Category Archives: Bone Cancer

Markers

The ms contin tablets counted twice, first by the nurse, then by me, we march them in to the bathroom, wrap them in toilet paper, and flush.  We have to watch them go…all the way round and round, ….yup…all gone.   Sign on the dotted line…..for a moment my mind flees…

The  approximate street value of our morning flush at ten bucks a piece,  is in the thousands……. maybe a career as a kindly middle-aged  smiling drug dealer who tends the elderly,  appropriates  their meds upon their death, then uses the cash for social projects….feeding the hungry,  homing the homeless,  preventing teen pregnancy’s,  free childcare,  funding a health clinic….maybe that is in my future……Granny Robinhood.

Naw…I can’t even speed… never mind break a real law….shit … sometimes I wish I could be more of a rebel than choosing  a loud purple OPI nail color for my toes…

I take all the medical debris to the trash…then my usual detour to the bay. The concrete slabs are warm, the sun just up, and the largest slab that  tilts into the water is a favorite seat. I lay back,

corpse pose…. ah there it is …the death humor…….

I feel the warmth of the man-made stone enter me…the memory washes over me… another rock, another time, another place…

“So…” I queried, “They are over there?”

The ranger nodded over her shoulder towards the slight rise in the landscape across the lake.

The  blackened tumbled rocks,  an erratic darkened pile from a giants game of dominos,   jumbled and scattered,  seemingly  forgotten. Patagonia Lake State Park, south of Tucson, north of Nogales…  A secret place, a serious oasis in the Sonoran Desert.

 “Yes,  there are Petroglyphs”.

Petroglyphs. Just the word conjured mysterious tales of a forgotten ancient peoples.

The park ranger gave no further information. 

Always haunted by stories….Apache Girls going on  puberty driven vision quests, looking for spirit guides,  the seeking,  the hunting,  the journey’s that always end in the biggest discovery, that of ones self,  ones place. 

I find the trail, merely a barely noticable change in the desert floor, a change in the  texture of the dust, rocks brushed aside, kept my attention downwards for most of the journey. It was longer then expected, first round the end, across the river, through the cow pie mine field, then start the ascent to the rocky goal,  the blooming ocotillo arms applauding my courage..I take deep imaginary bows with my breaths…

At first I couldn’t find them. Then I sat, laid back upon a big flat warm stone and closed my eyes.

I heard my breath, my heart beat, felt them quiet and fall away.

I don’t know how long I laid there, but when I opened my eyes, the sun had shifted, and there just to my right was a human form carved into the stone, a thin limbed great swollen body human form. I turned onto my side, and traced the outline of this human stick figure with my finger. Then I saw another and another, and with each I traced I seemed to see even more and more, more than I could have ever reached even if I had more than just this day.

Some were animal forms, horned beasts, some geometric, grids, and the ones that held me most the spirals, the open-ended spirals that some say are maps marking water, and some say are marks of migration. What ever their meaning they are markers, written for purpose, written for reason, written to last,  written to be seen,  written to witness, to mark, they are markers. I see them, I hear the Red Tailed Hawk’s cry, the horned sheep stand watching beyond the hill.  I am filled.

 Haunting, numerous, I still see them as I lay on this warm concrete slab eyes closed.

I have been on an inward spiral on this journey.

My territory, my communications, my senses, slowly spiraled inward getting smaller and smaller  fewer and fewer. I saw nurses, and  aids and well wishing neighbors, with prehaps weekly quick runs to the grocery. But little else.  Like the spirals in Patagonia I saw long ago my physical territory  spiralled inward, limited, confined, restrained to within the park, within the trailer, within the family room, within Hilda’s proximity. 

I walk back to the trailer, part of my task complete. The spiral as turned, and my sphere is opening wider and wider. My journey now is  starting to spiral outwards, gathering back what I left, leaving what I now know to be of no use.  Like the petroglyphs in Patagonia, there will be markers for me to follow.

It’s the sounds I notice first, the talking of crowds, the honking of cars, the radios at stop lights blasting.  It is conversations with laughter, bright colors, restaurant banter, cocktail smiles. Each startles, each shows what I have missed, what I used to not notice, now alway see.  Girls walking along the road,  g-string above their jeans, I laugh, …showing your underwear to strangers it wasn’t exactly the marker I was looking for. 

This marker laughter…

I get the first absolutely alone time I have had in over a month. I run a hot bath, soak, the water cools, I drain it and run another. Such luxury I used to take for granted, never again.

This marker  gratitude…

This marker solitude…

 My crackberry buzzes, a message, a text- an email- a voice mail. I smile at the possibility  of communication with the outside.  I am laughing reaching for a towel wipe my hands hurry quick who could it be!

This marker  possibility!

I feel bad when I have to relate the circumstances of the day, ….my mother in law passed away,  I text.

Oh sorry, the reply.

Do not be sorry, it is ok, we did well.  I am so glad to hear from you, its alright.

This marker friendship.

I want to say,  I am spiralling out now, can you see/ Can you see the path opening, clearing widening?

My younger self found the marks in stone, saw the horned sheep, the flight of Red Tailed Hawks. She traced the signs, and made them her own and noted…. the walk back always seems a shorter one than the one you took to arrive.

My return  will be a shorter one, a text-  a voice mail-an email are welcome,  they have become markers for me to follow…I am ready.

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Filed under Bone Cancer, Children, Death, Elder Care, Family, Griff, Hilda, Hospice, Life, motherhood, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing

Letting Go

As promised  the continuous care nurse arrived shortly before 4 pm,  promptly asked for the care plan, where she could sit,  and where  the best place to receive a signal for her laptop was, and not in that particular order. She would be working until midnight,  she explained then another would arrive for the graveyard shift.  

Nice choice of words….

Take a breath… you wanted help, here it is.

Let it go…. put the  bad girl on a leash,  shut up and stop worrying about the small stuff.. Not my strong suit…. dad….are you still here?

Always…. piece of cake. Don’t you remember who you are?  Tell this bitch you’re Scotty’s daughter .. fucking fearless.

Not true, but thanks dad.

It wasn’t going to be as easy as I had thought, this letting go,  relinquishing first chair in Hilda’s care.

“Hilda needs her pain meds at 4pm.”

“Ok, let me take a quick look at the care plan.”

“The urine needs to be emptied too, I didn’t know if I should write the amount down before I did it so I left it ….”

“Ok,  I’ll look at that in a minute.”

Jackie is here now.

She arrived the day before, Hilda looked up, through half open eyes….

“Hilda,  who is this? I asked.

“Jackie” she replied.

“Yes,  it is Jackie, and Gary and the girls will be here on Friday,” I add. 

Jackie is the last person Hilda recognized, she  really saw her, she said her name out loud.

 Jackie’s name was Hilda’s last clear spoken word … a gift.

Jackie and I are looking at this nurse and then back to each other as time continues to tick away and Hilda’s medicine remains ungiven. Paralyzed, don’t know whether to go ahead and give it to her myself, or ?   Exactly what is the etiquette with nurses, the dying patient and the previous caregiver? 

Does anyone have the cliff notes for this situation?                                                                                       

Good girl is standing by, not wanting to offend, but the other one is at the end of her leash barking…..tick tick toc.

I think of Captain Hook, and the croc.

 Tick- Tick,                                                                                                                                                                                                                   Tick- Tick- Toc,                                                                                                                                                                                                       Captain Hook and the croc-

Great… rhyming madness has beset upon me.. Crap… beset upon me..I am seriously loosing it now.  Surely thinking in 19th century colloquialisms is not normal. I make a secret pack with my remaining sanity… On my honor I will try to lay off  Emily and Jane for at least a little while….Please just let this woman give Hilda her meds…NOW.

I watch as she brings out her laptop looks throughout the entire 800 square foot tin can for a signal.

“There is no signal in here, you’ll have to go outside, ” it’s all I can do to sound civil.

” Well, …. I like to enter my notes straight onto the website so the next nurse will have them, I need a signal for that…”

What notes, you haven’t done anything yet…Down girl!

She finds her spot, close to the front door, I watch as she starts typing after reading the care plan.

I  stand and stare hovering like a red-faced balloon.

At five pm,  ….”excuse  me  but Hilda is an hour past due for her pain meds…”

“Oh! Yes, let me do that right now…”

Ya think?

Mirrors, that’s what these moments are. It is like holding up a giant pore enlarging, get every last black head, every last stray eyebrow hair magnifying mirror. All your flaws, straight up, time for my close up Mr. DeMille….no hiding it…an HD  mirror showing you exactly who you are.                                                                            

I realize I am an advocate, and polite but sometimes not both. Now one can be polite and be an advocate, but sometimes both can not share the  exact same space at the exact same time.

The meds given, my hackles down, the growl quieted and on stand-by, I stand relieved of my duties. I don’t however leave the room, nor stop my watch.

Hilda’s breathing is open-mouthed loud and wet, chest rising ever so slightly and labored. Jackie and I look between her and ourselves.  We know the last watch has begun.

We called it. Weeks ago, Jackie and I during on our driveway conversations.

“She is in charge, all the way you know. She knows exactly what is going on…”

“I know”, Jackie says. “She is going to wait until everyone she knows has come and then leave. Just you wait and see”

She as right, the past weeks more people have passed through this trailer than I would have thought humanly possible. Neighbors,  friends, grown grandchildren have come and gone. There was only one left to arrive her son, and her granddaughters, my family.

Jackie says, “Just you watch she is going to protect Gary all the way to the end, just you wait and see,”

Sibling rivalry does it ever really go away I wonder? Not between these two…..Each is so aware of the gifts the other has been given but not in their own….it is exhausting…..

I nod. Hilda is in charge, I start each day with a count down, Jackie comes in three days Gary in four and so on. I narrate like some NFL color commentator… On some level I know  that she is listening, and choosing her moment, choosing her time to let go.

The Midnight nurse arrives before her shift. We are all still awake, not wanting to leave Hilda with someone we don’t think is up to snuff. We need not have worried. A Mrs. Doubtfire,  she almost hums with contentment as she comes in, meets with the other nurse, and gets settled in. Around 1245 I am comfortable enough to go to bed.

“Hilda, I am going to bed, Gary and the girls will be here in about 12 hours….” I hit the bed already asleep.

Two hours later, I am  suddenly wide awake. No one woke me, I heard nothing, I was just awake.  I know it is time. Hilda  has begun to let go.

Death rattle does not describe it . The sound. It is unimaginable, it is a wet train through water,  loud, waterfall liquid loud,  and unsteady, no rhythm, no cadence,  full of pause and gasping.  It is work. It is labor. This is the almost death, the almost, the have not let go… yet.

Mrs. Doubtfire sees me, ” Yes,  I think it is very close now, I have given her more morphine, I want to assure you she is not in pain.”

I look for Jackie, she is not here. She could not stand the sound and has fled to our retreat on the driveway. Griff still asleep, Mrs. Doubt Fire continues, ” I don’t know if her husband should see this,”

Are you shitt’n me,

Dad stop!

“I don’t think I would like to tell him he missed the last moments of his wife’s life,”  I offer her….

It’s just after three am, we decide to wait just a bit.

Jackie is in tears, it’s now I realize I must be strong for her, although I have tended and nurtured through the last 30 days, Hilda is not my mother. I am removed from the intensity only slightly, but just enough to hold it together. Tears fall, but not uncontrollably.  We stand witnessing the labor for a while, Jackie wakes her father, twice, as he thought he was dreaming the first time. 

I think the hardest part was not her going, it was the watching. I witnessed the good byes, the saying goodbyes, the last moments of a married couple, after this he would be forever alone and never whole. I knew this watching it, felt it swell in me sharp and pointed. 

Griff rubs her cheek, and whispers.

Nurse says, “Oh sometimes it is not good to touch them as they are making their journey they  might find it distracting…” 

“She likes her cheek rubbed”, Griff retorts.

Good for you Griffy!

He talks to her, and for a while I can not decipher what he is saying.

Then I do.

” Go to John,” he whispers holding her hand. “Go see John”.

 John the child they lost at age five, 45 years ago,  he was telling her to go see him, go find him.

And just after 5 am on February 19th,  a Friday, just before morning light, Hilda  did. She stopped her battle, she let go.

Griff turned and without skipping a beat said, “That is the weight of the world off my shoulders, she isn’t in pain anymore.”

I still had a weight, I had a call to make. How does one tell a spouse their mother did not choose to wait for them to arrive?

Cliff notes? Anyone?

In the end, it went something like this…She had other plans, she did not wait, she knew you didn’t need to be here, just knowing you were on the way was enough.

What comes after, counting of  pills, witnessing the  disposal of medications, and the choosing of what to send her out in,  a purple sparkly dress if you must know, much like what I put my own mother in….the clearing up, and we too begin our journey of letting go.

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Filed under Bone Cancer, Death, Elder Care, Family, Griff, Hilda, Hospice, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing

The 29th Day

“How long has she been breathing like that?”,  the hospice case worker asks me.

She is a smooth caring cloud, a smile wearing a black  knit wrap, soft hands and fierce with her iPhone.  Not our first case worker, she came to our rescue one afternoon via a routine phone call.

“I’m just calling to make sure you guys got the DNR papers back from the physicians office, and to see if there is anything else I can do for you while your regular worker is out of the office.”

Your regular worker. That one arrived nagging about everything from the traffic, the rules she must follow, mounds of paperwork,  Florida cold weather, and generally told us everything about HER and asked nothing about my mother-in- law.  I sat and knitted while  listening to the idiot and my father, “All she does is piss and moan, gutless wonder, … fucking clueless.”

Ok dad thanks for playing. I can’t help but smirk at his remarks they are spot on. Then I remember he is dead, and I am smiling about a conversation I am having with myself.  Wonderful, another news bulletin scrolls across my consciousness.

“Bob, the story began some 29 days ago when our victim arrived via super shuttle. By all reports she was a caring and loving individual, and I quote, “a nice girl who always took out the trash, washed the dishes and kept a clean trailer.”  Neighbors are stunned here at Sky Harbor Estates this afternoon. For some unknown reason  while a hospice case worker was visiting, this woman, identity still unconfirmed at this point,  seems to simply have imploded while knitting. Some suggest the heat of the needles may have sparked an explosion.” 

 When the first one  left Hilda looked at me and said, “I couldn’t wait to see the back of her, I thought she would never leave.”

OK good,  so it wasn’t just me…. and my dad.

The new one arrived like a fresh breeze across new cut grass, her smile and great black shawl entered our lives, and we were never the same.

“How long has her breathing been like this,?” she repeats the question.

 I grab my notebook flip the pages, find the entry, “It started just at night,  about four days ago, and for the past two days its been pretty much just like this, she is no longer swallowing, I give her liquid morphine and compazine only, and no more straws,”  I read my notes from the last nurse visit. They are my confirmation,  my affirmation that my care is correct, that I am doing it right.

We lock eyes. I knew it, she just confirmed it, we are nearing the end.

“You need continuous care, I’m going outside to make the call, hopefully we can have a nurse starting at 4pm today and around the clock from now on.”

My heart didn’t just leap, my soul soars.  Another being here to help with her care? Around the clock? It means sleep, it means help,  it means no more notebook,  as the nurse would take over her care her medication, it means room to breathe….it means I wont have to be the  only strong one when the time finally does come, and I will not be alone.

“I have to get out of bed, ….I have to get out of bed,… I need to get out of bed” I turn and see Hilda, eyes partially open, restless, pulling at her sheets, trying to kick and move and get out of bed.

I know instantly she has to go to the bathroom, “It’s ok,  just go,  Hilda,  there is a diaper on the bed, you are not strong enough to get out of bed.” It has been our mantra all morning.

“I have to get up,….  to get up,……   I have to get up….” , this has been hers. 

The case worker come back in, “All set,  you will have continuous care starting at 4pm.”

“I have to get up I have to get..up”,   Hilda whimpers from the bed.

It was the worst part, that restlessness before the end, the whimpering to get out of bed, the crying, I can not explain what it does to ones soul to be absolutely powerless to help, and to be clueless as to any sort of  a solution. For hours upon end we have sat and listened to her whimper, powerless. She was not resting, not comfortable despite pain medication and compazine cocktails. Nothing worked.

“She wont go,  you know, in the diaper… and she isn’t strong enough to get out of bed anymore, the bed pan can’t be used as she has shingles now…”,  I look at  the case worker.

” Well lets just get that nurse back out here and cath  Hilda shall we?”  Her black shawl swirls as she goes back outside to get a phone signal.

I told you I loved her, and I still do.

“Now you need to help me do this,”  the nurse explains after he arrives to give Hilda her catheter. “You will have to hold her leg up for me, and someone will have to be up by her head as well”.

We assume the positions, I try to think happy thoughts, I think of Pooh Bear, happy thoughts,… I’m just a little black rain cloud,  hovering over, the honey tree..crap wrong image wrong song head please stop shit!… despite what I may feel about doing this, it must be worse for Hilda. I gather my feelings, concentrate on making Hilda the priority, not my embarrassment.

” oh this one is too big, be right back, I have another in the car.”

Wonderful,  thank you universe for making this such a  simple process….what am I supposed to learn from this?

He is back, we assume the positions again, ” Wow, that’s unusual,  her urethra is in a strange place…,” he looks across my mother-in laws nether regions towards me,  …..expecting a comment?

 I have no fucking idea, dude get it done and let me for the love of god wipe this image from my memory forever…

“Looks like she was urinating after all in the diaper, so its up to you, shall we go ahead with this?”, he is looking at me.

whatthefuck!

Bad girl screams   you gotta be shitting me…motherfucker you weren’t here when she was begging to get up, you want to stop now?

” Yes, continue.” 

Finally it  is done. Hilda’s swollen belly smoothes, the bag fills,  and Hilda rests.

Its the 29th day, and although I don’t know it yet, Hilda has already seen her last sunrise.

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Filed under Bone Cancer, Death, Elder Care, Family, Griff, Hilda, Hospice, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing

Doula of Death

I walk around the corner and hold my breath.  Through the kitchen, pause, turn into the family room and the breath just catches in my throat, the hard to swallow lost all moisture from my mouth remember to breathe moment is my morning  jolt,  along with dare I say it, … instant coffee. 

I realize it is fear. I hate being afraid, not the movie is scary have to scream out loud hide my eyes afraid, that I handle quite nicely thank you. No, not nicely. I scream I hide my eyes,  sometimes have to either  leave the room or theater, or yell at the screen out loud, “DON’T OPEN THE DOOR!”… friends will not sit next to me  at the movies anymore. Playful fear I have down.

It is the other, the not so playful paralyzing fear, that fills me with dread.

It is the fear of the not doing. The not doing and then, specifically the regretting.

Regret. A nasty,  little,  simple word that covers a world of pain. Regret. The coulda-woulda-shoulda’s of ones life can come back as often and painfully as a too garlicy buck and a half  hotdog from Costco and leave just as nasty a taste in your mouth.

In this case, the fear is Hilda being gone when I round the corner, which is only heightened by the fear that I have missed her going completely. Coulda-woulda- shoulda been there….

Hilda is now ashen face, more than gray,  a white washing of grey, she has no color, her eyes remain half open, her mouth open, breathing labored. Apnea comes to mind,  the exhales  that are forever, raspy and wet then give way to nothingness. The silence screams, it urges you to look, to watch closely, to witness. I glance at the clock, my eyes tick toward the clock, and back to Hilda, tick,  toc,  counting seconds, 2, 10, 15, 20, then it comes, at last, a long inhale,  her chest rises slightly, a breath.

I do not know how she is still here. There must be something left to do, something else she needs to do or say before she goes.

The nurse asked me, “Did you tell her it was alright to go yet?”

“Yes,  of course, ” 

A total and outright fabrication, in other words, a big fat lie.

The work, the tasks of being a doula of death are the simple things, the easy things. Wash the sheets, brush her hair, cook, clean,  wash, tend, wipe, cry, hand hold, watch and witness.  The physical things busy me and truly free my mind.  I go anywhere, anytime else, I am walking the beach, hiking Patagonia Lake  finding petroglyphs, spying dolphins swim,  and deep in conversation with Emily and Jane.  My imagination and I are free when it is mere physical work.

My heart  seems to pound louder as  the nurse turns to leave, I think of Edgar Allen Poe, his Tell -Tale Heart,  pounding pounding, this one is not under the floor,  this one is trying to escape my chest. My mind rebels wants to invite Edgar to my dinners with Jane and Emily, but no, on second thought he might be too much of a downer.

 “Sometimes they need to know everyone will be ok and then they are ok with leaving.  As long as we are alive we are still able to learn, all the way up to the end of our lives.”

I’m nodding, silent on the outside, heart blasting a beat on the inside. I am tired of lessons.  Crap this is hard, I want real brewed coffee, and a new novel, and my internet friends, that wonderful format of escapism that feigns intimate connections without all the sloppy real life stuff.  I do not want to do this. 

Then that little word pops up, regret. Yes,  damn it I know, I know!  I would regret it if I escaped, ran away,  adios MF,  see ya later alligator, but that doesn’t mean I don’t get to think about it.

This part of being a doula of death, the emotional work is another burden altogether.

Conversations  will have to go beyond my usual care taking speak,

 “There you are, hairs brushed,… that’s better, or  lets straighten that blanket,…  fluff the pillow,… open the window, get a drink of water,… lower the bed,… change the channel,”  – This speak I have down it is a busy intimacy of small words, not really dealing with anything moment to moment filling both her needs and the day. 

I walk back into the family room, Griffy is outside watering his onion plants, I sit down and take her hand.  

There is no way I could do this with an audience, just quit stalling and open your mouth chicken shit…

“Hilda,  I know you have been watching from wherever you go,”…. No response.

“This internship I have been doing, caring for Griff…. you know we will take care of him right? I mean you know that?”

Still nothing. I sit and think a second should I really say the words? Regret is rising quickly, I just blurt it out.

“Hilda… Jackie is coming tomorrow, Gary and the girls are coming on Friday, but  it is ok to go now,  you are the boss, and I am here, between the both of us we have this covered.”

I got no verbal response, no fluttering of eyes, no little finger or  hand squeezes,  this is not the movies. 

I hold her hand, rub her arm, … back to doing the easy part of being doula of death.

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Filed under Bone Cancer, Death, Elder Care, Family, Griff, Hilda, Hospice, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing

I Will Try

He bends toward Hilda and gives her a hug, one of those I don’t really hug I’m not a hugger person type of hugs; bodies don’t touch, the arms don’t really reach all the way around they stop at the upper back,  atop the shoulders, and the hands take the full contact with their repetitive patting .

 “How are you feeling? ” always the first question, he then sits next to the bed.

 “I am doing ok, … thanks” or the painful answer,  “better, I want to go to Texas”.

I don’t look, I can’t look. I have no poker face.

I know she isn’t ever going to make it to Texas. I can’t get her to the toilet anymore,  never mind getting into clothing, getting out of bed, getting into the car, getting into the airport, and then there is the actual trip,  getting on a plane, getting  through security. I can’t even get my underwire bra through security without a full body cavity search.

“What can I do for you today?”  always the second question.

She would shrug.

The stethoscope is retrieved from his bag, he listens to her heart,  then her breathing, says, “Everything sounds great.”

Thats how it’s supposed to go.

Today he rounds the corner and sees me feeding Hilda her porridge, one small spoon full at a time. He watches, I turn and see him, pausing with the spoon, “What happens if you let her do it?” he queries. 

I flush with anger, remain silent, bad girl desperately wants to scream,… what do you think happens you pompous asshole, she misses and doesn’t eat you stupid motherfucker do you think I am doing this for my health….

I don’t reply, instead I place the spoon in her hand.

Hilda puts the spoon down into the bowl and picks up the hairbrush that was on the bed and starts to put it in her mouth. I stop her.

Hospice Nurse says, ” No…. let her do it lets see what happens…”

This isn’t rocket science she’s going to put the nasty ass brush in her mouth you idiot…

The hair brush is placed in her mouth, her lips and mouth are like a childs, playing at tea party, no real food, going through the motions.

“Hows that taste?” he asks her.

The half closed eyes roll, she says, “It’s delicious…”

I could have fed her cardboard at this point I realize.

I take the brush off her, start to feed her again, tea party play time is over asshole.

The driveway, outside on the driveway is where the real communication takes place.

I start.

“She isn’t …here in the room with us, not all the time, and sometimes not at all.”

“It’s probably chemo brian.” he says.  “Orient her to time and place when you see that happening.”

Ok let me get this straight, instead of  letting her picnic in 1965 I am supposed to say something like,  “Hilda its  February 2010, you are in your trailer  in Florida, in a hospital bed, in your family room, dying of cancer…”

I don’t think so.

I do not feel he is hearing me, I continue like a pit pull.

“She never had chemo, and she is just different…. something is changed.” 

“I don’t think she is in decline.” he answers.

It is then the barrage of questions start to spill out of my head,  pour through my mouth and onto the driveway.

“What do I do if she stops breathing,… what about the paramedics?  what do I do about the DNR papers?  what if I am not here when it happens because I am at the grocery store?”

Words  I do not let escape… what do I do if I am the only one here….I don’t know what I am doing….I can’t do this.

“The paramedics don’t just randomly coming knocking on doors, asking if there is a coding woman inside…someone would have to call them. Do you understand what I am saying?”

Oh…crap. 

I  can and will wash and cook and clean,  I will tend and wipe and apply creams, watch for bedsores, dispence medicines, but….. that…… that is …that is standing by, and not doing anything…. 

He continues, ” if the paramedics are called and don’t see the DNR papers,  they will perform CPR, her ribs will break, she will be intubated, she will not regain consciousness.  She didn’t want that, that’s why she signed the DNR papers. Post them on the refrigerator. I don’t think we are there yet, her vitals, her lungs and heart sounds are all good, call me if you need anything, and remember you have our phone number where anytime day or night there is someone ready to help, all you have to do is call.”

The DNR papers are taped to the refrigerator now. The bright yellow paper is so loud, and the pages stare at me every time I walk by, every time I cook, every time I wash dishes, every time I open and close the refrigerator.

I can not escape them. They scream at me, Do Not Resuscitate!

I don’t know if I can do this.

I bring her some water, her pills, and find her crying, eyes closed, gone away but tears are falling. She has only cried on other time, late at night a few weeks earlier.

That night she cried and said, “I don’t know what I am supposed to do!”

Griff and I each stayed awake, held a hand each, and slept next to her on matching recliners, one either side of her,  bookends to her sorrow.

“Hilda?” she just cries. I do not know if she can hear me. I do the only thing I know to do. I climb into her bed, lay next to her, place my head on her shoulder, and cry.  

 I whisper, “I don’t know what I am supposed to do either Hilda, none of us do….”

After a few moments she sleeps.

I whisper to her, “I don’t know if I can, but I will try….I will try…..”

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Tourist

“Hand me the lottery tickets please,”  Hilda asks one morning.

Hilda has her pre-written, pre-selected, and precious lotto numbers,  complete with matching plastic lottery sleeve. She plays  THE Florida Lotto, Florida Powerball, Mega Money, Fantasy Five, Play 4 and Cash 3 games,  but no scratch offs, thankyou.

The numbers and sheets,  which remind me of  a standardize test  mustn’t fill-in outside the bubble  or your test will not be graded answer sheets,  had their own special place of importance next to the Capodimonte Anniversary Clock. They are retrieved and handed over.  

In the 15 seconds or so between her asking and retrieving, Hilda had perched her glasses upon her  nose and  seemed to fall asleep. I sit back down and pick up my knitting. I don’t start,  I can’t take my eyes off her. She isn’t asleep, she is mumbling, talking and gesturing . I sit and watch as her arms jerk out,  straight out in front of her, hands spread open, shoulders shaking and eyes wide,  I think of newborns startled awake by a loud noise. 

She looks at me and smiles, it’s all in slow motion,  I give her the sheets for her lottery numbers. I sit down in the chair next to the bed and knit, every few stitches I look up and she is placing the sheets in rows upon her bed, like a solitaire game. I watch her for the next few minutes, picking up and placing down the same sheet, over and over again. 

“Hilda do you want to just tell me the numbers and I will write them down for you?”

“No…no thankyou.”

Two and a half  HOURS later I am knitting in a frenzy, my bamboo needles smoking and although I have three more feet of prayer shawl knit, my nerves are completely frayed.

She hands me the sheets and says, “This it is, here is the seven dollars for the tickets.”

711 the land of cherry slurpies my destination and car keys in hand, directions given,  which do not include any left hand turns, as they are too dangerous, and always include driving through parking lots as they are “short cuts” , I leave to retrieve said tickets.

I blanched when the gum snapping cashier says, “That will be 42 dollars,… please.”

Feeling a little daring  I use  both left turns and  actual roads on the way home.

I give her the tickets, and the plastic lotto protect the ticket sleeves, she smiles, and starts playing her bed solitaire again, stacking and reading, and piling. She then turns to me and says,

“Here they are, it will be 7 dollars.”

I was used to the journeys after dark, used to her going away and coming back like some sort of mental traveling tourist.  I imagine her going to certain times and places, visiting her life like one who opens up a book to  reread favorite passages. The hospice nurse says this is a sorting out of their life, he suggests giving her things to do with her hands, like folding dish towels. She has been a tourist before, but only after dark, and she always came all the way back.

The night tourist excursions came complete with conversations with people seen only  by her,  laughter and open eyes. Fingers pilling the edges, touching, feeling, rubbing small  circles into fabric, soothing, like all my now long grown babies did with their blankets, her fingers too must find comfort in the folds of fabric.

One night she asks for a tartan blanket that covers the back of her chair,  Griff hands it to her, she asks,

“Do you have any pins?”

“No”

She starts folding the fabric, and ties the ends together in a fringed knot. She motions for him to come closer, he bends to the bed, and Hilda slips the tartan over his shoulders and says,

“There… just like Braveheart.”

Griff asks, “Do you want me to get into bed with you?”

Hilda shakes her head, busy with something unseen on the bed next to her, her hands move bunching up the sheet, and she says,  “There I’ve made a nest for you, jump in!”

Now, these trips were happening with eyes open and during the day. 

I retrieve dish towels, and with my back to her, I do not want her to see,  I unfold them, put them in a big tumbled pile, and ask,

“Hilda would you help me fold these?”

I want her to say,  “You just unfolded them!”

She doesn’t.

She takes the towels ands starts to fold them, and she doesn’t stop until they are all done.

I note the water mark.  I pick up my knitting,  the shawl almost done now.

This is  the day, the day where she started pulling away, the day Hilda took up permanent residence  in the somewhere else.

She was no longer a tourist there, she is a tourist here instead.

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Bad Words

” You can’t be Captain Kirk,” my neighbor,  Rodney  age 11 and two years my senior shouted down at me from our fort in my tree.  ” You are a girl, … you can be Lieutenant Uhura, she’s a girl.”

The unfairness of the situation caused a very strange reaction in my child self. 

After spending most of the morning nailing nails, screwing screws, hauling scraps of plywood up into said tree,  to create this version of The U.S.S. Enterprise, doing most of the work because I had possession of the only hammer,  this boy was telling me what I could or couldn’t do because I was a girl?  Totally unfair.

 I started to climb, climb high up into my tree,  and I didn’t take my eyes off him as I climbed up, up until at last I was towering above him. I stood up on a branch that gave beneath my weight, and grabbing the branch above gave a show of power that any gorilla would be proud of,  complete with a forceful scream of anguish rarely heard in our quiet Phoenix neighborhood in 1971. Then I glared down at him. It was time.

It was time for the words.

The bad words. When I heard the bad words for the first  time, it was out of my father’s mouth, screaming it at the building site. Even more powerful than hearing it,  was my first- word- reading- self seeing it written across a freshly sheet-rocked wall that didn’t meet my Scottish Builder Fathers Standards…

” What the Fuck is this ?” written across the wall in red construction crayon complete with arrows marking the offensive part of said freshly sheet-rocked wall. It was Big, and Bad, and Powerful.

I needed power, it was time.

” What the fuck is this! I am CAPTAIN KIRK!” I screamed down at Rodney.

Rodney then promptly fell out of the tree,  rolled across the grass, where I still glared above him and screamed, 

” And its my fucking tree!” Rodney scrambled onto his feet, and ran all the way home.

Rodney had hit upon my own personal version of an Achilles Heel.

I had spent years being introduced to my parents friends in exactly the following manner, for every visitor, every party, every time,  much like the Von Trapps of Sound of Music Fame…

My  father starts, usually with hands upon the shoulder of whom ever he was introducing, 

” First we had a girl, Elaine, …… so we waited a while,”

….  My eldest sister and a gifted dancer and choreographer.  But alas a girl.

” we tried again, and had…. another girl, Sharon,”

This would be me,  tree climbing always has skinned knees but alas yet another girl.

‘SO we tried again, and had….. another girl, Dawn,” always a laugh at this one. Ha Ha Ha.

A nurse, brilliant, wondrous caretaker,  small petite and ultra quiet and total fem fatal, but alas yes poor thing another girl. 

“So we tried one more time and, had our son Bill!  “,

Always drew applause, like dad single-handedly controled his chromosomes and swimmers, how heroic.

” The we tried one more time,……… had another girl, Michele, …..so we stopped!” 

Valiant Michele, hard-working, creative brilliant and loyal, but too bad,  she is a girl. 

Ha Ha Ha. Total crack up father, thanks for making us feel a little less than.

While the f-word is still bad, my mother-law along with most of polite society blanche when it is uttered, it is unfortunately my favorite, we go back along way together, almost 40 years. 

I feel for Hilda  having a foul mouth daughter-in-law who uses her favorite word as an adjective, noun and verb. But since arriving here I have other words, other bad words. “Worser” words we used to say as kids, and these,  my new bad words strike fear in my heart every waking moment of  every day.

The  Bad Words, are words so powerful they are not even spoken.  Nor are they  whispered for fear of breathing them into being, they are …. broken bones

My day is spent in fear of broken bones.

If,

If  Hilda would fall,

If Hilda would fall her cancer riddled bones would break,

If Hilda would fall, her cancer riddled bones would break, and she would be taken to the  never never land of a hospital,  never to return.

This a fate that  is even worse than death,  even worse than death itself for the dying, because it means having no power, no control over the where and when and how,  of your death.

It  is a fear that we do not speak of. Until we did.

I hear them at 3am. They wake me as Griff cannot even hold himself upright without getting dizzy,  is trying to extricate Hilda from the hospital bed in the family room, by himself. They do not know how to use the electric controls, they are bickering, loudly.  Hilda out weighs him by about 40 pounds, unsteady bedridden and now in need of a toilet, hurts when touched, is directing him not to touch her, ” Careful Griff!” she squeals.

I bounce from a dead sleep and find them mid break-out.

” What do you think you are doing?” I yell.

Yes,  I yelled, for you see the broken bones words are there at the back of my throat, trying to claw their way out, trying to be spoken into being.

” I have to go to the bathroom,” Hilda meekly answers.

” We didn’t want to wake you, ” Griff  murmurs.

” Why didn’t you ring the bell? Where is the walker? ” I accuse. They have broken THE Cardinal sin. Without the walker Hilda’s legs might break like tooth picks, the bad words,  broken bones,  are so close.

” I told you guys to wake me up, you are not strong enough” I’m calm now just worried, I feel  the bad words in my mouth  they will not be stopped.

” What would you do if you fell, and broke a bone?”

Its done, the bad words escaped.

They both hang their heads, they know, need no more chastising.

I lower the bed, raise the back, help Hilda swing her legs to the side of the bed. I get the walker, maneuver it into place, and one-two-three feet flat on the floor arms ready… She is up.

It doesn’t happen until we return from the bathroom. She stands, I move the walker away and in that moment, Hilda throws her arms around Griff’s neck, and he goes off-balance. I turn to see them falling.

Its my fault I let it loose, I uttered the bad words, I caused it to happen.

Fortunately they fall the 18 inches straight backward onto the bed together, unfortunately  he is under her.

He squirms free, staggers to the couch where he has set up base camp.  Hilda gets liquid morphine for break through pain, and after 20 minutes sleeps.

The next morning  I hear her wake before the sun. Upon entering the family room she says to me with a smirk,

” Are you done yelling at me now?”

I don’t answer, there is a  new bad word that has taken roost in my mouth.

Adult diaper.

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Filed under Bone Cancer, Elder Care, Family, Griff, Hilda, Hospice, Life, Multiple System Atrophy, My Husband's Parents, Sandwich generation, Shy Drager Syndrome, Story Telling, True Life, Writing