The Yellow Wallpaper

Today bears the same date as the day my mother died, but that day will always be a Tuesday to me.  It felt like a Tuesday.  Or maybe Tuesdays will always feel like that day, which was sunny in that extra bright early spring way.  No leaves on the trees yet, exposing the squirrels and birds as they reorganized.  Daffodils all over the place but not yet the lush green of deep spring.

I’m still surprised at times to realize that she’s gone.  Seeing her name on the grave marker was probably as close as I’ve come to fully realizing her death. I think I’ve used the phrase “suspension of disbelief” before–Coleridge coined the phrase to refer to a reader’s response to the fantastic in an otherwise credible story.  If a story resonates with the reader she is likely to accept such elements as the supernatural or chronological discrepancies.  Something like that is going on with me, I think.  Placing flowers on her grave is one way of suspending disbelief.  Giving away her clothing is another.  Despite it all there is something still alive.

So I find myself feeling like a tightrope walker without a net, now that both parents are gone. I don’t have much more to say than that right now, but the date needed to be marked.

Next Monday will be the seven-month anniversary of my mother’s death.  Strangely enough, it seems to me that even more time has passed since that day, and I have no idea why.  I remember a dear older friend telling me many years ago about her own mother’s recent death–”It doesn’t matter how old you are,” she said, “when your mother dies, you feel like an orphan.”  I was in my late twenties at the time but her words had a lasting effect on me.  The prospect of either of my parents dying was safely in the future, but hearing this from someone considerably older than I was unsettling.  I had expected that I would somehow be armed and ready to face my parents’ deaths by the time I’d reached my friend’s age.

My father died nine years ago, very suddenly but not entirely unexpectedly.  He had been diagnosed with congestive heart failure the year before, and one morning in November, a week after his eightieth birthday, he collapsed at home.  He was doing what he loved to do, puttering around the house with my mother nearby.  He did not have an advance directive–the EMT’s were called and he was rushed to the hospital but I think he had died before they put him on the stretcher.  Thank God.  As incredible as his death was to me, I was deeply grateful that it had been sudden, that all the decisions had been taken out of our hands.  My grief was low-keyed.  Once the shock wore off I was left with the phantoms, some of them pleasant and some of them hollow.

And I still had my mother, so–at 46–I wasn’t an orphan yet.

Now I am, and I think I understand my friend’s long-ago words.  I’ve lost the first love of my life.  This is still way beyond my comprehension, and my grief is like curtains that blow open and then close with the draft, letting in just a little bit here and there.  I’m not much of a crier, but every so often I startle myself with the reminder that my mother is no longer here and I feel very close to tears.  That’s all I can say right now.

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.

I am slowly allowing myself to realize that this will be my mother’s last infirmity.  I kept playing devil’s advocate with myself as she’s failed over the past couple of weeks–how on earth could she fail so quickly?–but this is one of the ways it happens.  It boils down, I think, to an injury of her spirit.  Something within her is saying, “It’s time to go.”

As if on cue, a bed opened up in the skilled nursing unit at Garden Manor, and she’ll be moving back there soon.  Her doctor mentioned something about a feeding tube and I said NO NO NO.  She’s 86 years old (yesterday was her birthday) and the past few years have been difficult for her.  I will have Hospice attend to her.  Right now she is halfway there, I think–she sleeps a lot and mumbles about her teaching days. She doesn’t seem to be in any great pain or distress (unless someone lifts her the wrong way).  I don’t want any more CT scans or x-rays or stretchers.  She will go gently.

A quick entry, just to say that I’ve posted at least once in August.

I continue to visit my mother three times each week.  Some days I find her settled, other days–like today–find her agitated.  She’s usually fretting about someone she cannot quite identify.  Today it was someone named “Lily” (the name of my recently-departed dog) who might be coming for supper, but my mother didn’t have any money and what should she do if Lily didn’t show up?

I can tell within seconds of arriving what her mood is.  On days like today she is enormously relieved to see me, as if I am bringing with me the answer to all her worries.  When she realizes that I am not, her expression tightens.  I try to change the subject, to reassure her that I will take care of things, but I can’t break the spell.  “Don’t you ever see them?” she asks.  “What happened to them?”

My doctor has increased my antidepressant and added something to help me sleep. I’m not crazy about taking sleep remedies but I am also not crazy about finding myself beyond exhaustion by the end of the week.  I thought I’d be on more of an even keel at this point but the waters are still choppy.  Maybe my expectations were too high.  Or maybe I’m catching up on the grief.

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.

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

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

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

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

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

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

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

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

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?

It’s been a rough couple of weeks. Anticipating and planning for the move to assisted living, making the move, and now adjusting to it–each stage has exacted its emotional toll. I began visiting my mother six days after she moved in, and if I had it to do over again, I would visit her earlier. But who knows? There’s no way to hurry the grief and adjustment for her, but I think moving her in and then disappearing for nearly a week (on the advice of the staff) might have confused her more than she would normally have been.

I now visit every day. At this point, I don’t know what’s best but this is my gut impulse. The university I work for is now in intersession, so I’m able to leave earlier than usual in the afternoon–I’m off at 3:15 and I can make it to Garden Manor by 4 (it’s not that far, actually, but there’s no way I can avoid city traffic). I sit with her until dinnertime at 5. I spent a couple of hours with her yesterday and today, in the afternoon, trying not to overdo it but wanting her to know that I’ll still be around.

Our visits begin with my mother telling me that she can no longer stand it. She HAS to go home. I’ve managed to whittle my response down to: “I love you and I don’t want to you be alone when I’m not around.” I used to get into circular conversations with her about logistics and motives, but that doesn’t work. I’ve found that short and direct is best. She cries and tells me she wishes God would take her. The other day she asked me why I had put her there to die. I now repeat my response and then try to ask her about her day, or her meals, or the other residents, to distract her.

What’s interesting is how her mood changes by the end of the visit. She’s certainly not cheerful, but the tears stop and she seems a bit resigned to the place. I’ve noticed this change the past few times I’ve visited. Now at a certain point she’ll say, “Well, you should go now–I don’t want to take up all of your time.” I don’t go at that point–this gives me the chance to say that I want to spend time with her. I stick around awhile longer, and eventually she walks me to the door to say goodbye without begging to go with me.

We usually walk around a bit during my visit and often sit in one of the common rooms, which gives me the chance to notice the nineteen other residents. They are mostly women my mother’s age, but there are a couple who are younger as well as three men. My mother waves and says hello to almost everyone she sees, and today she told me that one man played the piano the other night, and they all gathered around to listen to him. She also told me that another woman on her wing comes from my neighborhood, and that yet another woman was depressed. So despite her telling me that “no one has anything to do with me here,” there seems to be some interaction. She’s resisted most activities so far, but was persuaded to go on the “Mystery Ride” on Friday, where a group is taken out for a ride. My mother has always loved going for a ride where she has nothing to do except look out the window. But she complained that no one talked and that they didn’t even get out of the van. “But you don’t usually like to walk around much,” I said. She paused. “No, I guess I don’t.”

I think this response was part of her determination to speak ill of the place, no matter what, in the hopes that I’ll take her home. What’s very interesting to me is that she has been exceptionally sharp since moving there–none of the delusions she experienced in the nursing home (where she believed that she was back teaching school and all around her were her students). She knows just how long she’s been there, and she once even asked me how much I was paying for this. She still asks me where “Ma” is, but she has also introduced me to others as her daughter.

So I think she’s adjusting, even though I know there will be more tears and pleadings for awhile. The staff is nice and there are several other ladies who might be potential companions for my mother. I am slowly personalizing her room–her roommate is in the hospital right now so she’s been alone in there–and this is where I see myself having to adjust. I’ve brought pictures and mementoes but I’ve found myself resisting removing some things from her “home”–and then having to remind myself that “home” is in transition right now. And if I don’t help her with the physical transition, the emotional transition might be rockier.

And then I come back to my home and battle the effects of long-idle appliances and plumbing. I feel like I’m fighting a battle on several fronts. Yesterday, I’m proud to say, I fixed a leak in my washing machine drain system AND replaced the fill valve in the downstairs toilet. Thank God for Home Depot. The weather has been confusingly mild–in the 60’s when it should be in the 30’s–so I’ve been able to do a little yard cleanup, too.

But the other day I remembered that I’ll be able to revive my garden this spring. I can replace the old roses that had fallen victim to a particularly harsh winter a couple of years ago. I can buy seeds and start them indoors. Bit by bit, I think, my mother and I are making the change.

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.