The Yellow Wallpaper

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’ve begun several posts over the past week, and then found myself petering out very quickly. Each day begins on the wrong note as my mother becomes more and more anxious at being alone. She can no longer evaluate the situation and tell herself that Eva will be arriving at some point–her anxiety feeds on her confusion. She believes each day that she is supposed to “go to work,” even though I assure her that she has no such obligation. There are days when I resort to telling her that I will “call in sick” for her, which calms her down temporarily, until the next day. So I imagine that she wakes up to the classic bad dream, where she is stranded somewhere without any assistance or any means to get where she needs to be. And she can’t identify either place.

If my sister would step out of her fog and come over in the morning, we could avoid this routine. Or mitigate it. Or maybe not. I’m angry because my sister has the free time and yet she seems only to visit my mother when someone else is there. So again and again she shows up while Eva is on duty and then complains to me, “Why are we paying her?” I’m usually at work when she calls and complains, so I have to bite my tongue in order to maintain workplace decorum. I’ve asked her several times to come over earlier, after I leave for work and before Eva arrives, just so my mother won’t have to get up to an empty house. She decided last week that she was going to start doing this, a resolution that lasted two days. Now she’s back to the evasiveness. My sister shows up when she shows up, that’s that. I have to get it through my head that I cannot rely on her, I can’t let her get to me. It’s just so hard to keep from imagining how things could be a bit better for my mother.

I think Liz is afraid of the Alzheimer’s. She projects this fear onto Eva, which–according to her–is why she spends more time with my mother when Eva is there. She claims that she can tell how nervous Eva is at being alone with my mother, how bothered by her illness she is. So here we are. I probably should be paying Eva double-time, for being with my sister as well as with my mother.

The fact is, I just do not understand how someone can take this route. I know I should have some sympathy, but in my eyes, Liz is making an already tough situation extra tough by her refusal to face reality. If she’s scared–well–so am I. First, admit it. Second, arm yourself with knowledge and resolve to remind yourself that it isn’t as much your own ordeal as it is our mother’s ordeal. I’m going to get through this, but this is the final chapter of my mother’s life, and I refuse to take any measure primarily for my own convenience. (Well, maybe I’ll still take little ones, like using paper plates and bringing home take-out more than I ought to…)

If if sounds like I’m trying to convince myself, maybe I am. Now that we are in the nebulous, neither-here-nor-there zone, I’m trying to reorient myself. The truth is, there are more and more moments when I close my eyes and imagine myself back in my own house, alone, solitary. I’ll adopt another dog and sleep in my own bed and go back to eating the food I prefer and be able to go out without arranging for a sitter and wake up in the morning to peace. I won’t have to argue with my mother just to get her to wash her hair or remember her cane or eat her vegetables.

This is where I am, right now. Very preoccupied, very angry, very tired. As tough as it is, I need to push things this far, just to prove to myself that this arrangement is no longer working. My mother is depressed and anxious, and even though she dearly doesn’t want to move, I’m beginning to believe that a new, livelier setting might give her a little positive stimulation. And I’m realizing that she’s attached more to the routine than she is to any of its elements.

I didn’t make a conscious decision to take a hiatus from posting, and really didn’t notice that I’d withdrawn until Gail mentioned it to me in an email. But it’s true–I’ve felt so weighed down by everything that I haven’t had the spirit to write.

Today was an awful day. It didn’t start out that way–I left my mother in fairly good spirits when I went to work. I called her, as usual, at 9:30 AM to find her confused and struggling to communicate why. All I could understand was that she had gotten “a call” from someone who wanted her to do “three things.” She was a nervous wreck about it because she wasn’t sure what the things were or how she was going to do them.

I know now that situations like this one are most likely products of an offhand remark or a waking dream. I might have said something earlier about having to run errands today and my words had taken on a life of their own in my mother’s mind. We had a minor crisis last week when she misinterpreted what must have been a poorly-worded message about Eva’s arrival time as news that she was getting a new homemaker, and then wouldn’t open the front door when Eva arrived. But I no longer try to get to the root of the miscommunication because that rattles her more, reminds her of the broken synapses. Today I merely told her that it was MY job to take care of obligations like that, not to worry, and if anyone calls again she should phone me at work.

She seemed reassured by this today. I repeated my daily mantra: Now you just relax until Eva comes. She’ll be by in a little while. Then I promised to call her in a half hour.

So much of my own mental equilibrium is the result of me firmly (maybe even thickheadedly) keeping my own counsel, measuring what I see and hear against what I know and believe. In my mother’s case, this involves acknowledging to myself that–yes–leaving her alone for even a short time is risky, but because I still sense that she is aware of her surroundings and that they mean something to her, I’m taking the risk. Keeping my own counsel requires a certain stubbornness and myopia–if I let in too much of the outside world the whole thing collapses.

But that is what happened today. I won’t go into detail, except to say that when my sister blows in, with all her anxieties, willfulness and words, my mother often gets worse. My sister doesn’t know when to back off, doesn’t realize that her battering ram of questions and advice (Aren’t you going to comb your hair? Why are you just sitting there?) unnerves my mother, pushes her further into withdrawal. And then that mental deterioration becomes the rationale for the imperative to “do something.”

So my sister and I had a fight over the telephone. I was at work and I’m sure some of my coworkers overheard my angry tone. I know that my sister tries to help, but we are on such different tracks that I feel essentially alone with this giant burden. I want to give my mother any and every remaining bit of happiness that her life can offer. I know that my sister wants that, too, but she is going about it very differently. I ended up slamming the phone down.

As far as I know, my mother’s visit with Eva went well. My sister dropped by afterwards, though, and my mother ended up very agitated. She began again to worry about the “three things” and this time it was her oldest sister (several years gone) who wanted her to do them. When my telephone rang again at work later in the day, it was my sister, extremely upset. My mother now wanted to “go home.”

I’ve read that this is a common desire expressed by Alzheimer’s sufferers. I’ve been advised to understand it as a need for reassurance–it’s not necessary to make her understand that she is home, but rather to slow down, back off, reassure. This was the first time my mother had expressed this desire, though, and I think my sister wanted to rush her to the hospital immediately. And so I left work early, only because it was clear that Liz was as much of the problem as my mother was.

When I got home, my sister was talking NONSTOP and my mother looked extremely vacant and still. At one point, out of my mother’s earshot, I asked Liz not to keep questioning her and prodding her–just to back off. But she was on a tear, complicating even the most minor of decisions. My mother had an appointment with her nurse practitioner–Liz couldn’t decide whether to take her car, come with us in my car, what should she do, what should she do???

“I’m taking my car,” I snapped.

To complicate matters, I had called the home care agency to ask for more hours from Eva, and they returned my call at that moment. I was happy to know that Eva had agreed to arrive earlier on several days, but when I told Liz she began to argue with me. No, she said–she’d asked Eva and Eva had said NO, they must have gotten it wrong. She repeated this and I felt my equilibrium begin to totter. Reality is difficult enough to face without having to look at it through her perverse, doomsday perspective.

So here I am, hours later, trying to regain it. The nurse practitioner responded to our report of my mother’s day with a sympathetic look and a reminder of what we are dealing with. This is Alzheimer’s. When the confused behavior becomes too much of a risk she must be watched 24/7.

My mother’s desire to “go home” was a sign to me that more bonds are fraying, that home is becoming more and more the desire to have comforting people around her, all day, rather than these particular old walls. Familiarity is losing its connection to her memory and reasserting itself as a more immediate concept, no longer reliant on the past. So in a way, she might be helping me to see what she needs.

My father died in November, 1999, just two weeks before the 52nd anniversary of his wedding to my mother. My parents never had a real social group–both came from large families, so their brothers and sisters, along with a few neighbors, were the only people they spent any time with. My mother was 77 years old when my father died, and it was right after that when I remember the first signs of dementia.

Or maybe they were present before he died, but she was so absorbed in looking after him that none of us noticed. She handled his death, which happened very suddenly at home, extremely well, but our family suffered a remarkable strings of deaths during the year that followed. Two weeks after my father, the wife of one of my mother’s brothers died, and a little over a month after that, my mother’s sister died. About two months later, the following spring, my father’s sister died suddenly, and four months after that, the wife of one of my father’s brothers died after a long battle with Lou Gehrig’s Disease. My mother had been stoic throughout, but began to slide into a persistent depression. Over the next few years, another brother-in-law, yet another sister, and a niece of my mother’s followed. By this time my mother had been prescribed an antidepressant, and she had begun what has become a neverending complaint about her legs.

Although I didn’t realize it, my mother’s first distinct warning sign was her growing inability to handle her financial affairs. She had majored in math at college, and had always shared the family accounting responsibilities with my father. Statements and cancelled checks would be foldered and filed in the metal cabinet in the den. Her checking account was always balanced to the penny. But sometime before my father’s death, she had become enchanted by all the sweepstakes offers that drifted into their mailbox. The more she replied to Publishers’ Clearing House, Reader’s Digest and Time/Life, the more junk they sent her and the more mailing lists she was on. She bought all kinds of trinkets and coffee table books in the hopes that she would win the grand prize. My sister and I would roll our eyes each Super Bowl Sunday, when she fully expected the “Prize Patrol” to pull up in front of the house.

But what we considered mildly exasperating was getting more and more serious. In the fall of 2003 she received an overdraft notice from her bank. I thought it odd, since her account had overdraft protection, but guessed that it was a mistake. Unfortunately, it wasn’t: my mother had been writing checks to all kinds of twilight charities and bogus sweepstakes, and she’d used up her entire overdraft line of credit. By the time we got it straightened out, about six checks had bounced, costing her a further $200 or so dollars.

I took over her bill paying at that point–she could not understand what she’d done wrong, no matter how we explained it to her. I think I took over by finally telling her that I wanted to switch to online bill paying–it had all become a chore to her in any case, and so she readily agreed. I first tried to backtrack in the record-keeping by digging up her bank statements–which were all over the house–and cancelled checks (many were missing altogether) for the year. I calculated that she’d spent over a thousand dollars on “charities” with names that only sounded like the legitimate groups: the National Heart Association, for example. Many checks were made out to an acronym that I just couldn’t trace. On the other hand, her automobile insurance had been cancelled for nonpayment.

To make matters worse, in those pre-”Do Not Call Registry” days, she was getting daily telephone calls from foreign sweepstakes that were trying to swindle the so-called “winnings tax” out of her by promising to send her the prize. About a month before the Do Not Call Registry began taking names, someone called pretending to be a Registry representative and told her she needed to pay $350 to have her name taken off the marketers’ lists. She gave them her checking account number over the phone. (Note: in Rhode Island, unless the bank has a copy of a signed receipt or a tape recording of assent, they must reimburse the account holder whatever money was electronically debited.)

I did not once entertain the idea that dementia was involved. I told myself it was her age, her tendency to trust strangers, all the newfangled bank fees and procedures. I traipsed to the bank each time something needed to be undone and undid it.

Fortunately I did make an appointment with a lawyer who had an arrangement with AARP, in order to have my mother’s will made out. This lawyer, God bless her, suggested that she might want to think about granting me durable power of attorney, and my sister a medical proxy, which she did and which has made the subsequent trouble a lot less awful than it might have been. AARP members can have a simple will drawn by a participating attorney for a very modest fee (I think it was $50 about four years ago)–more than worth the annual membership fee.

In early 2004–February 25, to be exact–my telephone rang at about 10 PM. It was my mother, wanting to know if that day had been my sister’s birthday. I told her she was a month early but after hanging up, I felt the first wave of a queasiness I have since come to know well. I managed to shake the feeling. A few months later, my mother was having a bout of serious anxiety and arranged to see her doctor at 2 PM one afternoon. When she wasn’t home by 5 PM I set out to find her, stopping first at the pharmacy, in case she’d had to pick up some medicine. Not there. I retraced the route to the doctor’s office. No sign of her. I was in a panic until I finally got in touch with her by phone at home. She was rattled–she had pulled out of her doctor’s parking lot and turned in the wrong direction. We never figured out precisely where she ended up–but she’d gotten lost in the state she’s lived in all her life, and it took her nearly three hours to make a 20-minute drive home.

I think this was when I first allowed myself to consider that something more than “old age” might be occurring, but I still wasn’t thinking of dementia.

As I was piling the laundry into the basket this afternoon my mother, who was lying on the bed, said to me: “Oh–Happy Birthday.” Today is my birthday, actually, and I think she first remembered it at that moment, but the setting was comic. It’s silly of me to expect the day to be a little different, especially in the present situation, but I do, and it was. Today was different because I was a little more disappointed than usual, despite my best intentions. I’m trying to chip away at my expectations until nearly everything beyond the necessities is a pleasant surprise, but it’s not working. I was hurt that my sister–who has quite a bit of free time, being between jobs–did not so much as mention my birthday or get me a card. I had even fantasized that she might offer to do just one of the weekend chores that keep me busy on Saturday and Sunday, to give me time to go to a movie or to get out by myself. No money would be involved, just a little time–but apparently still too expensive.

The result of all this was that I might have actually gotten disappointed enough to reach, temporarily, what I will call “Caregiver’s Nirvana.” I don’t know if I’ve ever achieved this before, or ever will again–maybe you have to be supremely and justifiably disappointed to reach it. But it’s the state where you let go of both the need to please and the hope of being pleased–you realize that you are not responsible for someone else’s problems or for alleviating them–even a problem like Alzheimer’s Disease. It’s not an angry or bitter realization, and it doesn’t mean that you would refuse to throw a lifepreserver to a drowning person. But it means that you become disenchanted with the idea of being “the good one” and clearly see yourself as a person with needs, too.

I imagine that every caregiver’s nirvana would be a little different–depending upon what she is most attached to. I’m learning how attached I am to being the Caregiver, and maybe that’s not a good thing. Oddly enough, it puts me, rather than my mother, front and center all the time. It’s all about how I decide to handle things, what I am going to do and what I am going through. A small example: I turned on the television and for once, did not ask my mother what she wanted to watch. She usually says, “I don’t care,” but will express her dislike of anything I choose that she becomes bored with. But today I turned on PBS’s “Mystery,” because it looked interesting and despite the fact that I know any show featuring actors with British accents is as appealing to my mother as exhaust fumes. Predictably, she began to fidget and then disappeared. She returned briefly, only to disappear again when I did not ask her if she wanted me to change the channel. Usually this outcome would mean that I had done something wrong, as if my mother were just an expression of my own psychic health. But I thought, “Why shouldn’t I watch ‘Mystery’? And what if my actions disappoint her?” So I watched it, and the show after it–the first time I remember watching “my” programs before my mother had gone to bed.

So that example might put into perspective my nirvana episode. My nirvana is probably what the theoretical “well adjusted” person feels all the time: a balance of needs and a healthy tolerance of what is beyond her control. Which brings me back to my sister–although I do feel that she could spend more time with my mother, especially since she has nearly every day free, I probably also expect her to feel the way I habitually do about caregiving, which isn’t fair.

I’ve been reading My Mother’s Journey and having a conversation with Bailey, its author, about the gradual reversal in roles between our mothers and ourselves. We have both discovered that our own illnesses can bring out the maternal impulse that our Moms still possess–in my case, I’ve actually found myself “milking” the illness (which is usually a migraine) just to reassert the normal relationship, at least for a short while.

Her post of today is a perfect example of one point on the long journey of role reversal, and of its impact on both her and her Mom.

Interestingly, I had a parallel experience.  I always wake my mother up at 7:15, before I go to work, just to let her know where I will be.  Then I call her at 9:30 a.m. to check in.  She knows my voice on the telephone, so I don’t identify myself–I usually ask her if she’s dressed, and has she eaten breakfast and taken her medicine?  Today she wondered, “Where did Ma go this morning?”  Instead of my usual reply–”YOU’RE my Mom”–I heard myself say, “I’m at work.”  As I commented to Bailey, I didn’t intend to play along, but the words popped out before I could consider them–they seemed right, at that moment.  And my mother replied, “Oh, that’s right,” letting the subject drop.

I went to Catholic school as a kid, and I was one of those neurotic kids who hated to leave the house. I must have made life difficult for my parents because I was always feeling sick in the morning. When my mother would make my lunch she’d write a little poem on a piece of paper and put it into my lunchbox to cheer me up. The first time she did this I was embarrassed and told my friends that it was a grocery list. But I now wish I had saved some of those lunchbox poems.

I look back and realize how much I owe to both my parents. They were good people in general, but they were also perfect parents for me: their extremely sensitive oldest daughter. I worried about everything–whether it was going on class retreat or going to hell. Even as a child I examined the implications of everything–there are snapshots of me with my brow furrowed as early as age 5, considering, no doubt, the anguish of having eventually to leave home.

My parents were a God-given corrective to the strict Catholic world of the nuns who taught at my school. I now see that this was the worldview of the 1950’s–a frightening combination of Cold War and Roman Catholic strictures. I was in the 5th grade during the Cuban Missile Crisis, and the nuns used that opportunity to try to scare us–a class of 10-year-olds–into the possibility of being martyred for our faith. (Another example of the grip that dependence has on a child’s mind–being afraid that the Soviet army would march right up the Eastern Seaboard, past Washington, past New York, right into Centredale, Rhode Island, to the 5th grade at St. Lawrence School to line us up against the gym wall and challenge our faith.) My father sat up with me on several occasions after that when I couldn’t sleep, reassuring me that this was extremely unlikely to happen.

My mother was an elementary school teacher, and so she knew how to make special occasions for me out of ordinary days. She kept a stash of coloring books in her closet for the days when I was home sick. She’d crumble up the stale bread and put it out in the yard for the birds, and we’d watch them eat from the kitchen window. On other days, my mother would crumple up a big piece of paper, tie a string around it, and give it to me to tempt Puddy–our neighbor’s big tabby–with. Puddy liked to hide in the bushes, and I’d see one impatient paw dart out of the leaves when I dragged it along; then, overcome with desire, Puddy would jump out and chase the paper.

I’ve always considered myself to be more like my father: someone who likes to be alone at home with her books and music and family. But now I’m hoping a little of my mother’s caretaking nature has rubbed off on me, so I can return some of her love in kind.

Today was the wedding day. Last night I hemmed the pants to my mother’s new pantsuit, and then I set her hair with the new sponge rollers I’d bought. At some point she began to confuse today’s event with a graduation, and wanted to know whether all the students would be there to get their degrees. I had to correct her several times on this point, and I’m not sure why she made the mental shift to a graduation. Of course the newspaper has been chock full of high school and college graduations, and maybe she merged the two. My cousin, the groom, had asked my mother in better days if she would bring some flowers up to the altar in memory of his mother, her sister, during the ceremony. As her dementia worsened she began to obsess about this request and it seemed to take on a life of its own: I think she equated walking up to the altar with the flowers and going up to a podium to get a degree. Despite my assurances that she was no longer expected to walk up to the altar she continued to worry.

But last night she seemed pretty sanguine about it all, and I hoped this would carry over to this morning, but it was not to be. I was very careful not to be pushy–I brought her her pills and reminded her that today was “the day” (she had actually forgotten). Mornings are not good for her under the best of circumstances and I could tell at that point that she wasn’t going to go. Oddly enough, she seemed more alert than she usually is in the morning, but she just did not want to go. And I’m learning that when the emotional course is set, there is usually little hope of renavigating.

To make matters worse, my sister is–as I mentioned to my friend Paula–establishing some “behavioral distance,” which is something like the sibling who is not in the same zip code but still has a lot to say.  Liz, I know, is having much trouble facing my mother’s illness, and on top of that, she has some longstanding demons to fight.  But her behavior makes it harder for me.  For example, I ended up attending the wedding alone today not out of sheer obligation but because these are family members who mean a lot to me and who are involved in my mother’s life.  The groom gave the eulogy at my father’s funeral, even though he’s from my mother’s side of the family.  My sister had decided sometime during the week that she just wasn’t going to go to the wedding, but she did not tell me.  I called her last night (when I had hope that the three of us would attend) and that’s when she admitted her plans.  Now this is someone who calls me for every little thing–but not for this?  On top of that, because I had to leave my mother alone I left the wedding early–which made me sad because it was an additional “slight” in my mind to the family, the first being that my sister was a no-show.  She might have offered to stop by and hang out with my mother for awhile, but all she’s offered is an odd silence.

It seems to me that a secondary stress of caregiving nearly always involves sibling stress. The pressures of being on the frontline make the “primary caregiver” preternaturally aware of how each piece fits into place, and how much time it takes to do the fitting, something secondary caregivers aren’t aware of unless they make the effort to know.  I wonder if there are situations where responsiblities are truly shared?

Oh, the wedding was lovely.  As I’ve mentioned, it took place in an old Baptist meeting house on a beach road leading to the South Ferry landing in Narragansett, Rhode Island. Today was an exceptionally rainy day but it let up just a bit after the ceremony, and we could all schmooze in front of the church.  I guess because I’m losing mine I feel particularly sensitive to family these days.  My parents’ generation is almost gone and I’m more inclined to stay close to the cousins I have in the area.  Both parents came from large families, so I have quite a few first cousins, and now they have families (grandchildren, in some cases), and it’s nice to get to know them as adults.  What used to be an ordeal for me (family gatherings) is now important, which is why I went to the wedding today.  Again, it comes down to the past–the shared past that also holds the present together.