Archive for February, 2012|Monthly archive page

A gap in the joy

Oh, the irony. Less than a week after my post about the joy I can still find with Mom despite her disease, I get a shove in the face from her. Is it karma? Was I gloating about the joy? I didn’t intend to. I am very aware of my tendency to see the negative all around me, so I do feel lucky about any joy I experience with Mom and I’m relieved that our visits together usually go very smoothly. But maybe I overstated how things really are. Or maybe not. Actually, what happened today wasn’t exactly a disaster. Just a surprise, and, I hope, an isolated thing. But still, the timing is not lost on me.

I actually got a call Sunday evening from the Alz center, alerting me to the fact that Mom had knocked another resident to the floor. Mom was back to normal by the time the staff member called, and the other resident wasn’t hurt. But knowing this had happened, I wanted to check in on Mom today. I couldn’t go to the Alz center at the time of the call because I was out of town at the calling hours for my sister-in-law’s father, who passed away last week. (Interestingly, I have two in-laws, including this one, whose relatives have struggled with some sort of dementia. Boy do they have stories to tell, too, about the family chaos surrounding these illnesses.)

So this morning, I stopped in to the Alz center just to check on Mom, and to get the whole story. I stopped to talk to a nurse, who explained that the previous evening, Mom was sitting on a couch in the program area. Another resident, a tiny woman who uses a walker, was yelling – she was saying Mom! Mom! Mom! over and over. And apparently my mom was annoyed by this, so when the resident walked by, Mom just pushed her right over. I’ve seen Mom interact with residents many times in a much more cordial way, so I was sad to hear that she lashed out like that. But I know she can be agitated by loud noise. I wonder if the word “Mom” had anything to do with it. I still call Mom “Mom” sometimes, but I also call her “Bonnie” a lot, so she knows I am addressing her. “Mom” usually doesn’t mean much to her.

After I talked to the nurse, I caught up with Mom, who was walking hand-in-hand with Mr. R in the program area – yes, Mr. R, the first boyfriend. (I stopped in Friday to see Mom, too, and found her relaxing on a couch with a leg hoisted onto Mr. Beard’s lap. She was pretty out of it that day, just nodding off for a nap, so I didn’t stay long.) I took Mom’s other hand and we took a nice walk, down the hall, through the lobby, around to the skilled nursing side and then back again toward the lobby.

The calm before the storm: Mom and Mr. R reach the end of the hallway on the skilled-nursing side of the Alz center.

A nurse saw us at this point and said that Mom was scheduled to see the podiatrist today. And since I was there, she suggested that I go in with Mom to help her sit still as the doctor worked on her feet. I popped in to the room to make this arrangement with the podiatry staff, and by then Mom and Mr. R were halfway back to the program area. I encouraged them to turn around and come back with me toward the lobby. This was probably when Mom started to build up some frustration with me. She seemed a little resistant to being told where to walk. I know this about her – she does not like to be told what to do, ever.

We got into the treatment room and I patted the chair by the doctor, asking Mom to sit down. The social worker put another chair next to it so Mr. R could sit down next to Mom. Good strategy. They sat. I leaned over and hugged Mom as the doctor pulled off one of her socks, and she pushed me away. So I sat on the floor and massaged her leg, exerting pressure on her thighs so she would stay relatively still whenever she tried to pull her leg away. When the doctor began cutting away dead skin from the bottom of her foot, Mom began to complain more vigorously, and she reached down, placed her hand on my face and pushed my head away with a decent amount of force. My glasses smudged after being forced up against my skin. So then I just put my hands on Mom’s arms so she couldn’t do that again. I felt embarrassed, because there were several people in the room who saw her do this. But better me than them, I suppose.

Eventually, the doctor switched feet, and as he cut Mom’s toenails, she began to scream. She was not hurt; she was just mad. I explained to him that this was her method of protesting and that it didn’t mean he was hurting her. He did just a little trimming off the bottom of this foot, and Mom kept talking angrily. Poor thing, she kept up a steady stream of complaints, but the words she said didn’t make sense. She was getting her point across, however. And then she said, “I’ll be a goddamned son of a bill.” And I stifled any urge to laugh. We finally got her socks back on her and she stood up and paced around the room, not sure what to do. She took my hand at one point. The doctor began working on Mr. R’s feet, and he sat patiently. Mom and I went out to the lobby, and I suggested she find a couch. Which she did. And she reclined immediately. I imagined she was tuckered out from the stress. “It’s the first time,” she said. “I know,” I said. “I’m sorry I made you mad.” She seemed just a little regretful, or maybe still mad, I don’t know. I like to imagine I know what is going through her mind, but of course I don’t really know. I told her it was OK. That she did a great job. I asked her if I could kiss her goodbye, and she held up her face so I could give her a quick peck. And then I left, with hopes I was immediately forgotten.

Can there be joy with Alzheimer’s? I say yes

The Well Blog in the New York Times recently featured an essay about lessons the author has learned from his grandmother, JoAnn, since she was diagnosed with Alzheimer’s. Some excerpts:

“Through the haze of our grief, my grandfather Alfred and I began noticing that, along with her memories, JoAnn’s grudges, hurt feelings, worries and regrets were disappearing. In fact, within a year, she seemed happier than ever, more present and at peace. …

“So often, I hear people say they’d rather die than get Alzheimer’s. This is, in part, because they believe the disease will force them to abandon themselves to oblivion. But my grandmother showed me that we are more than the sum of our memories. …”

I wouldn’t say that I agree with everything the essayist, Robert Leleux, had to say in his post. But I have seen the same thing in my mother: She is at peace now, perhaps for the first time in her life. She and my aunt had a complicated sibling relationship as kids. Their parents were alcoholics. Mom, too, struggled with alcohol and depression. She spent most of her professional life unsatisfied. And she was a single mother of three kids.

While there is nothing good about this disease, the fact that she can navigate it from a peaceful place has been a comfort to me and, I hope, for her, too. But Leleux’s piece has provoked some pretty angry comments. Many take issue with the title: “Finding Joy in Alzheimer’s.” Some are offended by the very suggestion that there can be joy associated with Alzheimer’s. I don’t deny them their experiences. Mom – and I – have endured plenty of misery. But having this blog has encouraged me to regularly reflect on my relationship with Mom, and that might be part of the reason that I can also find peace with this part of her life, and mine, as well. I read all 110 or so comments before posting my own:

I am one who has experienced joy with my mother since she was diagnosed with Alzheimer’s in 2005. It makes me sad that there are those who seem to begrudge us our joy. Believe me, I know I am lucky to experience joyful moments with her. They are rare, but occur more often now that she is settled into her anxiety-free life in a nursing home for dementia patients. Mom is obviously very unlucky. I don’t think anyone who can associate a tad of joy with Alzheimer’s is suggesting that this isn’t also the worst possible way for our loved ones to end their lives. But my mom, whose life was fraught with a variety of difficulties, is now more affectionate and loving than she has ever been. She tells me she loves me and that I am beautiful. Every time she says this, I say, “I take after you.” She doesn’t understand, but these affirming exchanges give her some joy, too. She doesn’t know who I am, but our companionship, and her sense that I am on her side no matter what, give her pleasure. Her smiles and laughter, her expressions of satisfaction while eating ice cream, her hand holding mine – these are simple things that make us both feel good. I would wish these same opportunities for joy to all caregivers of people with Alzheimer’s (and the patients, too, of course), but I know that is not the reality. Many caregivers’ and Alzheimer’s patients’ experiences are nothing but miserable, and for that I am sorry.

I doubt my comment will make anyone who is miserable feel better, but I thought the points were worth making.

Research report on aging

I am at the American Association for the Advancement of Science meeting in Vancouver, Canada, sitting in on a session about aging. The first presentation provided an overview of Alzheimer’s disease, as well as some insights into one area of treatment-related research. There is one session dedicated completely to Alzheimer’s at this meeting, but it’s on Monday, the day I travel back to Ohio, so I will miss it. This is a giant meeting about all types of science, so I’m not surprised there aren’t more presentations about the disease here.

The presenter was Robert Vassar of Northwestern University. Because this session is partly about the societal effects of aging, he gave an overview. In case you are not familiar with the latest statistics: 5.4 million Americans currently have Alzheimer’s, and experts estimate that about 13 million Americans will have the disease by 2050. Currently, health care costs associated with Alzheimer’s stand at about $183 billion per year. If therapies that can alter the disease process aren’t discovered soon, Vassar said, Alzheimer’s “threatens to bankrupt our national economy.”

Vassar’s research concentrates on one of the enzymes that allows for the release of amyloid beta – little pieces of protein – in the brain. The presence of amyloid beta plaques in the brain is a hallmark of Alzheimer’s, and though no one knows for sure, it’s believed that these plaques contribute to the disease rather than form as a consequence of the disease. There are two known partner enzymes that allow for the release of these protein chunks, and Vassar is focused on beta secretase. The thought is that if one of these enzymes were prohibited from carrying out its function in the brain (releasing the protein pieces), the resulting reduction in free-floating amyloid beta in the brain could in turn prevent development of the disease. (There is also a school of thought that tau tangles cause Alzheimer’s, but Vassar advanced the theory that the toxic nature of amyloid beta plaques leads to the presence of tau tangles, which scientists now believe can transfer from one brain cell to another.)

As part of this pursuit, Vassar and colleagues genetically deleted this enzyme in a mouse model and, at first glance, these mice appeared to remain normal. They were still fertile. Their tissues also looked normal. This is important, because even when scientists find what appears to be a clear target for a new drug, they have to find out whether using a drug to delete that target from the body would have consequences far worse than fixing the disease.

When these mice were crossed with mice that were altered to develop amyloid beta plaques in their brains, the formerly diseased mice were rescued from the worst effects of those plaques: Their memory improved so much that they resembled normal mice. These findings were a “green light” to go forward with plans to eliminate the beta secretase enzyme as a treatment strategy.

But when Vassar took a closer look at the mice who lacked the enzyme, he discovered that they had a number of mild neurological problems – bad performance on memory tests concerning time and space, hyperactivity, a loss of myelin around their nerve cells and even seizures. Despite all this, they could still function pretty well. He and colleagues also looked at how their brain cells communicate with each other, and saw that they had some faulty wiring in a specific area of the brain.

Vassar didn’t call any of these findings a “red light,” but instead called them reasons to be cautious in moving forward with efforts to target this enzyme as a treatment option for Alzheimer’s. It is probable that the enzyme he is targeting has other functions that remain unknown. “We need more research to understand normal functions of drug targets because it’s critical for determining the success of future disease-modifying treatments and for minimizing side effects,” he said.

He also said that among the research efforts focused on treatments that target the amyloid plaques, the furthest along are compounds that bind to amyloid beta and help remove it from the brain. Other research groups also targeting the beta secretase enzyme as well as the gamma secretase enzyme, which has a similar function, have experimental drugs in clinical trials. He also talked about the recent Case Western Reserve University research that found that a skin cancer drug dramatically reduced amyloid beta plaques in the brains of mice; the drug activates a set of genes to improve the clearance of the protein pieces away.

After the presentation, I thanked Dr. Vassar for doing this work. I wish I could personally thank all researchers who care about this population enough to devote their careers to the science behind the disease.

Faces of change

I had lunch with Mom today – an Alz center Valentine’s Day family event. She was very peppy and funny. We had pasta with red sauce, steamed vegetables, salad, a breadstick and red velvet cake with cream cheese frosting. Mom also had ice cream. She ate everything but her salad – mostly using her hands. At one point, she said, “I’m a crazy lady.” She said lots of funny things, made funny faces and was having a good day. Which meant it was a good day for me, too. When we were done eating, she started reaching for food on the tray belonging to a woman resident sitting across from us. So we took a little walk and I settled her onto a couch, anticipating that she might need a nap. And I needed to return to work.

I took her picture, thinking it has been awhile. And she was full of smiles. Recently looking back at old posts, I came across a post from my first Valentine’s Day lunch with Mom in 2010. I took her picture that day, too, and it sticks in my memory. Mom looked pretty robust back then. She had gained weight, enjoying the Alz center’s large meals and steady stream of snacks. Her color was better. She was still interested in lipstick. Her hair was a mess, unfortunately, because I hadn’t set her up yet for regular appointments with the beautician. Her expression seemed a little timid. She wasn’t as sick then, and looking at the photo, I wonder if she wasn’t as content as I might have imagined she was.

Mom in 2010 - our first Valentine's Day lunch together at the Alz center. She looks sleepy, I think.

Mom today. I think she looks older than she did two years ago - more wrinkles, a little drawn - but also younger, with such a carefree smile.

Night anxiety

For years, my anxiety dreams involved school. I would dream that I started a graduate program, attended classes and behaved like a normal student until finals week. And then I would skip all the exams and refuse to write papers. And then a new term would start and I would repeat this pattern. Sometimes I dream that I have returned to my elementary school to pick up the graduate school transcript, but I never see the GPA. This is very unlike the real me in school. I was always worried about grades. I was very interested in being an achiever. I wouldn’t have ever considered skipping a test.

Lately, my dreams have changed. Several times recently, I have dreamed that Mom voluntarily left her nursing home and moved back into my childhood home. In the dream, this doesn’t mean she no longer has Alzheimer’s disease. It just means she is willful about choosing her environment. So in this dream, I have anxiety about how Mom is surviving in the house. I have anxiety when I see a car parked in front of the house, or when I do NOT see it parked there, meaning she is out for a drive. I sometimes experience what feels like a dream within a dream: I go to the nursing home to talk to the staff about moving Mom back in, explaining to them that I have been dreaming about her potential exit and desire to move back into that house. But my discussion with the nursing home staff is also part of the dream.

Last night, the dream included two new sources of anxiety: an overflowing mailbox outside the house, and an effort to see how close I could get to a snake without letting it bite me. This second element was a source of actual fear and struck me as totally bizarre: it featured a childhood friend who lived down the street from me who chased me up the road toward my house with a snake in her hand. Even though she had a hold of it, she couldn’t stop it from trying to bite me. And then when I finally got to my house, I encountered the mailbox, stuffed with miscellaneous mail that I assume – now, awake, looking back – is Mom’s mail in my dream.

I wouldn’t think much of it – I have had anxiety dreams all of my adult life, really – except that I am waking up so tired from these dreams. And I get the sense that I am thrashing around in bed. I routinely find that I have wrapped the comforter around me, taking the covers off of Patrick in the process. I inevitably find one of my pillows on the floor – every. single. morning. And my short hair is messier than usual these days when I get up, looking as if I have spent the entire night moving my head around and around. I probably got to sleep by 10 p.m. last night and woke to Patrick’s alarm at 6:30 this morning. Plenty of sleep. But I felt like a zombie. And I did not want to get up.

I interpret these as anxiety dreams because I sense a feeling of breathlessness for the duration. There is no nostalgia about the house in the dream, nor in my waking life. I don’t miss my childhood home. We didn’t take great care of it, and my childhood was not ideal. Perfectly tolerable, but marked by many difficulties. So I don’t see it as some return to a past that I cherish. Even the Mom I knew over the years of living in that house is not my favorite Bonnie. I had a much better appreciation of her after I spent some time away from her in college. We moved out of the house when I graduated from high school, and I recall no sadness about leaving it behind. Sometimes I drive by it now and wonder what it looks like inside. But that’s the extent of my feelings: curiosity.

I don’t worry as much about Mom as I used to, but she is on my mind so much of the time. I don’t know much about dream analysis, so I can’t try with any real knowledge to interpret what these new dreams mean. I guess it is some kind of processing of my thoughts. Ironically, Mom was interested in dreams. I have discovered, among the things of hers that I have stored in my basement, stacks of notebooks that I assume she kept by her bed. They contain notes that I believe she jotted down in the middle of the night or in the morning as a way to capture the essence of a fresh dream as completely as possible. Someday maybe I’ll study those notes. I wonder what she would think of my dreams about her.

Asleep, again

Mom seems to be sleeping more, though of course that might not be the case. I might just be visiting more often during her typical nap times. For example, I popped in yesterday to see her after my haircut because I was in the Alz center neighborhood. It was about 1:20, and therefore after lunch – not an uncommon time to find her at rest. She was sound asleep on a couch in the program area. Her neck looked uncomfortable, bent severely forward because the back of her head was pushed up against the arm of the couch. But her deep breathing indicated she was deeply asleep, and I didn’t want to startle her or disturb her. I sat next to her for a couple of minutes and then left.

Last week, however, I found her asleep on a couch before lunch. I showed up at about 11:30 specifically so I could visit with her and then say goodbye after setting her up with her lunch tray. When I saw that she was sleeping, I thought perhaps my visit would be cut short. I ended up being quite wrong about that.

She woke up while I was sitting next to her, and she began to talk. She seemed very pleasant. She sat up and we carried on our usual nonconversation conversation. I could see that her diaper was in a bunch around her knees, and I thought to myself that I probably ought to change her. Her newer gentleman friend Mr. Beard came over to sit near us. He was shirtless. He moves in slow motion, sort of, and is pretty passive, so he didn’t really interfere with our visit but just sat in a nearby chair. The lunch trays arrived a little earlier than usual, and a volunteer came over to us and told me she had Mom’s lunch tray ready to go. She placed it on a table. I coaxed Mom over toward the table and patted the seat so she would sit down. “See if you can get her to eat. She didn’t eat her breakfast today,” the volunteer said. OK, I thought, I guess I will stay awhile. I put a bib on Mom and poured her milk and put her fork in the logical place for her to pick it up if she were so inclined. She sipped her ice cream cup, and concentrated on it for quite awhile. She eventually did eat just about all of her food, too, which was pulled pork with gravy, roasted potatoes and a vegetable that I can’t recall, plus mandarin oranges. She mostly used her hands. Surprisingly, she picked up the bottom part of her bib to use it as a napkin to wipe her mouth, more than once. I haven’t seen her do that for years.

When she was finished, I cleared her tray away. Mom started reaching for other full trays on the table, set there as staff went to wake up or locate residents who hadn’t yet taken a seat to eat. I encouraged Mom to get up with me and walk toward her room so I could change her diaper. On the way, we passed her aide, who was still delivering lunch trays and helping people eat. I told her I’d be happy to change Mom, but I could see it made her uncomfortable to allow for that. I was not judging her or rushing her in any way – she was obviously busy with lunch, and I told her I had changed Mom before. But she just couldn’t let me do it. I understood. So I accompanied them both into the shower room. The aide started talking to Mom in a persuasive way, and telling her what she’d be doing. She pulled down Mom’s pants and removed her sagging diaper. Mom objected. The aide asked Mom to sit on the toilet. “Please, Bonnie. Please?” she said. Mom finally sat down, but throughout most of this, she was saying, “No. I don’t want this. No.” I stood across the small room to stay out of the way. Mom stood, and the aide began to wash her with a wet towel. “I’m just going to wash you really quickly,” she explained. Mom kept trying to reach down to pull up her pants. So the aide asked me to help. I held Mom’s arms in front of her, which she hated. “L is taking care of you,” I said. “You are so lucky to have so many people who care about you.” Mom clearly wasn’t convinced. The aide dried her with another towel and quickly suited Mom up in a new diaper and pulled up her pants. “She didn’t scream this time,” the aide said. From the other side of the door, I have heard Mom scream in distress while being changed. But it was nice to see in person that she doesn’t put up much of a physical fight – just a prolonged verbal protest. And it made me think that perhaps my presence really can help Mom feel calm, or at least calmer than she’d be if I weren’t there when she is undergoing stress.

We left the shower room, and Mom put her arm on her aide’s shoulder. Making up, perhaps. But she still retained a little grumpiness from the bad experience. We walked down the hall together toward the lobby. I praised her for doing a good job. I was glad to see that process firsthand, though I still wished I could have done it myself so the aide could have tended to lunch. However, I wouldn’t have done all the thorough cleaning of Mom that she did, so in that respect it was good that she prevailed. Mom found a couch in the lobby and immediately stretched out fully, perhaps ready for another, more satisfying nap with a full belly and a clean and properly fitted diaper. I kissed her goodbye and noticed when I left that my quick pre-lunch visit had stretched to an hour and 15 minutes. Which was fine.

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