Archives: Aging, Disability, Death, Dying

The Alzheimer’s Association blog posted a recent report on LGBT caregiving challenges.  Reading the stories is a good reminder to young Americans that although being openly LGBT is becoming relatively easier for younger Americans, for older Americans the likelihood that high levels of discrimination have been experienced in their lifetimes and that many must live a lie in nursing home communities is quite common.  More work needs to be done to increase tolerance and dignity for all ages of individuals.

As I drove to the airport last week for a quick flight to Texas I wondered, ‘Am I the only person in the world who tells herself: I am not going to cry in the airport today?’  I purposely took no overtly emotional reading material with me—I learned that lesson through Same Different As Me, The Last Lecture, and The Shack.  All three of those books had me bawling in the plane and in the terminal, where I quickly learned that other than stifling BO the only other activity which will guarantee that you will be left COMPLETELY alone in an airport is crying.

As I waited in the terminal during an extended delay I nonchalantly decided to check my Facebook.  I noticed that I had some birthday reminders and as I clicked on the friendly FB reminders I started to cry.  A friend of mine who has died should have been celebrating her birthday and in that moment I hated FB.  I love my friend, I love remembering her, but the reminder that banal life goes on when the loss of her existence has changed the nature of the world for those who love her just left me gasping.  I could quickly see that people write messages to her and tag her in photos and I was simultaneously happy for that outlet for them but also mad at the utter reality that the social media version of her is a hollow shell.  We want the real one and the gulf between the two is so wide.

I thought of that moment as I read today’s “Life, Interrupted” blog at the NYTimes where Jaouad writes of how who she is in real life corresponds to who she is on FB.  It’s a lovely reflection that implicates us all as we continue to evolve in real life and on-line and figure out how to bridge the gulf between the two versions of ourselves.  What does long term illness look like on FB?  What happens when we die on FB?

Jan Berenstain died, then my childhood ballet teacher, then a Beastie Boy, and now Maurice Sendak.

I just want to stand at the barre, then drive with the window down and the ill beats blaring, stop by the night kitchen, and retreat to a tree house.

I was devastated to see that Adam Yauch died.  I felt anger as I read news stories that seemed shocked that somehow the slacker Gen Xers are finally facing their own mortality with their recent shows of mourning MCA, and I wondered, ‘What are they talking about?’  Most Gen Xers I know are fully aware not only of their own mortality but also the inherent brokenness of life and relationships.  We are devastated because the Beastie Boys are ours, are amazing, and 47 is too young to die.  If MCA were 67, okay, we’d still be sad, but people die of cancer in their 60’s, not 47.  “So, if you (if you), wanna know (wanna know) the real deal about the three, well, let me tell you [they're] 06 Triple Trouble ya’ll, let me bring you up to speed…”  I would keep going since there is a great rhyme with “Mr. Belevedere” coming, but it doesn’t make sense to my tribute.

I am proud to say that most of the significant moments in my life have at least one Beastie Boys Record in the soundtrack.  I learned to drive a car to License to Ill and as I carted my younger brother to his soccer games and we sang, 08 No Sleep Till Brooklyn at the top of your young Okie lungs, I thought, “If he grows up to love the B Boys, then my job as an older sister is done.”  I never tasted a Bouillabaisse until moving to Louisiana, but I’ve known since college that I would love it after the 12+ minute-record on Paul’s Boutique.  And then came the mind-blowing one-two punch of Check Your Head and Ill Communication and we could truly “feel the bass in our face in the crowd.”03 Pass the Mic  When I met my future husband and learned his nickname had been Carew, I knew he was a 01 Sure Shot “cause I got mad hits like Rod Carew.”  And my memories can go on and on in a Flute Loop of lyrics and jams.

Last week, Peter in the comments shared a fabulous clip to a project called “Alive Inside” where a nursing home social worker creates personalized playlists for the dementia patients which taps into their deepest memories and brings them to life.  I realize I need to add to my 5 Wishes document my Beastie Boys playlist for if and when I am demented.  At least then I will have an excuse for completely massacring lyrics and will be completely unself-conscious as I rap,

“Everybody’s rappin’ like it’s a commercial, actin’ like life is a big commercial,

So this is what I gotta say to ya’ll, be true to yourself and you will never fall.”

We will miss that deep raspy voice of your MCA.  “01 – Make Some Noise, if you’re with me…”

I stumbled upon this blog at NYTimes, and it is quite insightful.  Sadly, I think her experience both in responding to a friend who shares the news of an illness and in sharing her illness with others is fairly pervasive.  It grieves me how alone many of our fellow friends and neighbors are when they need us most.

“Breaking the news of my diagnosis felt like an existential game show in which people rushed to buzz in with the first thought that came to mind.

I admit to sometimes being hurt by the way my friends have reacted to my news. Some didn’t write or call at all. Those who did often sounded uncomfortable and distant. I needed their support, and I wondered where they were.” Read more…

Interesting story this morning on NPR’s “Family Matters” series on the true cost of family caregiving, whether in home or paid.  None of the statistics are particularly new: that our elderly population is growing due to increased longevity as well as the sheer number of baby boomers soon to be elderly; that women tend to be the in-home caregivers; that caregiving takes a toll not only on your potential lifetime earnings but your retirement savings in general.  But at least, we continue to talk about the subject.  The comments in the comment section offer even more heartbreaking tales of sacrifice and care.

In August of 2003, one of my worst fears came true.  Ms. Larkin could not remember me.

Ms. Larkin was my ballet teacher, and the studio, her home.  Although she toured the world with the Ballet Russe de Monte Carlo dancing with such legends as Agnes de Mille, her home was Oklahoma where she married the love of her life, fellow dancer Roman Jasinski, and where, through a school and company, they made a home for ballet.

I remember the last time I saw Ms. Larkin.  One hot Oklahoma August, I returned home to introduce her to  my husband and our young son only to realize that Alzheimer’s had already taken much of her away.

As we walked into the hallowed halls of the ballet studio on 33^rd and Harvard, I felt as though I was walking into my soul.  I am countless different people when I walk through the studio door, while I assumed that Ms. Larkin would always be the same.  I am a scared 5-year-old at Nutcracker rehearsal, who is overwhelmed by the corps de ballet and afraid of disappointing Ms. Larkin with her fierce, dark eyes.  I am a shy 8-year-old who never speaks to anyone and who is challenged by Ms. Larkin to speak up for myself. I am a gawky 13-year-old who is weak, struggling, jealous, and fighting the natural instincts of my growing body and who is reminded by Ms. Larkin that tall women simply have more of themselves to love.  I am a confident college student, who finally feels the proud eyes of Ms. Larkin doting on me and my dancing.  I still feel unworthy, but bask in the glow of her pride. I am a young single woman who has left the daily discipline of classes and rehearsals and return to meet with her as a young woman training for the ministry; trying to make sense of my artistic past.  How she spoke of her deceased husband, Mr. J., the dreams she’d had that have made life bearable, and the ways that her Buddhist faith have shaped the way she teaches ballet.  Great clarity was gained on my part and now, regretting that I didn’t do more.

Why didn’t I probe deeper into her life of faith and dance?  I was so naïve to think that she is indestructible, she’ll always be around.  She’s Ms. Larkin: one constant in a world ever in flux.  And now the opportunity has passed, and she sits in a chair in her son’s office and she does not remember.  She is alone, and so I am alone.  She forgets me, she forgets herself.  I grieve all the lost opportunities.

Her son walks us through the studio showing us the changes that have been made.  I fight the urge to run to my place at the barre where I stood for so many years.  The place where I sat fairy princess-style, watching Ms. Larkin skip around the room, a delicate crystal prism dangling from her fingertips.  As the rainbows of light flickered in our eyes, she invited us to imagine that we too could be prisms, magically transforming music into movement.  And so we’d stand at our assigned places, bending, stretching, kicking, and waiting to turn into rainbows.

Her son gently escorts his mother on our tour, she barely notices the change of scenery.

Alzheimer’s is a cruel, cruel disease.

Before we leave, I pause to write a note to one of the other teachers.  Ms. Larkin stands behind the receptionist’s counter and I long to see the true Ms. Larkin, just once, if only for a fleeting moment.  It feels as though I have been dismembered when I no longer see the best version of myself in her eyes.

From my limited work with Alzheimer’s patients in hospice care I know that many times the only way to connect is to delve deep into the past to our earliest memories.  The oldest memories are often the most accessible.  I begin to tell her of how I am teaching ballet and how I use her “5 Positions Song” to teach the basic five positions of the feet and arms.  She still looks blank but I forge ahead.  I begin to sing and move, “First position and second position…” By the time I get to third position her eyes connect with mine and she begins to sing and move in synch with me.  As we come to the closing pas de burre her eyes twinkle and she smiles at me—the true Ms. Larkin smile that always said to me, “I am pleasantly surprised that you’ve made me proud of you.”

Then she was gone, lost in her own world again.  For one moment, for me, what had been lost had been remembered.  As we left the studio, there was a quiet sadness within me and yet a breathless thankfulness for the gift of muscle memory that can remember us when our minds have failed us, for the sinews that can hold us in community long after our minds have severed all ties to reality.  The movement of the studio must make a home within us in order to remind us daily to live fully in the present moment, thankful for this breath, this step, this person beside us, this dance that is the breath of life made visible.

I learned that hot August day to trust my muscles and the memories that lie buried within them.  Thank you, Ms. Larkin.

“Night is drawing nigh.  How long the road is.  But, for all the time the journey has taken, how you have needed every second of it.” Dag Hammarskjold

At today’s Obit.com, Julia M. Klein reviews the recent book by anthropologist, John W. Green, Beyond the Good Death: The Anthropology of Modern Dying.  Fascinating.  As a guide to her review she ponders the experience of her own dad’s death and offers these beautiful words:

“Now, unexpectedly, he lay before us stiff and cold, but still recognizably himself. We were granted one final view. It was impossible to leave, but forbidden to linger.”

I really like this!  Granted, it’s expensive as is and I know that nursing homes in general are trying to be more homelike, but eventually neighborhoods across America are going to need to commit to its members aging in place.  As our boomers start retiring, I see second careers as caregivers…

Is there a glimmer of mercy in the universe?

Dwelling in silence this morning in the ballet studio, I reflected on the 35 years I have called the barre home.  As I looked across the room my eye caught the image of one of my fellow classmates who recently moved to the area and is struggling to get her feet settled.  A few weeks ago she shared after class some of her frustrations and how without this class to attend she probably would have given up and gone back home.  I smiled in resonance with her sentiment.  How many times in my life has a dance class been my salvation?  Even at my lowest I could step to the barre and somehow the music and the mirror reflected back to me that I belong, I am not alone, there is more to life than this current frustration, this current setback, this current reality.  Dance has often provided a glimmer of mercy in the universe when I have needed it most.

As a sophomore in high school I read Camus’ The Stranger with rapt attention.  Drinking coffee at his mother’s funeral, abetting his neighbor’s brutality, repeatedly shooting a man simply because he is hot, Meursault was and remains a distasteful stranger to me.  I could resonant with his longing for meaning in the great vastness of the universe but when he eventually opened his soul to the signs and stars of a benign, indifferent universe, I thought, NO.  Even in the broken cruelty of a Flannery O’Connor character, there is always one who glimpses a place of mercy in this often hard and mysterious world.  A grandmother witnesses the brutal killing of her family and as she converses with the serial killer who will indifferently execute her as well, she will not allow the cruel brutality of another to snuff out the whisper of mercy in her existence.  She could have titled this story the soul-crushing, hopeless: “There are no good men,” but instead a glimmer of mercy is seen in the title of her story: “A Good Man is Hard to Find.” No puppy dogs and rainbows, but a glimmer.

Of late, Elizabeth and I have conversed at length about a family she wrote about recently at HuffPost where the caregiving husband kills his wife and then himself, and sadly they are one of many others.  I have shared with her that I am haunted by the husband’s picture, which for some reason, The Alzheimer’s Reading Room shared when they broke the news of his and his wife’s death.  The echoes of every 75 year old man I have ever known or served as a pastor lives in his smile.  Gazing at his picture, a list of names and faces of my own run like a ticker tape through my mind.  I see their smiles, their families and their stories of sacrifice, health crises, relentless debility and crushing grief at all that can be lost before death, and I wonder, why murder and suicide for one and not for so many others?

I have been asked that question about hospice patients many times. “Do a lot of patients commit suicide?”  And my answer is always a resounding, “No.”  On the one hand I understand a healthy person being perplexed that one would not want to end life when the promises of tomorrow are waning, but that perspective seems naïve and a bit sheltered.  Over a decade of serving countless individuals, I have only experienced one suicide.  That suicide devastated that family and our hospice team in ways that death never has.  As our team sat with counselors to process our thoughts and emotions I wondered, ‘We are around death 24/7.  Most of the people at this table are on call at night and on weekends.  I have taken calls on Christmas and been with families and our team whenever needed.  Why does this suicide grieve us so acutely?’  The only word I could find was mercy.  Part of the beauty I have seen on a hospice team is the abiding belief in the inherent mercy of the universe which may be communicated through a cool rag on a forehead, a reassuring voice over the telephone, through the mystical moments when a person is still with us and yet already gone.  We focus on alleviating pain, loneliness and fear, because those experiences build on the relentlessly unmerciful elements of existence.  In finding the unique expressions of mercy in a person’s life, we contribute to ongoing glimmers of mercy in the universe.

Many have implied that killing his wife and himself was merciful.  Euthanasia proponents will even use the term “mercy killing.”  But I take issue with that use of the word mercy.  I know that psychologists and counselors, Alzheimer’s and grief experts will say that suicide is always the result of a mix of nature and nurture, chemical make-up and mental health, circumstance and chance.  As with the many roles we play, the true burden of caregiving can only be experienced first-hand, and the trek of caring for a loved one is rife with moments where the stars and signs of the universe gaze down with unfeeling and unmerciful indifference. But when I use the word “mercy” I try to do so carefully.  When I think of mercy, I think of receiving undeserved or unmerited kindness or treatment. A merciful act is one that reconnects us to humankind—reminds us that we belong, that we are not alone, and that our lives have meaning beyond the current reality.

“On the just and unjust, alike it doth rain,

And the quality of mercy is not strained.”  Michelle Shocked