The Yellow Wallpaper

My mother in into her third week at Garden Manor, and I can see that she’s settling in. She has a couple of friends she often sits with and she’s gone on a couple of outings. Last week she had her hair cut and permed.

Visiting remains difficult, for both of us, I think. When she sees Liz or me, she begins her lament: she’s anxious, she cries, she has nothing to do, the food is awful, she wishes God would take her, and Why are you being so mean to me? The past few times she’s had her belongings–pictures and clothes–all ready to be packed up. She commands and then she pleads to be taken home.

I’m still working on the timing. I’d been going everyday until last Thursday, when I had the much-anticipated post-traumatic migraine, and apparently she got very agitated when no one showed up. Liz had called to let the staff know that we weren’t coming, but the message got lost in the shift change. When we arrived the following day she demanded to know why we’d deserted her “for days.” We’ve talked to several of the CNA’s and they’ve suggested we come every other day, and at different times of the day, if possible, so my mother doesn’t get stuck in the routine of expecting us at 4 PM. They say the rest of the time she does well.

All I can say is that the caregiving books are right, as far as I’m concerned. I expected the relief to counterbalance the grief/guilt, but not yet. I still go over the situation again and again, wondering if I did the right thing. Worrying if she’s getting her medicine, feeling lonely. I do have moments when I pinch myself because I can run an errand without worrying about her. But all in all, it’s still very odd for me–I can’t settle into my own home until she accepts hers.

We had one visit last weekend that was different. I arrived earlier than usual–about 1 PM–and found her door closed. She was in bed, and I’m not sure whether she was confused about the time of day, or whether she had actually decided to take a nap. I got her up and then sat with her awhile. She was a bit more disoriented than usual, but was also calmer. She never complained or asked to go home. She seemed relaxed and happy to see me, and I stayed for an hour and a half. We talked about her day, and then she finally suggested that I go.

I wondered afterwards if her disorientation had helped her to relocate, if only for that one day. I don’t know what to wish for, at this point. I want her to feel comfortable and secure, but does that mean moving deeper into the dementia?

This is the first entry I’ve written from my own home. Last night was the first time in two years that I’ve slept in my own bed. I’m having a decidedly mixed reaction to the present. My mother moved into her assisted living unit on Thursday, an experience that lived up to all expectations. I haven’t visited her yet, on the advice of the staff, but I’ve talked twice to her on the telephone. She is extremely angry at me. The staff tell me that she is doing quite well–although not participating yet in activities–and has interacted with the other residents on her unit. But it’ll be a long while before she forgives me.

I’ve gone over this and every other option in my head time and time again, and so I know that this is the best I can do for her, given her illness. But I still feel guilty and sad. Guilty and sad, over and over again.

Christmas was tough, knowing what was going to happen afterwards but having to keep it to myself. I told her on the day after Christmas that I’d be moving home on Thursday, and that I had no intention of leaving her alone in the house, so I’d made the arrangements for her at Garden Manor. She told me again that she would never leave her home, but softened when I described the place. I went to bed that night with a good feeling.

I spent most of the following day at the Manor, to see her new furniture delivered. (Her own bed was too large for the room, but buying new furniture worked out well. Her old furniture was pretty sad looking, and the new furniture could be delivered without her being disrupted.) I ran to Target and bought a comforter and several other necessities, then returned and organized her half of the room. (She is sharing with another woman.) I left the place with a very positive feeling. There are only 20 residents on her unit, and several of them were around, including a very flirtatious gentleman who kissed my hand. One of the CNA’s assigned to my mother–Donna–showed me around and warned me about my mother’s probable reaction to moving in. As I left I saw a group of residents sitting in the common area where a staff member was leading a discussion about George Burns.

The following morning–moving day–my mother rose and dressed and ate breakfast. I told her that I’d be moving home that day and that she would be staying at Garden Manor. She meekly said, “Okay,” and I made eyes at my sister, amazed that it would all be so trouble-free.

But it wasn’t. I should have swept her up at that very moment and taken her, but I gave her enough time to muster her resistance. About an hour later she told me that she’d decided that she wasn’t going to go. She was going to get someone to live with her in her house. She would not leave her house.

I made the mistake of trying to convince her, and then of bullying her. Neither tactic worked. She lay down on her bed in resignation and refused to go.

I sent a couple of desperate emails to the admissions lady at Garden Manor, and then went into my room and closed the door. I had a bit of a cry, over the bleakness of the situation and over the prospect of spending another day in this state of emotional suspension. I was relying heavily on my plans, I was longing for some respite from my caregiving, and there seemed to be nothing I could do.

Finally I got up and went into my mother’s room. I found a pair of socks and shoes, and said: “Here, let’s put these on.” She did, and I then got her coat. “Come on, let’s put this on,” I said. “We’ll just drive past the place, so you can see it.” “I’m not moving in there,” she said, putting on the coat. “I don’t have any make-up on,” she fretted as she moved toward the door. I nearly dragged my sister out of the den–she had given up on getting my mother out and was watching TV. “Get your coat–we’re going,” I shouted as my mother and I passed.

I tried to be firm but not dictatorial. We made the ten minute drive and parked at the front door of the Manor. While Liz helped my mother out of the car, I ran ahead and found the nurse manager, who took my mother’s arm and walked her to the unit. My mother looked a little shell-shocked but also pleased at the attention. We were met by Donna, who fussed over my mother as we showed her to her room. The unit is cheerful without being overwhelming: soft colors and calm lighting, with lots of room to walk around and a beautiful common room with comfortable chairs, a TV, a piano and a table for jigsaw puzzles. Its many windows overlook over the woods that surround the buildings of the facility.

“I’m not staying,” my mother said, once she was sitting in the new upholstered swivel rocker in her room. She looked at me. “How can you do this to me?” she said angrily.

This was the time to go. I told her I loved her and gave her a kiss–Liz did the same. Before we left, Donna gave me a big hug and told me that I was doing the right thing. “We’re going to take good care of her,” she said.

In our rush to get out we hadn’t even packed her clothes, so we now returned home and got them together, then went back to the Manor. I brought them in and left them with the nurse, who told me that my mother was already sitting with some of the other residents in the common room, watching TV. Liz and I then drove back to my mother’s house, where we drank wine and ate Christmas leftovers. The utter exhaustion took over then, and the bewilderment.

No matter how you plan, you just don’t factor in the muddle of emotions that follow doing this. A certain relief, some grief at what you can and can’t control, and sadness at having moved one step further toward what terrifies you.

So I’m having some trouble organizing myself right now. My house and yard are a mess, but I don’t know what to do first. The downstairs toilet overflowed this morning, leaving a small lagoon in my kitchen, and this paralyzed me. I went to Home Depot and threw anything that looked even remotely useful into my cart, worrying all the time about getting home in time. In time for what? Another habit to break. I then did some food shopping, trying to remember what I used to buy before I assumed my mother’s eating habits.

So I’m certainly not giving up the one-day-at-a-time mantra. This is the interim between the old way of caregiving and the new way. Out with the old and in with the new, as they say at this time of year.

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 wonder how long my mother will be this angry at me. When I arrived today she began immediately: I have no money, This is awful, Why are you doing this to me? I tried to remember not to argue, not to reason–which is so much harder than I imagined. I’d arrived shortly before the time that Mass is said in the chapel, and I tried to divert her with that. Her walker had disappeared so we made our slow (sullen) way in that direction. Once we sat down she announced that if she had a knife, she’d kill herself. I exhaled and tried to calm myself down.

This is hell, she continued. Do you enjoy doing this to me? I don’t understand why I’m here.

I don’t know where to go with this. I don’t know how to answer her without appealing to her reason. The doctor wants you to stay here until you feel better, I say. What does he have to do with it? she demands. He wants you to stay here until you feel better, I repeat. Where? she says.

The Mass did nothing to soften her mood. As she walked with me afterwards to the library she remained angry–except for a moment when we passed one of the nurses in the hall and my mother smiled and rubbed her arm affectionately. In the library I took out a jigsaw puzzle and asked my mother to help me with it, but she refused. I played with it while she continued her accusations. At one point I nearly fell off my chair when she told me she had been raped the night before. Who did that to you? I said. They all did. You would be very upset if I told you about it. At this point she was saying her rosary, and I felt so helpless. I know she wants to be home, she doesn’t want to be in this unfamiliar place, she’s scared of what is happening to her–and I have no way of reassuring her. I thought that returning each day would remind her that I am not abandoning her, but I don’t think it does.

I left shortly after that, and before stepping on the elevator I looked back and saw her sitting at the nurses’ station, talking animatedly to the woman beside her. She may have been telling her about the evil daughter who won’t take her home–I don’t know. I was relieved to be away from her accusations and pleadings. “It’s the disease talking,” I said to myself several times as I drove away, but I kept thinking of a poem by W.B. Yeats, Among Schoolchildren, specifically its final lines:

O chestnut-tree, great-rooted blossomer,
Are you the leaf, the blossom or the bole?
O body swayed to music, O brightening glance,
How can we know the dancer from the dance?

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.

My mother remains hospitalized, and we now know that she has a pulmonary embolism, no doubt the result of Deep Vein Thrombosis. Another reason to keep the legs moving. The good news is that she is doing quite well–she is alert and her skin has color. She’ll probably be in for another couple of days, until she can transition from the heparin to the warfarin. Under normal circumstances this would be a relief, but of course these circumstances are not quite normal.

What I do know is that she will require two weeks of rehab in a nursing home, but I don’t know which one. I certainly have my preferences but it worries me that the case manager hasn’t gotten back to me yet on this. I’ve reviewed the state ratings and I’m so afraid that the only beds available will be in the lowest-rated homes. Another reason to consider ALL possibilities when preparing for “placement”, as they call it. I had barely considered nursing homes because my mother is so healthy. And–to be honest–I’ll confess that I have a “One Flew Over the Cuckoo’s Nest” idea of nursing homes, I am sorry to say. That’s my ignorance, I know.

And then there’s the uncertainty of her diagnosis. As I mentioned, if she gets back on her feet, and the only factor is the Alzheimer’s, she WILL NOT be eligible for nursing home care after Medicare runs out. So we’ll be back to waiting for an assisted living opening. In a nice little irony, the facility I’d waitlisted her for called me yesterday to tell me they have a bed for her this week, which I had to decline. My worry in all of this is unnecessary moving from one facility to another–and maybe back home again.

The “not knowing” creates quite an emotional strain for all of us, my mother included, even though she is not able to understand the implications. At least three times an hour during our visits she tries to get up and leave. We tell her that she was very sick and that she needs to get all the medicine into her (here we point at the IV) in order to get well. She complies, only to make the same move twenty minutes later.

One bright side is that the nurses and aides love her. One nurse in particular–who cared for her own mother throughout her AD–comes in at the beginning of her shift and gives my mother a kiss and strokes her face. The other night she washed my mother’s hair (which hasn’t been cut in awhile) and then French-braided it. All in all, the hospital staff has been beyond wonderful. My mother’s rosary beads went missing (probably wadded up with the bedding and sent to the laundry), so my sister asked the head of housekeeping for the unit to keep an eye out for them. This woman did more than that–she got the hospital chaplain (it’s a Catholic hospital) to visit my mother with a new pair. When I brought my knitting (still the Bohus sweater) with me today to pass the time, one nurse admired it and sent several others into the room to see it.

So the lesson for me here is that an institution can be one thing or another, depending upon the personal interaction between me and the staff. My sister and I have asked each staff person his or her name, and tried to chat with them. A couple who seemed a bit brusque have opened up–one nurse in particular, we learned, is caring for her own elderly mother after heart surgery, and so we’ve tried to ask after her mother’s health. Today when she came on duty she visited my mother and took her face in her hands and said, “How’s my sweetie?” I was taken aback–but in a good way.

I’m still a nervous wreck, but I’m seeing how my mother reacts to this care. My sister and I have spent at least four hours with her each day, trying to reassure her that we are still around–and while she still talks about “getting going”, she doesn’t get as agitated and upset about it as she did the first night. Actually experiencing the way my involvement might improve her care has been illuminating, and this lifts my anxiety for stretches of time.

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 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.

I returned to work today, after two whole days of being unable to control my tears. Although I dreaded the day I’d have to say good-bye to my beautiful boy, I was still unprepared for the torrent of grief that followed. I am extremely fortunate to work with many animal lovers–people who actually cried with me today, left me consoling notes and one dear friend who made a donation to Dogs for the Deaf in memory of Dustin.

The experience of grief at the loss of an animal is something I’ve been thinking about a lot the past few days. I think the nature of the relationship (for many of us) cultivates these feelings. The “Dog Whisperer” would have a field day with me because, while I do understand at some level that these creatures are not human, I still invest them with human emotions at levels no human could ever sustain. Dustin followed me from room to room, he was jealous of any attention I gave Lily and would physically insert himself between us if he could. And there was no guile, no ulterior motive. He was devoted to me (I tell myself) and how on earth could I return that devotion while he was around, or replace it now that he’s gone?

So I’ve been having these very Victorian urges to sleep with his collar and tags under my pillow, and save tufts of his fur as keepsakes. (Both of which I’ve done.) I know I’m not the only one who feels this way, just from a cursory search of the internet for “pet memorials” and it’s interesting (and takes my mind off the maudlin stuff) to think about why I feel this way.

And so I can’t help but think that my dogs have increasingly become my emotional mirrors, now that my mother is growing more and more perplexed. This situation in particular–my sadness over a dead pet–is extra poignant because the one person to whom I’d always go when my heart was broken is no longer available. I can tell she is aware that something has happened to upset me, but it’s impossible for me to understand what she thinks. She still reacts to my tears, but in an unsettled rather than a consoling manner. “What’s the matter?” she’s asked, keeping her physical distance. She doesn’t like it when I’m not “status quo.” And when I do manage to control myself she acts as if nothing has happened–she never mentions Dustin.

Actually, though, she did do something odd today. Eva had the day off so my sister spent some time with my mother. When she arrived at noon, she found Lily lying in the living room, surrounded by four bowls FULL of dog kibble. In addition, my mother had added water to the kibble, which caused it to expand to twice its size. She’s never done this before–I always leave the dogs’ “lunch” in the refrigerator, and she has always known enough to take it out and give it to them. Today was no different, only she told my sister that she had to feed “all of them” so she put the extra bowls out.

My sister called me at work to tell me this, and I’ll confess that we had a chuckle over Lily’s seeming paralysis in the face of her luncheon buffet. When I got home, the bowls were in the refrigerator. “What are these?” I asked my mother. She smiled oddly and shook her head, as if to say “Beats me.”

I talked with a coworker today about my mother’s reaction to Dustin’s absence. “How hard that must be for you,” he said. “It’s hard enough to go through it alone, but to be with someone who can’t see it must be extra tough.”

And I thought, That’s it. It’s like being on the viewing side of a two-way mirror and trying to get the attention of the person I see on the other side, while all she can see of me is a dark, imperfectly-reflective flat surface.