Category: Aging Parents

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The Ghosts of Christmas Past

Next week is Christmas.  As the mother of two youngsters, it is supposed to be a joyous, happy time of year.  More realistically, it is supposed to be merely a busy, stressed out time of year.  But, for me, I keep thinking about the last Christmas shared with my father. Cue the tears.  

Technically speaking, I opted out of my Dad’s last Christmas.  It was too painful and I couldn’t bring myself to see him.  I didn’t think I could be there for my boys in the way they deserved if I spent time with my Dad that day.  

Ouch.  It hurts to even type those words.

We would learn a few months after the holidays that the lung cancer that just a few weeks before, he was told, had been successfully treated, well, wasn’t.  Instead his changed mental status, violent, angry outbursts, surly mood, his disheveled appearance, his bitter, angry rants at his children, his insomnia, his paranoia, and his aggressiveness with doctors and nurses were symptoms of his cancer having an epic neurological impact.

It wasn’t dementia or psychosis that we were seeing, though that is what the doctors were treating.  It was a rare side effect of his cancer known as paraneoplastic neurologic syndrome.  Long story short, because of the cancer in his lungs, my father’s immune system went into overdrive, attacking what it considered to be an invader.  It started manufacturing antibodies that leaked into his nervous system, greatly and disturbingly wrecking the last few months of my father’s life.  Sadly, none of this was understood in real time.

Yellow socks indicate a fall risk. I spent a lot of time monitoring the color and circumference of my Dad's often swollen feet and lower legs. This day was a good day.

Instead, my father was bounced between hospital floors for almost two months.  He started on a medical unit, but when he tried to choke a doctor making rounds, he was bounced to the psychiatric unit.  When that setting didn’t work out so well either, he was bounced back to a general med floor where, a CNA told me on the sly, the attending doctor tried to convince my Dad he would have more freedom and independence if he moved to a nursing home for rehab.  No one wanted to claim him.

As someone who has spent over a decade working in healthcare with older adults, I was shocked and at an utter loss.  Our medical systems, even at a place in a major urban setting with a great reputation, had no capacity to treat what ailed my Dad. And, as it turns out, I had less capacity than I thought so, too. 

Worse, save for one neurologist who cleared him for hospice, every single medical professional assigned to him at three separate hospitals had zero curiosity about what was happening with my Dad.  Responses ranged from, “Well, you know he is old.  Dementia is common at this stage of life,” to the repeated suggestion that he was suffering from alcohol abuse that he hid from his children.  My father was a teetotaler that didn’t even like his children to enjoy a glass of wine at a special dinner.  It wasn’t dementia or substance abuse or psychosis, but the docs didn’t know that because they didn’t bother to take a thorough history or connect the dots.   

In between telling me I was a rotten child who betrayed him terribly, my Dad begged and pleaded with me that last Christmas Eve to exercise my power as his health care proxy to have him discharged to family’s care so he could spend Christmas Day with us instead of with the strangers in the in-patient psychiatric unit.  

It wasn’t possible, of course.  My Dad overestimated my powers as his POA.  Sadly, he may have also overestimated my powers as his daughter, too.  The truth is, I couldn’t do it.  After a couple weeks of daily hospital visits, I established a hard line around Christmas.  I opted not to taint that day with the curses and accusations and anger and bitterness of this man I loved dearly who was suddenly and excruciatingly not himself.

The holidays can be hard in the best of times.  Holidays with aging parents can be tricky and unpredictable.  Holidays with hospitalized parents can be downright unbearable.  I think, for the rest of my days, I will be haunted by my Dad’s last Christmas.  The guilt and helplessness I felt is a burden I still carry.  The season evokes those cruel days like a flexing memory muscle.  

May this holiday season find you and the older parents you love in a place of peace and comfort.  May you not be haunted by any Christmases past, present, or future.  And, if, like myself, you are, may you find the strength to cope with your ghosts of Christmas past to enjoy the beauty and love of the day.  

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My Relationship to Motherhood

I told this story of my relationship to motherhood at last weekend’s Mother’s Day edition of Story Sessions at City Winery, Chicago.  

You know those little girls who play with baby dolls and start prepping for motherhood from the time they are still in diapers themselves?  Yeah, that was not me.  At 34, married three years, I was literally bargaining with my husband in six month increments: “Six more months, sweetie.  I promise.  We can talk about making babies in six months.”

I was never really interested in mothering.  Or kids.  Or mothering kids.  No thank you.  Full disclosure, I had a great life and when the reality of having children started to become more tangible, it freaked me the freak out.  I worried I was not capable of taking care of another human that depended on me for everything.

And I was really not interested in the labor of motherhood.  The cooking, the cleaning, the wiping, the folding, the putting away-ing.  Ugh.  Nope.  I was a feminist.  Evolved.  Hell, Betty Friedan spoke at my college graduation.  I had plans, people.

Then one day I got a call at the office.  Was I Sheila?  Was Donna my mother?  Yes, and yes.  My Mom was sitting in an emergency room in Biloxi, Mississippi, alone.  My Dad was on his way, but they wanted her to hear a familiar voice until he got there.  They believed she had experienced a stroke, she wasn’t herself, they were going to hand the phone to her.

“Mom?  Mom?  It’s Sheila.  Dad is on his way.   I’m right here.”  The single word my Mom spoke, on loop, was taunting in its inaccuracy.  “Okay.  Oookkaaaaayyyyy.  Ookkaayy.”  Except, she wasn’t okay.  She would never be okay again.  It wasn’t a stroke she had, but a brain tumor that had started bleeding inside her head while she played a slot machine, cigarette to her left, Pepsi to her right.  (mimic pulling a slot) Ca-ching.

My Mom had right sided paralysis the last year of her life and required total care – bathing, eating, dressing, toileting.  The whole shebang.  I got real responsible, real quick.

And welcome to one of the great revelations of my life:  I was, in fact, capable of caring for another human being.  And by caring, I don’t mean in a purely emotional way, but in a mom kind of way – in that sticky, messy, repetitive, smelly, nagging, occasionally oppressive, frosting on a cupcake kind of way.  There is a gift in knowing that it was my dying Mom who taught me that lesson.

Motherhood no longer seemed so daunting to me.  A couple of months later, I was pregnant.

In the early hours of my labor with Donna. We went to the local mall as it was cool. I kept making Mary Tyler Dad take these photos of me with prophetic messages at Kohl's. Sort of breaks my heart when I look at them now, but that's motherhood for you.
Me, in early labor with Donna, expecting great things.

Our first child was a girl.  Our beautiful Donna, named for my mom who had died a few months earlier.  She was perfect.  So sweet.  So easy.  So considerate of her older, rookie parents.  Motherhood was a dream, potent and primitive in those early days.  I felt so damn happy, I barely recognized myself.  Folding her little onesies regularly made me weep.  Mashing sweet potatoes and peas into ice cube trays so Donna would have lunch at her sitter’s the next day gave me this ridiculous sense of pride.

Then, at 20 months old, my little girl, my baby, was diagnosed with her own brain tumor.  Like grandmother, like granddaughter.  Word to the wise, if your name is Donna and I love you, get yourself an MRI, stat.

Overnight, I became a Cancer Mom, which is like mothering on steroids.  A couple of years after that, I became a Grieving Mom, which really and truly, is light years away from being just a mom.

After Donna died, caring for my infant son, born in the midst of our girl’s third relapse, was what kept me anchored.  The responsibility of doing for him what I had done for my mom and daughter gave me a purpose and function that I needed desperately in those early days of grief.

I taught myself how to cook in those months.  Growing up on a steady diet of meat, potatoes, canned vegetables, and Kraft Dinner ensured I had a lot to learn.  Honestly, the cooking was a distraction from my sorrow.  Recipes made sense and were orderly.  In the kitchen, I could control the outcome.

I never bargained for any of it.  The things I imagined would be difficult about motherhood were the things I pined for, the things that kept me sane, the things that were easy.  Mundane labor was my lifeline.  I fought the idea of motherhood, never realizing what a blessing it was, how fleeting it was, underestimating its power and my capacity.

Fast forward a few more years, and I became an Adoptive Mom.  Another in my growing list of qualifiers to motherhood.  My husband and I, probably too old and too sad to make more babies the traditional way, chose to grow our little broken family through adoption.

We thought of it as a kind of sacred pact.  We agreed, with the total sincerity and earnestness that Lake Shore Liberals are lousy with, to raise another woman’s child as our own.  I think, because of our grief, we believed we could more easily empathize with the loss a Birth Mother would feel.

My naivete astounds.

It turns out that no matter how well acquainted you are with grief and loss, when you grapple with the reality that another mother gave her child to you, well hells bells.  That right there will mess with you.

As I cared for my youngest, knowing full well it would be my last time at the baby rodeo, the simple tasks of motherhood that had previously brought me joy or solace, instead woke the beast of my Catholic guilt.  With every diaper change, every bottle, every bath in the kitchen sink, my immense gratitude that I got to care for this little bundle was tempered with the reality that another mother did not.

Another mother, because of some pretty sucky life circumstances, couldn’t change that diaper, couldn’t warm that bottle, couldn’t rinse the soap off the chubbiest baby bum I had ever seen.

In retrospect, sometimes I think about my pre-baby days and wonder if I had an unconscious inkling of what lay ahead and just kept putting motherhood off, unable, in some cosmic way, to deal with the enormity of what was to be for me.

So, um, yeah, Happy Mother’s Day, folks!  For me, this day is an endurance event.  24 hours chock full of feeling all the feelings.  My annual ode to perseverance.  So, lift your glasses with me, let us toast to motherhood, with all its qualifiers, all its joys, all its sorrows, all its losses, all its bounties, and all its labors.  Here’s to the mothers.  I salute you.

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Bridges and Threads and Sundaes: Connecting Our Kids to Those Who Would Love Them, But Are Dead

My Mom died when I was pregnant with my first child, a daughter who was named for her.  Four years later my daughter died.  And five years after that my Dad died.  Three of the most important and loved people in the world to me will never be known by my two sons.  That just plain sucks.

As a child myself, I was born with three grandparents, as my Dad’s father had died when he was just 18.  I knew my paternal grandfather’s name, but not much else.  He was never real to me in the same way as my three living grandparents.  My Irish grandmother died when I was just seven.  I was named for her, Sheila being the Gaelic form of Celia.  I remember a bit about her, but not much.

Oddly, I remember snapshots from my grandmother’s funeral that are still potent.  I wore a red calico print skirt with matching shawl to her graveside service.  I loved that outfit, as it made me feel like Half Pint from Little House on the Prairie.  A cricket landed on my sleeve and I wanted so badly to scream and shout and jump up and down to get it off of me, but I didn’t.  At seven, I was old enough to appreciate the solemnity of the situation, so my cricket freak out was silent.  I remember seeing my Dad cry in the front seat of the car as we drove away from the funeral home, telling my Mom he was an orphan now.  He was 44.

My other grandparents died when I was in my early 20s.  My memories of them are fond and much more well grounded.  I can easily recall details about their East Side bungalow, the smell of their basement, the tile in their bathroom, the grape arbor and vegetable garden in the backyard, the drips from the small window air conditioning unit that would fall on my head as I played in their gangway with my cousins.

They were kind and loving and generous and my life is a better one for having known them.

My sons will grow up knowing and loving two of their four grandparents (*my youngest, who is adopted, will have a more complicated relationship to all of this, I know, as he has biological grandparents, too).  Given that my oldest boy was six when my Dad died, I am aware that his memories will be there, but tenuous.  My husband’s parents are super grandparents — loving, generous, supportive, interested, but, alas, from a distance, as half the country separates us.  I wish my boys were able to have a more day-to-day kind of relationship with them, but feel grateful they are as present and involved as they are.

The question for me, then, becomes one of how to make my Mom and Dad (and daughter/sister) real to them in a meaningful way. How do you make the dead come alive?  How do you create a sense of relationship to someone they never met, or only knew as an infant or young child?  Is this even possible?

grandparents

I’ve been thinking about this a lot, as my brother and sisters and I got together last week and pored through boxes and boxes of family photos, scanning and separating until we couldn’t see straight.  I felt a deep relationship and connection to my Mom and Dad during this process — one that feels deeper after seeing both their lives, from childhood through death, be sorted and scanned in such a concentrated period of time.  81 and 70 years condensed into 48 hours.  Would these photos matter to my boys? Will I hang on to them, clinging to my connection, only to have my sons discard them after my own death?

Ugh.  And sigh.  And sniffle.  And ugh.

I felt a bit of hope while scrolling through Facebook the other day when I saw a friend post a photo of he and his daughter enjoying ice cream in honor of his Dad, gone many years before his granddaughter was born.  The ice cream sundae was a tradition, a connection to a father and grandfather gone too soon.  There was joy in the photo, potent joy, that transcended hot fudge and cherries.

Seeing the photo helped me realize the power of storytelling.  Stories are how my boys will come to know their sister and grandparents as people that would have loved them silly, given a chance.  An ice cream sundae can magically transform into a bridge when its story is told.  An ice cream sundae can be the invisible thread that connects father and son and granddaughter.  It is possible.

Grief can lead to helplessness and isolation, a shutting down and a retreat.  But at its core, grief is evidence of love, an intangible residue of the relationships that were, the people that existed once, but are no longer.  When those people we grieve are people that would have loved and enriched our children’s lives, the onus is on us to find that bridge and thread that can connect them.

My boys are young — 8 and 3.  I still have the opportunity to tell the stories, hang the pictures, buy the sundaes and do my best to flesh out the grandparents and sister that are not part of our day-to-day, but who would have made their lives immeasurably better. Anything I do will be a poor substitute for living grandparents and sister, but it is so much better than nothing.