A insightful post by Michael Hodin, the Executive Director of the Global Coalition on Aging, is up at HuffPost.  He critiques our current budget plans by pointing out that we need to focus on healthy aging and employing an older workforce in order to reduce our dependency ratio.  I hope someone is listening.

This recently released report in The Gerontologist is blowing my mind.  Titled “Baby Boomer Caregivers: Care in the Age of Individualization” the report interviewed 39 Baby Boomer caregivers in Quebec.  The authors use the term “the denaturalization of caregiving” to describe a phenomenon they see where individuals are consciously juggling multiple, distinct identities in an age when a sense of familial responsibility is waning.

“Notably, the women we met with call themselves ‘caregivers’ and not simply wives, daughters or mothers, indicating that the work of caregiving no longer falls within the realm of ‘normal’ family responsibilities.”

On a side note, I am wondering if my kids would accept calling me caregiver instead of mom…

On a deeply troubling note, the authors find that for baby boomers their sense of caregiving responsibility rests on their perceived quality of the relationship.

“The baby-boomers in our study appear to have a new conception of care whereby the documented, negative consequences of caregiving such as poor mental and physical health, sacrificed personal and family life, or impacts on employment, are no longer considered legitimate. This conception seems to have arisen in parallel with changing notions of family solidarity. Norms of solidarity are becoming less prescriptive, leaving room for an interpretation of family obligations that increasingly depend on many factors. These include the types of interpersonal relationships one has with the person requiring care, one’s availability to care, one’s family’s situation, and so on. In other words, you are only legitimately expected to care if you have a good relationship with the person needing care and if you have no conflicting commitments that take precedence over caring.” (emphasis mine)

Wow-ee.

I do not envy stepparents.  Granted, I am sure there are outliers: stepchildren who connect with their stepparents on a profound and meaningful level thus creating a relationship that runs as a constant thread of support and love throughout a lifetime.  Judith Wallerstein points out that these outliers do exist.  But the more that I listen to stepchildren and step-siblings reflect on their relationships with their stepparents and step-siblings, the Brady Bunch rarely happens, and any sense of obligation or loyalty tends to vaporize with age.  Once a roof is no longer shared, any sense of connection emotional or physical is no longer shared either.

My thoughts are just forming here but I think it relates to choice. In Blue Nights, Joan Didion reflects on the undercurrent of fear that seemed to run through her adopted daughter’s existence.  A fear of abandonment.  Even though she and her husband affectionately called her “the chosen one.” The title seemed to exacerbate the underside of that term: in order to be chosen, someone else did NOT choose her.   Didion cites as a mantra the anxiety that her daughter felt around the story of her adoption: What if you hadn’t picked up the phone when the hospital called?  What if you had gotten into an accident on the way to get me?  What if…?”  At one point she reunites with her biological family which seems to unnerve her as the two worlds, or two stories, of her life collide.  She decides to cut that story out, although Didion notes that one of her sisters sends flowers at her death.

Stepparents don’t choose their stepchildren, but they do choose how they will relate or not relate.  In this week’s Dear Judy, a stepdaughter asks what choice she should make in attending or not attending her stepfather’s funeral.  A hard choice to make.

“Dear Judy,

My stepfather just died. He was very good to me when I was growing up, and I appreciate that, paid for my high school AND my college (my mother was jobless and also a drunk, to be honest).

Then he divorced my mother and remarried. I couldn’t bring myself to forgive but not because he left my mother. He also left me. I never got a phone call or even a birthday card after they split up.

So now he’s dead, and everyone thinks (even my mother) I should pay my respects, go to the funeral which is in two days’ time and visit the widow.

I am torn. I have great memories and bad ones. Christmases without even a small present, and birthdays with no note or e-mail. And lots of phone calls (from me) that went unanswered.

I can’t decide. Should I go and say how sorry I am?

Lorna”

Judy says its her choice.

Frailty, incarceration, physical disability, chronic illness, sexuality, mental illness, gender….

The list I imagine could go on and on, but earlier today I started brainstorming everything I could think of that competes to define us.

A dear friend reminded me that the today is World Down Syndrome Day.  As a mother to a child living with Down Syndrome she has been wise to write about the importance of using PEOPLE FIRST language.  For example, an individual is not a Down’s baby but a child living with Down Syndrome.  People first.

Living in the age of Facebook Timeline (so and so is eating a burrito right now…so and so is listening to the rain fall right now…), Twitter, and “smart phones” with the capability of recording every in and out of our mundane existence, I wonder how we live people first.  How do our narratives not subsume our identity?  How do we allow our stories to speak the truth without defining our existence?

I attended our monthly clergy gathering yesterday and as a group we visited our local Homeland Security/Disaster Response Center.  A bunker, basically.  As we learned about our parish’s policies and procedures for responding to disaster, natural and otherwise, there was actually a spirit of malaise or boredom in the air.  I became aware of how difficult it is for a professional authority on disaster to speak to a room of people who have experienced disaster first hand.  At least two of the people in the room have lost everything from house to keepsakes to socks in a natural disaster.  Personal experience trumps professional authority.  But is that best practice?  On a related note, despite the fact that I read a lot of memoirs, I am deeply suspicious of how memories tend to be written out of a spirit of prescription.  A description, a window into one reality, has become definitive of the experience, be that one of disaster, caregiving, grieving, motorcycle riding.  On an ironic note, I spend my days listening to and chronicling the definitive stories of loss of unique individuals, but I trust that truth will emerge in the interplay of these stories and not in the small “t” truths expressed in any particular narrative.

We cannot ignore story, but how do we negotiate what power it has over our identity as well as our actions?  Our stories are true and they define us but when does description become constriction?  How are we the stories we tell about ourselves and yet not?

Just finished Joan Didion’s Blue Nights, which is a haunting recollection of surviving the illness and death of her daughter.  There has been some critique of this work, but her musings fall squarely in line with the musings of C.S. Lewis in A Grief Observed.  Her words are raw and seemingly uncensored, and so there can be some discomfort as a detached and yet engaged reader.  She repeats phrases, circles back, teeters on the edge of meaning and existence, and ultimately tells the story that now defines her and yet struggles not to be defined by it. And yet the pain of an existence carrying loss is very hard to ignore.  The last sentence of the book:

“Yet there is no day in life on which I do not see her.”

After my friend Juli was murdered I actively tried to remember who she was without remembering the violent end to her story.  It seemed unjust that the person who violently killed her body kept assaulting her by violently shaping the story we now have to tell of her life.  I knew that I could not change what physically happened to her, but narratively I wanted to redeem her essence from the violence.   I haven’t achieved that yet, but I try.

People first.

The movie Up is one of my favorites.  The story of Carl and Ellie, their dream of marriage, children and reaching Paradise Falls together, and, after Ellie’s death at the beginning of the movie, the ever-present grief tethered to the on-going life journey of Carl.  Carl soon befriends a young Cub Scout, Russell, who is working on his “helping the elderly” badge and grieving the divorce of his parents.  The illustration above comes from the children’s book version of the movie and I stop short every time I see it.  What an apt picture of grief.  We shuffle forward, leaning heavily on our walker, as the shadow of what we have lost, the sheer immensity of what has been lost, looms behind us, tethered to our hearts.  And grief is persistent, notice how Russell gets tied in too.  Grief is powerful and instinctively we should know that journeying with someone as they learn how to live with this new arrangement is in most cases the only way to move forward.

Yesterday’s “Talk of the Nation” on NPR continued the debate spurred by the soon to be released DSM V manual that will potentially remove the “bereavement exclusion” from the diagnosis of massive depressive disorder. Although no checklists were offered, some good insights were made.  I especially appreciated the thoughts of a hospice chaplain who said that he looks for movement.  In grief, the person may feel wretched and have times of despair and paralysis, but movement of some kind happens.  In depression, the person just stops.  There is no end.  One caller talks of how psychotherapy or medication can simply put a bottom on the pit of despair, but never removes the grief.  In the end, they basically concluded that each person will respond to loss and life in unique ways and should be assessed as such.  No surprise really, but I worry about the countless folks who will never seek psychological intervention of any kind, whether from a therapist or pastor or friend, but who will interpret their emotions and thoughts after a death as “crazy.”  Making grief a disease, could potentially create more of a problem than serve the needs of those who would already be seeking psychological intervention anyway.

Carl keeps moving.  He needs a young boy, an evil dirigible pilot, talking dogs, a rare bird, and a house full of helium balloons to do it, but he keeps moving.  May sound crazy but life, and death, can be crazy without being sick.

The above illustration is highlighted in the 1990 book Seasons of Life by John Kotre and Elizabeth Hall. As I read yesterday’s NYTimes Op-ed on fertility implosion by David Brooks my mind kept flashing to this illustration.  I am a visual learner so this illustration helps me understand the changing face of society in the next few decades but I almost wish there were a soundtrack to accompany this picture.

What we cannot hear are the groans of the 45 million individuals aged 70 and above who are most likely chronically ill.  As Phillip Longman pointed out in his November 2010 article on the “graying of America,” our older population may work longer but only if they are healthy, which isn’t likely.

“You might have noticed a lot more middle-age Americans using canes, walkers, and wheelchairs these days. So many of Walmart’s customers are now physically impaired that the giant retailer has replaced many of its shopping carts with electric scooters that allow shoppers to remain seated as they cruise the aisles. Such sights are reflected in statistics showing that, for the first time since such record-keeping began, disability rates are no longer improving among middle-age Americans, but getting worse.

According to a recent Rand Corp. study published in Health Affairs, more than 40 percent of Americans ages 50 to 64 already have difficulties performing ordinary activities of daily life, such as walking a quarter mile or climbing 10 steps without resting — a substantial rise from just 10 years ago. Because of this declining physical fitness among the middle-aged, we can expect the next generation of senior citizens to be much more impaired than the current one.”

Without a soundtrack, you also miss the frantic cries of those 49 and under who whimper, “Please help us, I work full-time, my 80 year old mother lives in Phoenix, my father lives in Philly, and my stepmother lives in a nursing home that I pay for, I have no savings, my house is upside down, and my kids are teenagers.  The only way I can think to help the economy is perhaps get divorced, then our buying of another house and household goods will bolster the economy and we will more likely be eligible for Medicaid when we need long term care, not that we’ll live to be old or that Medicaid will exist when we do….Help.”

Dr. Peter Goodwin died Sunday utilizing the methods allowed in the Death with Dignity Act he championed and fought for in Oregon.  He had been living with brain cancer for some time.

Although I am not a supporter of active euthanasia, I am supportive of informed choice.  He did not make a choice I would make, but there are also countless individuals hooked up to breathing machines and IV’s in ICUs right now who have also made choices I hope not to make as well.  His fight did raise our consciousness of our human responsibility to discuss with medical professionals our life goals and how those goals shape any treatment plan we follow.

I am pondering the thoughts of Barbara Karnes, RN, who wrote the much used 14-page booklet, Gone From My Sight.  In the hospice world this booklet is simply called the “blue book.”  Written in 20-point type, it follows the signs and symptoms to watch for months, weeks, days, and moments before death.  Helpful things to do or say as a caregiver are also offered.  I have read the “blue book” countless times and have used it to train new hospice staff members or volunteers.  Inevitably, someone reads the symptoms in a section and thinks, “Whoa. I think I may be dying.”  That thought reminds me that the signs and symptoms of dying are not really different from the signs and symptoms of living.

Karnes writes in The Final Act of Living:

“There is really no such action as dying.  It is a misnomer.  We use it to make reference to a process and a time period, but really there is no such thing.  We are either alive or dead.  The space in between is called living….Life is a terminal illness.  We are “dying” all the time…The only difference between someone in a healthy body and someone in an unhealthy body is the person in the unhealthy body is reminded every day they are not going to live forever.  We, on the other hand, live under the illusion that we, because we are in a healthy body, are going to live forever.”

It will be interesting to hear if any good insights arise out this hearing today.  It sounds as though California’s statistics are fairly representative of the rest of the country…

“An estimated one in four California families is currently involved in caring for a loved one with a disability. Caring for a family member who has dementia or multiple chronic health conditions is complex and takes a heavy toll on the caregivers. According to a recent brief by the UCLA Center for Health Policy Research, more than 1 million caregivers report moderate or serious distress levels. Sixty-seven percent of caregivers work full- or part-time jobs and California caregivers who live with their patients spend an average of 36 hours per week providing care. The economic value of the unpaid care provided totals in the billions.”

Good recap article in today’s Slate.com.  They refer to the Slate survey on grief that was concluded last spring which is interesting reading.

As I read the on-going discussions I was reminded of a piece I read recently from a psychotherapist, Bobbi Emel, who reflects on resiliency and old age.  Whenever we lose a game, an ability, or a loved one, we face a time of weakness and vulnerability where we must learn to cope and re-group.  Her points are thoughtful:

“Like many of us, resilient old people utilize flexibility and adaptation skills to bounce back from difficulty. Except they seem to use more of it because of the consistent nature of change in their lives as they age. They seem to be champions at letting go of previous physical and mental abilities and, in so doing, continually redefine themselves and adapt to what is a “new normal” for them.

Here are four other components of resilience among the elderly that we can both emulate and help those less-resilient seniors to achieve.

1. A sense of belonging.  While many senior communities promote activities, it appears that this is not enough. Old people, like younger ones, desire to be a part of something, to feel like they belong. Service providers (including caregivers) therefore may consider not only providing activities, but also creating communities involving groups of people with common interests and goals.

2.Creating meaning through personal memories and life reviews. Elderly people who pursue personal growth as they age tend to be more resilient in the face of changes. Creating meaning and purpose around the events in one’s life is an effective way to promote growth and, for older people, this can be accomplished through the use of life reviews. A facilitator assists the person to recall their memories and discuss the meaning in events that have occurred throughout her life.

3. Dependence. While dependence is not valued in younger years, resilient seniors are able to re-value dependence as a way for them to adapt to their changing circumstances. It is helpful when they can see that whatever they are still able to offer is a good exchange for depending on others for certain assistance. Service providers may want to emphasize this quid pro quo concept.

4. Openness. This refers to the ability to change and adapt – to be open to new ideas, values, and experiences. Helping seniors to reframe loss and change as a means of redefining oneself may assist in generating more openness. Service providers can also help by acknowledging the openness they perceive in the people they serve.”

Her points on resiliency in old age resonated greatly with grief work in general.  So, I started thinking about illness.  It seems to me that when I self identify as “ill” I want a treatment plan and medicine that will directly address the source of my problem, alleviate the symptoms of said source problem and help me return to my former, healthy self as quickly as possible.  Part of what is so painful in grief and in aging in general is that the former self is gone.  You may hear the echoes of who you once were and perhaps you can imagine the phantom story of who you might have been if you hadn’t fallen last Tuesday or gotten pneumonia last month or if mom were still alive, but we grieve what is gone.  Sadly, a pill may touch the symptoms of loss but the source issue will always persist.

The title of this post is also the title of a recent report published by The American Sociological Association that studied survivors of heart surgery:

“Married adults who undergo heart surgery are more than three times as likely as single people who have the same surgery to survive the next three months, a new study finds…

The major study involved more than 500 patients undergoing either emergency or elective coronary bypass surgery. All of the study subjects were interviewed prior to surgery. Data on survival status of the patients were obtained from the National Death Index…

Patients who survived more than three months were approximately 70 percent more likely to die during the next five years if they were single…

When it comes to healing hearts, marriage may be powerful medicine, but it’s in increasingly short supply,Idler says, which does not bode well for aging baby boomers. Barely half of U.S. adults are currently married, the lowest percentage ever, according to the Pew Research Center.”

Read more…

Our Baton Rouge paper reprinted a recent article pondering the ethical, moral and practical implications of marriage vows in the face of a spouse altering event came out yesterday.  The story begins with Rev. Weeks who is currently caring for his wife of 56 years who suffers with dementia.  He explains his decision to stay by her side and find some way to redefine their love by talking of vows:

“I made a vow,” said an emotional Weeks.  “For better or worse, in sickness and health.  She has stood by me in mission work, in the pastorate.  Why can’t I stand by her now?”

The article goes on to review the recent movie The Vow which traces the real life story of a wife who cannot remember her husband, let alone that she is married, after a traumatic car accident.  The author of the book, who is the husband, says that many people counseled him to divorce his wife, in part, to help with medical expenses.  He did not do that and in good rom/com fashion they renewed their marriage vows several years after the accident.  But many folks presume that divorce after a traumatic, spouse altering event is common.  A recent, highly cited study from the Traumatic Brain Injury Model System at Virginia Commonwealth University conducted in 2007 found that divorce is not as common after brain injury as was once presumed.

 “The study included 120 people with mild, moderate and severe brain injuries who were married at the time of their injury.  Their average age was 41 and it had been 3 to 8 years since their injury.  The study found that 3 out of 4 or 90 out of 120 survivors were still married.  This starkly contrasts with the common belief that divorce is widespread among couples after brain injury. Additional findings from the researchers are:

• The overall rate of breakdown among couples was 25% (17% of survivors were divorced; 8% separated).
• There was no difference in marital breakdown rates between male and female survivors.
• The more serious the injury, the greater the likelihood of divorce.
• Age mattered; survivors who were older when injured were much more likely to stay married.
• Length of marriage mattered; those who had been married for more years before the injury were more likely to stay married after the injury.”

Darlene Fozard Weaver, an ethicist from Villanova University, closes the article with some good advice for anyone in a committed relationship:

“Keeping faith in a marriage is always this ongoing process of both remembering what brought you together in the first place but also responding to and embracing the person who’s here before you now.”

I have to believe that anyone who has made vows to a beloved believes that the answer to “Will you still love me tomorrow?” is a resounding YES.

I perused today’s “Parade” magazine over coffee because the main article was titled, “Your Body, Explained.”  Did you know that it is impossible to tickle yourself, your fingernails grow faster than your toenails, and that the reason people ache more as they grow older tends to be attributed to arthritis: “when cartilage—the connective tissue that cushions our joints—begins to break down.”  You should increase your activity level to combat the symptoms of arthritis.  Fascinating.

As I was learning away, an ad caught my eye. In the center of the page are two, large flip cell phones with the heading “Finally, a cell phone that’s…a phone!”  The ad continues with a congenial narrative of an “older” person who finally caves into getting a cell phone in order to keep their kids happy and talk to their grandkids.  This fictional grandparent attests:

“Sometimes I think the people who designed this phone and the rate plans (it’s super cheap, $3.75 per month) had me in mind.  The phone easily fits in my pocket…the display is large and back lit, so I can easily see who is calling….”

In fact, the keyboard consists of large numbers and two buttons titled “yes” and “no.”  I nodded my head and thought, this is a brilliant marketing plan.  Old folks don’t want a phone that plays movies, makes you coffee, and performs a dance, they want a phone that is a phone.

So, my eyes scanned to the bottom of the page to see the name of the company: First Street: for Boomers and Beyond.  WHOA!  Boomers!?!?!  Wow.  The Boomers I know would scoff hardcore at a back lit flip phone.  In fact, I think my parents may have even given their grandkids their old flip phones to play with as toys…Hmmmm….Guess we’re already getting ready for the “silver tsunami.”    I don’t think flip phones are going to cut it though.

According to recent print media, including a call-in show with Pat Robertson, one might think that getting married is a great idea, as long as you don’t get sick or debilitated.  As heart-breaking as the stories are, I begin to wonder how these natural changes that occur as one ages differs from any change we undergo, be that a weight loss, a new interest, retirement, a geographical move.  What is the purpose of a vow if it is ultimately conditional?

I’ve posted some of these thoughts here, but repackaged them for the “Good News” page at HuffPost.  I think its a fascinating that they have a whole page devoted to good news.

A good, brief primer into the major healthcare expense that Medicare does not cover from yesterday’s LATimes.

“Medicare was designed to pay for acute illnesses and medical treatments. It won’t pay for someone to feed you or help you bathe or dress. Unless you have someone to care for you, you go into a nursing home, at about $70,000 a year, and pay for it yourself. Only when you spend all but your last few thousand do you qualify for Medicaid (known as Medi-Cal in California), which will then pay the nursing home bills.

The rules are incredibly complex; one consumer advocacy group has a 12-page flowchart for lawyers to use to help their clients qualify for help. For example, you can give away money to your spouse or children to become poor enough to go on Medicaid, but you have to get rid of it five years before you enter a nursing home.

About 1,384,000 people are living in U.S. nursing homes, down from 1,456,000 a decade ago. Old people are somewhat healthier now, and more are staying in the community. The average nursing home resident is a woman in her late 80s who needs help with four of the six basic activities of daily living: using the toilet, bathing, dressing, eating, getting in and out of bed, and moving around the house.”

An apt description of the current situation but unfortunately, no analysis or suggestions for how to move forward or improve the system are offered…