Mom

April 22, 2010

/ barryweber / 2 Comments

April 22, 2010

Two days after the oil from a mile deep British Petroleum well began gushing into the Gulf of Mexico at a rate so voluminous that nobody seemed to have the first idea how to quell it (remember the dumping of old tires and tennis shoes onto the leak?), and two days after a shotgun wielding man (in local Wichita Falls news) dispatched the doorman at a night club then took off for the local Hastings bookstore where he shot and injured seven others in pursuit of a former girlfriend before putting the gun to his own soon-to-be-lifeless self,

Mom died.

She had been wheeled in on her bed to the Serenity Room at the Christian Care Center in the same town where all that gunfire had occurred two nights before- a tastefully furnished, subtly lit room where people living at the Alzheimer’s Unit at the CCC were taken to breathe their last breaths. There were several Bibles in the room and the de rigeur book of Helen Steiner Rice poems (Oh, God, please don’t let anybody read HSR to me as I lay dying. Read to me from Mary Oliver instead, or Rumi, or Rilke, or Hunter Thompson’s Fear and Loathing on the Campaign Trail, which made me laugh harder in 1972 than I have ever laughed before at anything in print, or since. )

I watched her breathe those breaths knowing that she was down to the last thousand or so of them, maybe less. Each breath was a separate, distinct, and instinctual breath now, a gasp- short, shallow, and separated by increasing seconds. At the beginnings of life, our breaths- the first ones- are reluctant ones, forced on us by organs within over which we have no control and which are a damn sight more harsh than the gentle liquid flow of oxygenated blood passed to us through our abdomen in the deep rhythms of our mother’s interior thumping and whooshing heart and lungs.

That  first mother- made music we hear has a great beat, is easy to dance to, and is never forgotten. We’re rarely conscious of it, until those times when it speeds up, misses a beat, or finally crescendos , then stops. Mom’s interior music had now become a pianissimo staccato. As I sat in front of her, about a foot away so she see me clearly, I could  feel  my own breathing beginning to match hers in either an unconsciously sympathetic rhythm or a prevenient rehearsal of my own someday swan song. Or perhaps both.

I thought incongruous thoughts as we breathed in strange tandem:  1. If the whole Gulf bottom rose in a massive methane burp (as some wild pundits were punditing) and engulfed all of the Southern states and Mexico and Cuba in a lethal greenish cloud, Mom would- hallelujah- be spared the burning, choking death the rest of us would suffer. 2. Please stop knocking on the door, Care Center workers, to see if I need anything. No. “I am watching my mom die, what could I possibly be in need of?” I didn’t say, but thought, each of the ten times it happened. 3. If I try to call Robbie, my brother, the kids, what will Mom hear me say to them (on the very off chance that she was still able to put words and thoughts together), and if I left the room and she died she would have died alone, so I went to a mirror in the room and angled it so I could see her even though my back was to her and called Robbie and my brother, the kids could wait.  4. And..

The time we stood on the corner in Akron waiting for the bus and I was holding her hand and her purse strap was in my hand and I thought I’m holding it and she’s holding it and then the bus came and she lifted me to the first step.

The time some young woman came to the front door and wanted a drink of water and I stood peeking around the kitchen doorway and the woman was crying and my mom held her hand even though she didn’t know who this woman was.

The time she fainted and fell under the dining room table after, earlier that day,  having some dental work done. I ran outside and found Dad but my mouth opened and I couldn’t say anything.

The time there was a note on the kitchen table when my brother and I got home from school. It said, “Dave and Denny” and “Dear Boys” but those two greetings had been crossed out and then this one: “My dearest sons” followed by the words “Grandpa died this morning..” and there was more and I can quote every word of it but fifty years later I can still cry remembering the utter poignancy of the words (and am).

The time I handed her one month old grandson to her at the airport.

The time she brought intricately decorated Santa Claus cookies to my fourth grade classroom and Grandma was with her.

The time I fell from the hay mow in Grandpa’s barn and had the air knocked out of me. Some cousin ran to the house and I looked up and saw Mom, Grandma, and Aunt Betty running- running!- to the barn. I remember their hair, their aprons, their dresses, their arms moving in..

almost a dance, a flurry of fast-moving color against the gray shingled house behind them..almost a dance, more like a furious rhythm, a crescendo of communal heartbeats, almost a dance..

like this one in the Serenity Room which came to an end about 10 p.m., just before many people would be watching  the latest news about the book store shootings and the disaster in the Gulf.

I sang “Amazing Grace” to her because I knew there would be – please?- some part of her that remembered, and then the breathing was down to the last three..two…….

one.

Since that night three years ago there have been  two grandchild weddings, and three great grandchildren: Charlotte, Robby, Ike, and another coming in July. A sister has died.

 And there have been many more oil leaks and spills in places all over the Earth.

Bernice Weber, center, with sisters

Bernice Weber, center, with sisters

One year ago, right now: Sitting, Singing, and Watching Mom as the dying finally came to an end

/ barryweber / 1 Comment

It was obvious by the time that Robbie and I got to the Care Center in Wichita Falls that Mom had physically moved to the final level of life before there is nothing left to do, but let go. She was moved to the Serenity Room, a pleasant room, quietly lit and furnished, and set aside from the other occupied rooms of the Center.

After several hours of being there together with her, Robbie left to drive the sixty miles back to Jacksboro, expecting to come back in the early morning. I planned to spend the night with Mom; we both thought, based on the guesses of the hospice nurses, that Mom had probably another twelve hours or so to go.

Inch by inch, synapse by synapse, Mom had begun dying at least eight years before that day. Friends from Ohio would call my brother and me and tell us they were concerned about Bea. Finally, Mom called me in the Spring of 1994 to tell me herself that she thought it was time that she stop driving a car. In itself, that was a great gift; I’d helped several families in the past with the tumultuous decision, sometimes necessarily involving deception, to get the car away from a mentally failing parent. Mom was making that part of the journey easy for us, but since I didn’t want her to change her mind, I flew to Ohio the next day, made arrangements there with her friends to watch over her, and drove the car back to Texas.

Several months later my brother and and me and our families moved Mom out of the house she had lived in for fifty years, five of them alone. It was a time of mourning for a great old homeplace for all of us, and we “left our mark” by burying a box full of momentos in the front yard. My brother buried a baseball bat, and I buried my high school graduation tassle, along with stubs of pencils and tractor tire valves Dad had carried in his pockets and a Christmas brooch mom had been given by an old friend (Mrs. Byers, for those who remember her).

We moved mom to an assisted living center in Alabama, but after two years there she began wandering into other people’s rooms, and could no longer be depended on to turn off the stove, so we moved her to more affordable assisted living apartments near Robbie and me in Texas, where she lived until July of 2009. She spent her days there walking the halls, looking for her hearing aid, and singing to herself in a strange guttural but rhythmic groan which she claimed was old hymns she remembered (“Mom, you’re singing too loud, shhh!” And would shhh for about 15 seconds and then begin again). We’d pick her up and take her to church, to restaurants for lunch, and to our house for gatherings when our children would visit. We tried so many times to help her make cookies or a pie or cakes, but finally gave up when we admitted to ourselves that that great passion of hers had ended. (I have dreamt about her rhubarb pie, and can even make a reasonable facsimile of it, but it is not hers.)

She liked our dogs a lot. (Who wouldn’t?)

But each day more and more of Mom was going away. She would ask about the “nice preacher” at church (me) and she would wonder when her mom (who died in 1990) was coming. She would call me “Ike” (my dad), Robbie was always “Karen” (her other daughter-in-law), and the pictures of six beloved grandchildren on her wall became the pictures of six strangers. She sometimes sat all day by the window looking out at the grass and the trees and the skies and I am grateful her mind moved into that particular mode of rest.

In July of ’09, Mom fell, with a broken hip, and here is where the story takes me into the only episodes of personal regret I have about the end-of-life experiences with Mom:

I gave her over to the “System” which is different, far different than what I call the Way. The Way is the way of the universe, the way of nature, the way of God. It the way that life is affirmed as life is meant to happen- a beginning born of love, a life lived in reflection of that love and other loves, and then a death, when the living/loving part of life is finished. The System, oppositely, has evolved from our human and demented notions of death as an unnatural state of ultimate illness, which is shaped and enhanced by a medical system full of many kind and skilled people, all of whom need paid, and are paid by a digitally-fueled power plant of insurance, Medicare, and- can I get a witness?- greed.

I gave her to the System when I should have had the calm, the sense, and the advice to allow her to step onto the Way. On the way of the Way she would have gone to a hospice, been bedridden, cared for, and allowed to experience the reason that causes poppies to grow on the earth: morphine. There would have needed to be no pain as infection would have set into the broken hip and eventually spread to her body, which, in all likelihood, would then have caused her to die of pneumonia. It would have lasted about a week to ten days. She wouldn’t have known what was happening. Robbie, my brother, Karen, or I would have been with her constantly.

But, she was in the hospital for about seven days instead, during which she twisted, and turned, pulled at her catheters and I.V.s constantly, got angry at me, Robbie for hurting her, trapping her, doing things “my Lord Jesus would never do to anyone!” Ancient religious fear, learned from shouting evangelists as a child, rose in her consciousness like an infection, and broke. It broke through a lifetime of unselfish service service to others, through years of Sunday School teaching with young people who loved her, through countless visits to older, forgotten women in the community, through so many hymns sung around the piano with her mother, Pap, and sisters, through a lifetime lived in the love of God, and it broke my and Robbie’s hearts. “Is the devil doing this to me?”

She went from the hospital to an Alzheimer’s care unit nearby where she lived the rest of life- eight more months. She walked around there, all day, every day, looking for her young brothers and sisters and her mom and dad. She would eat a little, lose more weight, remember almost nothing, walk some more, fall often from her bed near the floor surrounded by pads, poop in her clothes, complain (but kind of nicely) about much, and then the phone call, and the move to the Serenity Room.

Where she was, at last, serene again. For the final eight hours of her life she was awake, on her side, still, and without pain. Her face was no longer confused and I stayed in front of her as much as I could. I knew she was dying and I wanted more than anything for her to be with one who loved her. I talked to her about who was waiting for her, about Dad, Denny, Robbie, Karen, Joshua, Darcy, Sarah, Emily, Lizzie, and Bob (the last grandchild she remembered). I drew pastels of her which are too difficult to look at and I sang to her- “Amazing grace.”

“It’s Ok, Mom, go now. I love you, I love you, we love you. Dad is waiting, Grandma is waiting…go.”

And, one last breath..eyes still open, seeing me, seeing others..and she was gone. Almost exactly a year ago, to the hour as I write this.

Yes, I wish she could know her great-grandaughter Charlotte was born a couple weeks ago and that her great-grandchild in Australia will be born a few weeks from now, and maybe she does know. Charlotte and the still-unnamed child are the Codas to Mom’s life well-lived.

But such is life, and such is death, and she was on the Way once more, as we are on the Way..

One Last Step (surely the final chapters are near?)

/ barryweber / 1 Comment

So, last Saturday morning

after walking up the hill to the red one-room school 1000 times

and up that same hill to the United Brethren Church where she

was baptized

giggled with her sisters

brought her sons who then giggled at Lily Wolf singing off-key

watched her Pap, and then her Mom buried in the nearby graveyard

and after steps back and forth between the kitchen and serving area

at Nick Yanko’s Restaurant and Grill

and after a walk to the judge to be married to Ike

and two more walks from Ike’s car to the Summit County hospital

to give birth

and after walking up and down up and down up and down stairs to

the cellar to wash clothes

to get stuff out of the freezer

to the upstairs to put boys in bed

to sleep

and to sleep herself

and to put those clothes from the cellar, which had hung outside on the line

in appropriate chester drawers and

make beds, then get preserved

pears

peaches

strawberry and raspberry jelly off the shelves and take them downstairs

after she had, months earlier, carried them all upstairs to put on the shelves,

after she had walked around the church teaching Sunday Schools for years,

making Street Fair pies for many more years

going to meetings: garden club, PTA, Secret Sister, Card Club, 4H, Friendly Class,

then up to Jean’s, up to Tommie’s, down to Olive’s, into town,

up to Betty’s, and back to Grandma’s

after walks through the woods- 2 miles a day with her best friend from up on the hill, then over to the barn to give the workers there some cookies,

or the one with a birthday a cake,

and then out to the mailbox (over and over and over) again to mail her sons,

then her grandsons and granddaughters

cookies

candy

more strawberry jelly

and more cookies

and more

and after she walked to where they buried Dad, and back there for all the reasons wives of 50 years go back to see where their husband is lying

and after she walked in that massive house alone for three years,

after she walked in the assisted living home around and around and around the hallways,

then around and around other hallways, looking now in increasing emptiness of thought for her Pap, her brothers Harry or Tom- when are they coming? Where are they?

walking walking walking walking walking

walking

and then,

last Saturday morning,

right after breakfast in the dining room of the Care Center,

there was a

final step.

One Last Step.

And her legs would go no further.. Or the mind which told the legs to “go” stopped

(more likely)

and so those of us who walked with her along parts of that long Walk through Pennsylvania, Ohio, Alabama, and Texas and parts of ten decades

must look back for her (with her as best we can)

remembering what she would remember about that

Walk.

(and now she sits)

Alzheimer’s, Part 1000, another day

/ barryweber / 3 Comments

I’ve not been to Mom’s place for about a week..finally I find her standing in a room (not hers). I find her because of the noises she makes.

What’s the matter with me?
What’s the matter with me?

Mom, look at the birds (tiny birds-thrush?- in a cage we have walked to. Look at the pumpkins (gourds, arranged around the fireplace near the thrush cage).

What’s the matter with me? Are you taking me home?

Mom, you broke your leg, I lie.

What?

You broke your leg, you’re in the hospital, I lie some more.

When are we going home? Tomorrow, I am lying now like I am 12 years old and she smells cigarettes in my hair on my clothes on my breath, No not me, must have been that bum we were talking to down by the creek. I’m coming here tomorrow to take you home.

Everything is a lie now..when?where?who?why?how? And not a single goddam one of the answers matter, it’s only the questions which bubble up through the cloud of her consciousness and she waits for an answer but only for a moment and that moan and groan or whatever that damned sound is that she has been moaning/groaning for ..3 years? Yes, that long, even though three years ago she could still respond to more than one thought for more than a few seconds and think about about some things besides the vague memory of her mom, her husband, her dad, her sons (as little boys, where are they?), her sisters.

HolyMaryMotherofGodprayforussinnersnowandinthehourofourdeathAmen, I pray, though I am not Catholic and know damn well Mary is not listening, but we are dying, right? This IS the hour of our death, yes? Amen.

The woman who hit her last week is the woman who is holding her hand this afternoon as they walk to the where the music playing. Lois is her name, but that matters even less to her in this moment than it does to me. I am grateful mom has contact for awhile with skin, not my own. We need the warmth of skin, and Lois and my mom are holding hands and warming each other’s skin and there- perhaps..searching for spiritual meaning somewhere within this quagmire, this ignoble end to a life- there, perhaps, is the Christ- in the warmth of skin, that is. There, perhaps, is the “I will be with you always” and there, perhaps is the “I am the alpha and omega.”

Perhaps.

Or, let’s be realistic, maybe that’s not it at all and I am reading what I want to read into the little drama,

And one way or the other it doesn’t really matter, does it? I reject the cliches that too many people are too willing to try to placate each other with before tears run too hard and too uncomfortably. (You should know that I find the book of Job to be an abomination) None of these people are learning a thing about working out their salvation with fear and trembling and not a single one of them for a single second during their noise filled, cloudy consciousness filled days, remembers their baptism, but some of them are hollering, Who are you!, and others yell, Where am I?, and another man makes noises like a car, and another woman is peeing in the hall and another is staring at a shoe and another is sleeping in front of the cage where the thrushes live, near the gourds, down the hall from where the music is playing and where Lois has just let go of mom’s hand because because because because

One of the last Alzheimer’s posts; it must be..

/ barryweber / 3 Comments

When Dad died, my brother and I
cleaned the basement,
handing off the chapters of forty years
to cousins who played with us so long ago—
Hide & Seek in those same dark corners
from where we now pulled old tools and
cans of long-dried-up paint.
The dumpster we rented filled quickly with
that stuff Dad thought he would need,
but which he, nor we, never did.

Mom, upstairs, busy remembering in 11 rooms
still filled to bursting with her own and the together life
of her and Dad.
Every kitchen drawer laden with knives, spoons,
measuring cups, spatulas, and tools that we looked at over the years
never knowing what/how/why they were owned by her/ kept by her/
or ever even used by her in the quiet, private preparations
of obscure and intricate recipes involving ham,
or pink cakes with blue icing,
or any of a green-to-red rainbow of jams and jellies.

Even the stairwell between the kitchen and second floor was filled
with cake pans, Jello molds, and trays for everything that she needed
carried, moved, transported from her kitchen
to the tables of others.
(“Is this for here?” we had learned to ask as children, seeing dozens of cookies
cooling on the table after arriving home from school, and learning to deal with
the answer which came too often: “No, these are for church” or some wedding,
or some party, or somebody whose name we didn’t know and didn’t want to
know who was going to pay Mom for all these cookies, leaving my brother and
me with a few broken ones, or none.)

Later, once then twice,
in two years then three years,
we would move and cull more;
then move farther and cull further.
First, it was out of the upstairs,
then down to just three rooms,
then out of the house altogether when Mom
remembered the cakes but not how to make them.

And then she forgot, most of the time, about the cakes themselves.

And here we are now too few and too many years later,
hollering, my brother and I, “Mom! Mom!”
…not so she will know we are home from school,
…not so that she would come and see the pile of blocks we have built ten high
on the linoleum floor of the dining room,
…not so that we can show her the fish we caught
or the grandkids we are bringing home for her and Grandpa to see,
…no.
This time we’re hollering “Mom! Mom!”, first me, then my brother,
we’re hollering “Mom! Mom!” so that she will know that we are beside her
and so that she will know—somehow, please God—through
the defilement of Alzheimers
that she is going
to die

loved.

“Mom! Mom!”
.
.
.
(I’ve written in the past about this journey with my mom:
Aug.25, ’07:
Nov.11, ’07:

Update- A New Year of Alzheimer’s

/ barryweber / 3 Comments

The post below needs an addendum, because things have changed. Not the world, not Mom, not her prognosis. It’s me. Having written what I wrote, I got some advice from someone who’s been through a similar parental illness, and it has made a world of difference. I share it here for two reasons:

1. So you don’t have to worry about me going insane.

2. So, in case someone reading this might be going through a similar situation, you can perhaps benefit from my own mind-shift.

I’ve given lip-service and lip-service only (I now realize) to the fact that Mom will never get better- not in the remainder of her life, not for a single day. There may be moments when her sense of humor or sensory abilities are better than other moments, but- overall- there is a decline in her physical brain and that will continue.

My own frustrations with that situation were born, I know now, from my stubbornness in letting her go. I wanted, if I could, to keep her the way she was, in whatever small ways I thought there were to do that. Thus, I would get upset at her for her continual accusations that staff people in the home are stealing her refrigerator goodies. I’d tear down her hand-written sign of the day, warning them to stop taking stuff, and tell her upsettedly to stop that nonsense!

I’ve been doing that for two months now and it hasn’t helped at all, nor will it ever help at all! Therefore, my advisor suggested, I might try just going along with where my mom’s mind is, instead of trying to push and and pull it back to where I want it to be. And, that attitude has worked for me for three days in a row!

On Wednesday, I put the sign which I had torn off on Tuesday, back up on the refrigerator (as I was filling it with more goodies). “If they take these yogurts, tell me, so I can replace them,” I told her. She was smiling as she promised to do that. So was I.

Her complaining about ears and eyes? “Let’s talk to the Doctor about that the next time we go there,” is my now already-much-practiced response. Instead of trying to prove to her again, to no avail, that we have been to both ear and eye doctors very recently, I’m simply allowing her brain- as it exists this day, in these moments- to be that to which I respond. I’m not trying logic anymore with the mother I used to know, in order to get her step forward from some “hiding place.”

There is no such hiding place, of course. Mom is not making a conscious decision to be suspicious, forgetful, frustrated, or weird. That’s her brain. And there’s not a thing I can do about it other than humoring her, agreeing about everything with her, and keeping her supplied with shelter, food, medications, and my..

daily presence. You read that right- I’ve been there daily for the last three days, and have left each visit in a good mood, not feeling frustrated, and with at least a little hope for myself. I had been losing that, as I knew I was losing her.

So, I’ll be supplying Mom and the entire county (if that’s what she thinks) with snacks for as long as she is able to go the refrigerator and get them. I’ll put more flowers in her room, and more of the halfway-pleasant me back in her life.

I’ll let you know how it continues to go, as a way of saying “thank you” to those who could see what I wasn’t seeing.

A New Year of Alzheimer’s

/ barryweber / 4 Comments

More on the continuing progress (regress?) of Alzheimer’s into my Mom’s brain, and her being. Previous posts are here and here.

mom photo

Father, forgive me for I have sinned. This was the first trip to my Mom’s since Christmas Day. There are no excuses- she only lives two miles away- except one: it feels to me like more and more of a chore to go see her.

And it is.

Once she recognizes me when I come through the door, she is glad to see me. But there is no conversation possible anymore. The three events which she can hold in her mind at a time, are simply repeated over and over. (Did I already tell you about….? Yes, you did. But then she tells me about ‘it’ again anyway.) Each of the three events “happened” yesterday, no matter when they happened. Here, for your edification and enlightenment are the very shortened versions of those events:

* A woman with whom Mom eats, eats very slowly. The ‘young girls’ who work in the dining room want the woman to hurry, so they can go home and go their parties. Yesterday, they made the slow-eating woman cry.

*They– the “they” with no faces, no names, and no visibility- are taking the yogurt I bring to Mom from her refrigerator. Mom makes signs for the refrigerator door: “No More Freebies.” I tear them up and tell her to stop it. But, yesterday, they were at it again, so up went another sign.

*Her hearing aid doesn’t work- “Can’t we get a different one?” She needs new glasses- “I can’t see anything anymore.” I remind her, with pictures that I took, that we have been to audiologist and an ophthalmologist. She can’t see the pictures or hear what I’m saying.

In fact, she is voicing what is the god-damnedest problem about Alzheimer’s that I hadn’t known about, and which is, in fact, horrible. Just as her brain has less and less capacity to remember, her brain also has less and less capacity to make sense of what she is hearing and seeing (and tasting, feeling, and smelling). She can see and hear, but what she sees and hears is not being translated by her brain into anything coherent or understandable. So she thinks she is simply not hearing and not seeing, and those maladies, to her, should be fixable.

One of her relatives in Ohio called the home administrator to make sure my wife and I were telling the relatives the truth about Mom’s condition. These relatives are well-meaning, of course: they love the woman Mom was, too. But the woman Mom was, is not the woman Mom is! 90% of the time, that woman they knew is gone! One of them tells me they will be praying for a healing from God for Mom. My increasing bitterness over the disease actually tempted me to point out that out of the 30 million prayers for the healing of Alzheimer’s patients prayed so far, not a single one has been answered. It actually makes me want to wrench what hope may exist in another person’s heart, out of that heart! And that worries me, about myself!

I’m open for suggestions. I’ve looked around some of the Alzheimer discussion boards and I find no real hope for any better tomorrows. Worse, I find some of the same cliches that I used to get tired of hearing in AA meetings: “One day at a Time” and “Let Go, Let God.”

I can’t even cry anymore. And while I might sound angry, I’m not. I’ve just become passive to Mom, almost neutral in my feelings toward her.

And I’d rather be crying, or angry. I hate what this disease is doing to Mom. But I don’t like what it is doing to me, either.