Archive for November, 2011|Monthly archive page
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.
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.
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.
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.