The Yellow Wallpaper

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.

Just a short post to, first, link to an excellent essay called How to Be Where You Are by my friend Gail, at Mom and Me Too, about mindfulness and how the daily acts of caregiving can enlarge what seems sometimes to be the very isolated life of the caregiver and her Ancient One. In her essay Gail writes a wonderful passage about the way she selects the color of her mother’s bedsheets on a given day, based on her awareness of her Mom’s present situation and of how the use of different colors can soothe or encourage anyone who looks at them. It doesn’t get any better than that.

As an addendum to Gail’s essay I’d like to quote a passage from one of my favorite writers, Ralph Waldo Emerson. I thought of it as I read Gail’s words. Finding the eternal in the ephemeral is, to me, what mindfulness is all about. It counteracts the ridiculous celebrity culture that we live in by affirming the capacity of each one of us to touch what’s truly important: the permanence of the spirit, or the divine presence within us all. I know, I know–it sounds way too New Age-y to matter to someone who has to deal every day with bodily functions and misplaced memories. But as Gail says in her essay, we already do this in so many ways without even thinking about it. Being aware of The Moment–the comforting aroma of fresh coffee, the lullaby of crickets on a summer night, the particular blue of moonlight on a new snowfall–reminds you (the often-lonely caregiver) that you have a hotline to all that matters. Right now. And it’s everywhere, once you cut through the double fog of regret and anticipation.

I’ll “up the ante” and also propose cultivating an attitude of gratefulness for each day. It sounds crazy–I should be grateful for my mother’s ever-growing confusion? I should be thankful for the nights when I get only three hours of sleep because she gets up at midnight, thinking it’s morning? Well, no–we don’t have to be that literal. I see gratefulness as choosing to accept with grace what we cannot control, rather than falling into bitterness and blame. Being cynical is no more authentic than going out on a limb and believing that there is meaning in even the smallest clean-up–but I do think the latter choice is certainly braver. Gratefulness.org is a nice place to start.

“The trivial experience of every day is always verifying some old prediction to us, and converting into things the words and signs which we had heard and seen without heed. A lady, with whom I was riding in the forest, said to me, that the woods always seemed to her to wait, as if the genii who inhabit them suspended their deeds until the wayfarer has passed onward: a thought which poetry has celebrated in the dance of the fairies, which breaks off on the approach of human feet. The man who has seen the rising moon break out of the clouds at midnight has been present like an archangel at the creation of light and of the world [my emphasis]. I remember one summer day, in the fields, my companion pointed out to me a broad cloud, which might extend a quarter of a mile parallel to the horizon, quite accurately in the form of a cherub as painted over churches, — a round block in the centre, which it was easy to animate with eyes and mouth, supported on either side by wide-stretched symmetrical wings. What appears once in the atmosphere may appear often, and it was undoubtedly the archetype of that familiar ornament. I have seen in the sky a chain of summer lightning which at once showed to me that the Greeks drew from nature when they painted the thunderbolt in the hand of Jove. I have seen a snow-drift along the sides of the stone wall which obviously gave the idea of the common architectural scroll to abut a tower.”

From Emerson’s “History” (from Essays: First Series (1841))

I came across a book called The Forgetting written by David Shenk, and it begins with an anecdote about Mark Twain and Ralph Waldo Emerson. I’ve been an admirer of Emerson for awhile–I think his essays tell us more about the quintessential “American character” than any other writing (with the possible exception of American fiction of the past century and a half) and only recently I’ve learned that Emerson’s final years were increasingly clouded by dementia. The man who wrote “Nothing is at last sacred but the integrity of your own mind” was forced to rely on something other than his exemplary sensibilities to navigate the last years of his life. Twain was speaking at something akin to a “roast” at which Emerson was present, and he lampooned one of Emerson’s poems. As Shenk relates, his attempt at humor “bombed”–Emerson’s daughter later responded to Twain’s apology by explaining that her 72-year-old father was no longer able to follow simple conversations, much less satiric efforts. Although Twain hadn’t been aware of this I imagine that many of the other guests at the dinner had probably been speaking quietly among themselves for awhile about Emerson’s diminishing intellect, and so were horrified at Twain’s public irreverence.

I found a snippet of a poem that Emerson wrote when he was younger, and for some odd reason it gives me hope that the inner world of the Alzheimer sufferer, although locked and secret, might not be as dismal as it appears from the outside. He wrote:

I will not live out of me
I will not see with others’ eyes
My good is good, my evil ill
I would be free - I cannot be
While I take things as others please to rate them
I dare attempt to lay out my own road
That which myself delights in shall be Good
That which I do not want -indifferent,
That which I hate is Bad.

I know that Emerson is sometimes criticized as arrogant for his celebration of the inner god. My understanding of him is that this was his starting point, his North Star, from which he traveled and explored ideas of self, living and transcendence. So when Alzheimer’s closes off some of those intellectual paths, can it be so bad to have this as a home base? To have cultivated a belief in an essential transcendence that doesn’t need systems or logic?

A few years ago I visited Emerson’s home in Concord, Massachusetts. With the exception of the contents of his study (moved across the street to the Concord Museum) the house was full of his belongings. There are glass cabinets filled with gloves and toys and trinkets. Upstairs in his bedroom his robe hangs from a peg. On a hook beside a side door is Emerson’s hat. I remember the guide noting that the hook had been placed relatively high on the wall, an indication of how tall the man was. The hat was brown and broad-brimmed, softened by repeated use. It’s what folks in the museum business might call “noumenal”–an object that is meaningful by association rather than intrinsic worth. Because the “Sage of Concord” had worn it, it holds onto something of him, even though he’s long gone. I like this idea–that there is more to a person than the physiology, that there’s something like pollen that rubs off on things as we live our lives. It’s an antidote to the cerebral and the logical view of life.

TERMINUS
by Ralph Waldo Emerson

It is time to be old,
To take in sail:–
The god of bounds,
Who sets to seas a shore,
Came to me in his fatal rounds,
And said: ‘No more!
No farther shoot
Thy broad ambitious branches, and thy root.
Fancy departs: no more invent;
Contract thy firmament
To compass of a tent.
There’s not enough for this and that,
Make thy option which of two;
Economize the failing river,
Not the less revere the Giver,
Leave the many and hold the few.
Timely wise accept the terms,
Soften the fall with wary foot;
A little while
Still plan and smile,
And,–fault of novel germs,–
Mature the unfallen fruit.
Curse, if thou wilt, thy sires,
Bad husbands of their fires,
Who, when they gave thee breath,
Failed to bequeath
The needful sinew stark as once,
The Baresark marrow to thy bones,
But left a legacy of ebbing veins,
Inconstant heat and nerveless reins,–
Amid the Muses, left thee deaf and dumb,
Amid the gladiators, halt and numb.’

As the bird trims her to the gale,
I trim myself to the storm of time,
I man the rudder, reef the sail,
Obey the voice at eve obeyed at prime:
‘Lowly faithful, banish fear,
Right onward drive unharmed;
The port, well worth the cruise, is near,
And every wave is charmed.’