The Yellow Wallpaper

Today bears the same date as the day my mother died, but that day will always be a Tuesday to me.  It felt like a Tuesday.  Or maybe Tuesdays will always feel like that day, which was sunny in that extra bright early spring way.  No leaves on the trees yet, exposing the squirrels and birds as they reorganized.  Daffodils all over the place but not yet the lush green of deep spring.

I’m still surprised at times to realize that she’s gone.  Seeing her name on the grave marker was probably as close as I’ve come to fully realizing her death. I think I’ve used the phrase “suspension of disbelief” before–Coleridge coined the phrase to refer to a reader’s response to the fantastic in an otherwise credible story.  If a story resonates with the reader she is likely to accept such elements as the supernatural or chronological discrepancies.  Something like that is going on with me, I think.  Placing flowers on her grave is one way of suspending disbelief.  Giving away her clothing is another.  Despite it all there is something still alive.

So I find myself feeling like a tightrope walker without a net, now that both parents are gone. I don’t have much more to say than that right now, but the date needed to be marked.

I’ve been mulling over the very insightful comments left by Marty and Gail on my last post. I think Gail summed it up well when she stated that “it’s the tension between ‘doing’ versus ‘being’.” I’ve always been someone who feels that the “being” will come later on–there is just so much that needs to be done right now and therefore no time to just “be.” What Gail says about the demented and routine boils down to living a life that is increasingly and necessarily “in the moment.” I was rereading Joanne Coste’s Learning to Speak Alzheimer’s and found myself interested in her remarks about the loss of depth perception in Alzheimer’s sufferers. There’s a psychological analogy to this loss as I see my mother losing context–forgetting the stories that surround everything. And yet she still knows that there should be a story, so she pulls out whatever’s left and patches something together.

I’ve been taking her out for ice cream after dinner once a week, now that the weather is nice. Literally around the corner from Garden Manor is a place that makes its own ice cream in flavors you can’t get anywhere else: lemon coconut, chocolate raspberry. The area around the ice cream shop is still very woodsy (although development is slowly approaching) and across the street is a big lake. We get our cones and I park the car facing the water. We don’t say too much–we watch the boats and the anglers. I’m regaining an appreciation of simply looking at water. Possibly because I’ve had so many wonderful experiences around water–many of them with my parents–just the sight of it is calming.

When I was a kid we used to go the the beach in the evening, when my father came home from work. My mother would bake chicken in some kind of cinnamon coating, and we’d pack it up, pick up my grandfather, and drive to either Newport or Point Judith. Once we spread our blanket out on the sand and got settled, my grandfather would smoke a cigar without saying much; my father would read. My mother, sister and I would walk to the tideline and look for shells while the water washed around our legs. That evening light and the salty smell can lower my blood pressure to this day. The sounds of the buoys and the seagulls, the great big rhythm of the tide–when my mother and I now sit and look out at the lake I begin to feel a bit of that peace. I wonder if the sight of the lake can still suggest to her the peaceful feelings of those days, even though the stories might be lost?

Yesterday I took Jasper with me, which reduces the peace factor but my mother enjoys him so much. I found her in her room, in the middle of something that had to do with taking a break from “the people in the auditorium.” I suggested we go for ice cream and she immediately agreed, but needed to let them know she was going. The “people,” it turned out, were a new resident–a sweet, childlike woman named Betty. My mother found her in the common room and talked with her a few moments. “You go and have a good time,” I heard Betty say as I approached them. “This is my sister,” my mother introduced me, but Betty had her eye on Jasper. “A little dog!” she exclaimed and bent over to pat him.

Jasper shines at moments like this. He lifts his little head and lets himself be petted, then gives his admirer a kiss. His behavior there continues to amaze me because he can be a demon puppy at home–he’s chewed the kitchen linoleum, several shoes and his very nice dog bed. When I lean over and sternly say “NO” he looks at me for a moment with those adorable eyes, then barks sharply as if to say “Make me stop,” and runs off to find something else to get into. He “graduated” from Puppy Kindergarten last week, which involved the awarding of a diploma. I accepted it for him, and–the pressure finally off–he squatted and did his business in the middle of the training room.

So we finally dragged Jasper away from his fans and found ourselves enjoying our ice cream and watching the water splash as the small boats passed by us. My mother was quiet for awhile, but finally said, “I’d love to be on a boat.” I tried to remember the last time we’d taken a boat ride together–maybe years and years ago across Lake George in upstate New York?–and remembered that one of the activities planned for the residents at Garden Manor was a boat ride. I wondered if she would go on that trip, or if she would prefer to be on a boat with me. I made a mental note to check on possible boat rides across the lake.

When we returned to the Manor at about 7:30, most of her fellow residents were in their pajamas, including Betty. My mother would not settle in her room until she tracked Betty down. I spotted the two of them saying good-night to each other in the hallway and giving each other a kiss on the cheek, which made my leaving a little easier.

My mother is much quieter when I visit now. Today being Sunday, we took off for our usual lunch and drive. My sister comes along, as does Jasper the Sheltie (who really doesn’t like going for a ride, surprisingly–he runs and hides when I approach with his harness. This is pretty uncharacteristic for a dog and I’m hoping he grows out of it). Garden Manor has a Sunday afternoon barbeque, and today my mother seemed uncertain about whether she wanted to stay for that. Making even a simple decision is almost impossible for her at this point. A choice between coffee and hot chocolate, for example, is prolonged by her insistance that someone else pick for her. It’s a frustrating development at a time when I want to preserve what little choice she has in her life. At first I would not let her off the hook, but now I’ll just pick what I think she’d prefer. So today I suggested we forego the barbeque and go for a drive.

And this we did. She says next to nothing as we drive, which bothered me at first. I’d question her about her sleep, her meals, her activities, and she’d always answer me with vagueness–”I guess so,” or “I forget.” So I’ve backed off a bit. Every so often I’ll ask her if she’s comfortable or does she want to stop at a store, just to tune her in. I’m getting better at translating her silences–sometimes she’s just pleased to be out and othertimes, like today, she’s unsettled.

Lately she’s seemed like someone walking around with a pebble in her shoe. Always a little “off” but unable to pinpoint why. Constant, low-level discomfort. I don’t know how much this discomfort is turned up when my sister and I are around. I’ve asked the staff how she’s doing and they tell me she’s doing fine. And when I’ve arrived to find her sitting with her card-playing friends, she seems in good spirits and very engaged. She tells us that she does nothing all day, but I know otherwise. The staff photograph many of the social functions and then put the pictures on bulletins boards around the lobby. I originally thought that was a sweet little extra, but now I see that it is probably for the families who can’t get anything out of their loved one. I’ve spotted my mother in a few pictures–eating ice cream or listening to music–so I know that she joins in occasionally.

So I’m thinking that her taciturnity (is there such a word?) might be a little more complex than merely the verbal loss that accompanies Alzheimer’s. She’s been at Garden Manor for a little over five months now, and she seems to be making her own sense of it. On the other hand, I have my own sense of where she “is” and the two don’t often mesh, I think. I operate under the assumption that she remembers how she came to be here and my role in that change. I visit the woman who–I believe–thinks about her old life and wonders why I don’t show up more often. But she’s not that woman, and so I think my assumptions puzzle her.

I’m not saying that I need to map her reality, because I don’t think I can do that. But maybe I can back off and stop trying to fix what isn’t broken.

For example: one subject she invariably raises when I visit is her mother. “How’s Ma?” she asks me. “Where does she live?” “Did you have a fight with her?” “Does she know where I am?” I usually improvise in a very sloppy way, but I think that this is a theme I might have to consider more carefully. Or maybe it’s part of this stage of her adjustment to her new life.

On a personal note, I finally let go of my beautiful 14-year-old collie Lily yesterday. I was hanging on to her, despite her crippling arthritis and doggie dementia. But my poor girl developed a horrible pressure sore, and I knew I couldn’t put her through any more. She’d had a good, long life–and a healthy one, until recently–and her welfare was more important than my need to hang on to the past. I’m less distraught than I was when my boy Dustin died last August. His illness and death were unexpected, but I’ve been considering my Lily’s life for months now. She was a lively and inquisitive collie, so seeing her deteriorate was awful. I think my sadness now is alleviated by relief at being able to release her from her difficulties.

But, oh man, I’m starting to get severe “decision fatigue”…

Two days ago my cousin telephoned, and my mother answered. I listened to her side of their conversation and thought, “Have I been dreaming? Is she really sick?” She handed the phone to me at one point. “She sounds great,” my cousin said to me.

Is this the woman I visited in the nursing home a little over a month ago? The one who was acting out, who wanted to kill herself, who claimed she’d been raped? Oh, we still see the disconnects (she kept referring to my sister as “he” earlier today), but I can deal with that. I can deal with her thinking that I’m her sister, or expecting my father to come home for dinner, because those disconnects don’t alter my mother’s personality, her “self.” She remains essentially herself, only caught in a time warp or subject to a misidentification. If I say to her, “Daddy won’t be here, tonight,” she usually takes it in stride, even though she’ll probably ask for him again tomorrow.

I’m not trying to fool myself, here. I’ve seen enough of her during those other times, when her body seems to be inhabited by another self. When she’s so agitated by God-knows-what that she can’t get a grip. When she’s so angry at me–only the “me” she sees is a stranger. I can tell by her eyes. I saw it in the hospital and again in the nursing home.

But she’s been remarkably like the Mom I’ve known all my life since she came home from the nursing home. Despite all the reading I’ve done, all the learning about Alzheimer’s Disease, I catch myself at times like this wondering… Am I making a mistake, moving her to assisted living? What if THAT makes her worse? Even though I’ve actually experienced those spells when I’ve been a stranger in her eyes, they now seem like dreams to me.

I know that this is what happens. One step forward, two steps back. Another step forward, leaving the caregiver in an emotional and practical muddle. How awful is it to find yourself worrying because your mother seems to be better than usual? Should I be listening more to my heart, and not to my head?

This facet of caregiving just can’t be measured: the role of the familial bond, for both the caregiver and her charge. I couldn’t do this, day in and day out, for a stranger (unlike many professional caregivers, God bless them)–I get my motivation from my lifelong relationship with my mother. When the going gets tough I try to remember specific things she has done for me over the years–I step back a bit from the present moment and try to put it in its proper perspective as just one of many, many moments that comprise our relationship. Doing that requires a rational decision–I withdraw from the emotion of the present into something I’ve created, an informed mindset I’m determined to maintain. I may be close to tears but I can usually hear the reasonable voice within me saying: “Now, now, that’s the Alzheimer’s speaking–take it with a grain of salt.”

I think my point is that the swinging back and forth from head to heart, and back again, is tough. Knowing at any given moment whether to listen to reason or to emotion is difficult–usually such decisions are nicely spaced throughout our lives. But here in Alzheimer’s Land they are not. When you are caring for a parent, there’s a constant conversation going on between your dispassionate and your passionate selves. It’s nice to have dialogue but sometimes I have to tune it out. Sometimes I have to rest my head against The Divine and say, “Okay, you take care of things for awhile. I just want to close my eyes…”

I’m going to do that right now.

I don’t particularly enjoy visiting with my mother in the nursing home, but I dislike NOT seeing her even more. I worried for awhile that my presence was having a negative effect on her behavior, until I realized that there is no resolution to that particular worry. Maybe it is, maybe it isn’t–in the end I have to do what I believe is best. The staff have been kind to us, especially after my mother gets upset upon realizing that I am not taking her home on that particular day. They tell me that she forgets her anger soon after I leave, but I don’t think that’s always true. Today she was in an agitated, confused state, but she remembered that my sister had visited her earlier and then had gone home without her. And now I was about to do the same.

I hate having to figure out ahead of time how to make my exit. Today she argued and pleaded with me to take her home. I began to debate her, which is a sure way to escalate her agitation–usually I stick to my catchphrase: “You’ve got to stay here until you feel better”–and today she wouldn’t be distracted. I finally picked up my coat and said: “Mom, we’re both upset. I’m going home now but I’ll be back tomorrow. Don’t be mad at me, I’m doing my best.” “I’m not mad,” she muttered as I kissed her goodbye.

In fact, I probably will be taking her home on Thursday. We were told yesterday that she had reached maximum improvement and would be discharged in a week. Nothing has opened up at the AL facility, so I’m trying to figure out how to handle this ragged turn in the transition. I can’t help but expect that it will be harder to move her into assisted living once she’s been back at home, but I also know that this disease often defies expectations. The solution, I know, is for me to be firm, to believe that such a move will be in her best interest and to act upon this. Right. I’ll do that.

Basically, it’s an act of faith and exhaustion, mostly the latter. Over the past three weeks I’ve seen another level of the disease, a more complex confusion and a more rigid compulsion. My mother clasps delusions of crowds who are about to visit her, as well as the conviction that she has been left all alone night after night. She tires the staff with her wandering. I’ve seen her take off suddenly, setting off her body alarm–she wouldn’t look at me, she just plowed ahead, determined to GO. I have to remind myself that the various parts of her brain are no longer working together–some may have shut down and others are overcompensating–but the unpredictability of this deterioration requires more than one caregiver. I just can’t do it by myself.

Feeling this uneasiness around my own mother is extremely disorienting. Having such a fundamental relationship not only shift, but change shape, challenges so much of my own identity. I look at old pictures of my mother and try to remember what she was like. I hope that this present uneasiness does not affect my own memories of my mother. I don’t want to lose them–but I’m so afraid that I will.