Archives: Aging, Disability, Death, Dying

Gen X Caregiver Movie Review

01.21.2013 3:36 PM

Last weekend I finally had a chance to watch the movie Beginners with Ewan McGregor and Christopher Plummer.  Ewan plays Oliver, 38-year-old Gen Xer struggling to find a stable love relationship.  That search really plays second fiddle to his story of caring for his dying his father and living with grief in the year after his death.  He epitomizes today’s Gen X caregiver.  After forty-four years of marriage Oliver’s mother dies of cancer and his father at 75 years old comes out.  His father, Hal, will live four more years with a boyfriend and his son by his side, as well as a loyal Jack Russell Terrier, who we know is deeply understanding from the dog subtitles.  Hal too will face cancer, needing to spend long spells recuperating in the hospital, coming home and facing chemo and radiation treatments, finally entering hospice and dying at home.  Oliver learns that his mom knew his father was gay the entire marriage but thought she could change him.  His father hoped she could too, but also knew better.  Oliver simply thought they didn’t love each other.  Most fascinating to watch Oliver, as a son, peer into the mysteries of his parent’s world and be able to name the grief he felt in his mother’s longing for love and the joy he feels at seeing his father know great love now in his old age.

The whole film resonates with Gen X sensibilities.  Vintage music, multi-media splashes, quiet verging on sardonic wit—for example, to relieve stress Oliver’s friend takes him to tag graffiti and Oliver chooses to graffiti historical consciousness like “1983 Chicken Nuggets Invented.”  On a personal note, it was amazing to see hospice taken as a normal course of events and not as something that needs to be explained or as some monumentally courageous choice that takes center stage.  Hospice is simply known and accepted.  And Oliver faces a situation that some Gen Xers may be facing with parents in a generation for whom being openly gay was not socially acceptable to the levels it is now.  In his seventies, Hal becomes an activist for gay rights, writing letters in support of openly homosexual individuals running for political office.  Oliver helps him stuff envelopes and as he places a rainbow sticker in each one Hal asks, “You know that’s a symbol of gay pride, right?”

Oliver responds, “Yes, Dad, everyone knows that.”

“Do they? Do they?” Hal asks quietly.

The film presents Oliver’s grief most poignantly; as a force that covers his life like a shadow he cannot escape.  As an artist, he spends the entire film working on an album cover for a new band.  He presents them his ideas three times and every time they are dumbfounded.  In one presentation he presents their album art as a “history of sad” and calls them “the Sads.”  We watch them silently look at the page after page of sadness he has created and then say, “We just want pictures of our band members.”  He nods in understanding but also knows he can’t create anything but sadness.

Towards the end of the film I was struck by a scene that embodies some of what we heard concerning stepparents after the death of a parent and with what Andrew Root writes in The Children of Divorce on why connections in stepfamilies can be confusing and difficult to navigate for children of any age:

“…many step- or blended families confront the tension of the conflict between the obligatory bonds of biology that form a straight line to one’s identity and the free choice of the pure relationship that constructs identity through intimacy….But children are told to act like these people are family, while having no choice at all.  For the child, the stepfamily lacks both the biological correlation and the free choice to be with and for these people.” (41)

Several months after Hal’s death, Oliver needs someone to take care of Arthur (the understanding Jack Russell Terrier) who is especially finicky about who keeps him.  Oliver remembers how connected Arthur was to Andy, his father’s boyfriend, and sure enough Arthur is at home with Andy.  When Oliver returns, Andy notes that Oliver hasn’t been in touch since the death of Hal and asks, “It’s because I’m gay?”

Oliver looks lost, as he has looked through most of the movie since his dad’s death.

“You haven’t called.  I haven’t heard from you,” Andy explains.

“My father loved you so much,” is Oliver’s only response and they hug.

It’s a lovely moment and yet resonates with much of what we heard from stepchildren about how after the death of their mom or dad, from which they were reeling and lost, their stepmom or stepdad receded into silence, unlike most biological, surviving parents.  A reminder that a stepparent, like a parent, is a thankless job where no matter how old your child or stepchild is, you are in the place of power and in the place to define the relationship.  Reaching out after the death of your spouse to the child of your boyfriend, girlfriend, or spouse can make a HUGE difference, and it doesn’t happen that often.  I wanted to yell at Andy, who is about the same age as Oliver which can be confusing for a stepparent, “NO!!  YOU should have called Oliver!!!”

In the end, Beginners is a lovely film snapshot of today’s Gen X Caregiver.  My favorite visual picture being son Oliver sitting in the glow of hospital light reading to his father late into the night.  The ways the human voice can ground us and connect us to the stories we tell and that tell us.


New Film on Middle Class Boomers & their Financial Decline

01.14.2013 11:51 AM

As I read this preview of a documentary film on the financial state of the boomers since The Great Recession, I thought of all the contributors to our recent FamilyScholars Symposium on State of our Unions.  Each pointed out that supporting marriage is not the only way to support the middle class and these numbers remind us that we need all hands on deck, especially as this generation moves into old age in the next two decades.

“One of the lasting effects of the Great Recession has been the economic spiral downward of the American middle class, and no group has been harder hit than the boomer generation, men and women in the prime of their working lives.

From 2007 to 2009, workers 55 to 64 year old who lost jobs had been making an average of $850 a week; those lucky enough to be re-employed by January 2010 were earning $647 a week, a 23.9 percent drop in income.

Younger boomers, ages 45 to 54, had been averaging $916 a week; the jobs they were able to find after the recession paid $755, a 17.6 percent decline.

That is the story Susan Sipprelle tells in her new documentary, “Set for Life,” about the generation that was so sure that they were — until their lives came undone during the Great Recession…”  Read more


More Thoughts on Forgiveness and Public Witness

01.09.2013 4:27 PM

I missed commenting on Barry’s recent post that reflected so deeply on forgiveness-we got to 50 comments so fast, so I am opening a new thread.

Over the last few days I have been reading Barry’s post and the comments as they arise and I will admit I have cried many times, sat in silence many times, and prayed many times.  The stories and thoughts that have been shared are deeply sacred to me and I am humbled to have read them.  I have been thinking of Henri Nouwen and his book The Wounded Healer which I read many moons ago and how it was the first book that welcomed me into my life-long quest to learn empathy.  I am reminded of the grieving people I had the chance to host and hear this past year and how every story of family and death reminded me that everywhere I go—the frozen yogurt place, Target, the grocery store, church, etc.—I am surrounded by people who are most likely carrying something, a weight, a memory, a loss, a burden beyond my comprehending and that the call to kindness and a tenderness of heart never ends.  I never cease to be stunned by the depth of cruelty that humans can embody and inflict, and conversely by the depth of resilience that can be expressed in the face and aftermath of cruelty.

Forgiveness is a mystery to me.  Sure, I can read about it, study it, dig into scripture, read memoirs, define it, and yes, all those things will help me understand how and why forgiveness has been expressed by others, but in my own life forgiveness (both the receiving of it and the giving of it) remain a mystery and always hold a bit of the miraculous.  As a pastor, forgiveness is always balanced with confession as peace is always balanced with justice. I’ve only been involved in restorative justice in a cursory way that involved non-violent juvenile offenders and the goal there was to help the teenager see the greater impact his/her choices made on the broader community.  Overall this tack has been successful, although I’ve often wondered how the process relates to the still forming frontal lobes of teenagers.

I feel like I could write and write, but I’ll close again by saying thank you to everyone who has shared here and that you remind me to keep my eyes open and be a witness to those experiencing any level of brokenness in their relationships and to remember that being a witness will change in each situation—sometimes I can intervene (like for a child) but for my fellow adults witness means simply being present and trying to create safe space for them to define how they want to respond, honoring that choice in the moment, and remembering that those choices may change and fluctuate over time.

For further discussion I have often pondered the work of Dr. Ira Byrock who wrote The Four Things That Matter Most a book that inspired many hospices, included the one where I served, in a core care planning tasks of helping individuals express four (and we expanded it to five) key things a person can express before death, often called “end of life closure:”

1)      Please forgive me.

2)      I forgive you.

3)      Thank you.

4)      I love you.

5)      Goodbye.

As you can imagine, the form and tenor of each phrase is shaped by countless particulars of history, ability and willingness and the living of each expresses a depth of character, hope, and truth that never ceases to fascinate me. However, the previous comment thread reminded me that these phrases always need a context of reality, truth-telling, and definition of terms.  I find that having an interdisciplinary team offering analysis and tools to create space for individuals to explore these expressions on their own terms helpful, but I realize that in this day and age, a blog becomes an on-line interdisciplinary team of both challenge and hope.  It feels as though public presence has shifted and that the ability of witness has both shifted and become more available but just as difficult.


Aging and Homeless

01.07.2013 10:30 AM

An interesting new study on a demographic of aging men who will soon be in their sixties. Our hospice in Baton Rouge served many homeless individuals over the years, finding public meeting places like libraries and McDonald’s for nurses’ visits, working with the individual to tap into any support people possible, a pastor or friend, who might act as a second pair of eyes and ears. The persistence of homelessness struck me as quite powerful.

“Culhane says many of the chronic homeless are young baby boomers who came of age during the back-to-back recessions in the late 1970s and early 1980s. Older baby boomers had taken the best, highest-paying jobs, and housing supply was tightening, he says.

Unable to find work, some of the homeless got involved in the growing underground drug market, in particular crack cocaine. Many ended up in prison, where they became estranged from their families, he says. Others would spend the rest of their lives cycling between unemployment and occasional stints in menial, low-paying jobs.

The combination of substance abuse, loss of family support and economic displacement became defining factors that affected those men the rest of their lives. The impact, Culhane says, has implications both for their own lives and for society.

In an academic paper written this month, Culhane and four of his colleagues contend that the homeless in this age group have been the mainstay of the single adult homeless population since the 1980s and “will soon fade into history but not before medical issues related to aging ensures that they will have one last profound impact on the social welfare system.”

As the men continue to age and suffer poor health, managing their chronic diseases will become increasingly problematic over the next 15 years until the men reach age 64, the average life span of the chronically homeless. While continuing to treat them in homeless shelters is not a realistic solution, there are few other options besides expensive hospital and nursing home care.

No community has yet to figure out a strategy for dealing with this demographic wave, Culhane says.

“Everyone is struggling with this issue,” he says.”  Read more…


Litigation versus Health Care Reform

12.31.2012 9:36 AM

Wow. It will be interesting to watch how this new law in China unfolds.  Truth be told, I thought that the US was the most litigious place to live, but in terms of filial piety perhaps I was wrong.

“State media say the new clause will allow elderly parents who feel neglected by their children to take them to court. The move comes as reports abound of elderly parents being abandoned or ignored by their children.

A rapidly developing China is facing increasing difficulty in caring for its aging population. Three decades of market reforms have accelerated the breakup of the traditional extended family in China, and there are few affordable alternatives, such as retirement or care homes, for the elderly or others unable to live on their own.”


‘Long term marriages are the real love stories of our time’

12.30.2012 3:55 PM

Jill Brooke writing at HuffPo:

…I last saw Nora Ephron earlier this year at the memorial for best-selling author Charla Krupp, who shocked her circle of loyal devoted friends by never divulging her terminal illness. While Nora was behind me as we signed our names on the guest book, a few friends, with tear rimmed eyes, came up to us questioning how anyone could keep a terminal illness secret or would want to make that choice. “We live in the age of the Internet where everyone tells everyone everything,” cried one friend.

“The credit should go to a good marriage,” I said, referring to Charla’s partnership to Time magazine’s theater critic Richard Zoglin. “How lucky was she that her husband’s love was enough that she didn’t need anyone else.”

I then turned to Nora and for some inexplicable reason said, “Don’t you agree?” In owl-like black sunglasses, the celebrated writer of romantic comedies like Sleepless in Seattle and When Harry Met Sally nodded her head and whispered, “That is so true.” Only now I realize she most likely was thinking of her own husband, writer Nick Pileggi, whose quiet unwavering support gave her the protective cocoon to keep her secret intact — even from her children…


‘Ancient Bones That Tell a Story of Compassion’

12.18.2012 9:49 AM

NYT piece today on new work by archeologists who say a Stone Age community in modern-day Vietnam took care of a man who couldn’t take care of himself:

While it is a painful truism that brutality and violence are at least as old as humanity, so, it seems, is caring for the sick and disabled…The case that led Lorna Tilley and Marc Oxenham of Australian National University in Canberrato this idea is that of a profoundly ill young man who lived 4,000 years ago in what is now northern Vietnam and was buried, as were others in his culture, at a site known as Man Bac…


Why is the family so important for a person with a disability?

12.12.2012 10:13 AM

Many of you have heard that family relationships are important for a person with a disability. But you may wonder why families are so important?

I invited my dear friend, teacher and colleague Leonor Cordoba, who has extensive experience in family-related issues and disabilities, to join with me in writing this post. We’ll share a personal story to give our answer to the above question.

We had the opportunity to meet and to talk with John.  John is 43 years old, has a slim physique, and enjoys music and celebrity related news. He is shy and respectful in demeanor.  He experiences mild cognitive deficits associated with obsessive compulsive disorder which severely limit his ability to live at a functional level, and especially limits his intrapersonal interactions both in his work and social environments, particularly interactions with the opposite gender.

With deep love, but very firmly, his family supported his efforts to achieve his goals and to make important decisions in his life. For example, they supported him and challenged him to get his high school degree despite his age.  They also encouraged and supported him as he applied for a job.  Even now they help support him as he copes with anxieties that have long existed surrounding the risks of not being accepted and fears that if he is assessed through work or school related psychological tests that his “limitations” will be exposed.

Only John’s family is able to understand when he brushes his teeth 5 times in an hour, or used all the soap during a bath. Also, when he responds with completely different ideas when someone ask him about something important, or events that require his participation in problem solving or decision making. Only his family gives him daily words of encouragement to face difficulties at work when he does not meet the expectations of his bosses, or when he doesn’t understand the instructions. All things considered, it is important to clarify that people with disabilities can struggle with seemingly simple activities, like making a choice, performing daily activities or understanding simple instructions. It could become a stressful situation that causes anxiety and confusion to them.

The stories of John help us to confirm something that scientific papers support (Heller & Factor, 2008; Taggart, Taylor & Mccrum-Gardner, 2010) about families of people with disabilities in general, but particularly with intellectual disabilities: “family is at the center of support for people with disabilities”.

Thus, one of the main challenges professionals have in psycho-social care for those with disabilities is to provide other family members the support required to be personally and collectively strengthened, and to develop resilient strategies for their family and loved one in a society that often still remains exclusive.


¿Por qué es importante la familia para una persona con discapacidad?

12.12.2012 10:07 AM

Muchos de ustedes habrán escuchado que la familia es importante para una persona con discapacidad. Sin embargo, se preguntarán ¿cuál es la razón de esta importancia?

He invitado a mi querida amiga, maestra y colega Leonor Córdoba, quien tiene una amplia experiencia en temas relacionados con la familia y la discapacidad, a escribir en esta ocasión conmigo en Family Scholars. Les compartimos en este post una historia personal:

Tuvimos la oportunidad de conocer y conversar con Juan de 43 años, de contextura física delgada, especial gusto por la música y las noticias relacionadas con la farándula, una persona respetuosa y algo tímida. Un hombre con un déficit cognitivo leve asociado a un trastorno obsesivo compulsivo, que lo limita mucho a nivel funcional, y especialmente, en la interacción tanto en su ambiente laboral, como social, particularmente, en las relaciones con el otro género.

En medio de lágrimas nos contó sobre los repetidos fracasos amorosos que había tenido, en un intento “obsesivo” por llevar una vida de pareja “normal”, y cómo esos repetidos fracasos, cada vez lo llevaban a pensar en que lo único firme que tenía en su vida era su familia, constituida por mamá y hermana. Sólo ellas, según él nos narraba, entendían que a pesar de sus limitaciones y obsesiones, era un hombre capaz de amar, sufrir, gozar, sonreír, capaz de ser.

Con amor profundo, pero con mucha firmeza, su familia, lo apoyaba para lograr sus metas y para tomar decisiones trascendentales en su vida, como la de terminar su bachillerato a pesar de la edad, o aplicar a un trabajo, en el que existía mucho riesgo de no ser aceptado, si lo evaluaban a través de pruebas psicotécnicas, porque en ellas se pondrían en evidencia sus “limitaciones”.

Solo la familia de Juan, era capaz de entenderlo cuando se cepillaba hasta 5 veces los dientes en una hora,  o se acababa una pasta de jabón, durante un baño. También cuando respondía con ideas completamente diferentes al preguntarle sobre algo importante, o con eventos en los que se requería de su participación frente a la solución de problemas o toma de decisiones. Solo su familia diariamente le daba una voz de aliento frente a las dificultades en el trabajo, porque no cumplía con las expectativas de sus jefes, o simplemente, porque no entendía las instrucciones. De acuerdo con lo expuesto, es importante aclarar que las personas con discapacidad pueden enfrentarse a grandes dificultades frente a situaciones sencillas, como por ejemplo tomar una decisión, realizar actividades diarias o comprender instrucciones sencillas. Podrían convertirse en situaciones estresantes que causan ansiedad y confusión para ellos.

Los relatos de Juan, nos llevaron a comprobar algo que  los artículos científicos sustentan (Turnbull, Turnbull, Kyzar, 2009; Córdoba, Mora, Bedoya y Verdugo, 2007)  en torno a las familias de las personas con discapacidad en general, pero, particularmente, con discapacidad intelectual, “constituyen el centro de la vida de las personas ” ; y siendo así, uno de los principales retos que como profesionales en la atención psicosocial a la discapacidad tenemos, es el de brindar a esos otros integrantes de la familia, los apoyos requeridos, para que se fortalezcan personal y colectivamente, y desarrollen estrategias resilientes, no solo frente a la discapacidad, sino primordialmente, frente a una sociedad que aún es excluyente.


“Till I Survive Ten Rotten Years With You”

12.11.2012 5:36 PM

At Mary Beth Franklin’s “Retirement 2.0″ column, she writes:

During a recent gathering of Social Security wonks at the Newseum in Washington, DC, last month, I joked that perhaps marriage vows should be rewritten to raise awareness about the value of Social Security benefits for divorced individuals under certain conditions…if you can’t make it for the long haul, at least hang in there until you cross the ten-year mark. That’s how long a marriage has to last in order for you to collect Social Security benefits on your ex…


Dementia, Divorce, and a Daughter

12.08.2012 7:59 PM

Rebecca Ley writes at The Guardian:

There is never a good time to be diagnosed with dementia. But for my dad it was particularly inconvenient – as he was in the midst of getting a divorce from my mum. Knee deep in legal bills and emotionally spent, overnight he was deemed incapable of managing his own affairs.

It was a divorce they had both threatened for years but none of us really thought it would ever happen. They had lived apart for over a decade but were still closely enmeshed in each other’s lives and loved each other, despite their difficulties. I think I secretly thought they’d live out their dotage together in the house by the sea – arguing but involved to the bittersweet end.

That wasn’t to be, and it’s probably for the best. But the experience of suddenly having an active role in their marital breakdown, as his power of attorney, was a rude awakening to my new responsibilities…


What to Expect…Elder Edition

12.07.2012 12:23 PM

A good and helpful piece up at NYTimes New/Old Age blog comparing lessons from raising dependent children to supporting dependent elders:

“The urge for independence is seen in all animal species, but relinquishing independence and accepting assistance in old age is unique to humans. For most elderly, it comes with a struggle, reflecting how hardwired our brains are for independence. The thought of getting in-home help is antithetical to our parents’ sense of self worth, exceeded only by the dread of leaving their homes for assisted living facilities. So, as tasks that were once mundane and automatic have become onerous and stressful for them, we attempt to foster autonomy while protecting them from harm, as we did with our children just a few short years ago…

What wisdom did we gain the first time around to help us now? Patience, consciousness and white lies.”  Read more…

 


Carrying the Self in Light and Dark and the Therapeutic Role of the Deep Sigh

12.06.2012 12:11 PM

Several weeks ago I eavesdropped on one of the never-ending, mini-van conversation/argument/melees between my three children.  This particular one ended with our 2nd grade daughter saying to her two brothers, as only a sister can, “Worry about your SELF! Keep your hands to your SELF! Take care of your SELF!”   With this pronouncement on the self and our personal responsibility for our own selves, the car went silent.

Quietly her younger brother piped up, “Bella…what’s a self?”

My eyes widened and my ears perked up as only a theologian/philosopher mama bear’s will as I waited with great anticipation to see if any of my deep pondering had transferred to my children.  What would my daughter say?!?! Would she spin Tillich-esque and proclaim the power to be, would she murmer in quiet despair the empty desolation of Camus, would she wax poetic, intoning a deep connection to nature a la Mary Oliver?

An audibly annoyed, prolonged sigh emitted from my daughter, “Ahhhhhughhhahhhhh…”

‘PERFECT!’ I thought.  She is so wise.  Any answer to what is the self must begin with a deep, guttural sigh!

In this first week of December, I have been pondering what practical advice to give those who are carrying the self of a loved one this holiday season.  For some, this is meant literally as they wear the mantle of caregiver and currently tread the delicate dance of learning how to read the needs of one they love whose health is declining while gauging each day how best to meet those needs.  For others, they carry the memory of one they love, seeking ways to honor that memory while writing a new story.  Both roles are exhausting and often made alone simply because of the unique role they play for their loved one.  Much like a newborn’s connection to his or her mother or father, a babysitter can do for a spurt, but nothing replaces the nuanced relationship of one who is providing 24/7 care.

I began with the story of my children’s conversation about the self because they reminded me of the cathartic role deep sighs can play in our lives.  How often do those who care for others keep all of their frustrations, annoyances, and wordless emotions bottled up inside?  Giving yourself permission to indulge in a deep, dramatic groan can be good for your spirit.  On a side note, I highly recommend doing this sighing alone in order to avoid the eye-rolling that will surely come from others, but alone, the full drama of the moment can be savored.  I imagine that this task of deep sighs taps into the mysterious work of the Holy Spirit who is said to speak in sighs too deep for words.

Whenever I read the Psalms, I always find myself gravitating to the images of creation groaning for justice, for peace, for hope.  I think the sigh and the groan may be what can connect us most fully to our humanity and to our hope for a better, more just future.  After reading recently a beautiful book on theodicy by preacher, Tom Long, called What Shall I Say? I was reminded of how our connection to humanity may be what is most comforting in the face of suffering, evil, and the question of the self.  Long draws a long a reflection on the character of Job and concludes that in the end, Job finds comfort and meaning in his humanity.

“Therefore I will be quiet, comforted that I am dust… [but] what is striking here is that Job is not reduced to nothing.  He has instead become what he truly is, a human being, a creature made of dust, living before God in a real world that no longer needs to be sustained by a fantasy.  And he takes comfort in that.” (110)

When one emits a guttural sigh, we can imagine the trappings of fantasy release.  Fantasies where we create the moral order, where suffering is understood, and where an end point of our own making exists where full clarity is gained.  A deep, guttural sigh can say, “I am still on the journey.”  God never says this-only humans.  And we are human.

In terms of practical resources, I would highly recommend The Unbroken Circle: A Tool Kit for Congregations Around Illness, End of Life, and Grief. I am planning on giving this toolkit to family members and friends for Christmas (gift spoiler alert, fam!) because it is chock-full of helpful resources, questions to ask, websites to visit, and so on.  In one of the book’s sidebars, author James L. Brooks highlights one of my all-time favorite books by Dr. Ira Byrock called The Four Things That Matter Most: A Book About Living.  Our hospice team often used his suggestions as a way to assess where patients and families were in terms of “end of life closure,” but they are wonderful tasks for any of us to ponder as we connect with loved ones this season.  Dr. Byrock basically observed that most humans engage in 5 basic tasks of communication at the end of life, and part of our role in caregiving is to explore how to facilitate the communicating of these themes while naming them for ourselves and for the one we love.

 1)      Please forgive me.

2)      I forgive you.

3)      Thank you.

4)      I love you.

5)      Good bye.

How each of us and our family systems communicate these messages will differ greatly depending on the level of expressiveness, assertiveness, and creativity in our character.  Talking with other caregivers can help greatly in this discernment process.  This last week I re-read several times a powerful piece by Jonathan Rauch on caring for his dying father.  His words reminded me of how therapeutic finding avenues to talk can be, and how those of us not caring for a loved one should be impelled to make ourselves available to listen.  Just listen.

Listening and the tasks of goodbye remind of hospice nurse, Kathy Kalina’s classic book Midwife for Souls: Spiritual Care for the Dying.  I don’t know if I have met anyone in hospice care who has not resonated with some element of her image of those caring for a loved at end of life as a midwife for a soul (a self), which she defines as:

 “a natural, gentle approach to an intimate and life-changing family event, with careful attention throughout the process to the body, mind, and spirit of the patient as well as to the family.”

Kalina wisely reminds those who care that our greatest task in caring for one who is ill or facing death is eliminating fear, and alleviating fear demands precious time.  As much as caregiving consists of relentless tasks, there are many times when our greatest gift is prolonged moments of quiet presence that say, “I am with you, and I am not afraid.”   Caregivers communicate that to their dying loved one, and we, as friends and family, can communicate that message to those who are caring.

And yet deep sighs still arise and in the darkest of hours my heart goes back to the words I read in wonder from Teresa of Avila in Interior Castle.  At the height and depth of her vision of God, she heard these words, “All will be well, all manner of things shall be well.”  For a modern version of this message I turn to the secular theology and driving banjo and bass of Mumford & Sons, who sing: 05 Ghosts That We Knew

“The ghosts that we knew will flicker from view and will live a long life

So give me hope in the darkness that I will see the light

‘Cause oh they gave me such a fright

But I will hope as long as you like just promise me we’ll be all right…”

All will be well, and all manner of things shall be well.

Deep sigh.


Bereavement and Depression

12.05.2012 2:14 PM

A good article up at Geripal from Dr. Ronald Pies concerning the changes in the DSM-V removing the bereavement exclusion in screening for Major Depressive Disorder.  He includes a great list for further reading and concludes:

“In conclusion: eliminating the bereavement exclusion means essentially this: the death of a loved one–a common precipitant of major depression—-will no longer be a “disqualifying” factor in diagnosing MDD, within the first few weeks after bereavement. This emphatically does not mean that we should be starting everyone with bereavement-related MDD on antidepressants! Some depressed and bereaved patients will heal and recover with “tincture of time”; some will benefit from cognitive, supportive or grief-oriented psychotherapies. More severely depressed, grieving patients–those, for example, with melancholic features or pronounced suicidality–may require concurrent medication and psychotherapy.

No, indeed: we must not “medicalize” normal grief. But neither must we “normalize” major depression, simply because it occurs in the context of bereavement.”

His piece rightly stresses that medical professionals will wisely use the DSM, whatever version, to make sound clinical decisions.  But I raise there in the comments how there is both the use of the guidelines by professionals and then the public perception of the guidelines.  As a hospice professional, I saw countless times how grieving individuals who had never read Kubler-Ross directly clung to a belief that there were 5 distinct stages of grief and by golly, they were going to work through each one and be done with the whole thing.  Or folks who would talk about the decision to focus on mainly on palliative care versus mainly curative care as “pulling the plug.”  There was no plug!

The professional use of this change in guidelines doesn’t worry me as much as the public impression that grief is somehow treatable or that grief can be stigmatized as a disease.


The Importance of ORDERS at the End of Life

12.05.2012 11:34 AM

Okay, I put the word “ORDERS” in all caps in my title for a reason. Of late, there has been some discussion about the use of POLST (Physicia’s Orders for Life-Sustaining Treatment). One particular reaction stressed that the power of POLST lies in its being an ORDER.  I had an aha! moment. I often talk about end of life wishes, and making your wishes known IS important.  However, as a lay person I had no idea the power that physician’s orders have in the medical world until jumping in the deep end of hospice care.  Medical professionals, especially nurses, take a doctor’s order with a level of obedience and seriousness I have rarely encountered.  My initiation into this reality came through the telephone.  In a hospice office the phone rings constantly-patients and families calling, community members calling, doctor’s offices calling, volunteers calling, hospitals calling with referrals-and mixed in those calls will be physicians calling with changes to medications, changes to treatments plans, or orders for hospice care to begin.  Giving orders is one thing only a physician can do, I knew that, but what was unknown to me as a lay person is that ONLY properly trained people can ACCEPT physician’s orders. The words are the same but the order is not an order if I take it–but it IS an order if a nurse, who is properly trained to carry out the order, does.  And I quickly learned that most nurses will walk to the end of the earth if that is what the order says.

And so , aha! Yes, POLST is tremendously important and vitally different from end of life wishes.  If you are confident about what you want at the end of your life, work with your physician to complete the POLST form.  It will follow you everywhere and medical professionals will treat those orders with a level of sanctity that end of life wishes will never command.  It’s an order.


Missing a Parent During the Holidays

12.04.2012 1:46 PM

Although I often write about grief and the holidays, this year those who are missing a parent due to divorce or incarceration were also on my heart.  Here is a link to my piece at the HuffPost on remembering those who are missing loved ones or missing parts of themselves this holiday season.  Especially in light of the recent discussions on incarceration and parenthood here and elsewhere, my mind went to the stat that one in 28 children has a parent behind bars.  This chills my soul.

Thanks for reading, and appreciate any feedback.


‘Divorce rising among couples over age 50, raising new money concerns’

12.01.2012 6:47 PM

Pamela Yip at the Dallas Morning News writes:

The divorce rate among adults age 50 and older doubled between 1990 and 2010, according to a study by Susan L. Brown and I-Fen Lin, sociologists at Bowling Green State University.

“Roughly 1 in 4 divorces in 2010 occurred to persons aged 50 and older,” they said in their study, which was released last month.

What’s more, “the rate of divorce was 2.5 times higher for those in remarriages vs. first marriages, whereas the divorce rate declined as marital duration rose.”

The United States has the highest divorce rate in the world, with roughly 45 percent of marriages expected to end in divorce, the study said.

“Although divorce has been studied extensively among younger adults, the research to date has essentially ignored divorce that occurs to adults aged 50 and older,” Brown and Lin said. “This omission is notable, considering that the United States is an aging society.”

Baby boomers were the first group to divorce and remarry in large numbers in young adulthood, the study said.

“Now they’re aging into their 50s and 60s, and this portends that a growing number of older adults will experience divorce because remarriages are more likely than first marriages to end through divorce,” the study said…


I am Gen X, and I’ve Got My AARP Card

12.01.2012 5:42 PM

There is only a slightly larger than typical age gap in our marriage (my husband is eight years older than me). He turned 50 this fall and, never one to pass up a deal, joined AARP. Apparently spouses qualify for membership too, so this week, at age 42, I became the ambivalent recipient of an AARP card in my own name.

Gen X is getting older — which means our Baby Boomer parents are….?

In a current project, Amy Ziettlow and I are tackling the big questions Gen X will face in caregiving for their “let’s keep rewriting the rules” Boomer parents before the biggest birth cohort in recent US history hits their Golden Years. America, fasten your seatbelts!


Caregiving Men

11.30.2012 11:10 AM

Today’s AARP highlights a thoughtful piece by writer and caregiver Chuck Ross.  His blog “Life with Father” is quite powerful, and he continues to write about his journey of grief after the recent death of his dad. Ross writes about the often invisible role of male caregivers.  Although I tend to want to support all caregivers regardless of gender, he makes a good point:

“Martin outlined a number of the statistics brought to light in the 2009 Caregiving in the U.S. report published by AARP and the National Alliance for Caregiving. That report’s researchers estimated that 66% of U.S. caregivers are women; thus, 34% of those caregivers are men. Obviously, women make up the majority of this population, but the percentage of men taking on this job is growing quickly.  In 1996, male caregivers made up only 19% of the total, and some current estimates place today’s percentage closer to 40%…The challenges this country faces in taking care of its exploding elderly population are just too enormous for us to spend what little prep time we have arguing over caregiving’s quickly vanishing gender lines. If you’re old enough for AARP membership and your parents are still living — regardless of your sex — this issue will hit you. If you’ve passed your 70s and have children — regardless of whether they are sons or daughters — it will hit them. This is not a women’s issue or a men’s issue, it’s a people’s issue, and all of us who have done or are doing this work have something to add to the conversation.”


You too Could be a Nate Dogg

11.28.2012 9:13 AM

Inheritance junkies, like me, have been following the story of Nate Dogg’s estate as his biological children, his wife (their stepmother) and his mother battle over $200,000 in real estate.  His story reminded me of the kerfuffles chronicled in our recent interviews with Gen X grievers where remarriage complicates who has “ownership” over the deceased.  I think of Bobby, a stepson, whose mother now lives with him after his stepfather’s death because his stepfather’s children kicked her out of the house in order to sell it.  His stepfather did not have a will and even though she could have kept the house in the long run she did not want to go through a lawsuit with his grieving children. At the close of his story Bobby turned to me, shrugged, and asked, “But, now, who is paying the price?”