The Yellow Wallpaper

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 was just over at the Alzheimer’s Association Caregiver Forum where someone had posted a message about the caregiver’s stages. I think I passed from one stage to the next on Sunday night, in a matter of minutes. I had a meltdown right in front of my mother (which I had tried never to do) and although it seemed to come out of the blue, these transitions never do.

It doesn’t really matter what specifically precipitated it, because it could–and would–have been anything. In an instant I knew I was going to start crying, in a way I hadn’t cried since my Dustin died, so I went into my bedroom and lay down in the dark. But I can’t close the bedroom door without arousing my mother’s curiousity and I couldn’t keep myself quiet, so she followed me in. I just let it all out, and she tried to comfort me and understand why I was so upset. Of course I can’t tell her that she is the reason I’m sad.

Well, it’s actually not that simple. The real problem is that I cannot get it into my head that I can’t have a rational discussion with her about assisted living. I tried again on Sunday afternoon, using the “I’d like to move back into my house” tack. Of course you do, she said, as she always does. I can’t leave you alone, I said. She agreed with me on this until I suggested, once again, that she move somewhere where she’d always have someone around, even when I’m at work. I would never do that, she replied.

How do people do this? Why does it have to be so awful? I know I sound like an 8-year-old, but I also feel like one. Old enough to know there’s something dreadful afoot but too powerless to combat it. And I think I reverted to my 8-year-old bag of tricks when I burst into tears later in the evening.

I’ve read the most moving and heartbreaking personal accounts of how loving family members moved their moms and dads into assisted living or nursing homes. Nearly all of these accounts caused intense grief at first, even though most of the moves resulted in an improved situation for all. Almost everyone I’ve spoken to says they wish they had done it sooner, but I understand how one can believe that remaining in one’s home is best. It’s still excruciating.

Another issue is that I’m into my third week away from work, and Thanksgiving is coming up in a couple of days–it doesn’t look like we’ll be spending it with family, which disappoints me. And Saturday was the seventh anniversary of my father’s death. And my 13-year-old dog Lily is having increasing difficulty getting around–am I just hanging on to her because I’m afraid of losing one more part of my life?

So my mother is now following me around, worrying that I may be “coming down with something” and wanting to help, which is sweet but also accentuates how our relationship has changed. Tonight she said good-night at least five times, each time telling me that she was going to leave her door open during the night in case I needed her. I feel my eyes well up, just writing that.

I was still very upset today, so I called the local Alzheimer’s Association and talked to the social worker there, who sounds wonderful. I made an appointment to talk with her, which I should have done much sooner than now. I have a med appointment tomorrow with my longterm psychiatrist and I’ll ask him to refer me to a therapist. Can’t do this much longer.

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.

Today was a good day, and I had forgotten what it feels like to go the whole day without the knot in my gut. The weather was lovely–bright and warm and dry, perfectly summer-like. When I made the first call to my mother at 9:30 AM she was alert and in a good mood. (Oddly enough, though, I discovered that she hadn’t taken her pills this morning…) I called her again shortly after noon, when Eva was there, and she seemed downright cheerful. They were playing a little Scrabble before lunch.

I hung up and left the library for my lunch break, treating myself to an iced mocha latte and a short walk. I spotted a mimosa tree in bloom, which is always a pleasure, and the perfect absence of any film crews on campus made my day.

At about 2:30 PM my mother called me at work, still very cheerful. “I lost one of the dogs,” she said. “I’d like to lie down and take a nap, but I’ve been looking everywhere and I can only find three of them.”

“How many are you looking for?” I asked. I have only two dogs.

“Four,” she said.

I’ve mentioned this in previous posts and I’m surprised that I haven’t read too much about it in the Alzheimer literature, but my mother’s mind frequently multiplies people (and dogs) in their absence. I don’t really think she sees multiple beings, but they seem to leave multiple nagging afterimages.

I now asked her to tell me which dogs she could actually account for. “Is there a black dog?” I asked.

“Yes, right here and in the other room, I think.”

“And what about the brown dog–is he there?”

“Yes,” she said, “he’s right here but I can’t find the other one and I’m getting tired.”

I fell back on my standard response. “Well, don’t worry about it now. He couldn’t have gone far. I’ll be home soon to find him–you can lie down now.”

These words did indeed reassure her. I thought about it afterwards and recalled that my mother very often confuses the names and genders of the dogs. I wonder if each misreading leaves an afterimage, and that afterimage takes on a life of its own in her mind. By the same token, she sometimes confuses me in my absence with my father or her mother, and often speaks to me as if I were her sister. Each one of those roles might add to the population of her imagined household. Lately she’s been asking me before going to bed if anyone else was expected home and if I say no, she’s puzzled. “Just the two of us?” she says.

Just the two of us, I reply.

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.