May 5, 2019

What My Mother Taught Me About Dying


Last year, as spring slid into summer, my mother slowly slid into what would be the last months of her life. The process started with disengagement. First, she shied from the outings that had always energized her. Then, she grumbled at having to leave the apartment. Finally, she refused to leave the couch, where she slept most of the day tucked in the nest of handmade pillows that she collected over a lifetime of traveling around the world.

The next step was a week-long tsunami of agitation and combativeness. This was even more astonishing because the single gift of Mom's dementia had been to make her sweet and compliant.

In retrospect, I now see that I was actually astonished by the whole last months of her life. ..or were they the first few months of her dying?  Because the first thing I learned from my mother's death in mid-September was that even at age 64, I knew nothing at all about dying.

I was a young teenager when Elisabeth Kubler-Ross challenged our notions of how to treat the dying. Along with the rest of the culture, I assimilated the radical notion of On Death and Dying that we should no longer shunt our dying loved ones to the hospital. The New Directive was to support their dying at home or in a compassionate environment like Hospice, where they could retain their dignity all through their final hours.

And let me add that, in the absence of any direct experience, I just assumed that dying was exactly that: a matter of hours.  Fed by the filtered black and white photos in my copy of On Death and Dying, I developed quite a poetic bank of images of what those final hours would look like. You know what I mean. A hospital bed, its steel softened by a handmade quilt and the family cat, sits by the window, arranged to capture the view of the magnolia tree in pink bloom. A bedside candle flame dances as loved ones hold hands, share memories, and beg--or offer--forgiveness. The whispered "I love you" and then...perhaps a shudder...and then sorrow. With serenity just around the corner.  

My mother's death left me with a profoundly different bank of images.

Yes, there were the angelic aides from Hospice, who alternated between lovingly massaging cream into Mom's eroding skin and checking their cell phones for Facebook updates. Yes, there was a hospital bed but I couldn't add the afghans she had knit because my father keeps the thermostat set to "Human Body, Feverish." 

But there was no candle (see thermostat, above). And there were none of the serene exchanges that resolve all unspoken tensions between mother and daughter.  In fact, there were no exchanges at all. My real mother's default response to emotion was avoidance. I will never know if dying would have changed her mind because her mind was full of Ativan, Haldol, and morphine to control terminal agitation.

Yeah, "terminal agitation." Ever hear of it?  Me neither.

As the name suggests, terminal agitation is an escalating picture of restlessness, agitation, and downright combativeness that may occur in the last weeks of life. Hospice considers it a crisis--and given all they have to deal with, that's saying a lot.

Terminal agitation has bloodied all my fantasies of how we die. Here's a snapshot from the morning I stayed with Mom during a care planning meeting. The last day she ever talked to me.

"We need to go now," she insisted, trying to get off the couch without any success.
"Get me out of here NOW," she commanded. I obliged, trying to figure out a route away from the public spaces of the nursing home.

"Can't you go any faster?" she demanded, as I wheeled her up and down the halls of the third floor. That held her. Until it didn't.

"What's the matter with you, we need lunch."

"Ok, here you go," I said as we returned to the apartment and I slipped a small plate of her favorite foods on to the table.

"What's the matter with you? I said 'lunch'!"

Here is where mothering two toddlers came in handy. "Okay, here's lunch," I said as I put two M & Ms in her mouth. But she wasn't having any and I was shit out of ideas. Luckily for the both of us, the nurse returned and, even luckier, she had a morphine injection in her pocket. I coaxed Mom to the couch, where she relaxed into my arms. She asked me to tell her a story...which I did, with tears in my throat.

My gentle and gentlemanly father could not acknowledge that his wife of 65 years was dying and so could not help but scream at her when she swore at and scratched at the aides. Hospice took her to another apartment to stabilize her (and him). Mercifully for me, they told me I shouldn't come by. By the time I saw her four days later, "stabilized" looked a lot like unconscious.

If I hadn't experienced the agitation myself, I would have suspected they were simply drugging her to make their lives easier. But they weren't. They were drugging her to make her life easier for her. ...to make her death easier for her.

We went to our craft show for the weekend because 1) no one told me I should not and 2) I desperately needed to catch my breath.  Rona the Super Aide stayed with Mom in her deep fog, whispering to her that I would be home on Monday as she cleansed the sweat off her brow (see temperature, above).

I came back Monday morning and held her hand, searching for any sign that she was holding my hand too.

"I'm going home now to change and will be back later," I whispered. "But if  you need to go now, it is ok. I am taking care of Daddy and I will make sure he will be all right."

I was in the car for 15 minutes when Rona called me to tell me she was gone.

It is going on eight months since that phone call. I am starting accept, rather than avoid, my new understanding of the reality of dying.  I am starting to accept what my mother taught me about dying: it is not a moment but a process. It may not be pretty, but it will be real...as real as life.

And I am now starting to catch glimpses of my real mother through the searing images of last year.  They are in the way I am quick to judge anybody and the way I wave my hand to dismiss opinions of others. They are in the way I trim fat off the brisket I cook for Passover and the way I fold used pieces of aluminum foil and tuck them in the drawer.They are in the way I love adventure and the color red.

They are in the way I am washing and folding the sweaters she knit for my babies, readying them for the grandchild I am expecting in July.






Thanks, Mom.









September 3, 2018

An Army of Daughters

Everywhere I look, I see an army massing.

It is the army of daughters, holding on to their aged parents.

To doctors and dentists, to dinners at 5 pm and 10% off days for seniors. Down the halls of nursing homes and up aisles at supermarkets, slowly pushing a cart that holds two apples, one tomato, and a small box of low-sodium Saltine crackers.


The army of daughters is in every corner of the parking lot, snapping walkers and wheelchairs into and out of trunks in two expert maneuvers..the way they mastered strollers so many years ago.  Always scanning for a car door swinging shut too soon, or an SUV backing out of a parking space too fast.

The way they protected their toddlers so many years ago.

The army of daughters is hardly a silent one. In fact, they're always on their phones.  They're pleading with medical receptionists to let them bring Mom this afternoon so that this night too does not end in the emergency room.  They're dialing every number in the zip code to find an after-hours pharmacy that is truly open past 6 pm. They're calling Dad for grocery lists, which will inevitably include all the items they just dropped off the day before.

And they try so very hard to answer the ringing phone calmly, even when their throats constrict as they see the number on the caller ID...

...and they find themselves throwing on jeans and heading out the door.

Again.

At its best, this army is a holy exercise in compassion and a desperate primal desire to prevent the suffering overtaking the minds and bodies of those who taught them Love. At its worst, the army of daughters can't choke back the ugly thought that you don't enlist in this army...

You get drafted.





July 8, 2018

Home Dec

We had a lot of construction around here this winter. Mostly so Himself, now retired and a full time woodworker, could have a studio that 1) facilitates the level of craftsmanship he has attained and 2) does away with the need to climb over large power tools butted up against one another like a herd of sheep at shearing season.  (You can see pictures of the tools now running free over at our website.)

Being the opportunist that I am, I agreed to sign off on the New Studio Bill if I could attach to it House Amendment #2018, stipulating new kitchen cabinets and countertops. We tiled the backsplashes ourselves and managed to stay married. But we deliberately left one stretch undone, so that I could go to it with my broken china, bottles, and other ephemera that I have dug up in the finest trash heaps the United States has to offer.

I am really happy with the result. (And yes, my favorite woodworker made that counter top).
The strange object on the left is called a "land line."
I spent lots of time trolling Pinterest for ideas and latched on to two of them: making it flow along the wall, instead of covering it. And letting it come out of the wall, adding dimension and the whimsy that I so love. That made good use of the intact pieces I have found.
 


While I was rushing to get this done in time for a Memorial day weekend wedding in our backyard, I asked Himself to focus on one of the outside projects. I love the sound of running water. Could he come up with an idea for a fountain that we could hook into the return valve on the pool? 

He did.
 "How will that fit into the wedding that the millenial bride and groom are imagining? I asked.  

"Hmmm. You're right," he said.  

But it didn't him long to come up with a solution.


April 29, 2018

Back to collage

No, its not a typo. Cutting up pages from magazines, adding bits of handmade paper, throwing in the odd bit of ephemera here and there...and gluing it all down without thought into my journal has become the only way I can name emotions too big for me to look right in the eye.  (You can read about my technique, if you call it that, here.)

The other evening, even two glasses of a very nice beaujolais failed to dissolve the massive emotion that was still pushing out from my brain into my eyes. I was desperate. I surrendered to glue stick and my plastic box of clippings.

And 10 minutes later, this appeared.
 The Yiddish alone told me the name of the emotion: I miss my mother. She is here but she is not she any more.

I keep the little Mexican china bowl on her coffee table filled with M & Ms and slip her oatmeal raisin cookies every few minutes. I remind her that I am not just "Mort's daughter," but her daughter, too, and she also had a son. Once. I tell her the weather outside every three minutes.

I love this woman...

But I miss my mother. A lot.

April 19, 2018

The Meaning of Rusty Old Door Latches

The big waves that washed over me last winter washed away my interest in quilting. Instead, they activated my passion for assemblage. I hobbled with Himself through the Metropolitan Museum of Art to see a small exhibit of pieces by Joseph Cornell and came home as full of energy as someone on two crutches can be.

I  dragged out our ghost town and Dead Horse Bay finds...and discovered that we have cornered the market on rusty old door latches. I don't even remember how it happened but they turned themselves into elephants.

A strong and sturdy mama elephant....


 A big ole bull papa elephant...

And of course, a baby elephant.
When I finished with this little guy, I started humming songs from Disney's Dumbo.  Which was when I realized that the family was trying to escape from the circus. I used Jude's technique of cloth weaving on pages from an old dictionary and made a platform out of an old frame. I decorated it with equal parts distress ink and spills from my lunch.  And now, I'm getting them ready to leave the Big Top:
 Old bicycle wheel, mounted courtesy of woodworking husband, and pieces of an old Erector Set are a good start, but there's more to go. I am loving working on this, which is pretty ironic considering my one and only experience with a circus did not go well. ( I was five years old and was completely overwhelmed by the noise and chaos of what was probably a Ringling Brothers three-ring extravaganza. The whole family had to leave once people started flying out of cannons.  Cannons? Shooting people out of cannons???? I started screaming in terror and didn't stop till we got left the tent.)

I also went back to a piece I started in an assemblage weekend workshop in 2015.

I ripped out stuff that no longer spoke to me and, if we're being honest, some of the stuff that was hanging by my thread of shoddy technique. I added other objects, including strips of burlap I ripped off a wall of an old miner's cabin. As the piece changed, it felt like my life in its contained form.  
I found an old date book I must have gotten from a flea market and suddenly, my little life became my midget life...and my piece, My Midget Diary:
It needs coils and springs, but don't we all?

I have another piece waiting in the wings for some fine-tooling. The Mama Elephant above is made from the back of a clock we found at Dead Horse.  A bunch of gears popped off and they made their way to the front of the clock. The whole thing made its way onto a wood scrap donated by my favorite woodworker. And when it grows up, it will be The Tree of Knowledge:
Of course, this assemblage stuff really only works if you have stuff to assemble. Not to mention your own personal woodworker.  And that really goes against my entire being (the stuff, not the woodworker. Generally.)  I am just having too much fun to stop and besides, I'm using it up, right?

It wasn't fun at the beginning. As always, I tripped myself up desperately trying to seek out a story and  impose Meaning. But a trip around your blogs and some wonderful You Tube assemblage creators slowly showed me what an idiot I was. Meaning is discovered, not imposed. In fact, creation itself is the meaning. If you're lucky, and if you create honestly, you will discover Meaning.

If you're not lucky, you still can have a blast sanding, drilling, screwing, and painting...and making a dent in your supply of rusty old door latches.
 



April 15, 2018

Riding the Waves



I took a photo of this sign on a beach in Iceland because I loved how it cut right to the truth without a whole lot of extra verbiage. And now, it pretty much explains where I've been for the past 7 months.

When I was here last, I waxed rhapsodic about the medication I was receiving for my newly- diagnosed dermatitis herpetiformis. It eradicated my skin inflammation in just days. In just weeks, it also eradicated about a third of my red blood cells. Yeah, the ones that carry oxygen. My walks with the dogs dwindled to a pitiful halt and climbing up stairs looked like this:


My falling blood count scared the doctor so badly that he even gave me his personal cell phone number. Maybe so he could walk the dogs? 

We stopped the medication and slowly, my community of red blood cells replenished itself. I had looked at my gluten allergy as a prison of sorts, but quickly shifted my perspective. Avoiding gluten is the simple and magical way to keep that toxic pill out of my life.  It is often a challenge and I find myself pouting in the company of other people, but by and large, it falls into what the Manhattanites in Anna Quinlan's new book (Alternate Sides) call: "First World problems." 

I was back to my self by the first week in November and took the dogs to the field to celebrate. Yes, Molly is sweet and petite at rest...
 

 but never forget the 10th Law of Physics: "A Boxer in Motion Stays in Motion." That day, she zoomed around and around the field...

...and straight into my left knee. Now called the Knee Formerly Known as Good. The xray didn't show any break and I was advised to "take it easy." (Only a male doctor could say this to a woman with a straight face.) I limped around with a cane for three months and then by January, went for an MRI, which showed a tibial stress fracture...and with the general overlay of osteoarthritis, a knee replacement down the line. And quite probably, an end to my point-to-point hiking.

So I began life without weight-bearing for six weeks.  And here's what happened in Week 1:
  •  My boss retired and sold her company, so my job of 10 years was over.
  • Himself also retired so that so he could work full time in his woodworking studio. 
  • The contractor appeared almost without notice to begin the major overhaul of the studio, making it completely off limits to the above-mentioned woodworker.
  • The contractor also tore everything functional out of the kitchen (in my wisdom, I had taken a lesson from Congress and attached to my approval of the studio renovation a plan for renovating the kitchen) 
  • My aging parents each took a turn for the worse, requiring two separate trips to the ER. That would be with him and his walker, her and her dementia, and me on crutches.
 Yes, it is definitely the ultimate in First World problems to whine about being confined together in one room all day for two months, unable to eat much besides peanut butter and jelly sandwiches (or gluten-free versions of same) while fighting for control of the TV remote.  But hey, I am a First World gal. And, honestly,  all my jovial recollections don't really do justice to the psychological impact of those big dangerous waves of  accidents and illness, end of careers, and the relentless march of time over my parents' bodies and minds...and my heart. The name of this big wave is, of course, "reckoning with mortality" and it is a tsunami.

So that's where I've been. And the longer I was there, the harder it became to return here.  But the waters have subsided for now. I'm on my feet after a month of physical therapy. I can walk about a mile today, and feel hopeful about tomorrow. There's nothing on my skin except bits of gluten-free oatmeal and dog drool. The kitchen is lovely and the studio just re-opened. We walk the dogs and take a Tai Chi class together. My parents are getting worse, but at least they now have nurses on call in the middle of the night, instead of me.

So I'm back, in more ways than one. 

With love from the First World,
julie



September 24, 2017

My Personal Lourdes

A combination of my desperation and an opening in the Cosmos got me an appointment with the Gods of Dermatology, downtown in the clinic at Jefferson University School of Medicine.

I am serious about the Cosmic Opening. After getting an appointment in August for sometime in the end of September with an Unnamed Source in the clinic, I felt a strong tug on Monday, August 27 and went to the phone. I dialed the clinic to see if there were any cancellations and for no really good reason, the Office Administrator happened to answer the phone. I replayed my monologue about scratching myself into small julienne strips.

He listened and said, "Well, lucky for you, I am the only person who can override the computer." And he put me in on top of another patient (no, not literally) for two days later.  Downtown Philadelphia  is an hour train ride away and, because of the train schedule, I got there 30 minutes early, thereby beating out poor unsuspecting Patient Number One. They took me back into what turned out to be my personal Lourdes.

After the usual monkeying around with the well-meaning resident and medical student,  both of whom were young and uber-fit, in walked the most Zen physician I have ever met. In his 60s, Asian, kind eyes and portly-ish frame. He silently inspected all the julienne strips and calmly sat down.

In the most kind and sage way, he then walked the resident into a Socratic inquiry. (Remember, this is a teaching institution. Patients are Lab Rats with Insurance.)

"The key finding is that the rash is symmetrical. What does that suggest?"

I didn't even realize that, and I've been scratching at myself for four months.

She offered a possible diagnosis. He countered: "But why would that be symmetrical?"

She demurred. It went on for a few rounds. .

Being a former medical writer, I jumped in. "How about bed bugs?"

"Why would that cause symmetrical bites?" 

"Umm...well, because mine are very well organized?"

Me and the resident surrendered and Dr. Zen said two words: dermatitis herpetiformis.

I only heard "something-something HERPES." But that was just a red herring. He explained that this disorder is a skin manifestation of (cue trumpets): gluten intolerance.

That floored me even more than herpes.

He gave me an overview, tossed off some orders to the resident, and walked out of the room.

"Wow," I said to her. "Can you tell me what causes this?"

Her reply told me that she will go on to be a very, very good doctor. "I don't know! I have never seen this before. I have to read up on it."

When I got home, I looked up everything I could about DH (as we pro's call it).  I also looked up everything about Dr. Zen. That chance phone call in August not only got me into the Clinic faster, it put me in the hands of a full Professor of Dermatology and Vice-Chairman of the Department. He has been practicing for 45 years and "no longer accepts new patients."

Except for me, for this singular opening in the Cosmos.

So I am now on medication and off bagels. And, of course, being 2017, there's an app to help me out. It scans the bar code on anything prepared and rings with a "go" or 'no go" response.

It took me a few weeks to get my head around this diagnosis. But here's where I am now. No longer itchy, sleeping through the night. And fully aware that of all the systemic diseases that creep into  people my age, this is nothing.