Archive for January, 2013|Monthly archive page

Many moods

I spent more than an hour with Mom a week ago, visiting her on the MLK holiday. I arrived about half an hour before lunch, thinking I would slip away when she started eating. It just didn’t quite work out that way. And it was fun to be with her, but also complicated at times.

She was pleasant enough when I arrived. We walked around the program area, holding hands most of the time. But she showed just tiny hints of distress from time to time. We got stuck in a hallway, looking out at the snowy courtyard. I talked about how cold it was, but that this outdoor area would be a nice place to walk around once the weather is warm again. “I want to go home,” she said. She really never says this. And because so much of what she says makes no sense, I didn’t take this seriously as a comment that actually meant she wanted to be somewhere else. “This is home,” I said, and we started walking again.

I think she might have been tired. And at the same time, having a restless day. Because I worried that she wasn’t having a good day, I started rubbing her back as we walked. She wriggled in the opposite direction and pushed my hand away. No big deal, I thought, and we just walked some more. I followed her lead from then on, holding hands only when she took mine. We found ourselves in that same hallway, looking at the courtyard again. This time, Mom said, “I love you.” And gave me a big smooch.

Since it was almost lunchtime, I coaxed Mom to settle into a seat at a table. I got a bib and wrapped it around her neck and then went looking for her tray in the cart. I hadn’t been there at mealtime in quite awhile, but in the past Mom’s tray was always on the first of two carts that arrive at noon. A nurse told me where to look, and I shifted a few trays, spilling some juice on one of them. Which made me flustered. I took it out and got a bib to mop up the spill. A volunteer who works lunches three times a week helped me clean it up. I sensed she was just a little irritated. I then pulled some trays out and put them on top of the cart in my continued pursuit of her tray. The volunteer told me it was confusing to her to have those trays put on top of the cart. I decided to give up.

In the meantime, Mom had gotten up and started walking around. I coaxed her back to her seat, again. The nurse sensed my frustration and gave me a tray for Mom, swapping with another resident who would receive Mom’s tray. I appreciated that, because I was beginning to feel like a bother, when I was trying to help. This is a common feeling I get when I try to help around the Alz center, even after 3 1/2 years.

The main dish was tuna-noodle casserole – something that the old Mom would never have eaten. But at this meal, Mom dug in, with her fingers. I sat back and watched her, and told her she was doing an excellent job. She ate every bite of that casserole, and also finished her steamed vegetables. She took a few bites of her bread. I offered her some pistachio ice cream, but she wasn’t particularly interested. She enjoyed a big swig of water. I cleaned her hands with her bib – she laughed when I did this; I wonder if it tickled. And then we set off for another walk.

We wandered close to a couch where Mr. Beard, her sometime boyfriend, was deeply asleep. She sat for a moment in a nearby chair, and then stood again. I encouraged her to find a place to lie down, thinking she could use a nap. Once she settled onto a couch, her knees bent and her head resting on the arm, I kissed her goodbye and said, “Sweet dreams.”

Four years of blogging

Today is my blogiversary. Four years. Oddly, that doesn’t seem like such a long time now that I am in my late 40s. But at the same time, it means the number of years of my life spent looking after Mom is adding up, and, considering how physically healthy she seems to be, will likely exceed 10. That’s plenty of time to be a caregiver, but it pales in comparison to some people I know – especially two older gentlemen I met in support group who have cared for wives with Alzheimer’s for 13 years and 16 years.

Four years would feel like a very long time if I had been miserable for the duration. Misery led me to begin the blog. It functioned as a journal for me to get difficult emotions off my chest. I began blogging and therapy at the same time, in fact, in January 2009, when I was at a very low point. Mom was in assisted living, so I knew she was safe. And that was an enormous relief. But she also needed me. For all sorts of things. I was her liaison to the rest of her shrinking world, it seemed – to cat food and litter, to clean underwear, to her neurology clinic appointments. Friends did visit her with regularity back then, and she had friends in assisted living. But from my perspective, Mom’s expressions of any kind of need always fell on me.

So while I struggled with both the workload and the conflicting emotions – I was sad to see her confused and losing her memory, but also wished the decline would accelerate so she would be unaware of her own problems – I also reflected through this blog on what it might be like for her. Seems to make sense, I’m sure. But I was so absorbed with my own experience that it took me some time to think of her as more than a needy patient who was becoming more childlike by the day. And in defense of caregivers, it’s pretty easy to become self-absorbed. Caregiving is difficult, and time-consuming, and frustrating, and heartbreaking, and often feels like a very lonely pursuit. But for Mom’s sake, and for my own, I’m so relieved that I was able to look at and consider the bigger life picture, thanks to the blog. I ended my own misery and was able to focus on what has become my No. 1 priority where Mom is concerned: her peace of mind.

This is not to say I consider myself the ideal caregiver. Not by a longshot. But I am not an angry or resentful caregiver, and that is significant progress. I didn’t want the job when Mom started showing signs of illness. I fixated on what I considered Mom’s misgivings as a mother as a way to justify my own lack of interest in taking care of her. Some time ago, though, without ceremony, I forgave Mom for the bad times in my childhood that I attributed to her, and I forgave myself for holding onto that anger for as long as I did. For some, it’s easy to stay stuck with the anger. I am so fortunate that blogging helped me get unstuck. It will be interesting to see what the next year has in store for me, and for Mom.

A good day, a sad time

Well, sure enough, I worry that Mom is ready to discard me for good and a visit or two later, she is as funny and as warm as she has ever been. Maybe it was the hustle and bustle of the holidays that got to her and led her to seek solitude. I went over to the center last Monday morning, interested in seeing and maybe participating in the weekly worship service. One of my support group friends volunteers at the service and I thought some singing would be nice. I am not religious, but I do enjoy singing hymns. I have heard that Mom sits in on that event most weeks.

When I got there, the service was in progress but Mom was sitting in a chair by herself, and she was talking. To the air. She was pretty engaged. I greeted her and asked her if she’d like to join the group. An activities staff member said Mom had declined to participate that day. Which was fine. I did get Mom to stand up and we took a walk around. She was quite the chatterbox. We eventually sat together in another area. She talked and talked. “This is my nose,” she said, pointing to her nose. “I am Bonnie,” she also said. I had forgotten my phone. I wanted to shoot a little video because she was being so darling. When I sang along with the service’s closing song, “Battle Hymn of the Republic,” Mom occasionally hummed in response.

A few days later, I visited again after a care conference. Mom was sleepy, lying on a couch. I sat by her feet and rubbed her legs and just spoke calmly to her for a little while. I didn’t stay long. But she was pleasant and said a few funny things, at one point launching into a brief song and throwing her hands into the air. Her care conference yielded little new news – her weight is stable; she eats 75 to 100 percent of her meals and is still undergoing occupational therapy related to her distractedness during dinner; she doesn’t participate much in activities but still shows signs of enjoying music; she’s mostly independent now, not hanging around with boyfriends very much; she let the podiatrist cut her toenails; at the most recent dental check, her chart said, she “screamed a lot but was cooperative.” That made us all laugh. She resists hygiene care, but is otherwise a resident that the staff members seem to enjoy. “I just love your mom,” the activities director said.

I was drawn to the worship service for another reason. The previous day, on Sunday, I had been stunned to find in my local newspaper the obituary for Dr. Leopold Liss, the founder and medical director of the Columbus Alzheimer Care Center and the longtime leader of the weekly support group I had attended. He had died on New Year’s Day. He was 89, but despite his age, his death was unexpected. If he had had health problems, he kept that information private. I had last seen him at a support group meeting in early December. For a variety of reasons, I hadn’t returned. I felt some guilt about that, of course. But it’s not as if I would have had any opportunity to say goodbye. I was told he died in his sleep – such a lovely and peaceful end for him, but a shock for those left behind.

It is a personal loss, but much more significantly, the loss of a great mind in the Alzheimer’s community. He had seen so much in his career and had established some irreverent opinions as a result. Irreverent in the medical community, perhaps, but completely practical for many of us who are caregivers. I am grateful and proud that I knew him, and that he took an interest in me because I write about medical science. And I will forever consider him a genius for his design of the Alz center. From the day Mom walked into the facility 3 1/2 years ago, she has felt safe and comfortable and loved in that special environment. On the evening of Jan. 30, the center will hold a memorial service for him. I will be there, of course.