The Yellow Wallpaper

I didn’t want to let April go by without a word. I’ve started several posts over the past two months but have been unable to finish them. I knew that I would have a period of adjustment to my mother’s new living situation, and I guess I shouldn’t be surprised to find myself depressed. When I was living with my mother I would imagine this time–when I could finally return to my house and have some time to myself–as being light. In some ways it is. Having the time to be alone is a good thing for me. But beneath the moments of solitude and the freedom from worrying about her safety is a lot of grief, I now realize.

To be honest, I’m having a very difficult time right now. I’m having a hard time motivating myself to do a number of things–to keep up this blog, to read, to clean the house. I wake up each morning anticipating a long day. Once I get dressed and out of the house, my mood picks up, but I am still struggling to concentrate at work, to organize my thoughts and plans. Little annoyances become vastly important and weigh me down. I’ve been here before–I know what this is. It’s been awhile since I felt this “down” and so I have to remind myself that what I resist doing–writing and reading and meditating–are the very acts that will make me feel better.

What I want to do is watch TV, eat, and sleep. I do knit, which is about the only thing I do that’s productive and calming. Wait–I also garden. Weeding has always been therapeutic, and God knows, I have quite a bit of THAT to do. But fifteen minutes outside, inspecting my neglected garden for signs of life, is worth an hour of therapy. I’ve lost some of my favorite plants, but the clematis and the tulips and the peonies are back, and there’s nothing like seeing them poking out of the dirt to remind me that not all is lost.

I know that this mood will pass. I believe that depression is NOT something that must be avoided at all costs, that I can learn from being thrown off my stride. It doesn’t always feel good, but what does? Times like this remind me of the heart/mind dynamic–the borderline we learn to straddle as we get older. I go over my mother’s situation time and time again–my intellect has “gotten” it but my heart still needs the chant. Whenever I start to feel sad that my mother must be in assisted living, I have to remind myself that it isn’t the assisted living that is the problem. It’s the Alzheimer’s, and I can’t control that. The assisted living has at least given her companionship, routine, challenge. Were she back at her house, she’d be sitting like a ragdoll on the couch, unable even to watch TV. Now she takes walks around the building and sits with her group of ladies. She has her well-being monitored day and night. She goes to exercise, and to Mass, and to socials. She has her hair done. I now visit three times a week–on Sundays we go out to lunch and for a ride. I need to repeat all this to myself on a weekly basis, because it’s so easy to fall back into the habit of shaking my fist at the gods.

My mother has had her ups and downs but I can sense her settling in. On Thursday I sat with her and one of her friends, who began to talk once again about going “home.” “Which one?” my mother asked. The woman pointed to her room. Home is a concept I haven’t yet been able to pin down. More and more I see it as the hope that they will still have control over their lives–that they will continue to be able to make crucial choices for themselves. I have no right to take that hope away from them.

I’ve mentioned this before, but I’m struck by how my mother sometimes wants to go home “next week”, or some other time in the future. She admits she doesn’t want to live alone and asks me if I will find someone to stay with her. I have no intention of doing this–if anyone stays with her it will be me–and yet I hate to mislead her, so I’ve often wandered down the wrong path of trying to reason with her. She can sense my ambivalence, which agitates her even more.

What I’m coming to realize is that, like most subjects, this one is more metaphorical than not. We aren’t really talking about her moving home, but about her independence. I’ve read so much about the anguish of “lying” to a loved one with Alzheimer’s, as if we are still able to communicate as directly as we did before the disease. Communicating with my mother has passed beyond the unequivocal exchange of words. I have to look for patterns, for contexts, for tone. How else can I respond to her repeated questions about her mother–why isn’t “Ma” coming to see her, does “Ma” know where she is, did I have a fight with “Ma”? I now say “Everything is fine,” which may or may not be a lie. And when she asks me to look for someone to stay with her, I say “I’ll see what I can do,” which also may or may not be a lie. I think at this point it’s not the words that count, but the fact that she has someone to whom she can try to express what might be beyond words, over and over again. I can be there to absorb some of the anxiety, to reassure her, rather than trying to take a literal measure of reality. Like so much of life, this is not a situation that can be solved with one or two conversations, but will need to be repeated again and again, like a ritual.

I’ll end on a positive note. The photo at the beginning of this post is my newest love, Jasper, the 4-month old Sheltie who has entered Lily’s and my life. I’ve had him for about a month. We are going to “puppy kindergarten” (where the other puppies are twice his size–but he is twice as fast and not afraid of them in the least). We also visit my mother weekly, where Jasper is a great favorite with the staff and residents of Garden Manor. He loves my 14-year-old collie Lily–he snuggles with her all the time. I was a little in shock for the first week–I’d forgotten how peppy puppies are–but it took him no time to settle in. He’s affectionate and talkative and very busy. It’s nice to find myself at the beginning of something.

Today reminded me of why taking care of someone with Alzheimer’s Disease becomes unbearable. In short: there is no smooth trajectory downward–you wake up each morning with little expectation of what the day will bring. Things get horrible, then they suddenly improve for awhile. Then they get worse for a day, then you coast along for awhile very manageably. This emotional rollercoaster is much harder to live with than I expected.

I had an appointment with our lawyer today, so I took the entire day off. Eva was working a long shift, so I planned on spending time at my house in the morning and then heading off to the lawyer’s office.

I’m beginning to realize that the tenor of my mother’s days is often set by me or my sister. Sometimes I do something with the expectation of relieving her anxiety, only to find my act provoking new and different behaviors. So today I expected that my staying with my mother until Eva arrived would be reassuring, since she seems to be unusually fraught at being left alone. Before I got up I heard her go into the bathroom and then return to bed. When I brought her pills to her shortly afterwards she took them from me and attempted to take them without lifting her head off the pillow. When I suggested that she sit up, she told me that she couldn’t, because her leg was in great pain. “I can’t even walk anymore,” she moaned.

This isn’t the first time I’ve heard her up and about–sans cane–only to moan, “I can’t walk” minutes later. I think I’m realizing not so much that she’s “faking”, but that her legs are what we English Lit majors call “the objective correlative” to her mental state. As the legs go, so goes the day.

We have had her legs MRI’d and ultrasounded and xrayed, and the doctor’s conclusion was that there is most likely arthritis at play–an idea my mother sometimes embraces and other times denounces. I mention this because I don’t want to seem indifferent to her pain. I’m now at a point where I must be very selective about my battles.

Today I wondered whether my staying home hadn’t set my mother on a slightly different course from her usual morning confusion and anxiety–on a somewhat more self-conscious tangent. She eventually got up and wandered out to the kitchen–again, without her cane–then sat in the living room for awhile. I delivered my gentle sermon about how staying in bed for long spells might contribute to her leg problems, and as soon as I turned my back–she was back in bed.

Eva arrived shortly afterwards. Once again, my mother got up and shuffled into the living room. “I don’t think I’ll go today,” she said weakly.

Ahhh. I’d forgotten that she wakes up every morning believing that she has to be “at work”, and so I responded, “You don’t have to go today,” which perked her up. “Can Eva stay?” she asked. “Sure,” I said, feeling like the good fairy.

By the time I got to my house I was both distracted and tired. Instead of doing the odd jobs I’d planned, I watched “Walk the Line” on HBO, which took me out of my world for a couple of hours. Look at Johnny Cash’s problems–and I think I have it rough? When I finally left my house I was humming “Ring of Fire.”

My visit with the lawyer was a good one. She backed up a couple of decisions I’d made and offered me a couple of reassuring financial alternatives. I was getting tired of people giving me advice, or bemoaning my parents’ failure to plan realistically. My father did what he thought sound, back in the seventies, and didn’t revisit his plans. As I talk to others my age, I realize that this situation is not uncommon. My father’s generation–who were coming of age during the New Deal–expected that government would always work the way it did under Roosevelt and take care of its citizens. How sad that many of this generation is now aged and frail at a time when the federal government is handing off such responsibility to the states like a hot potato. When “trickle down” economics is considered the 11th commandment.

But back to my day. When I left the lawyer’s office, I turned my cell phone on to find that I had two messages: one from Eva, asking me to come home, my mother was having shortness of breath; the other from my sister, with basically the same information. When I got home my mother was sitting on the couch with Liz, looking very wan. She said she was feeling better, but had quite a bit of trouble describing what had occurred. I tried not to interrogate her, I asked my questions slowly and simply, but all I determined was that there was no pain.

So here is where the caregiver has to remind herself that she will be the one to make any further decision. I heard myself asking my mother: “Do you want to go to the doctor?” but realized that this would go nowhere. I should have made a decision–let’s sit awhile and see how you feel–and presented it to her. I did this, eventually, but by then the seed was sown. A short time later my mother began asking me to call the doctor to ask for “the test results.” “What test results?” Liz demanded, as I clenched my teeth. My mother managed a halting account of having gone somewhere to have tests done, and they should be ready now, so would we please call?

By this time I was regretting having taken the day off in the first place. If I’d gone in at my usual time, my mother would probably have had her anxiety, which would have worn off by afternoon. I had bartered the anxiety for something else–but I don’t know what–and my mother was still having a serious problem stringing a sentence together in the evening. As we watched the Mass, she suddenly said: “They never used to do that in school, all the children… Come up to me and say, ‘It’s easter.’” I was totally bewildered and so I said, “Do they do this now?” “Oh, yes, especially little Eva.”

It hit me that she was referring to watching the Mass at noon, instead of at seven pm. Eva must be starting to suggest that they watch it early. “So now you watch it at noon?” I asked by way of testing my hunch. “Oh, yes,” she said happily.

So this was my day and thank God it’s a Friday, because I can sleep late tomorrow. I have no idea what the day will bring.

I called my mother from work at the usual time this morning, and she was having the speech difficulties she often has when she’s upset by something. But she managed to say to me, “I have company today.”

Using my best powers of interpretation, I guessed that she meant Eva, the homemaker.

“No,” she said. “It’s a man. Dustin.”

“Mom, that’s Lily.”

“No, Lily’s over here,” she said. “But there’s a man over there. Dustin’s over there.”

This seemed to be more than the usual doggie-name-confusion, and I had to restrain myself from interrogating her sharply. Her tone of voice was somewhat wary and distracted, and all I could think of were her pre-diagnostic hallucinations.

“Where are you?” I asked.

“I’m in the kitchen. He’s lying on the couch in the living room,” she said, and in the background I could hear my sister’s voice: “Mom, who are you talking to?”

I realized then that the “man” she was referring to was my sister, and my mother had given her the name of the last “man” to live in the house, my dog. My sister will often lie down on the loveseat in the living room when she’s visiting my mother–sometimes she dozes off there. This habit of Liz’s has lately been agitating my mother–when I had come home from work the day before, my mother had been extremely confused and agitated, and we managed to boil it down to the fact that “they” had been sleeping on the couch.

(I was able to calm her down the previous day through a creative interpretation of her anxious words. “We” usually means “I” and “they” means “he” or “she.” Talk of “going out” (which she does only with me) usually means that something out of the ordinary happened, something she didn’t expect which might have rattled her. So instead of asking, “Now who do you mean by ‘we’?” I know enough to let that detail go and home in on whether she thinks she’s left the house or not.)

But back to today: it wasn’t until much later in the day that I had my “Aha!” moment. I remembered her hallucination of November, 2004, where she was going down to the basement one night and saw the man sleeping on the couch. And my sister was re-enacting that memory.

I suppose–if my suspicion is true–this is a small insight into the type of connection that is still being made in my mother’s mind. Although increasingly less able to discern details, she is still able to see the gesture, the shadow, and hold it up to what still resides in her memory. In this case, the result was anxiety (and I will probably have to talk to Liz about sleeping on the couch). But there is still the possibility of reassurance, I think. I’ve said it before, but I’ll repeat myself–it’s like trying to interpret an especially difficult poem, where the sounds and the rhythm are just as significant as the meaning.

I’ve been having a discussion with my friend Gail about spiritual life and whether or not it affects or is affected by dementia. I’m now reading David Shenk’s The Forgetting and in his discussion of the middle stages of AD he describes how the disease progresses systematically through the different parts of the brain. The hippocampus is affected first, eroding the ability to form memories. The amygdala is next to be attacked, releasing control over the most primitive emotions and desires. Most of our brain comprises what Shenk calls “higher-order processing” and damage to these lobes results in some of the more sublime neurological losses. The first of these lobes to be affected, according to Shenk, is the temporal lobes, which “are responsible for primary organization of sensory input, for processing language, and for ecstatic feelings of spiritual transcendance” (119). When a healthy lobe is stimulated with an electrical probe it produces “powerful religious images.”

On the one hand, this might be something that I don’t really want to know: that my salvation depends upon a clump of neurons in my temporal lobe. On the other hand, those of us who are persistently romantic can look at the brain as the conduit rather than the originator of what we call the “self” or the “soul.” I’d be interested in learning more about the particular “religious images” that are produced by the temporal lobe. My guess is that they would vary from age to age, like the predominant cultural symbols that populate alien abduction tales of the present day. (Here’s a kind of dense but interesting essay.) The fact that the temporal lobe also regulates “the organization of sensory input” and “language processing” would suggest that it is something like the formal entryway to the mind (as opposed to the servants’ entrance–the brain stem).

The Gospel of John begins with the verse: “In the beginning was the Word, and the Word was with God, and the Word was God,” which suggests the spiritual power of utterance to the Christian world.  “And the Word was made flesh, and dwelt among us”–if we lose language, what does this mean?  For me, living with someone with Alzheimer’s means reinventing “the Word.”  Just because you can’t sense (hear or speak) it doesn’t mean it isn’t there.  In the best case scenario it is “made flesh” (heard or spoken).  But it all boils down to faith.  I’m not suggesting that we all be born again, but that this particular Christian symbol can guide us just a bit when the silence sets in.

Although my mother’s memory lapses and confusion spells have snuck up on me over several years, I can well remember the first time I heard a language failure. I believe this failure is called aphasia, and we were in the emergency room after a long visit for a scary but non-life-threatening situation. It was actually the second ER visit of the night–right after the first visit she’d fainted and fallen, and I’d rushed her back to the hospital. She had fallen on her rear end, but when she tried to describe the body part she couldn’t come up with the right term so she called it “my sit-down.” As much as I could rationalize even the worst of her confusion (such as getting lost on her way home from the doctor’s office), I had no response to this. It was something a child would say for want of learning the word, but no adult would “forget” it.

A few years ago I read a book called The Language Instinct by Steven Pinker, in which he claims that language-learning is directed primarily by instinct rather than culture. Memory, of course, is involved, but here I’m thinking of what might happen when the memory is progressively destroyed. Is there still an active “language instinct” that is losing the refinement it acquired over a lifetime? And can it compensate for the neurological disability in ways we haven’t discovered yet?

Tonight after dinner my mother patted her stomach and said, “I’m going to be adding gallons,” which shows that she knows she’s talking about weight and volume but the precise term is unavailable. My challenge has been to keep myself from withholding the correct word–I still want to make her come up with it, as if that will correct everything. I know now to give her the word she wants as soon as I can figure it out, but it’s still an effort for me.