mom

Adieu

“Ruthie’s gone. Ruthie’s gone. Ruthie’s gone.”

-Evangeline Finlay, her caregiver

They took mom’s body and left a rose on her bed.

She just stopped breathing, after eleven days without food or water, eleven days with her family waiting for the end, she just stopped breathing. Her heart continued beating for a few more minutes then slowed and stopped. It was over. Just like that. It was over.

Ninety-seven years. A long life. Eleven days. A long death. And then she just stopped breathing. I expected more. I expected a poetic moment. I’d read accounts of a profound change when the living spirit departed its container. Nothing. Perhaps it takes a soul more poetic than mine to see what I couldn’t. Or maybe a spirit more evolved than mine. Or maybe all those accounts were truly poetry.

Now we’re held captive by ritual. We cannot bury her during Passover, so we must wait until Sunday. She was a cultural Jew, not much on religion, but as a Jew she’ll be buried – after Passover.

They took mom’s body and left a rose on her bed.

I liked the men who took her body away. They were extremely respectful, wore ill-fitting black suits and white plastic gloves and their papers said they were from a removal service. They wrapped her in the sheet from her bed, covered it with a red velvet cloth and wheeled the gurney to the elevator and a waiting van. There were no witnesses. None of the residents, waiting their turn, were in the hall when she passed by. I thought the management might have closed the corridor but surely everyone would have known why.

They took mom’s body and left a rose on her bed.

Adieu mom.

Lord of the Flies

I watched Zorba the Greek the other night. I know, I know, I called this piece Lord of the Flies. Just bear with me. There’s a scene near the end where the old woman is dying and the village crones come into the house to wait for her end so they can ransack the house.
Now we’re doing the same. We sit and wait for her to die, but mom is not cooperating. When she’s gone, we’ll store her body and get rid of her things.

It feels like we’re the subjects of a sadistic social experiment: confine five members of a family and two strangers in a small space, subject them to a massive amount of stress and sorrow and see how they react. How long will it take for social norms to break down? Who gets drunk? Who flees in terror? What will distract them, make them cry, make them laugh? How do they cope? Lord of the Flies.

It’s been a week now, no end in sight. No one can say how long.

And what about mom? Breathing seems to take more effort today but her blood pressure is an enviable 120/60. She hasn’t taken food or water for eight days. The doctor who didn’t think she’d last this long has increased her morphine so she gets it every two hours now. She wakes when the nurse administers the drug and begins to moan. There’s a sign of recognition when a family member comes to comfort her and she’s able to lift her arms for a sort of hug. Her moaning increases because she cannot talk but the recognition of family seems to indicate some sense of awareness of her condition. She knows, but is as powerless as we are to change anything. She is trapped in a useless body. In any real sense, she is already dead.

Why do we allow this? When death is inevitable, when life holds nothing more, why do we persist in maintaining breath? Even people with faith in an afterlife, in God’s blessing, who believe in some reward for good behavior, do not agree to end life when it is no longer viable. Even when they believe they’re going to a better place. Suicide is a dirty word and to hasten my mother’s death would be murder. We’ve got it all wrong.

Waiting – Watching

All we can do is watch. She sleeps with her mouth open, a gaping void with three teeth, the two in front and one more after a gap. Her breathing is labored and noisy, currently about nine breaths per minute, but subject to change. One bulging eye is part open but blind, we think. Her skin, mostly purple now is so thin it barely covers the bones that protrude at the joints. Her legs, once her great pride now just pale sticks. My eyes trace the purple veins in her hands and watch the pulse still beating in her neck. She looks as if her still-working organs would be visible beneath the nightgown.

When she wakes she seems agitated, tries to speak but can no longer form words. She moans and stretches out her arms as if seeking a human touch and my embrace – hesitant from fear of hurting her or a lifetime of awkward affection – does seem to comfort her, or so I choose to think. We talk to her, not knowing if she can hear. We tell her we’re here, we love her and we’ll be all right when she leaves. Nothing that has gone before matters now. It’s OK for her to go now, we say, but she can’t agree. We give her permission but she has no more control of this than we do. Or does she? Is she fighting to stay alive, raging “against the dying of the light” Who can say?

It seems so unlikely, it was never a happy life, why fight to continue it? Because her lack of faith leads to fear of the unknown? Maybe.

There is a nurse from hospice and a full time aide. They watch “Ellen” with the sound off. They chart every event, record imperceptible changes. They will not leave her alone and they won’t leave us alone with the morphine. They will keep her comfortable but they won’t speed her journey. They say if we have private thoughts to express they will leave the room for a moment. I can’t think of anything I need to say.

They tell us to talk to her, reassure her, tell her it’s OK but I don’t think she can hear, or could understand if she had somehow regained the hearing she lost years ago. I think this advice is meant for us, to let us feel we are doing what we can, to comfort us. They tell us there may be moments of clarity, or not.

Her breath is shallow now and has fallen to seven per minute. “American Idol” with sound, kept respectfully low. A swab with water for dry lips causes her to close her mouth tight. She wants no more. She sleeps. Does she dream? Sometimes there is eye movement beneath the lids but does it signify a dream?

And she wakes and begins to moan. It’s too high pitched and scratchy to be a moan but it’s not a whine. It sounds like an old 78 recording of a soprano past her prime. It is the sound of anguish, of reaching, of need. The nurse administers morphine, Atavan, and Seroquel by syringe without needle in her mouth, then massages her throat to make her swallow. She sleeps again.

So we watch – and look for signs of change. Has her breathing slowed? Or is it faster? Have her feet turned purple? Blood pressure down but sometimes it rises before death. Pulse? There is no pattern, our deaths, like our lives are unique. And this is the one body process we cannot know from the experience of others.

The Today Show. No change.

Meredith

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One Life to Live

Local News

No change.

We are seven waiting for mom to die.

Her hospice nurse and aide

The three children

The two grandchildren

Waiting

No change

Her breath is a little slower now, maybe six per minute and the time between is longer.

Watching her breathe, ten or fifteen seconds between breaths is a lifetime. It seems too long. I think she’s gone but no, her chest slowly rises and falls again accompanied by a raspy moan.

It will be 83 degrees and sunny tomorrow.

Mom is 97 years old, suffering from severe dementia; her mind is no longer connected to reality, yet the burden of her body continues. One dark, unseeing eye bulges out of her head; the other struggles to focus through a cataract. She cannot hear much. Her arms are covered with purple bruises, her legs bandaged to cover skin too thin to protect her. She is tiny, except for a severely bloated stomach that houses the tumor that refuses to kill her.

Her thoughts are trapped somewhere between disappointment and fantasy, in a world that never existed. It was never a happy life and that it continues in this painful demented manner is a terribly cruel punishment. She lost her parents at the age of twelve: her mother died, her father sent her away. She never recovered. Such an unhappy life that refuses to end.

Yet there is nothing we can do. We cannot end her life. That decision is not for us to make. She is in pain, partially controlled by morphine. She is agitated: perhaps frustrated by growing mental incapacity, perhaps fearing death. Xanax helps a little. She is depressed, always has been, and there is Zoloft for that. This is maintenance, not life. We give her all these meds because she is demented and we fear she will succumb to the pain and despair and kill herself. What is rational behavior in this circumstance? Is it reasonable to preserve a worn out body by controlling a dysfunctional brain with drugs that render her senseless?

She can no longer make her wishes known to us, but this is consistent with a life-long pattern. In our family, no one ever makes clear what she really needs; we all persist in equivocating and deferring until we get what we want because some decision had to be made, or, more frequently, just move on, unsatisfied and slightly resentful. So mom wouldn’t tell us what she wanted when she was able, now she cannot.

She was frightened when we first arrived, not knowing my sister and I, perhaps thinking we were the ones who would take her away. I sat with her a while, holding her hand, offering what comfort I had to give. She became calmer. I wanted to will her to die. I told her to let go. She would fall asleep, I’d watch her breathe, wanting to make it stop. Then she’d wake with a small spasm, turn to me unable to see, not knowing who I was. Once she said she wanted to go home and I thought she really wanted to die, but it may be that she was still looking for a place for herself that she had never been able to find.

We were going to take her away, we came to move her to a home for people with dementia, but there’s not enough left to move. She is beyond the attention they would give her, more dead than alive.

There is nothing to be done. She has an aide who bathes her, feeds her, changes her diapers, and laughs at her plight in the kindest way. “That’s what they do when they get old,” she says, and then cleans up the mess. She makes her comfortable and mom kisses her hand in appreciation.

We don’t handle death very well in our culture, partly because we have huge industries manufacturing drugs and services whose sole purpose is the preservation of life, regardless of the quality of that life. We crucified Kevorkian and only a few states allow a person to choose the time and manner of death. We consider suicide to be insane. We need to rethink our priorities and reimagine our death. There comes a time, as in mom’s case, when preserving a useless body is the truly irrational act.