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 Mom died this afternoon at 2 PM.  My sister and I were fortunate enough to be with her when she stepped fully into the afterlife.  The Hospice nurse had adjusted her medications earlier, then the waters calmed and she seemed set on a peaceful course.  We noticed her hands becoming cool and her skin color changing.  Her breathing became shallower and shallower, and I knew she was on her way.  She took a last breath and was gone.

That moment was like a window flying open.  My mother’s spirit took off and all the bottled-up feelings came loose.   There has been so much grieving over the past few years–in increments–that right now I only want to piece together the mother I had for the first fifty-two years of my life.  I’m heartbroken but relieved that she might now be able to understand the past few years–why she couldn’t stay in her home, why her mother never came to visit her.

We each have to come to terms with death in our own way.  It’s not any nobler or braver to be an atheist than it is to believe in God.  The noble part is living by your beliefs.

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.

The nurse from the assisted living facility visited us last Tuesday to evaluate my mother’s suitability for this type of living. I fretted deeply about this, despite trying to calm myself down by re-examining all my escape hatches (”This doesn’t mean she’ll have to move TOMORROW”, etc.). I eventually realized that my primary worry was in presenting my mother with this evidence–the presence of the nurse–that I had been actively making plans behind her back, without her knowledge. This has bothered me A GREAT DEAL, despite my knowing that she is no longer able to consider the big picture, that much of the responsibility is now rightly mine.

I’m also discovering a strange angle to my situation as my mother’s caregiver: that it’s easier for me to accept the disease than it is to accept the vagaries of the healthcare system. And by “healthcare system” I mean not only the bean-counters and the policy analysts, but the vacuums that are created by allowing our practice to be shaped by the market, and not by ideology. I’m certainly grieving for what my mother is losing, but–maybe this is my Catholic upbringing–I know that we all must die and I don’t have any inclination to rage against the heavens about that. But I DO rage when I–the lonely caregiver–keep hearing about all the services that are out there for me, waiting to be tapped. All I have to do is find and coordinate them!! In my spare time!

Sure, I’m capable of looking at websites and in telephone books, and sending out email and dialing telephones. I can write checks and use a debit card, too! But it just isn’t that easy, once you start discovering that you must either be very poor or very rich to take full advantage of this system. Oh, maybe I’m cranky because I’ve only just come back from the pharmacy, unable for the second time to fill a prescription my mother needs because her nurse practitioner called it in and changed the dosage by 5 mgs., so my mother’s Part D insurance company will not cover the new dosage unless the NP calls them directly. This is just a microcosm of what bureaucratic headaches are involved in dealing with the system and this is what I rage against, especially when I have to deal with it at the same time as I’m filling out forms for the AL facility, and amassing a sheaf of documents for the VA. Plus having to go into work late for the nth time because my mother wakes up especially agitated on a particular morning.

But back to the nurse and my disclosure-anxiety. I told my mother beforehand that a nurse would be coming to the house to talk to her about her health. My mother was surprisingly sanguine about it. “Okay,” she said, and let it drop. I did not tell her where the nurse was coming from, until she was seated opposite my mother on the sofa.

The evaluation was very low-keyed and personal. At first I kept glancing nervously at the name-tag the RN was wearing, which bore the name of the facility. I expected her to administer the Mini-Mental Status Exam, or something like it, but she was most concerned with whether my mother is able to dress and “toilet” herself. At one point she alluded to information she had learned from my mother’s doctor, so I assume that he had covered the specifics of her illness with the nurse. I finally found the courage to tell my mother where the nurse was from, and how I had arranged to have her come and visit because I would like to move back to my house but do not want to leave my mother alone.

I had said this to her before, but not as pointedly and not with a witness present. My mother looked a bit shocked–despite her condition she now knew what this visitor meant. I noticed that she seemed to find it harder to look the RN in the eye after that–as the nurse described the amenities of the place, my mother wore a flat, evasive expression. The moment the nurse left, my mother turned to me with an inscrutable look and merely said, “You.” I felt terrible.

We didn’t talk about it again that night. She was very quiet as we watched the news and then she decided to go to bed extra early, before the Mass began. I felt at once awful and a bit relieved that she now knew what I had been doing. I held off mentioning it for several days (mostly because I ended up with my usual post-traumatic migraine a couple of days later, my routine roundtrip through purgatory after a stressful event). But on Sunday we took a drive out to apple country, where we bought a pumpkin and a bag of Cortlands. On the way back I stopped at my house to water my plants, and my mother, as usual, remarked on what a pretty house it is.

“I’d really like to move back to it,” I said.

“Right now?”

“Yes, but I don’t want to leave you alone.”

My mother was quiet a few moments and then said something sphinx-like: “I don’t have any aspersions about that place.”

I asked her if she meant the AL facility and she said yes, and I was somewhat surprised that she had it so readily on her mind. I think I was relieved that she DID have it on her mind because at least now it’s something she can be aware of, maybe even think about? I’m being optimistic here–I’ve been thinking about what she could have meant by “aspersions”: “aversions”? “aspirations”? I’ve got to think about this.

It’s a tough passage for me. I have to be careful that I don’t focus too much on grappling with the system and lose sight of what I believe is best for my mother. One day at a time, as they say.

This is a story of how dementia and family dynamics can be kneaded together to create something that will rise on its own. It’s an example of how one situation and its ripple effect stoke the stress that often underlies the mindset and the judgment of the caregiver, and which then reaches the Alzheimer sufferer in amplified form. I don’t really know where or when it began–one day this week I had mentioned to my mother offhandedly that I’d like to put fresh flowers on my father’s grave on Father’s Day–but sometime during the day on Thursday she came to believe that both dogs had disappeared, which must have set the whole train in motion. My mother often doesn’t see the dogs if they are not in her direct vision–they could well be lying within her peripheral vision, but I suspect that her world has tunneled somewhat.

So when I got home from work that day, I immediately saw the dogs in their usual spots in the living room, and my mother soon appeared, looking haunted. I think for a second she didn’t know who I was. “I couldn’t find them,” she said finally. “I tried to call him–I called everyone I could think of–but I don’t know where he is.”

I know now that my first response should have been reassurance, despite not knowing what she was referring to. But her appearence rattled me and I peppered her with questions. This confused her further, and I realized at this point that I would need to back off. I was also realizing that her concern for the dogs had become a fixation on my father’s whereabouts, and I knew that by trying to calm her down I could also distract her, which might hasten her forgetting. She seemed to settle down after a few minutes, and so we sat down to eat a light dinner. But her anxiety had unsettled her digestive system, and after an upsetting bout of acid reflux, I got her to drink some Maalox and settle herself in the living room.

For a short while after this I thought we were out of the woods. She watched the Mass and I put curlers in her newly washed hair. And then I found her with the phone in hand, scanning the list of phone numbers. “This isn’t like him, he usually calls,” she said. “I haven’t seen him now in a couple of days.” My antennae went up on that statement, afraid that the hallucinations of last year might be returning. But it wasn’t worth the upset at this point, so I took the phone and told her that I would call later on. She looked at me with suspicion. “I won’t be able to sleep unless I know he’s alright.”

“Where do you think he is?” I asked. She thought a moment and then named his younger sister’s house. I dialed our own number and let her hear the busy signal. “I’ll have to try later. Why don’t you go to bed and I’ll try again in an hour.” Because she was tired, she gave in. The otherworldliness of her reality–not seeing him for days and thinking he was at his sister’s house–made it harder for me to gauge the depth of her loss.

The following morning she arose and dressed immediately (instead of drifting around in her bathrobe, moaning about her legs) and seemed as alert as I’d ever seen her. She didn’t mention my father, but I had spent the previous night in thought about her ability to be alone, when delusions like this could take shape out of nowhere and mushroom significantly before I would come home. I knew it was time to start visiting assisted living facilities; I had to stop dragging my feet on that. And I’d have to reinstate the homemaker, despite my mother’s objections.

I had taken the day off, afraid to leave her alone until I was fairly convinced that the delusion had petered out. A neighborhood friend dropped by in the morning, and later on I gritted my teeth and scheduled two appointments for next week with local assisted living homes. I had already done the research and made a list of what I thought were the best local places–a short list, due to the Alzheimer’s complication. By this time my sister was at the house, and we were about to go outside for a moment when my mother piped up: “Did you make that call last night? Did you talk to Daddy?”

“Everything was okay.” I said.

“What do you mean? Why isn’t he calling? Can you call him again right now?”

“I’m in the middle of something–why don’t we do it later?”

I hurried along, not comfortable with the deception, but not wanting to take a chance on the truth. I was remembering advice I’d gotten from both professionals and books that delusions of this kind–if comforting–can be left carefully undisturbed. But was this comforting? My sister felt not, even after I’d explained my rationale. I found her telling my mother, in very explicit terms, that her husband, our father, was dead.

At a certain point my mother absorbed it. Her eyes teared up and she asked us why we’d lied to her all this time. I only lasted about a half-hour into her rattled interrogation: How did he die? Did he have a funeral? Who was there? Was he in the hospital? Where was she when this was happening? Her shock and sorrow were as fresh as they had been on November 18, 1999. I was so angry at my sister that I got up and left her to face my mother’s grief. When my sister found me later on I practically threw my copy of The 36-Hour Day at her and said, “Educate yourself.”

My mother’s grief seemed to fast-forward. By the time she was ready for bed, she seemed calm and expressed relief that my father hadn’t suffered. Then she slept without interruption.

As I write this during the following afternoon, though, it’s taken hold of her again. “I feel awful that I wasn’t there when he died. Now I can’t settle,” she’s been saying tearfully. I’m not sure where this will end–it seems too late to double-back to the distraction and pretense phase. My sister called this morning with the realization that she should have listened to me and kept her mouth shut, but she’s not here to face my mother’s sorrow. There’s not too much in the caregiver advice literature on how to patch up situations like this.

Postscript: I took down the box of cards and spiritual bouquets that we received after my father’s death and read them over with my mother. It was the only way I could think of answering the endless questions she was asking today. At one point she remarked that she was getting the sense that it had all happened awhile ago, but I don’t think that stuck. But she remembered each person whose card we read. Then we looked at a few photos of my Dad. She still seems a little mopey.