The Yellow Wallpaper

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.

Only over the past couple of months have I understood what is meant by “caregiver’s burnout.” Waking up each morning with a sick feeling in the pit of my stomach, going to bed at night with a head full of circling obligations and regrets. Catching myself in the middle of the rare pleasant experience and thinking, “Whoa. Not so fast–don’t get TOO relaxed…” Envying the person ahead of me in line at Target because I imagine that she lives the kind of trouble-free life I don’t have. What’s funny about the last statement is my knowing that no one actually has such a life–a couple of months ago I was waiting in line at Dunkin’ Donuts and ahead of me was a man I’d gone to grammar school with, many years before. I almost spoke to him but before I got up the nerve, he’d gotten his coffee and was gone. And then this past week I saw his mother’s obituary in the local paper: she had had Alzheimer’s Disease.

But part of the power of such intense, jagged, fear-ridden experiences as caring for someone with AD is the black-hole effect. Everything around you gets sucked in, everything else is somehow related to your troubles and assumes their nature. Even the relatively minor headaches–the car muffler coming loose or losing the brand new book of stamps you just bought–become “And now–THIS!!” moments. Reverberations of the primary heartbreak as it pounds away at you.

Months ago I’d bought tickets to see Bob Dylan perform locally. As the concert approached I became anxious–I couldn’t pull myself out of my tight little orbit. First of all, I’d have to arrange for someone to spend the evening with my mother–otherwise, I’d never be able to relax. And then I’d have to take responsibility for my friends’ evening–if I bailed out or had to leave early, I’d be spoiling the experience for them, too. Then I realized that the worst-case scenario would be if I actually began to have a good time and then had to face the wake-up call of reality. So I sold the tickets. As the Man himself says, “You Ain’t Goin’ Nowhere”…

Shadows are falling and I’ve been here all day
It’s too hot to sleep time is running away
Feel like my soul has turned into steel
I’ve still got the scars that the sun didn’t heal
There’s not even room enough to be anywhere
It’s not dark yet, but it’s getting there

Bob Dylan, “Not Dark Yet” from “Time Out of Mind”

Next Tuesday a nurse from the assisted living home will evaluate my mother here at the house. I spoke to her on the phone today to set the time. She then asked me what my mother knows about the arrangements.

Nothing. We have brought it up as a possibility with her, but I have still not sat down with her to say, “Mom, we have you on the waiting list for assisted living.”

The nurse reacted very kindly to my prevarication. She suggested that we tell my mother that we are looking to find ways to improve her health and life. She was understanding enough not to say what she must have been thinking–”What on earth are you waiting for?”–and I appreciated that.

The truth is that this is by far and away the hardest thing I have done in my life. Dealing with my father’s death was not nearly as awful as this. I’ve heard heartrending stories about nursing homes and assisted living, and I’ve heard extremely heartening stories about them, and I am still in this harrowing place. I still want her to give me her blessing, to tell me it’s okay, that she would rather move than continue on this way. But she can’t, and maybe that’s because I’ve kept so much from her, and I’m not sure what I did was right.

I think the hardest part is keeping it from my mother. Watching her deal with each uneven day and knowing that she can’t make the decision. Trying to come up with some half-truth that might sugar-coat what I am going to do. I know that, to a certain degree, I am not totally responsible for the decision. There are realities that are finally becoming visible through my rose-colored glasses. My mother cannot live alone–no argument there–and should not be left alone at all. I realize this when I tell her, for example, to turn off the ceiling fan and then realize that she doesn’t know what I mean by “ceiling fan.” Or when she says things like, “I don’t know my face.” So sitting down with her to discuss assisted living might open a Pandora’s Box of mis-associations and fears.

But there’s still a Mom in there and if my father were around, he’d take care of her… Would he? How do you take care of someone when everything that is shared disappears? The past, the language, the habits, the trust? She can only hang on to the present, even if it seems miserable, because anything else is alien. What does “care” mean, under those conditions?

So I must decide for both her and me. And I want to be sure it isn’t my exhaustion making the decision. I guess I’m in the process of grieving, first, the loss of an expectation: that my mother, like everyone else, is entitled to determine the quality of her life–where she will live, what she will do. That grief engenders another grief–for the loss of my idea of my mother, of the person who is related to me in a way no one else will ever be. The first eyes I looked into, the first embrace I felt. I still see glimpses of her and this is the person I feel I am betraying, mostly by my silence.

I know she needs more care than I can give her, and this need will only increase with time. I know that better with each week. But the intellectual realization and the emotional realization are not aligned, and that’s where the mourning is.

From Emerson’s essay titled “Fate”:

Let us build altars to the Beautiful Necessity, which secures that all is made of one piece; that plaintiff and defendant, friend and enemy, animal and planet, food and eater, are of one kind. In astronomy, is vast space, but no foreign system; in geology, vast time, but the same laws as to-day. Why should we be afraid of Nature, which is no other than “philosophy and theology embodied”? Why should we fear to be crushed by savage elements, we who are made up of the same elements? Let us build to the Beautiful Necessity, which makes man brave in believing that he cannot shun a danger that is appointed, nor incur one that is not; to the Necessity which rudely or softly educates him to the perception that there are no contingencies; that Law rules throughout existence, a Law which is not intelligent but intelligence, — not personal nor impersonal, — it disdains words and passes understanding; it dissolves persons; it vivifies nature; yet solicits the pure in heart to draw on all its omnipotence.

I’d like to repeat a comment that was left for me by Patty Doherty, one of the creators of The Unforgettable Fund. Answering just ONE of her questions requires one to be bravely empathetic. And until the most powerful members of our society can acknowledge and deeply empathize with the least powerful members (note Patty’s challenge, at the end of her comment), we can’t continue to call ourselves “God’s country.”

DO WE DARE LOOK AT THE ELDERLY IN NURSING HOMES?

How do we address the care of our elders, before they die but after
they’ve lost their independence?

One things for certain, we’ll all have close personal knowledge at some
point with death. We’ll experience it in as many different ways as
there are people on the planet. But before death comes, many of us will be
cared for in nursing homes as our elders are today. What is that like?
How little we know and how much we need to learn - now! - while we have
the time and the opportunity to get it right! For instance, how many of
us can answer the following questions?

How does it feel to not sleep beside your spouse?

How does it feel to be unable to communicate your needs?

How does it feel to be dressed and undressed by a stranger?

How does it feel to be fed, not when you’re hungry, but when it’s
“time”?

How does it feel to be fed what you don’t like to eat?

How does it feel to not drink when you’re thirsty?

How does it feel to be really thirsty, offered water through a straw
you don’t remember how to use, and have the water taken away because
you’re “notthirsty”?

How does it feel to need to use the bathroom but have to use a diaper?

How does it feel to wait for a stranger to come in and change your
soiled diaper?

How does it feel when you have to wait for hours?

How does it feel to wait overnight?

How does it feel to holler for help and be ignored?

How does it feel when you can’t bathe yourself but have to wait for
your twice weekly bath by a stranger?

How does it feel to want to hug your child but you can’t move.

How does it feel to cry and be ignored?

How does it feel to be hollered at to believe in Jesus when you’re
Jewish?

How does it feel to be cold and not pull your blanket up but instead
have to wait for someone to notice, in the middle of the night?

How does it feel to be placed in a wheelchair for hours in a room full
of strangers in wheelchairs with no music, no sound other than the CNA
talking on her cell phone?

How does it feel to never go outside in the fresh air and sunshine?

How does it feel to know you won’t get past the front door until you
die?

How does it feel to be talked about as if you weren’t in the room?

How does it feel to know you’re spending down your life’s savings to
pay for this care?

How does it feel to not get your teeth brushed for weeks?

How does it feel to have your skin tear when you’re pulled?

How does it feel to not move and develop bed sores?

How does it feel to not have them heal because you’re only bathed twice
a week?

How does it feel to have them spread?

How does it feel for your children to not see them because they’re on
your bottom, under your diaper, under your clothes?

How does it feel to hear the nursing home won’t install web cams
because they want to protect the privacy of their employees?

How does it feel to be old, incontinent, with Alzheimer’s, in a nursing
home in America?

These are all ordinary, everyday situations that our parents in nursing
homes all over our country face on a daily basis. Don’t believe me? Ask
around - you’ll hear the same heartbreaking stories coming from all
over the United States. Ask your legislators if they know what’s going on.
And if they’re shocked ask them if they would dare do something about
it.

THE DARE

I have an idea but I need 12 brave legislators to take a leave of
absence from their posts for one week. Preferably the ones who have
campaigned as strong advocates for the elderly. And since Florida leads the
country in aging, that would be a great place to “host” this event.

I propose they take up residence on one floor of a hotel, set up to
follow ordinary nursing home procedure. This will be there “pod.”
Theyagree to be diapered, and unable to walk, bathe or feed themselves for one
week. They rely soley on one statistically-average aide - no education
other than CNA certification, unverified background check,
questionable documentation, no experience - to do all of their care. This aide
will make only $8 per hour. There will be one aide only - reflective of
the acceptable staffing ratio in most nursing homes - 1 CNA to provide
ALL the care for 12 residents.

These “residents” must not talk, they must not move, they must not
read, they must not verbally or physically communicate, they must not do
anything but lie there. They can moan, they can cry out, they can grab
the hand of someone walking by, but they can’t articulate their needs, no
matter how dire.

They can’t propel their own wheelchairs, they can’t lift themselves up,
they can’t roll over in bed, they can’t get water when they’re thirsty,
they can’t get aspirin when they have a headache, they can’t use the
phone, they can’t go outside in the sunshine and fresh air, they can’t do
anything for themselves. They can do absolutely nothing.

They have to exist as the patients of nursing homes exist, entirely
dependent upon others for their care.

DARING TO CARE

When the week is over, we’ll have the information we need to address
the nursing home system as it exists today. Maybe it will be great, maybe
it will be awful but either way these 12 elected officials will know
first hand what they’re legislating about, care of the elderly. If
everything is fine, we won’t have to change a thing. If everything needs to
be overhauled, these brave 12 can lead the way for the rest of us who
just don’t know what it is we’re in for.

I believe that experience will change the laws in the state of Florida
within one week. And if this one-week experiment is conducted nation
wide, it will transform the way we care for our elderly.

The men and women who swear to lead us, to govern us, to protect us,
should know first hand that the golden years have turned to lead in our
country. The men and women who campaign tirelessly to attain their
elected office should be willing to give us this one week, just seven days,
to see firsthand how shamefully the nursing home system, as it’s
structuredtoday, is failing our elders.

Without that knowledge, how can they honestly say they know of what
theylegislate? WITH that knowledge, they’ll have the power to pass the
mostsweeping legislation in our history.

Our mothers, fathers, aunts, uncles, ARE these elderly people. For once
and for all, 12 legislators can transform this haywire nursing home
industry by participating in this challenge. All they’ll have to do is
nothing. When has it ever been possible to accomplish so much by daring to
do nothing.

Thank you for your consideration.

Sincerely,
Patty Doherty

I called my mother from work at the usual time this morning, and she was having the speech difficulties she often has when she’s upset by something. But she managed to say to me, “I have company today.”

Using my best powers of interpretation, I guessed that she meant Eva, the homemaker.

“No,” she said. “It’s a man. Dustin.”

“Mom, that’s Lily.”

“No, Lily’s over here,” she said. “But there’s a man over there. Dustin’s over there.”

This seemed to be more than the usual doggie-name-confusion, and I had to restrain myself from interrogating her sharply. Her tone of voice was somewhat wary and distracted, and all I could think of were her pre-diagnostic hallucinations.

“Where are you?” I asked.

“I’m in the kitchen. He’s lying on the couch in the living room,” she said, and in the background I could hear my sister’s voice: “Mom, who are you talking to?”

I realized then that the “man” she was referring to was my sister, and my mother had given her the name of the last “man” to live in the house, my dog. My sister will often lie down on the loveseat in the living room when she’s visiting my mother–sometimes she dozes off there. This habit of Liz’s has lately been agitating my mother–when I had come home from work the day before, my mother had been extremely confused and agitated, and we managed to boil it down to the fact that “they” had been sleeping on the couch.

(I was able to calm her down the previous day through a creative interpretation of her anxious words. “We” usually means “I” and “they” means “he” or “she.” Talk of “going out” (which she does only with me) usually means that something out of the ordinary happened, something she didn’t expect which might have rattled her. So instead of asking, “Now who do you mean by ‘we’?” I know enough to let that detail go and home in on whether she thinks she’s left the house or not.)

But back to today: it wasn’t until much later in the day that I had my “Aha!” moment. I remembered her hallucination of November, 2004, where she was going down to the basement one night and saw the man sleeping on the couch. And my sister was re-enacting that memory.

I suppose–if my suspicion is true–this is a small insight into the type of connection that is still being made in my mother’s mind. Although increasingly less able to discern details, she is still able to see the gesture, the shadow, and hold it up to what still resides in her memory. In this case, the result was anxiety (and I will probably have to talk to Liz about sleeping on the couch). But there is still the possibility of reassurance, I think. I’ve said it before, but I’ll repeat myself–it’s like trying to interpret an especially difficult poem, where the sounds and the rhythm are just as significant as the meaning.

Several times this past week I’ve heard myself telling someone that my mother would probably be moving into assisted living fairly soon. Each time the words startled me–as if I were hearing someone else saying them. I don’t know when the “if” became “when”–or even if it truly has become “when”–but a part of me is clearly readier to think about the prospect.

Since I last posted my mother has been having “good” days. She still asks me each and every night “Where did everyone go?” She still looks for my father before going to bed. She still sits in her place on the sofa for most of the day, staring at her hands or falling asleep. But no unusual agitation, like last Tuesday. No wanting to “go home.” No wandering at night. I did have to remind her to change her clothes on Thursday, which she did readily. But we were back on that steady keel that lulls me into thinking we could go on like this indefinitely.

Maybe I know just a bit more surely that this won’t last? Maybe I’ve seen enough days like last Tuesday that erupt out of nowhere and become the new reality before dissolving? And each time that happens I absorb just a little bit more of what Alzheimer’s means, and this knowledge stays with me–scares me, actually. No matter how much I arm myself intellectually, I’m never emotionally prepared for my mother’s dissonances. Part of me remains status quo, but another part of me panics. And the way I cope with panic is to act, sometimes doing something I never thought I’d do, just to manage the horrible feeling in my gut.

And so I took time during one of the days I took off to do some more hard figuring, some creative visualization about my mother’s potential move into assisted living. I’d been dragging my feet a bit on the Aid & Attendance–I pulled the application and forms out again and requested a “pro forma” from the facility whose waiting list she’s on, in order to project her financial need. I then made a worksheet of her living expenses in the facility and at home. I suggested to my sister that she think about moving into my mother’s house (and keeping up the expenses, which are pretty low) when my mother moves into AL, at least until the house goes on the market–since my sister is unhappy in her living arrangements. Doing this has calmed me down.

Each time my mother disconnects more–even if the disconnect doesn’t last–I see the future. And I understand why I was advised to investigate assisted living in advance. I can imagine that the next disconnect will push me even more deeply into that panicky place where I must do things I just can’t imagine doing right now. Right now I pray that the admissions counselor will not call to tell me there’s an opening for my mother–at least, not until after Christmas? I still pray that she will never have to leave her house, but I wonder just who I am trying to protect with that prayer?

I feel so false to my mother by not involving her in these preparations, but I’ve played out that possibility in my mind countless times, and the only way it works is if my mother is her old self, able to understand the situation. I bring it up with her occasionally, usually in the nurse practitioner’s office in the hope that hearing it from someone other than me will make a difference for my mother. But I know that “if” and “when” moving becomes the only alternative it will be tough going.

And so I keep in mind what her doctor told us at our last visit. “It’s going to be harder on you than it is on her,” he said, and I sensed that there was truth in this as well as reassurance.