Monthly Archives: March 2010

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.


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?”


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


“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?”


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.


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

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, … 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  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

The Borderlands

The shoreline on the map is clearly marked, a solid line marks the edge of where land and sea meet.

It doesn’t change to mark the tide. It doesn’t mark the exact edge of the sandy soil that meets the sea at different times, different places in each of the different seasons.   

Some days the sea will rise,  lifted by wind and tide to the grassy shore high above the rocks and sand.

Other days the sand is left dry and folds of wet sand, rippled ridges of new land reach far out into the bay.

It is always changing, and if one watches, the changes can be clearly marked. 

The blue book is our map.  A light dusty blue cover, unassuming,  small, like its been printed in the  office of a church.  It’s  14 simple white pages, in comforting  candara, soft black ink, it has become our guide to the borderlands.

I read the book first, and one afternoon give it to Griff. He reads it through, then takes the always present white hankie from his front pants pocket and wipes his eyes,

 ” She doesn’t have long then does she? ” he states, really not asking.

I do not answer, neither of us can or need to talk. 

Like the changes in the tides and shoreline of the bay, each day brings marked changes for Hilda.  We have been told that each journey different, as different as we are individuals.    We are given signs, markers for her journey, things to watch for, things to recognize, things to welcome; disorientation, talking with unseen family or friends, confusion and changes in body temperature, no appetite, increased sleeping, irregular breathing, and restlessness. 

Written this way they are simple signs.

When they start to appear it is not simple.

“Tomorrow I’ll be more organized”, she whispers to someone I can not see.  

” We will have a  jam buttie and a  lollie ice, lollie ice and a  jam buttie.”

She must be picnicking at the beach, I hope the weather is good where ever she is. She continues on with eyes closed.

“Do you have the spade and bucket?”

” Where are the children?” 

“Are you going to the dance alone?” She whispers in the middle of a conversation.

 Griff now moves close, and holding her hand answers her,

“I’m only going to the dance with you, do you have a new dress?”

“The children are asleep.”

“Yes, I have the spade and bucket.”

 He sits and rubs her hands, her arms, strokes her hair back from her face. Sometimes her eyes are closed, sometimes open, sometimes in between. I feel like an intruder on a private moment between them,  I move into the kitchen and give them some space.

 They have been married 54 years, and its hard to watch this long good-bye.

Today he has slipped into first position as caretaker, sips of water,

“Are you hot love? Are you cold?”

 She hasn’t been with us most of the day, eyes half way open, half way closed, she is halfway here. Where she goes we can only watch, we can not follow.

 The weather channel plays most of the day, and they have a weather station which looks like a digital clock sitting on the bedside table. She reads the numbers off when she wakes, and is semi lucid,

“ the temperature is 66 outside….. its 70 inside… the pressure is dropping…. it’s going to rain.”

 “ The weather is changing all over the world….  the weather is terrible”,

 “The planes will be delayed…  I hope those kids aren’t going to school…  Griff put a sweater on…  that snow in D.C. is terrible”

 In spite of the knowledge that these signs are expected,  I begin to give serious thought to banning the weather channel.

The Chaplin arrives, conversation starts, she is here for the moment.

 The Chaplin asks, ” where should I sit?”,

” On your bottom, ” Hilda replies with a smile.

There in the family room the  English Catholic boy, and English Protestant girl, tell their story to the Chaplin. Running away to be married, the eventual acceptance by both families and the big one, the  tragic death of their youngest child John at age 5.

” His heart, he had an enlarged heart,  he died on the table”, its Hilda’s high-pitched voice I hear crack. Over forty years has done nothing to dull the pain of her loss.

 That was the moment I reached the end of my emotional rope. It was not the story, I had heard it many times, it was her voice, the sound of her voice.

 I grab the trash and  leave, walk to the bay,  I escape to the edge of the trailer park where  the sea is liquid mercury ebbing tide and beautiful.  At the end of the road, past the pool and shuffle board courts a long slow grassy bank  falls into Tampa Bay. It’s covered with a short thick grass, and soil that feels like a sponge beneath your feet, it feels as if you would sink if you standstill. It gives way with each step, and at low tide, one can step from the solid ground, to the spongy soil onto a rocky ridge littered with debris, and finally onto sand, wet and ridged from the tide pulling the water out and away.

I stand and look out, it is sparkling, cold and bright, a sharp wind cools my reddened face. 

 Here there is always movement, a coming and going. I realize that the journey Hilda is taking is like the ground I stand upon, ever-changing, evolving, never constant. Each day brings new borderlands, places where I can not follow.

Like the sound of her grief still fresh,  there are places I  dare not  let myself go. Sometimes the maps, the signs mark discoveries that are not just about Hilda, but are sometimes about myself.

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

The Native Fauna

Fresh wet racoon tracks, like tiny long fingered hands,  just visible next to the oyster shells, plastic bottles, fish skeletons,  rocks and cement chunks that is the shore line. Every low tide brings more sandy space but no matter the hour I arrive,  finding prints announce the racoon has already come and gone. The pelicans stand on their ancient perch, willets watch and walk on their bendy straw backward knee legs, tiny sea sparrows dart with abandon, and a woodpecker, red topped, reckless, with his deliciously rock and roll raucous,  serenades all from his vertical band stand on the pine.  

Snow White’s avian friends helped her clean on her adventure, mine help me breathe on my quick escapes  to the trash dumpster at the far edge of the trailer park.  A little  daily detour and deep peaceful breaths, a welcome break in the care taking of others. My other coping mechanism is escaping into my imagination, daydreaming, head in the clouds at a moments notice, maybe need some serious mental health help, day dreaming. 

It is a talent handed down from my father.

” Where shall we go?”,  was the question he asked us as we gathered around him at the dinner table. He would pause looking at each one of us carefully, and then take down the giant green leather-bound atlas from its upper most shelf. None of us would move as he slowly held the book aloft, closed his eyes, and  then in a swift movement  open the atlas at random, laying his finger upon our destination. We would all lean in then, jostling for position, no one wanted to be the one who had to look at the upside down pages.  He would name the foreign land,  tell us about the flora,  fauna climate, and when he  finished reading, we ran off to pack our bags.  Although our bodies never really left the house, our imaginations always took flight.

Mom was not included in the itinerary, her flights of imagination were much loftier. They  included getting all five children in bed before the beginning of  Master Piece Theater.

 My mother used to say, “You are away with the birds…” a statement meant to  softly shame, a so too often serious woman, it was meant as a wake up call. Instead this girl child stayed dreaming ; dreaming dreaming out the window, on the roof,  up a tree,  climbing,  away with the birds dreaming.  I am Captain Kirk, Jacques Cousteau, David Attenborough, and Errol Flynn. Adventure my calling, Bilbo and Smaug, Lessa of Pern, Frodo, Aragorn, and Gandolf  the Grey my constant companions.  I still seek entrance to  their world, even now. 

I turn away from the pelicans, willets,  sparrows, and wood pecker, start walking back, and make a mental note in my field guide that other native fauna are out as well. The sound of heavy machinery in the park has drawn them out, it is their call, the call of retired men everywhere, someone is working, we must watch.

A tree trimming truck, complete with instant grind anything into a fine mulch shredder machine  has arrived. Palm trees need trimming.  The grey heads fully covered with team logos, fishing lures, military emblems, and various straw are standing in groups of two or three, arms crossed anticipating the next branch to be destroyed.  Approval and stories of their own tree trimming escapades are exchanged within the group. There are no women.

Like a  naturally occurring gender divide on a first grade playground, its boys for boys, and girls for girls here. The men sit together in the cars, usually in the front, woman together,  in the back.  Walking if done for its own sake is mostly for woman, two by two and never silently. If walking is a means to a mission, then men of course walk, because they are going somewhere and doing something, important work.

 A noticable geriatric gender line is carefully observed here at Sky Harbor Estates.

The gender barrier is breached on certain evenings, when cards are played at the club house for instance,  at the Sunday Evening Ice Cream Social,  7 pm all you can eat!, and when invitations are issued. 

My marches through the park allow me great field study opportunities. 

Friday Nights  bring out the singles, single men invited over for,  ? what ever is on the menu.  Aaron Spelling would have another hit show if he followed the appetites of this crowd.

I smell the Polo before I actually see him. I’m heading down the street, he turning in at the bottom by the bay, Ascot wearing blue blazer Thurston Howell the Third nods as I pass him going the opposite direction. I smirk when he passes;  how adorable, the man has in invite I think, Friday night heading to a date. I stride on, Gaga again blasting. 

 Then  I see him again as I round the next corner, still approaching me, How did he get here so fast my mind wonders…again I smell the Polo and think nothing more of it. 

On the third pass, I turn and find him close behind me.

Ok this is starting to freak me out now. I sprint, ahead,  turn off the iPod, and change directions so if he is still following I will run directly into him.

I finish one pass before I smell him.

 He is right behind me, again

I run like the girl I was from Griffith elementary cutting through backyards, getting the fuck off the road, I cut across side yards dodging orange trees, lattice covered gates, and garden Gnomes. I sprint up the driveway,  into the kitchen door with a slam, and turn off the porch lights.

My tomato face gives me away when I enter the family room, that  and  the fact I can not breathe because  number one, I ran,  like really ran, as in running from something trying to get you run.

Between gasping breaths I tell my tale, Hilda laughs, as does everyone else in the room. By the end of the evening I have talked myself into chalking it up to my very active imagination. But I don’t go out after dark anymore, I had forgotten the cardinal rule of observing native fauna, they are wild creatures in their own natural habitat,  not cute, and nothing to be taken lightly.

I walk in the afternoon light streaming afternoon and on my first walk I turn the final corner, and there crossing the road right in front of me is the racoon. He is moving slowly, kind of a walking shuffle ten feet in front of me. He crosses and enters a drive way on my left, as I pass,  I look in, he is perched atop a trash can and looking at me, I can’t help but laugh, both of us rather nocturnal creatures forced out into the sunshine to escape the predatory native fauna.

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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