fussy. She chattered on, but she was knitting her brow from time to time. She didn’t seem quite as content as she has in the past. We sat together on a couch for a short while. I noticed with dismay that it smelled like urine. That’s two of four couches that have that smell. I sat in a chair next to the end of the couch that Mom was sitting on. I touched her hair. It was pretty clean and more curly than usual. She was restless, so we got up again. Mom took my hand and we started walking. I told Mr. Beard I would bring her back, and also said he could come along. He stayed put. He seems laid back and good-natured.

Mom and I walked toward the lobby and in the hallway, she stopped and said, out of the blue, “I want to go home. I want my mommy.” I turned and pulled her toward me and held her in a hug. I held on tight, and for several seconds. I was offering comfort and at the same time hoped I was distracting her from her thoughts. “You seem so happy here,” I said. She seemed to enjoy the hug. We walked into the lobby, where a DVD was playing on the TV. A woman on the TV sang, “The bells are ringing for me and my gal. The birds are singing for me and my gal. …” I don’t think it was Judy Garland, however. Mom stopped and conducted an imaginary orchestra in the air and tried to sing along. She had the rhythm and the sound right, but couldn’t muster the words. We walked down the hall, and I sang that chorus quietly a time or two, all the while holding her hand or stroking her back.

Mom hasn’t said she wants to go home in – well, it’s been so long that I don’t remember it. I frankly don’t know if she has said it at all at the Alz center. Even in assisted living, though she initially complained that she was living in a cave, she showed no residual fondness for the apartment she had just vacated. I assume and fervently hope her desire for home today was a fleeting and one-time thing and that she’ll never say it again. More important, I hope she’ll never feel that feeling. As far as she knows, she is home.

When we returned to the program area, Mom headed back to the stinky couch. She stretched out on it in true Bonnie fashion. I sat in a chair next to her head. I stroked her hair a little bit and she stretched out more completely, fully lying down. She began singing to herself, a song I didn’t recognize. She was entertaining herself. But she also seemed tired. It wasn’t long after breakfast, and I tend to think she feels sleepy after meals. I encouraged her to take a nap. I told her I had to get to work and kissed her goodbye. As I chatted briefly with another support group friend at a nearby table, I saw Mom talking quietly to herself, or maybe singing, while still lying on the couch. I’d like to think that was a sign that she was back to her content self, comfortable and safe in her own little world.

My first adult diaper change

After three relatively busy days of the long holiday weekend, I had decided that today, Sunday, would be a day of leisure, for the most part. I saved most of the laundry for today. And I wanted to take advantage of a day off to visit Mom. I have tended to think that visiting her in the morning is best. She seems to have a little more energy than she does after lunch. And I have had better luck lately finding her alone rather than with Mr. R if I show up in the morning.

Sure enough, she was sitting alone in the lobby when I arrived at about 11:25 a.m. Another resident was pushing a chair around and a woman was sound asleep on the couch. Mom sat in a distant chair by herself. I pulled up another chair and sat down, facing her. She smiled at me and started talking a little bit. I noticed something bunched up under her pants. I felt around a little bit and realized it was Mom’s diaper, pulled down almost to her left knee. I tried not to fret too much about it. We sat quietly, sometimes bobbing our heads to the jazz music playing on the sound system. I tried to hold Mom’s right hand but she kept it held in a clenched position for some reason. Her skin was cold to the touch but she didn’t complain about being cold. As we sat, Mom would stare off from time to time. At one point, she closed her eyes and I thought she might fall asleep. Her eyes opened suddenly and she said, “That was fun for her.” I thought to myself that she was saying that this visit was fun for her. I’ll never know for sure what she’s talking about so I tend to decide what I want to be going through her mind.

We sat together for about 25 minutes, and it was almost time for lunch. I encouraged Mom to stand up with me and walk to the program area so she could get lunch. She walked sort of awkwardly, what with her diaper hanging down her leg. A nurse greeted us in the hall. I told her Mom was losing her pants and she encouraged me to find someone to change her. I said I was going to try to take care of it if that was OK. “Sure, if you want to,” she said. “Look in the closet for her diapers.” Up until about now, I have always called Mom’s undergarments disposable underwear. I’m not sure why – I suppose I don’t like to think of her wearing diapers. And I certainly helped her change out of plenty of pairs of disposable underwear when she was still in assisted living, but also still able to use the toilet by herself most of the time. Now, though, Mom wears diapers that are attached just like baby diapers rather than pull-up disposable pants.

I coaxed Mom into her room. Knowing that she sometimes objects to being changed, I didn’t want to startle her by just yanking down her pants. I told her what I was going to do, and she seemed agreeable. I pulled down her pants and did yank on the diaper until it came off. It was heavy and wet. But I noticed that Mom’s pants were not wet, miraculously. I wondered if she had pulled on it to get the wetness away from her skin, poor thing. She stood with her pants around her ankles and I got a new diaper out of the closet and put it through her legs. And then I took about two minutes examining the sticky connectors because they weren’t, in fact, sticky. I pulled at them, trying to separate two pieces of plastic, convinced that I would have to do that to make the diapers stay on. Mom sat on her bed – and pulled the diaper out from under her – while I went into the bathroom and looked at the diaper in the trash to see how it had worked. It turns out the material on the connectors wasn’t sticky like adhesive, but effectively held when taped against the diaper material in the front. I stood Mom up and arranged it as well as I could and connected the back to the front as snugly as I could. And then I hiked up her pants and checked again that her pants were dry. She looked bunchy in the butt area but I didn’t want to risk making things worse by trying to reattach the diaper again. And then I washed my hands.

We went out to the program area and I encouraged Mom to sit in a chair at a table so she could eat her lunch. I put her bib on. The two ladies at the same table have been at the Alz center since Mom has, and one of them is not looking very good. Her head drooped severely and she seemed to slightly convulse from time to time. She was in a wheelchair after having spent most of the last two years using a walker. I had heard she has been having a rough time but haven’t seen her up close in awhile. I said hi to her but wasn’t sure that it registered.

I got Mom’s tray, poured her milk and cut up her pot roast. It was a Bonnie kind of meal – beef, small boiled potatoes and mixed vegetables. Instead of ice cream, she had a cup of vanilla pudding. Mom speared a potato with her fork and it dropped into her lap. While she picked it up and ate it, I used the fork to cut up her potatoes, too. She took a few bites before turning to dessert, sipping on her pudding cup. Seeing that she was nicely focused on her food, I decided to leave. I noticed as I walked away that she had started picking up her food with her hands. But she was eating, so it didn’t matter.

Third-wheel Thanksgiving

I attended my third Thanksgiving dinner at the Alz center last Thursday, a week before the actual holiday. When I arrived, Mom was sort of hard to find. She and Mr. R were walking around in the program area. The place was crowded with extra tables and chairs and lots of extra family members. One resident had 12 guests for dinner. I was on my own this year because Patrick had a class.

It was a little early, so once I located Mom, all three of us took a walk to the lobby and back. A table had been set with two spaces for me and Mom, but since Mr. R was with us and had no family visiting for the dinner, we relocated to another table and sat together. Mr. R’s tray arrived first. I had neglected to pick up my menu card at the front desk so I had to run to the lobby to get it. I indicated what I wanted to eat on the card and then gave it, along with Mom’s regular meal ticket, to the activities director, who was serving our area for the event. Before we were even served, Mr. R had finished most of his meal. I have noticed that when he finishes eating, he wipes the entire plate and his utensils clean with a napkin. Just a little quirk. Mom is the exact opposite, almost always leaving a mess behind.

Two plates came back for Mom and me. Mine was missing gravy and stuffing. I wasn’t about to complain, however. The event is a bit chaotic and I could do without stuffing and gravy to avoid sending the activities director back to the food tables. Mom used her spoon to take really big bites of sweet potatoes – a food I never knew her to like. We didn’t have sweet potatoes at our family Thanksgiving meals, as far as I can recall. She also used her fork from time to time, but also used her hands to pick up pieces of turkey along with a blob of mashed potatoes. Last year, she was having a lot of trouble figuring out how to use her utensils. Her varying abilities associated with eating have been very interesting to me – compared to six months ago, she is much more focused now, can sit and eat and use her utensils. She is not so restless anymore, which I think has made the difference.

While we were eating, Mom turned to Mr. R and touched his hand and said, “I love you.” She then turned to me, touched my hand, and said, “I love you.” “I love you, too,” I replied. This was a sweet moment. I like to see her experience the pleasure of my company even if it is just a fleeting thing. I finished eating. Mom also seemed to be finished before she had cleaned her plate. She became a little confused about her drinks, but managed a few swallows of milk. And then suddenly, Mom stood up, and so did Mr. R. I encouraged her to sit back down to have some pie, but she couldn’t be convinced to come back to the table.

They started walking around the crowded room. I stubbornly sat alone at my table, waiting for the pie cart to come around. The social worker was delivering the pies in our area. She also tried to lure Mom back to the table for dessert, to no avail. She gave me a piece of cherry pie, and I sat and ate it, pretty quickly. I noticed Mom had walked over to chat briefly with one of the younger gentlemen at the center. He was sitting alone, having a second plate of food. Mr. R went to retrieve her, and I could tell he was a little grumpy. I was a little grumpy, too, about him interfering with my Thanksgiving dinner with Mom – a completely irrational emotion, but an emotion I can’t deny. I know his companionship is good for Mom. But sometimes I simply don’t want to deal with him. I think the feeling is mutual. Though when I finally got up to say goodbye to Mom for the evening, I kissed her and gave Mr. R a pat on the arm, and he smiled.

Research report

Because I am a science writer by profession, I get to attend an annual meeting about science to both promote research being presented by faculty at my institution, as well as to just soak up some of the new knowledge in a field related to the research I cover. I spent a few days at the Society for Neuroscience meeting in Washington, D.C., and I attended a symposium on Alzheimer’s treatments that have been tested in animals. I was sad to see that Alzheimer’s didn’t make it on the list of topics to be discussed in a press conference. I don’t know if that’s because there weren’t enough good presentations at the meeting to assemble for a meaningful news conference or because planners don’t really care about the disease. (Why would I even think that? I am just suspicious that people – even those close to the science – prefer to ignore the massive problem of Alzheimer’s.) Autism got a press conference, and so did pain, and depression and schizophrenia, and stress. The aging brain was discussed, but in the context of decision-making and sleep, not disease. I’m hypersensitive, of course, and biased, but I admit I was bummed that such a major disorder wasn’t worthy of some media attention at this enormous meeting.

At this symposium, I got a hint as to why that might be. The doctor who runs my support group often seems pretty pessimistic about the state of research into treatment. And based on these eight presentations I heard, I think he is right. There is still so much that is not known about the cause of Alzheimer’s, let alone how one might approach a single type of treatment.

Here are summaries of what the researchers were saying:

* A German biomedical company has developed a compound that targets multiple dysfunctions rather than a single problem. In tests on mice and rats, the animals given the drug performed better on memory functions. A number of genes related to brain-cell communication are activated when the drug is present.

* Boston University researchers are testing the injection of a gene directly into an area of the brain associated with memory. After injection into animals, new brain cells grew and the amount of plaques in the brains declined.

* A UCLA researcher theorizes that the use of non-steroidal anti-inflammatory drugs (ie ibuprofen) and dietary fatty acids might lower the amount of amyloid plaques in the brain. Tests in mice suggest this is so. But the response to those medicines appears to depend on whether the person taking these products has a genetic-based higher risk for the disease. So without a test for that genetic risk, there is no way to know if taking NSAIDs or fatty acids has potential to protect one’s brain.

* Columbia researchers are investigating proteins in the brain called histones, and specifically compounds that activate them, as a treatment target. They put a drug targeting these activators into the brains of mice. The drug improved memory behavior and cell communication in the brains of two mouse models.

* A University of Illinois at Chicago scientist talked about the use of environmental enrichment to improve production of brain cells. Environmental enrichment in animals essentially means housing mice in an environment that offers visual, motor, cognitive and sensory stimuli. Mice in these environments, when compared to mice in standard animal housing, had fewer plaques in their brains and had higher levels of a protein that supports survival of brain cells.

* Researchers at the Salk Institute have developed a molecule that, even though it’s not designed to hit a specific target, is meant to offer protection for the brain in a variety of ways. Animals given this experimental drug in their food did better on spatial learning tasks – even mice that are a model for Alzheimer’s. Their brain tissue also showed signs of increased production of neurons and more complex branching structures for communication among cells.

* Another German company has developed a drug that, in several tests on mice and rats, showed improvements in memory as well as more communication across synapses in the brain.

* A graduate student from Central Michigan University reported on her research on the use of stem cells from bone marrow as an Alzheimer’s treatment. The cells were transplanted into two areas of the brain in mice. Treated mice did better than untreated mice in some behavior tests, but not all. But the treated animals did have fewer plaques in their brains and less inflammation.

So. Lots of theories. Some apparent progress. But there’s still a long way to go, with all of these. When one speaker didn’t show up and the moderator wanted to fill time with a general discussion, it was interesting to hear what these scientists had to say. There’s no biomarker identified for Alzheimer’s, so it’s hard to validate treatments – or even benign nutrient cocktails that might be beneficial. It’s difficult enough to get a drug approved by the FDA, but a drug designed to act on multiple targets would be even more complicated to move through the federal process. And if, anecdotally, a researcher sees five out of 10 people respond to a nutritional approach, does it mean anything?

Finally, this provoked a comment that took the big picture into account. “The placebo effect can be powerful and can influence the body’s ability to fight off disease,” an audience member said. “In a compassionate care setting, where lots of Alzheimer’s patients come from, they’re willing to try anything. The FDA has become very minor. Caregivers look instead at a risk-benefit ratio.”

He was saying what I had been thinking: Yes, five people responding to something isn’t scientifically valid, necessarily, but it seems promising, and what is the harm in trying it in a patient already experiencing memory loss, confusion and other symptoms? Caregivers can feel very desperate – I know this firsthand – and don’t take long to reach a point at which they (we) are willing to try anything.

Small surprises

I visited Mom last Friday, arriving about half an hour before lunch. There she was, walking around the lobby just as I walked in the door. She was wearing a James Taylor concert T-shirt. I remember that concert. I attended it with Mom and my mother-in-law many summers ago at an outdoor venue here that has since closed. Mom looked cute in that shirt. She was very affectionate, a little more than usual. We hugged hello. As we were continuing to greet each other, Mom said, in the midst of other less meaningful words, the name “Carmen.” That is the first name of one of her oldest friends. I imagine she hasn’t seen Carmen in a good five years. Later in the same visit, she said “Bino,” which is my dog’s name. The doctor who runs our support group often refers to Alzheimer’s as a failure of retrieval. The memories and knowledge are still in the brain, but the mechanism is no longer there for a person to locate the information. So Mom must have been having slightly better retrieval on this particular day.

We walked, hand in hand, to the program area, and then turned around and returned to the lobby. We sat next to each other on the couch. We held hands there, too, and Mom patted my hand – something I usually do to her. It was a motherly gesture. She said, at one point, “We should go to a movie.” This stunned me. She hasn’t said anything quite so direct in a very long time. I said there would probably be a movie showing sometime soon, and it was true – there was a movie on the activity schedule for later that day. I did tell her how much we used to enjoy going to movies. For a few years in a row, Patrick, Mom and I saw a movie on Christmas day together. The last one, I think, was “Juno,” which would have been 2007 – just a few months after Mom moved to assisted living. I recall that I took her alone to see “Dreamgirls,” which was released in 2006, and near the end of the movie, as the cast broke into song, Mom said, pretty loudly, “I am sick to death of this.” I think it’s sort of funny now, but at the time I was concerned that she was disturbing others. It was also a sign that Mom’s attention span had its limits. I wonder if it was also loud. She seems now to definitely not like being exposed to loud music or talking.

Mom also said, during our visit on the couch, “There are lots of things I’d like to do.” With this, I felt the burn of tears come up behind my eyes. This must be one of those days, I thought, when Mom is unusually with it. And it troubled me, because I never want her to be aware of all that she is missing. These things she said were fleeting, so I don’t think I have to worry very much. But it did surprise me to hear her speak in such distinctly clear sentences and to say things that suggested she was feeling unfulfilled. She was in a good mood, so maybe these were nothing more than passing thoughts that held no actual meaning for her. She was in a very good mood, in fact. At one point, she pulled my face to her and said, “I love you,” and kissed me on the lips. I thought for a moment she was mistaking me for Mr. R because the display of affection was just a little more assertive than usual. But then she sat back. I told her I love her, too.

When the lunch hour arrived, I took Mom to the program area and a volunteer and I got her set up for lunch. Sometimes she resists the instruction to sit, but I have found that if I pat the seat of the chair, she understands. I cut her open-faced turkey sandwich and watched to make sure she got started OK. And then I stepped away to chat briefly with the wife of a resident before I slipped away.

Two weeks, small changes

After seeing Mom in such good shape right before my trip, I let two weeks slip by before I could get to see her again. After my conference I took another out-of-town trip, to see friends in Chicago, and had some deadlines at work that prevented me from getting to the Alz center during the week. I arrived Sunday about half an hour before lunch. Mom was walking around in the program area. I went up to her and said “hi” enthusiastically and hugged her. She seemed to enjoy the greeting. I walked beside her and she took my hand. We walked toward the lobby. I noticed that as she spoke, she sometimes got hung up on a syllable: My-my-my or be-be-be at the beginning of a word. There is a chance she was tired, or maybe even just fooling around, but I took it as a potential change in her speaking ability – something I will watch for the next time I visit. She still chattered on in her typical way, telling stories and using her hands a lot, sometimes making motions as if she were fingering imaginary thread. It’s a weird little thing I’ve seen her do several times – I think of it as a hallucination, but that might be overstating what is really going on.

We sat in two chairs in the lobby and continued to chat. I told Mom I hadn’t seen her in awhile because I had been out of town. I tried to give her a thorough examination, checking her skin and touching her hair, looking for any bruises or bumps. She looked good. Her hair was clean. Her breath smelled pretty bad. I do worry about her teeth – I don’t know whether she is agreeable to having them brushed. She did have some food on her clothes, I assume from breakfast or a snack. Her black velour pants had flecks of crumbs in the lap area, and her blue shirt had a blob of some unrecognizable brown substance on the front. She was wearing a red fleece jacket, as well, reminding me that I need to swap out her summer clothes and replace them with her cold-weather wardrobe.

I saw the cart of trays heading to the program area, and I encouraged Mom to get up and walk with me so she could have lunch. I sat her at a table with a male resident and his wife, who sometimes comes to support group. Her husband is in his mid-60s and very advanced. Several of his brothers had Alzheimer’s, too. It is a sad story, and I think his wife has a lot of emotions percolating just under the surface. I cut Mom’s chicken and poured her milk, and put her bib on her. She used her fork properly for much of the meal. I chatted with the wife, who was feeding her husband. He just transitioned to pureed food a few weeks ago when he began having problems swallowing. Seeing that makes me wonder how Mom’s eating will change over time. For now, she’s doing great. She ate almost every bite of her chicken, mashed potatoes and carrots. She slurped at her ice cream cup. And then she ate her apple pie with her fingers. When it was clear that she was done, I took her tray away. That may have been a mistake. Mom reached for another woman’s plate then, and I told her it wasn’t hers. I moved the plate as far away as I could. But I could see Mom’s mood changing. She does not like to be corrected and apparently she doesn’t like to be told no, either. I asked her to get up with me and walk me to the lobby. She resisted but eventually got up.

We held hands and were walking toward the lobby when two aides came up to us from behind. “Can we take Bonnie with us? She’s wet,” one said. I hadn’t realized it, and I looked at Mom’s butt, and there was a big pee stain on her pants. “I didn’t realize,” I said. They knew I didn’t know. “Do you want to take a shower?” an aide said to Mom. “I don’t think so,” Mom said, in a brief moment of near lucidity. The two aides encouraged Mom to change directions and go with them, and I walked away. I could hear Mom protesting and imagined she was trying to put the brakes on any movement toward the shower room. I recalled that when we had first taken a walk, Mom was saying “peep-peep” from time to time. I wonder if she was saying she had to pee. Mom has been in disposable underwear for years now, really. But that was my first experience with her wetting herself through to her clothes. It made me a little bit sad.

Bad news, good news

I am out of town at a conference and thankfully about to head home. I got a call from the Alz center just minutes ago. Mom’s roommate passed away Sunday night. It is hitting me harder than I would have expected – possibly from the fact I am very tired. But also I feel so much for her daughter, who has been by her mom’s side virtually every day but a few since November, when she first showed signs that she might be nearing the end of her life. She held on for a long time, and so did her daughter. And she was such a dear, with probing eyes and a clear awareness, even without much language, of what was said to her.

And then there is Mom. She is doing really well, the social worker told me. And I have felt that way, too. I stopped in to see her before I left town on Friday. Sometimes a visit feels like a “must-do” task. That day, while I was caught up in the anxiety of getting ready to leave town, visiting Mom cheered me up. Her brightness improved my day immensely. I didn’t stay long at all. She was with Mr. R on a couch, and they held hands the whole time I was there. Mom talked and talked, and I told her a few things. And I hugged her and told her I’d see her in a few days.

Mom will get a new roommate, and I suspect she won’t even notice. But the social worker has a backup planned in case it doesn’t go well. And I got another piece of good news. A housekeeper at the center told me weeks ago that she had noticed that she hadn’t seen the box in Mom’s room that contained the ashes of her beloved cat, Petunia. I should have never left them there, but they had been part of her belongings for so long I hadn’t thought about it. The housekeeper found the box of ashes in one of the roommate’s drawers. Mystery solved. I will bring them home tomorrow.

I trust Mom’s roommate is at peace now, and for that I am happy. I know her daughter will miss her so much, and will now face a major life adjustment. I’m hopeful I can provide her some comfort along the way.