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.

Seven years of guilt

I have found myself many a time gently telling my peers in support group that it’s OK for us to care about ourselves. And that there should be no guilt about placing a loved one in a nursing home. If only I could take my own advice about guilt.

I don’t feel guilty about placing Mom in a nursing home. I really never have. It had its challenges, and I so hoped that she would adjust quickly (she did). But I didn’t think I was doing the wrong thing. It pains me to see so many caregivers regret even considering the idea of a nursing home. They seem to think it is such a betrayal. It often doesn’t help that they are emotionally and physically drained by the caregiving, making it hard to think clearly. I can say right now with full conviction that Patrick should make use of long-term care for me if the need arises. I don’t want him to ruin his health looking after me.

And yet, I still do feel lots of guilt, about Mom and all kinds of other things. Lately, I have been feeling guilty about not attending support group on a regular basis. In the summer, I had conflicts – the occasional round of golf being one of them. This fall, I have experienced an unusual busy spell that has persisted for about two months related to work, business travel and freelance jobs. I have gotten to the weekly meetings about five times since August, I’d estimate. After a long dry spell, I do recall that it was helpful to get back there at the end of the summer; I had missed the community spirit in those meetings.

And yet, why in the world would I feel guilty for not attending? It’s not as if I am so full of wisdom that I actually make a difference in anyone’s evening. And lots of people cycle in and out. I don’t do myself any good by regretting missing those meetings. I am missing one right this minute, in fact, because I was at work later than I expected to be.

As I was walking the dogs tonight, and wondering why I have been so cranky lately, it occurred to me: I think I feel guilty because I am not as tortured by Mom’s illness as I used to be. For now, at least, I am sustained by the goodness of my own life in a way that lessens my need for the support of my caregiver peers. And even though I don’t actually believe this to be the case, I can’t disregard the worry I have that I might be a bad person if I’m not in constant agony about Mom.

I am so lacking in agony and obsession, in fact, that the anniversary of Mom’s diagnosis went by without a single passing thought in my mind. She was diagnosed with Alzheimer’s on Nov. 3, 2005. Hence the reference to seven years in the title. My guilt actually predates that diagnosis, because once I learned she had Alzheimer’s, I was full of regret over all the arguments we had as the illness was first causing her distress – before any of us knew that. And when I looked after her when she was in assisted living, I was always convinced I wasn’t doing enough. Over the 3+ years she has lived in the Alz center, I have occasionally wondered if I didn’t visit often enough – and I am going through one of those phases now.

Lately, when people have asked how Mom is doing, I’ve had the same answer: She hasn’t changed much in a long time. Translation: She hasn’t lost significant function; she is holding steady. I’m pretty sure that is a factor here. I am used to her current state. Perhaps with the next change in her status, I’ll enter a new phase of grief. Is it so wrong that I accept and am OK with her current status?

I think I am the one I have to convince that it is OK to be OK.

A child’s choice

A few weeks ago, The New York Times published an essay by a writer named Kelly Flynn titled “But Who Will Care For Me?” In it, Flynn described being childless (because of a health problem) in a culture that revolves around the family unit. Near the end, she wrote, “…now, as I help my parents navigate the trials and indignities of old age, I can’t help thinking, who will do this for me? Even if I can pay for top-notch care, it won’t come from a place of love and understanding of who I am and what is important to me.”

I bristled at this notion for a few reasons – one, having children is no guarantee that you have built-in caregivers, and two, I don’t think it’s fair to burden children with the expectation that they will spend their prime adult years looking after their parents.

I suppose I sound harsh. But from my perspective, making that assumption essentially devalues the life of the child. I’ve heard many times that Mom took care of me and now it’s my turn to take care of her. I really don’t think that’s a very helpful thing for anyone to say. It suggests that children are born with the expectation of payback. I find that concept offensive.

Many children very willingly care for their parents. I started the job reluctantly, and have adjusted, over a lot of time, to being my mom’s caregiver, and now consider it an honor to be with her at this time of her life. But how that plays out is not for anyone else to decide. Considering the massive stress associated with caregiving, why should we also live with the impression, sometimes imposed by others, that our lives have less worth than the lives of those who become sick? And of course this is not an indictment of the tragically unlucky who are stricken with disease. I just think that in deference to the ill, we who are already vulnerable are at risk of losing sight of what we once wanted for ourselves.

Patrick and I chose not to have children, so we may find ourselves stuck in our old age with limited choices for how we spend our final days. We have some planning to do. But if we had kids, I would be loath to stick them with caregiving duty without considering their wishes.

I wrote the following comment in response to the essay. A couple of people called me selfish because I chose not to have kids. I’ve always found that response questionable – just who is missing out on something because I didn’t reproduce? I guess it means fewer grandchildren for my parents and Patrick’s. But they’ve never said we are selfish. Interestingly, the few who responded to me don’t say I’m selfish for placing my mom in long-term care. And I’m glad not to be judged in this comment thread about that, but it’s also no one else’s business. Anyhow, some of what I wrote is what I try to convey sometimes to my peers in support group. We matter, too. And it’s OK to say so.

I am childless, by choice. And I have no regrets about the decision. I am also caregiver to my mother, who has Alzheimer’s disease. Early on, I decided she would live in institutions and not my home (or her apartment) when the need arose. She adjusted well, and she is now surrounded by the most caring nursing home staff I could ever imagine. I made that decision because my life matters, too. … I looked after her while she was in assisted living and am her advocate to this day. And I love her now more than I thought I ever could after a complicated childhood. But in my caregiving support group, I remind my peers that though this disease is tragic and taxing on caregivers, it does not mean our lives as we have known them have to end. In fact, our lives shouldn’t have any less value than anyone else’s. … I don’t know what will happen when I am old or if I become incapacitated, but if I had children, I would not want to saddle them with caring for me.

Summer bummer

July was not my favorite month. It was hot – the hottest on record in much of the country, the news said this week. And that power outage started the month off badly. I was so drained by that experience, probably because of the sleep disruption that it caused, that it took me awhile to just feel normal again. And as a result, it also took me awhile to get back to the Alz center to visit Mom. I wasn’t avoiding her. I just didn’t go until the evening of a Family Council meeting, when I popped in briefly to check on her. She was lying on a couch after dinner, sort of drowsy and content, with Mr. Beard nearby. I was satisfied that she was doing fine.

(The Family Council is not going great – we’ve met monthly since April, and forwarded a few requests to the administration. But attendance is low, and I’m not sure it’s going to last. I am invested in giving it a try, but I am not taking it personally if it fails.)

I finally got a good visit in with Mom on July 31. Mom was lying on a couch in the lobby, fast asleep, when I arrived after lunch. I pulled a chair over and sat facing her, trying not to wake her up. I enjoyed just sitting with her and watching her sleep. A few staff members chatted with me while I was sitting there. One aide came by numerous times as she wheeled residents out of the dining room and back to their rooms on the skilled nursing side of the building. “Are you Emily?” she asked, and I said yes. She said she uses my name to get Mom to do things. “Emily said it’s time for your shower.” “Emily wants you to be sure to eat all your dinner.” And it works. I was touched by that, but also impressed that she had figured out a way to win Mom over to whatever she wanted Mom to do, and minimized Mom’s objections in the process. So the name Emily still means something to Mom. But my physical presence may or may not be helpful. These days, I’m just not sure.

Mom eventually woke up and sat straight up. I had been patting her leg and she said, “No, no.” I wondered if that sensation made her think I was going to try to take her pants off of her – meaning a dreaded trip to the bathroom. She began to talk off and on, and I’d respond in a cheerful way. I admired her haircut and told her she looked good. And she did. She was in a good mood, refreshed by the rest. I noticed her fingernails were really long, so I gave them a quick trim, and she didn’t protest. We eventually stood up for a walk. We held hands and walked to the program area. The activity at this time was spending time outside in the courtyard. I walked with Mom to the door, and we looked outside. I couldn’t really tell if she was interested in joining the other residents out there. The door was locked, and the aide outside didn’t notice we were standing there. Mr. Beard had joined us, and before we could make a decision, Mom and Mr. Beard turned around and walked away. And that was OK, because I had to go back to work.

I’ve gone through periods before when I visit Mom less frequently, and I’m never sure what the cause might be unless it’s obvious, like when I travel for work in the fall or get sick. I felt like I was in a funk for most of July. Maybe I was hot and therefore tired. I was discouraged by numerous little joint and muscle pains that were piling up and interfering with my enthusiasm for exercise – always a bit of a challenge for me anyhow. I assume I wasn’t showing outward signs of depression, but I just didn’t feel so great. I looked to the beginning of August as a way to clear the July slate and start the summer fresh.

One thing new this summer was a change in the day of my weekly golf outing with a group of friends. For the past several years, we have met on Thursdays, but this year it was switched to Wednesday – which is also when the Alz center support group meets. I had skipped several support group meetings in a row for golf, and assumed that the golf itself served as a type of therapy, as both a physical activity and an enjoyable social event for me. Finally, on Aug. 1, I decided to check in with support group. I walked in, a tad late as is typical for me, and a few regulars perked up at my presence. “There she is,” one man said. And the daughter of Mom’s former roommate, the most steadfast group member of all, lifted her hands in a little cheer upon seeing me. And I think that greeting, from friends I would not know were it not for Mom’s illness, was what marked the beginning of the end of my funk. I had missed those people more than I realized. The group members, the doctor who leads it, the weekly meeting time, the familiar setting, discussing the shared burden of Alzheimer’s caregiving – these are all part of my life routine now. And I find comfort in that.

Life lessons don’t always last

Ohio is part of this big storm damage-power outage-heat wave problem in the eastern half of the country. Our house lost power for five nights and six days. We threw away the contents of our refrigerator, freezer and a chest freezer downstairs. Our dogs panted each night away trying to cool off. We and our dogs stayed at a hotel one night and all four of us slept in our basement for two nights – which was surprisingly tolerable. The power came back on the night of the 4th of July and I was so energized and happy when that happened. And then last night, the power went off again. A circuit serving our house and 12 others in the neighborhood appears to have blown. And I have sort of gone off the deep end.

I think the forecast of 102 degrees today has a lot to do with that. I also had planned a full day of cleaning in preparation for my sister’s visit from California. I envision the house is coated by a layer of bacteria that settled in during the hot, breeze-less days. And there is much laundry to do. She booked a hotel earlier this week just in case, because my dad’s house has only partial power that doesn’t include air conditioning and it was hard to be hopeful about the power coming back on when we were in the midst of the outage. And as it turns out, there indeed is no comfortable family place for her to stay at the moment.

The realization that something was wrong began when I was listening to a voice mail from my stepmother last night on my way out of a movie at the neighborhood theater, which suffered through several nights of lost business during the power outage. She said our home phone wasn’t accepting calls. This concerned me. As we walked down our street, lights were on at most houses. And then there was our house, dark and quiet, the same as a few others on our side of the street. We walked around and could see the cluster of houses on our street and on the next street over that were dark. Neighbors were in their yards with flashlights. We made calls to the electric company and went to bed in our stifling bedroom. I tossed and turned for hours, listening to my poor 95-pound chocolate lab panting and panting, consumed with all the ways I hated the power company and wishing I could think of creative ways to express it.

During the first part of the outage, I tried to maintain perspective. At least I have my health, I would tell myself. I’m not unlucky like my mom is; I haven’t been stricken with a terrible disease. And I have access to an air conditioned office I could visit to get on the computer and charge our cell phones. There are many in my city and in other parts of the state who waited longer for their power to be turned on, or who still haven’t gotten their power – and we are nine days past the storm that downed trees and power lines. Some people in rural areas have no water because they need electricity to power their wells. Some people are in very poor health – so far, three people in Ohio who had chronic illnesses have been found dead in their homes. I am going to be fine. I am merely inconvenienced. But last night and so far today (it’s still early), I have been obsessed with how upset I am.

I so want to be a person who isn’t full of hate, who doesn’t complain, who can roll with the punches. Especially as I get older. I have tended to enjoy many aspects of aging because, though it isn’t apparent at this moment, I am more mellow than I used to be. A little less emotional and reactive. I am able to pause in the face of adversity and try to think before I talk. I’m still not great at any of this, but I do perceive myself as less explosive than I used to be. But I still have such a long way to go.

Not long ago, I posted about how I have learned during this experience with Mom that approaching the future with dread is no way to go through life. That good outcomes can follow the worst possible turn of events. So much of those lessons are lost on me right now, and I’m disappointed that I can’t seem to maintain that positive outlook. I will try to treat this trying time as a little case study once it is behind me, I think, so I can learn some more and hopefully figure out how to be the better person I want to be.

A life lesson

Last night at support group, one of my friends there said I have come a long way. When I asked her to explain, she said I just seem more at peace with what’s going on with Mom, that I talk about her with such affection, and that I talk less about how lonely I feel sometimes as her caregiver. I seem less angry. I’m glad it shows, and I think, after the week I’ve had, that maybe I have turned a corner (or at least started turning a corner) on the anger front.

Something very bad – very sad – happened on Monday at work. Someone I care about, someone who has been a mentor to me for many years, is out as the result of a reorganization. I have been telling some friends that I feel like I’ve experienced the phases of grief over the past three days. And then today, I woke up thinking that the best thing to do is accept what is going on. Remember that I love my job, and make the best of it. Don’t live with hate in my heart. Spending my days full of anger isn’t good for anybody, I reasoned. And it’s certainly not good for me. It has been liberating to feel this way, and I admit, it’s unexpected.

It makes sense to think that my evolving approach to Mom’s illness has influenced other aspects of my life. I spent months – years, probably – full of resentment about being stuck as her caregiver. Her need for my care and attention revived in me all sorts of negative memories of my childhood, when she often wasn’t around to give me care and attention. After the Alzheimer’s diagnosis, I looked to my future, and to Mom’s, full of dread. I have learned over time that plenty of caregivers get stuck in this place of resentment, anger, grief and dread. And I am so relieved that I didn’t get stuck.

It has helped that Mom is content, and that on most days she is so sweet to me, and feels moved to tell me that I am beautiful, or wonderful, or both. I might have completely different emotions if she were mean to me. It also has helped to learn that when she is not at her best, she is still doing her best. She has a diseased brain, and reason and negotiation mean nothing to her. So when she feels a threat and lashes out, she is taking care of herself in the only way she can. And it’s not personal.

I still have lots of anxiety about lots of things, and I am still inclined to react emotionally first and with a more level head sometime later to virtually any old thing that might be said or done. When I am dissatisfied about something, I have an unfortunate tendency to make my displeasure known. On the road, I feel genuine rage sometimes. I don’t suck it up as much as I think I should. I am still working on being the person I’d most like to be.

Who would have guessed that Mom, in her current state, is helping me become that person? Through her, I’ve learned that even the most damaged people can still find pleasure in life – often from the simplest things. What many consider to be a bleak existence can be marked by endless laughter, dancing and singing, and consistent and comforting social interaction. When something bad happens, it doesn’t have to define the rest of one’s life. Something so bad, and so sad, has happened to Mom, and to our family and her friends. But we carry on, we learn to live with it, we make the best of it.

My relationship with Mom is as warm as it has ever been. So what if she doesn’t know I’m her daughter? Her instinct is to trust me and to hold my hand and to tell me story after story. This future of hers, and mine, has turned out brighter than I ever could have imagined.

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.

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.