Forks

Planning for the holidays in a hospice setting is not fun.  There's not a lot of joy to the world, and we see the silent night approaching.  It's an everyday schedule we have: nibbling at very small meals, struggling to get down too many pills, watching the birds when they come, and the television from sun up to sun down. Day after day.

The schedule only changes to take a step down, like finding a new problem.  Mom's skin on her right arm has somehow peeled off to the extent that even putting a bandage on it is dangerous, because peeling off baby-soft gauze takes with it another layer of skin.  Her left arm and her face are swollen at various stages through the day. Her breathing is shallow and labored, and she when she feels the need to cough, the cough lasts for hours and hours, unproductive due to her lack of energy.

It would be easy to sink into a inconsolable state, watching this decline.  And we all get there at one point or another.  Some of us get mad at little, and very big, things.  Things where we believe everyone should know better than to _____ (whatever) - but everyone isn't us.  Some of us are caught unaware by a beautiful Christmas hymn, and then can't breathe the sadness is so deep.  So we sob, hiding in the Wesley Sunday School class until an angel named Nadine comes in, looking for her coat, and ends up holding us until the shudders die away and we're left an empty shell. With yet another day ahead of being a parent to children who deserve a better parent, and a parent to a parent who doesn't deserve any of this horrible disease.  

We could do that.  Or, we could clean out the dishwasher, and talk through a routine task, and learn this:

You know, we have had that fork for a really long time.  It's the first flatwear pattern I remember us having.  

Oh, it's not the first. We have some left from when we first got married.  It's in here somewhere (digging), yep here it is!  I wonder where all the rest went.

Probably in lunchboxes over the last 49 years. Sprinkled in school cafeterias coast to coast. 

Yeah probably. 

That pattern, that's what we bought in 1969 at  Nellis Air Force Base. You don't even remember that.  

Of course I do.  Not buying the silverware, but I remember not being allowed to touch slot machines in the grocery store. 

That spoon - the grapefruit spoon?  It's from Grandma Worrell (dad's mother). 

No, it's not, but she had grapefruit spoons in her drawer too.

And, she did love to eat grapefruit. 

That set?  That's what I bought from the Pottery Barn in Williamsburg, Virginia, before I moved to Turkey.  

No dad, it's not the Pottery Barn. It's just "The Williamsburg Pottery" and there's a big difference.  :)

After that set, we got this new set that your mother really liked.  It's a good thing we have all these forks because we sure do use a lot of them.  

If I had remembered to turn the dishwasher on the past 3 days, we'd have plenty of clean forks instead of a load of dirty ones.

You know your mother's silver set?  She saved her money from when she was a school bus driver in high school to buy that silver.
(I don't think I ever knew that.)

I am thankful for dishwashers and too many forks.  For the many wine glasses I've broken over the past several months, for the meals shared, and for the tears shed with my dad.  For the friends that reach out, for the Christmas cards that are coming in and bringing memories and bits of smiles to Dad's face.   For my angel Nadine who helped me breathe.

For another day.  

Giving Thanks

This was the first year in my life no one was up before 7am basting the turkey and no one peeled potatoes.  No one bought a bag of Pepperidge Farms stuffing mix.  Not to let everything go, I took a few hours in the kitchen with Catherine and Mary Claire making pies and sides.  Fun memories at a slower pace.

We decided this year that our time was better spent with Mom rather than scheduling oven timer slots, and heating up a gourmet take-out  meal was going to be okay.  Our goal was to have dinner all heated up by halftime of the Cowboys game, and everyone agreed the turkey breast was as good as any whole bird we'd ever cooked.  It was an emotional choice to buy rather than make, but once done it was as if a load had been lifted and we were given the gift of time.

Time is the most important thing. Mom has had time with her family this week to watch the Wizard of Oz, the Grinch, and the Garth Brooks special with her little ones...and it's wonderful to see how she responds to the music we all know so well.  Music brings movement to mom's room, whether it's soothing and brings forth a gentle hand wave, or a foot tapping beat of Don McLean's American Pie.  Mom hums to all songs, and the music takes us all to easier days for just a few minutes.

Everyone in our family knows American Pie. An unexpected blessing today was when Dad pulled up the song on his phone, and we all sang to it during a commercial break for Garth. It was a wonderful few minutes.

We're thankful to have these minutes. They are rarer these days, but they're still there.

A few thoughts as the weather turns cold

In this short Life that only lasts an hour
How much - how little - is within our power
Emily Dickinson

One of the many amazing things about being a parent is watching your child grow. The growing itself is imperceptible; you can see your child every day, watch him play for hours, and you will not see him suddenly stand a half inch taller or flex his toes on a now-longer foot. The changes in a growing child happen slowly, almost behind the scenes. They happen over weeks and months, and they happen at night while you sleep. You notice the changes when your child's too-long pants are now too short, or he stops asking you to turn on the faucet because now he can reach it himself. These little changes are the guideposts you see along your child's journey from an infant to an adult. They're miraculous, all of them, and wonderful to see. I consider myself a pragmatic person in most things, but in parenting, I am a wholehearted sentimentalist. I get teary with both pride and sadness at these changes in my growing child.

Now I'm facing the death of a parent, and not just any parent, but my mother. (It's not only my loss, of course; we're all losing her. Still, the intense fear and grief make me feel alone.) Hers was the first voice I ever heard, and I can recall her laugh in an instant despite having heard it so little in well over a year. I moved away in 1999 and laughed when Mom said I would probably never come home. She was right, of course, as she was about most things. Sometimes I missed home. Even before she got sick, I could be moved to homesick tears by the mere memory of how her hug felt, or the scent of home on a Christmas throw she once used as padding in a huge box full of presents shipped to me.

Now I'm "home" frequently to contribute in this constant vigil of caregiving we've been managing for 21 excruciating months.  Each time I arrive home, I see unwelcome changes in Mom. Like growing up, apparently this slow process of dying from cancer has guideposts, too. Three weeks passed since my last visit, and now Mom is suffering from edema in her face, neck and left arm. The nurse isn't sure of the cause; it could be fluid moved down from her brain, or it could be fluid accumulating because she is barely moving. The body has to move to use energy and distribute the fluid taken in from food and drink. Without moving, the body stops processing effectively; fluid pools in the skin. It's painful. Her skin is tight, shiny, and blistered. We raised her arm on several pillows, and it seems to be helping slowly. As usual, there's nothing else we can do.

Mom's cough worsened, too. Some unknown trigger causes her usual cough to get worse, and she has so little strength; she can't do the big belly cough needed to clear it. Instead, she coughs repeatedly and unproductively, and she sighs with exhaustion between the spells. Tonight the coughing spell grew worse again, and we tried cough drops, Mucinex, wet heat - nothing helped. In desperation, I mixed a strong hot toddy and coaxed her to drink it. She grimaced and declared it "nasty", which made me happy because at least her speech was clear. Incredibly, the hot toddy seems to have worked - her coughing stopped.


Unlike in the movies, there is no doctor here predicting how much time we have left with Mom. It's unknowable, and we watch these guideposts closely as though counting them will give us the answer. It doesn't, of course. It only shows the progression of the disease along this terrible road that none of us wants to travel.

---

Now it is fall
By Edith Södergran

when all the golden birds
fly home across the blue deep water;
On shore I sit rapt in its scattering
                                                        glitter;
departure rustles through the trees.
This farewell is vast and separation draws close,
but reunion, that also is certain.

My head on my arm I fall asleep easily.
On my eyes a mother’s breath,
from her mouth to my heart:
sleep, child, and dream now the sun is gone.—

Shifting Fluids

Last Thursday through Saturday, Mom had a really loose rattly cough, and with her weakened state, she just couldn't cough anywhere close to "productively" so it was a rough few days.  We tried lemon/honey throat drops (yuck!), lemon ginger tea (yum), light pounding on her back (feels good), Mucinex (another pill?!), and finally good old fashioned Luden's original menthol.  Whether it was the  $0.96 Luden's purchase, or time, something worked and the cough has ceased. Whew. :)

Equally stressful as the cough, all last week Mom's words were, conservatively, 90% not intelligible.  Yes and no questions work, but many times as she was trying to communicate an independent thought, it came as out as numbers.  65, 12, 21, 18 18 18 18. I wish I had a decoder ring to figure out what all those meant.  I'm sure it would be fascinating. Maybe 18 means "I'm so frustrated I can't get this word out!"

Yesterday mom had a friend from school stop by, she brought a wonderful poem from her son, and together they reminisced about when he was in mom's class, the things she must have told him, the things he obviously remembers...aren't we all like that with a favorite teacher?  It's a rare gift to have a teacher who reaches students so that 10, 15? years later, they still think about the teacher and remember specific scenes from class, basketball games, hallway conversations. The visit was warm and wonderful.

Today, Mom seems to be taking her energy from yesterday's visit an channeling it in to clear speech.  The brain is a wondrous thing...  This can only be explained by the tumor growth, compounded by swelling and fluid buildup. The tumor stays where it is, but the fluid is just that, it moves. So last week when the fluid was (appeared to have been) sitting on the part of her brain that controls speech...today it's not. So we've had these delights.

• "I thought said you did something with your hair."  (Mom looking puzzled, and she is the one who ever tells the truth about how bad my hair frequently looks. This is my mom's real speech!)
• "Great job! You did very well. This is good." (After looking --reading??-- Mary Claire's report card.)
• "He is so funny. He knows what he is talking about! And that man is just plain crazy." (While watching a funny segment on an afternoon talk show.)

And maybe most wonderful, last night during the Packers/Vikings game there was an ad for National Car Rental. After the ad ran, she said quite clearly, "I wish I could go."  And then this is what happened:

Where would you go?

I would go to (gibberish) wine (gibberish)   

Where would you stay?

(gibberish) Bellag, B...(gibberish) 

Dad walks in   Are you saying "Villagio?"  

YES!

What would you drink? 

3, (gibberish), 103

103 glasses of wine?

YES!  

We followed that with the names of Mom and Dad's favorite wineries.  They both enjoyed that conversation, it was a sweet trip down memory lane. We talked about where they would eat, how much they loved the barn doors, how some wineries are too touristy but worth a novice visit, how much they loved the tastings and canapes at Schramsberg. 

The tumor is still there, but the fluid and swelling has apparently shifted, and has given us some relief from the darkness.  It has gifted us a glimpse back to what has been a wonderful part of life. 

Football Sunday

As I've written several times before, football is loved in our family. Friday night lights in high school, college and pro games on weekends.  There's always the noise of the sack, the celebration of the score, the frustration at the flags, the way Romo always runs the play clock down. Seriously, the Cowboys are hard to love but we love them anyway.

With Mom's conditioning worsening, football isn't quite as much fun.  She slept through all of today's games except for the hour or so she and Dad had dinner and watched the Indy-Denver match up.  Her speech is frequently very difficult to understand almost all of the time, and she is frustrated at herself for not getting the words out, and at us for guessing wrong.  I find myself agreeing to a lot of things when I think I got the gist, which is an odd and not great feeling.  

A bright spot:  Mom and Dad enjoyed a visit with long-time friends last week as they stopped by on their way through town.  When we all lived far from our extended families, we spent Thanksgiving and Mothers' Day with them.  Sharing pictures and memories from the 1970's was very special. 

The past few weeks, Dad has grilled some great steaks and of course the good, and occasionally outstanding, wines are always open.  Mary Claire had 2 sleepovers at Grandma and Granddaddy's house this weekend, the first in 18 months, which she loved, and she read her new books to Grandma, which was wonderful time for both of them.  Caroline has shared the fun of her success at her debate tournaments and Catherine the woes of her broken French Horn and her fun at church....all in the way that loving grandchildren do.  Despite the sadness of what's happening in this house, the girls are still growing up and they are sharing as much of that as they can with their grandparents.  They bring welcome little bursts of energy and good cheer.

Still knowing what is happening here is sad, and day to day it's just plain hard.