The Yellow Wallpaper

My mother seems to have moved into a twilight place.  She is eating less and less, and sleeping almost all day.  The staff at Garden Manor are wonderful, as is Hospice.  She is always dressed (which must be an ordeal, since she can’t even stand up on her own) and someone has painted her nails and curled her hair.   She is usually sitting in one of the recliners in the common area, which makes me feel better.  I had once fantasized that I would take her home when this time came, but I would not be able to take care of her the way they do.

I feel like I’m dreaming.  It’s such a cliché, but that’s the way it feels.  I have spells when I question our decision to call Hospice.  But I’ve come to the conclusion that NOT calling Hospice is a decision, too.  My mother left an advance directive, which has helped us to plan her care, but you don’t realize all the “small” decisions that comprise carrying it out.  Do we continue the Namenda?  Do we stop the Coumadin?  What medications and measures are of a mindset that hopes for some improvement, or, at the very least, a warding off of the worst?  And does this mean that we are hurrying her along?

I suspect that some people look at me strangely when I tell them that I am NOT going to let her go to the hospital again.  As if to ask: “Who are YOU to make that decision?”

Well, I’m sure that my mother would prefer that I and my sister make such a decision, rather than anyone else.

In the meantime, my house is filthy and I’m missing a lot of workdays.  Mornings, in particular, are tough.  I wake up in the dark—before the doggies are awake—and I wonder how I’ll get through the day.   I remember, many years ago, an older friend telling me that it doesn’t matter how old you are when your mother dies—you still feel like a lost child.  I felt like this when I was in the first grade, and I didn’t want to go to school—my stomach churned and I thought I was going to cry.   I don’t like the feeling, but it reminds me of how deep and physical the bond is—which is strangely comforting.

My mother has now been living at Garden Manor for six months, and here is where we stand:

• On the Aid & Attendance front, I reapplied in late February–four months ago–and have not yet received a decision. I had originally sent the application to the Providence, RI, office of the VA, but received an acknowledgement from the Philadelphia office shortly thereafter so I imagine that’s where the application is sitting. I send them a printout of the cancelled check for my mother’s assisted living rent each month, just to remind them of my situation.

My question for them at this point is: If you won’t allow folks to apply for the benefit before they commit themselves to a care situation–forcing them to OVER-commit themselves financially while crossing their fingers and hoping they’ll receive the monthly benefit–how do you expect the average middle-class potential beneficiary to manage? I DO appreciate that the benefit is awarded retroactively, but my fingernails are chewed to the quick at the possibility that they will pull some little-known subclause out of the darkness and refuse my mother benefits. And my mother is in a relatively good situation: she has a decent pension, she is in a reasonably priced assisted living home, and–maybe most importantly, not to blow my own horn–she has a family member (me) who is stubborn, tenacious and may also have an inflated opinion of her own ability to get things done on her own.

She also had a healthy savings account (now practically gone) and a life insurance policy that I cashed in. It’s true that my mother has a house, which is not included when her total assets are assessed by the VA. I am holding on to it for now for several reasons. The first is that I believe she is entitled to the A&A benefit and this extra monthly income will cover her AL rent without my having to liquidate her property. My father served this country for almost three years on a small boat in the Pacific during World War II, and he is a perfect example of the veteran this benefit was created for. When he returned, both parents worked from Day One for this house. If I sell the house now, my mother will no longer qualify for Aid & Attendance–this logic might seem disingenuous, but we are facing a very open-ended illness. My mother is in good physical health right now, but I have to consider the possibility that the Alzheimer’s will carry her along until she needs a nursing home–which we CANNOT afford. I spoke to a professional from the local Alzheimer’s Association who recommended that, if and when the time comes for a nursing home, my mother should at least start off as a “private pay” resident, if possible. That’s where the house will come in.

• I began seeing a therapist about a month ago, after the depression and anger began interfering too much with both my work and home life. I was sleeping and eating too much, dreading the weekends and feeling totally overwhelmed. I couldn’t understand WHY this was happening now that my mother was in assisted living and I was back in my house. I’d expected a letdown but not this. I like this woman very much–she’s professional and warm–and so we talk about what I think and what I feel, which don’t always jive. And I’m gradually feeling better. I’m recognizing that while a situation can be tackled intellectually, I can’t always set an emotional timetable for myself. Acceptance, grief and letting go can’t be pencilled into a calendar. It’s messy, especially for someone like myself who is most comfortable with a script. Things aren’t always what they seem.

• My mother seems to be “home” most of the time at Garden Manor. Yesterday when I was visiting, one of the aides brought her her pills.  “She is always smiling,” the aide said to me.  Of course there are wrinkles–I try to get to the bottom of my mother’s anxiety when I sense it.  “What are you worried about right now?” I asked her yesterday.  “I think you’re hiding something from me,” she said.  I am, I suppose.  She still asks regularly about “Ma”–where is she, where does she live?  I think her anxiety is related to “Ma” but I’m still feeling my way around here.  Redirect is still the best advice.

So this is the six month state of affairs.  It’s still caregiving, but it’s a different kind of caregiving, for me.

My mother went to bed early tonight (about 7:30) but I can hear her up again, wandering into the kitchen, the living room. Today I told her that I’d arranged for her to move to assisted living, and I imagine that she’s unable to sleep because of that.

She responded in no uncertain terms that she did NOT want to leave this house, where she has lived for almost 60 years. Every bit of advice I’d received counseled me to be firm. Don’t ask her, tell her. I had rehearsed my words for weeks, wanting to couch my firmness in love and not bossiness. She made a face and then seemed to sink into herself. In the end I couldn’t help myself wanting to discuss it all with her: “What other option is there?” I asked after she agreed that I should move back to my house, but still resisted moving out. “Someone could live here with me,” she said. I finally caught myself and steered the conversation back to my direction.

Her move-in date is the day after tomorrow, the 28th. I deliberately said nothing about this over Christmas–I even invited our relatives over, despite my mother’s hesitation. We had a lovely Christmas Eve–lots of conversation and food. I didn’t sense my mother withdrawing, as she sometimes does when in a group. Afterwards she commented on what a nice time she’d had. I managed to let go of the ever-present anxiety and enjoyed myself, too.

However badly I handled things today, I DID back off a bit in the afternoon. I waited, and my mother finally raised the subject again this evening, when we were watching the news. “I can’t leave this house,” she repeated. I tried, once again, to be firm in my expression that, while I will always be her caregiver, I can no longer do it alone. She agreed with me, but clung to the untenable. I then told her about the AL–a former neighbor now lives there, although not in the AD unit–and about how it is NOT a nursing home: she would not be clipped to a body alarm and planted at the nurses’ station, how I could visit whenever I wanted and take her out, how they have a beauty salon, and exercises, and concerts, and that it’s located near our favorite ice cream stand beside a lake.

She seemed to soften a bit. I finally told her that I was doing what I felt my father wanted me to do, which brings up an interesting story.

The day before Christmas I visited my father’s grave. I usually just stand there and “talk” to him–I know I can do this anywhere, but I imagine his gravesite as being a spot where the signal is strongest. So I stood there on Sunday and asked him to help me do the right thing. I asked him to give me a sign (I can’t help it–I grew up Catholic. We love burning bushes and seeing images of Jesus in grilled cheese sandwiches). But I forgot about it as soon as I left the cemetery.

I’ve mentioned before that as I struggle with my faith, I often turn to the writings of Henri Nouwen. He finds active Christianity within the present world, in the way we live now. He identifies what the contemporary believer struggles with and responds to that with an often deceptively simple lesson. A scholar, he chose finally to work in Toronto’s L’Arche Community, a home for the most broken members of society.

I have a book of his called Our Greatest Gift: a Meditation on Dying and Caring. I read it through a few years ago, and now I sometimes pick it up and open it randomly, hoping that he will speak to a particular struggle of mine. I did this on Sunday–I opened the book to page 63-64 of my edition and read the first paragraph:

No, we shouldn’t try to care by ourselves. Caring is not an endurance test. We should, whenever possible, care together with others. It is the community of care that reminds the dying person of his or her belovedness…

[p. 64] When I reflect on my own community, the l’Arche Daybreak community in Toronto, I realize increasingly that what keeps us faithful to each other is our common commitment to care for people with mental disabilities. We are called to care together. No one in our community could care single-handedly for one of our disabled members. Not only would it be physically impossible, but it would quickly lead to physical and mental exhaustion. Together, however, we can create a caring space that is good, not only for those who receive care, but also for those who give it…It is essential to the weakest members of our community that those who care for them do so together…

I must say, I felt a little inner snap upon reading this. Especially since I’d hastily shoved the book in the middle of my bedside bookpile, and only when I accidentally kicked the pile over did this particular book remember itself to me after I’d come home from the cemetery.

So I do feel as if my father has whispered into my ear. It’s still going to be tough but I already feel less alone.

I’ve been doing a little research and here are a few facts:

According to the MetLife Mature Market Institute:

The 2006 average daily rate for a private room in a nursing home is $206 ($75,190 annually), a $3 or 1.5% increase over the 2005 rate of $203. In 2004 the rate was $192 daily. (from the MetLife Market Survey of Nursing Home & Home Care Costs, Sept. 2006)

From the Social Security Administration’s Office of Policy I learned that the median annual income in 2004 of the 75-79-year-old age group was $23912, and of the 80+ year-old group, $21271. Both groups include married and single, men and women. But if you look at the group most likely to need nursing home care–nonmarried women–the median annual incomes were $16429 and $16304, respectively.

The 2006 Federal Poverty Level for a family of 1 is $9800 per year.

Over 70% of nonmarried women 80 years and older make more than the FPL, but less than the average annual cost of a nursing home. So more than 70% of the female population in this most vulnerable group would be forced to impoverish themselves in order to be eligible for skilled nursing care, because their earnings exceed the poverty level but won’t buy them time in a nursing home.

Now I know I should adjust the income figures to 2006 levels, but it’s obvious that a couple of COLAs are not going to make a big difference in the overall picture.

On top of all this, consider that Medicaid was not meant to be “worked” this way, but it is, and one can understand why. Medicare does NOT take care of us.

My sister and I brought my mother home from the nursing home yesterday. Within two hours of her arrival she was fast asleep, and stayed that way, more or less, for the next 16 hours. I woke her up for her pills at one point but that was it. I probably should not have let her sleep that long–especially since she had just been treated for a pulmonary embolism–but I did. She awoke this morning moaning that her legs were aching–as I expected she would, after so much inactivity. I noticed that she wanted me to help her dress, having gotten used to that assistance in the nursing home. I did, and was pretty firm about getting her up and moving, despite her complaints.

Liz and I noticed a very definite change in her mood from the past few weeks. As upset and confused as she often was in the nursing home, she never seemed to be lethargic. After dressing and eating this morning, she flopped over on the couch in her familiar posture. After an hour or two of cajoling from us–Want to read the newspaper? Watch TV?–she ended up back in bed.

Her alertness improved as the day progressed, as usual. We gently questioned her about her experiences in the home. In her mind, she had been in college again, and she told us that she was supposed to have received “an award,” before graduating, but hadn’t. Several times she regretted aloud not having been given this award, but couldn’t tell us what it was or why she was getting it. She had been taken into a room and a “committee” had informed her of it, but she’d never gotten it.

The night before her discharge I had visited, as I often did, at dinnertime. My mother and another resident whose name was Claire (but whom my mother called “Dot”) seemed to have formed a special bond during the past few weeks, and this night they sat together at one table in the dining room. They were joined by my mother’s roommate Viola, a very sharp lady, and a sleeping gentleman named Italo. Claire had been preoccupied all day with the whereabouts of her car, a preoccupation that had escalated by the time dinner was served. She’d been asking me where the front of the building was, and at first I innocently pointed down the hallway. I realized shortly afterwards that she was formulating a plan to go check on her car, and she wanted my mother to go with her.

“Did we take the car when we came here?” she asked my mother several times.

“I think so,” my mother said, and it occurred to me that possibly Claire was aware that my mother would be leaving soon, and was expressing her own desire to go, too.

“I think it was stolen,” Claire said. “I’m going out to check on it. I have to go check on it. I think I left the keys in it.”

“It’s too dark and cold outside,” I said. “Why don’t you wait until tomorrow to check on it?”

“Can I get a ride with you?”

“Why don’t you finish your dinner first,” I said.

“But my car–did we come in my car today?” she asked again.

“I think so,” my mother repeated.

The diminutive Viola weighed in, waving her hand impatiently. In her wheelchair, she was barely at eye-level with her food. “Nobody comes here in a car! Everyone who comes here comes in an ambulance!” she asserted, before attempting, once again, to awaken Italo.

At this point, Claire pointed to my mother and then to herself, and made a “let’s get going” motion. Once again I attempted, without luck, to divert her attention. A nearby aide intervened then and promised to take Claire out to the parking lot to check on her car, LATER ON.

I did feel sad at separating my mother from Claire, even though she barely said good-bye in her haste to leave the next day. I had been privy to several of their conversations over the past couple of weeks. Although I could not often follow their train, I could see that the women were communicating in some way with each other. Each took the other at face value–when my mother would wonder (as she often did when sitting with the other “wanderers” by the nurses’ station) “when the party was going to begin and how were they going to feed all these people,” Claire would seriously consider this problem before answering.

This was my first real glimpse into the society that existed in this place. I’m embarrassed to say that I would walk into the nursing home and see its residents as “other”–removed from my society for one reason or another. But they have made their own society, with all its rules and nuances and affiliations, and it grows and diminishes with the arrival and departure of each resident. I think my mother was stimulated once again by finding her place in it.

My mother now says she is glad to be home, but then sighs, “Well, I guess that’s the end of school.”

“Weren’t there some good things about it?” I ask.

She immediately said Yes, and then began again to regret not receiving her mysterious award. She had regarded her fellow-residents as students, and I wondered what role she had played in their eyes.

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?

It’s Sunday morning and I’m still staying at my mother’s house. I’m trying to think of moving some of my belongings back to my house but I can’t until I know whether my mother will be able to move directly into AL from the nursing home. Part of this is just my natural caution and part is superstition. If I do too much to prepare, I’ll jinx it. The AL facility indicated that they may be able to accommodate her soon but nothing is definite. So I’m dangling here.

My mother seems to be adjusting to the nursing home. It’s hard to tell what her day is like because she has such a hard time articulating her thoughts. I think she’s begun to refer to herself in the third person, on top of everything, so her talk is a labyrinth of dream and reality, past and present. I believe that some of this is due to delerium on top of dementia, having seen this in my father when he was hospitalized. A gurney ride made him think he was on a train, and so we’d hear stories of his travels when we’d visit. Once he told us he’d watched a television show being filmed–as we listened to him I saw a nurse draw the curtain around one of his roommates’ bed and figured that was the source of his fantasy.

So I do think that some of my mother’s talk springs from her dislocation. On the other hand, she has not asked to go home lately. As we walk the halls, she waves at the staff and residents she passes. A woman emerged from her room and said to me, “We say good morning to each other every day. She’s so sweet.”

I’m not entirely surprised because I did think the socialization would be good for her, even though she still protests. The nurses often sit her by their station when she’s idle–she used to have a small body alarm clipped to her, but I don’t see that all the time. I think these are the folks who are either lonely in their rooms or prone to sudden urges to wander. The sight of them was a shock to me at first, but a couple of days ago I arrived to see my mother talking animatedly to the woman next to her. She was tapping the arm of her chair as she spoke. The other woman looked unimpressed but my mother continued, and when she saw me she said, “This is my daughter Debbie!” As we walked away, my mother said, “Okay, I’ll see you later,” and I realized that she sees these people differently. She’s in a mental place where they are not “other”–they are just folks she happens to be among at this moment in her puzzling world.

Her doctor had told my sister and me that we would have a harder adjustment than my mother, and while I don’t know that it’s true, I hope it is. I’m realizing that I’m mining something deeper than the stress of illness, bureaucracy and money. It hit me the other day that I might have to let go in order to help her most, at a time when I want to hang on to her even tighter. I’ve gone to bed a couple of nights thinking, “That’s it. She’s coming home, no matter what. I’ll do anything.” But how would that translate into practice? Do I sell my house and quit my job? I’ve thought of these options, but here’s where I hit bedrock. My job is one of my lifelines–I love the people I work with and I love the place I work. It keeps me afloat.

The other problem for me is that I am easily discouraged and prone to depression. I don’t have the self-motivation of so many of the caregivers I’ve come to know and admire. When I get overwhelmed I stay in bed. My mere presence is not going to make my mother happier or better, not with my temperment. I’m running on reserve tank right now.

So I’m waiting. I’m reading Sue Monk Kidd’s When the Heart Waits which is a meditation on a stressful period in her life. Here’s a wonderful passage:

This is an important principle in waiting: coming to the enormous realization that there are seed forces within us. The potential for wholeness, Life with a capital L, is fully here. We don’t have to go out in conquest and make it happen. We can simply let it happen, consciously.

Selah, as the Psalmist says.

My mother was transferred to the nursing home for rehab on Saturday. She was remarkably “with it” once we arrived. My sister and I were amazed. Of course there were spells of confused talk, but we stayed with her all afternoon, and then I returned for a couple of hours in the evening. I sat and knit, and we tried to talk over the blare of her roommate’s TV. At one point my mother actually said, “What a nice room!”

I, on the other hand, was blown away. I wanted to take her home with me again. I think I would probably have this reaction to any place I had to leave her, but it was accentuated by the contrast between the hospital and its attentive staff, and the slightly less-upscale nursing home with its overworked aides. We arrived, were taken to my mother’s room where a nurse did a quick intake checkup and then left us. She didn’t even have time to introduce us to the roommate, or to share any information about the daily routine. Luckily my mother’s roommate is a sweet woman who filled us in on the basics.

My mother’s room is as far from the nurses’ station as possible. When she had to go to the bathroom, we rang three times with no response, so Liz and I tried to get my mother up and over to the bathroom. But it was too late. My heart was sinking. And then across the hall is a particularly demented man who is verbally abusive to the staff, and especially to the African-American staff. All afternoon and evening he yelled the vilest profanities, all the while my mother’s lovely but hard-of-hearing roommate sat in her wheelchair and watched NFL football. She chatted with us at times, but after hearing her story of the 1938 hurricane for the third time, I needed to go home.

I returned this morning to find my mother “parked” with several other residents at the nurses’ station. She did not know where she was. I wheeled her back to her room and she seemed to calm down–I had brought muffins–and then I took her “walkering” up the hall and back. After this her mood darkened. Liz had arrived and all we sat together, my mother with her face in her hands. “I want to go home,” she said–I knew this would come but it’s got to be the hardest situation for me to face. When I left her (back at the nurses’ station–gloomy and sad) I wanted to cry. And I did cry, when I got home.

This is one of those days when it’s all just too much. Watching her decline, having to say No to her and knowing that she doesn’t understand, imagining her alone in that place. I just pray she will get decent physical therapy (I plan on visiting her everyday and making her walk, myself) so she can move to assisted living. But I know that I’m working through my grief at deciding to let her be taken care of by someone else, and it is hard.