Sunday, April 21, 2013

Orthopedics for a Grief Walk

After my husband Koz died, I went to see a very wise and dear psychological counselor. Dr. Bob told me he was shocked and very very sorry. But there was nothing he or psychology could do to help. As the gospel song goes, I would have to walk that lonesome valley by myself.
Michael "Koz" Kozlowski

Now, 13 years later, I understand why he said that, and am wondering if it was actually true.

Inspiring my thoughts is an article in the Journal of the American Medical Association about changes in the upcoming version of the DSM -- Diagnostic and Statistical Manual of Mental Disorders -- aka the Bible of psychiatric diagnosis. Writing in JAMA's Online First publication, Drs. David J. Kupfer, Emily A. Kuhl, and Darrel A. Regier summarize the most significant changes in the new DSM-5, compared to its predecessor, DSM-IV.

This is one of the major changes:
Removal of bereavement exclusion: In DSM-IV, individuals meeting criteria for a major depressive episode were excluded from a diagnosis of major depressive disorder if symptoms occurred within 2 months of the death of a loved one. However, the implication that bereavement ends in only 2 months or that major depression and bereavement cannot co-occur appears false. Depression related to bereavement can share many of the same symptoms as nonbereavement-related depression and can accordingly respond to treatment.
Similarly, major depression can share features with other forms of significant loss or stress, including job loss and natural disasters, and may be in need of intervention. To prevent the denial of diagnosis (and care) of individuals who meet full criteria for a major depressive disorder, even during bereavement or other significant loss, DSM-5 now permits such a diagnosis ...
I find it (painfully) funny that science is just coming around to these insights, and I'm pretty sure that my friends in The Group No One Ever Wants to Join would agree. This would be "Widowed Young," an online support group for people widowed at a young age. I stumbled across WY a few months after Koz died (and actually first "met" my Dear Husband Dave through this group when he joined after his wife, Pat, died.) Many folks from the original WY are still in touch, though the group has now migrated to Facebook (which didn't exist when WY started up).

My exchanges with people in this group, and indirectly with their wider circles of friends, have helped me to see several things about bereavement that I wouldn't have understood by observing only my own grief and that of close relatives (like my Dad).

First, and foremost, there are almost as many ways or styles of grieving as there are people. There's no right or wrong way -- and what helps one person might be emphatically UNhelpful for another. For this reason, it's important to be gentle with and listen to the bereaved -- not to force them into what you think is the "right way to grieve."

Second, there are definitely things that are very broadly UNhelpful that others can say or do in interacting with a bereaved person. And there are a few tricks and observations that our band of widows and widowers came upon that seem to be broadly helpful for dealing with grief -- and at worst innocuous.

In passing, I'll mention three of our group's helpful tricks and observations. I'm not sure which of our members deserves credit for first suggesting these, but I will mention here the ever-wise, eloquent, and helpful "Glo" -- one Gloria Comstock.

1. The Five-Minute Rule: When you think you can't possible stand the agony any longer, impose The 5-Minute Rule, which says you will just try to get through the next five minutes. If you can't handle five minutes, impose the 1-Minute Rule. Repeat as necessary.
2. Take care of yourself: Many people come to bereavement after years focused on caring for others, including the late spouse. The death can mean that even more duties of care fall upon the shoulders of the bereaved. It's pretty common to neglect oneself in these circumstances -- to have forgotten how to care for yourself or to feel that it's somehow not right to do so. But it is right. Have a warm bath -- with nice-smelling bath salts, then go to sleep in a freshly made bed complete with fragrant sheets. Treat yourself to a walk on a beautiful day. Permit yourself some time alone to feel exactly the way you feel. Buy that electric blanket you need to keep warm without your spouse beside you at night. If you have to justify the "luxury" of treating yourself nicely, remember what the airline stewards say in their preflight spiel: Always put on your own oxygen mask before attempting to assist others.
3. It does get better, but not necessarily quickly, consistently, or predictably: Someone in our group brought us the concept of the "Grief 'Gator" -- a vicious beast always lurking out there, ready to pop up unpredictably to chew the ass of the bereaved. He's a fairly constant companion at first, but then usually leaves you -- wanders away for longer and longer periods of time (no doubt in search of fresh meat). An amazing variety of cues can bring the Grief 'Gator scrambling back in an instant: Hearing that song they played at your wedding; a birthday; a major milestone for your child; or, in my case, being told it was impossible to recover the contacts on Koz's broken cell phone. This provoked a total meltdown in the phone company store. There was a long line of other customers who had to witness my tears. I still feel sorry for the poor person who was waiting on me.

Fortunately, at some point you realize the Grief 'Gator has been away for one entire day ... a week .... a month. And when he visits he doesn't chomp as hard, or at least you know you'll get through this latest assault. And of course you can always vent by telling your friends in WY -- they'll understand, and that helps.

Back to the DSM-IV and its successor: The blinding truth that has struck the committee drafting DSM-5 is as compassionate as it is self-serving. Disorders that are approved for treatment by the American Psychiatric Association -- and thus have a DSM code -- are likely to be covered by U.S. insurance providers (to whatever extent your policy happens to include psychiatric problems). Including  bereavement-associated depression as a DSM disorder means that some widows and widowers may be able to get some financial help covering the cost of psychological treatment of depression stemming from bereavement.

Psychiatry-skeptics (and I now live in a country full of them, but that's a whole 'nother story) are probably wondering if this is actually compassionate for the bereaved or just an additional income-stream for psychological service providers. After all--for the past decades the DSM-IV and my brilliant Dr. Bob said the major depression associated with grief was not a treatable disorder. There was nothing they could do to help.

(I should note that it is possible that even back then, Dr. Bob, who knew me well, was only saying my depression would not benefit from extended therapy. He might have found otherwise for someone less resilient or more vulnerable to unremitting depression.)

I expect the change in the DSM, superimposed on individual variation in styles of grief, will bring out the best and worst psychiatry has to offer. I'm sure there will be mental health providers who feel compelled to intervene in and capitalize on garden-variety, "healthy" grieving.  I'm not actually sure what "healthy grieving" means. But I do know that many folks living reasonably happy lives today--but with a major bereavement in their past -- have gotten to where they are without recourse to professional help. I'm sure "medicalizing" major depression associated with grief will mean some providers will throw drugs at a perceived problem when drugs aren't proven to be very helpful, compared to other, slower forms of treatment that insurance doesn't fully cover.

But I am also hopeful that the change in the DSM will encourage serious study of the process of grief. Exactly what is the spectrum of experiences and behaviors that constitute "healthy grief?" I am very sure I have seen in some members of the WY group (and their extended circles of friends and family) thoughts and actions that were not conducive to healing. Heck,  I  had many setbacks and false steps... and I was lucky--sometimes thanks to my friends on WY-- to avoid pitfalls that snared other widows.

Perhaps psychological study can make a science of the sort of collective wisdom we've derived informally on WY as we tried to help one another. Are there any shortcuts through that lonesome valley? Are particular ways of grieving more helpful to certain personality types? Or is it a cultural and generational thing? Do prior major life experiences prime us for more or less healthy grief? What is the time-course of grief and why and how does it vary between people? Are there measures that help at one point during bereavement, but hold a person back later on? Who is most likely to benefit from professional help? What sort of help should this be?

The APA's suggestion that treatment of depression associated with other major losses in life -- losing a job, marriage, or pregnancy, for example -- could inform the understanding of major depression associated with bereavement (and vice-versa) is also worth studying. I'm pretty sure some of my fellow WY-ers who have experienced multiple losses would have some profound insights -- and maybe a few choice words on the subject. (No, losing your pet does NOT feel the same as having your spouse die.)

I see myself standing on some middle ground with respect to psychology -- largely a supporter, but one who believes the science is maturing from its infancy. Forty years ago, as I was trying to come to terms with serious life-threatening illness in a loved one, I went to see a trainee-shrink at the University of Michigan's student health services. She recommended I read Elisabeth Kubler-Ross's book, On Death and Dying. I now see, even from a cursory Wikipedia check, that Kubler-Ross's Five Stages of Grief and the research that gave rise to her famous hypothesis have been roundly criticized.

Thirteen years ago psychology officially had no help for the depressed bereaved. But now? As of this minute, Pubmed lists 12,132 research papers on bereavement and 8,705 on grief. There are even 381 papers on Grief/Bereavement and Mindfulness. I would hope that emerging from somewhere amidst that research is useful knowledge for dealing with all sorts of grief and all sorts of losses.

The emerging science probably already goes beyond DSM-5's conversion with respect to depression following bereavement. One of the growth spurts in psychology springs from the emerging field of "positive psychology" --practices associated a happy, healthy, satisfying life. In contrast, traditional psychiatry, from whence comes the DSM, is rooted in identification and treatment of mental disorders.

Historians of science might identify other "fathers" of positive psychology. But I'd say the forebear of my own leanings toward positive psychology was M. Scott Peck,  who wrote his most famous book, The Road Less Travelled in 1978 -- 9 years after Kubler-Ross's Five Stages. Wikipedia describes Peck's book as "a description of the attributes that make for a fulfilled human being, based largely on his experiences as a psychiatrist and a person."

Because Peck trained as a traditional psychiatrist, and because his work, like Kubler-Ross's, comes from psychiatry's formative years, Peck's methods have the same problems as hers. They are scientifically dubious and rest on hypotheses and models that in large part haven't been tested or proven. But somehow, since I first read The Road Less Travelled -- probably in 1997 or 1998-- Peck's work has rung true for me, unlike Kubler-Ross's, which never did.

Maybe because he's rooted in gloomy old pathology-based psychiatry, Peck is not as uplifting somehow as recent authors of positive psychology. In fact, his book begins with a chapter headed "PROBLEMS AND PAIN" and the Eeyore-ish first line: "Life is difficult." He goes on to say, "What makes life difficult is that the process of confronting and solving problems is a painful one." Among those challenges is confronting grief. Peck continues:
"Yet it is in this whole process of meeting and solving problems that life has its meaning... Problems call forth our courage and our wisdom; indeed they create our courage and our wisdom. It is only because of problems that we grow mentally and spiritually."
I think many of my friends in WY would agree that, if we'd had any choice, we would have preferred NOT to have experienced the death of a spouse--whatever beneficial growth might have resulted. My hope is that a rigorously research-based understanding of "healthy bereavement" will someday help those who grieve obtain what comfort, courage, and wisdom there is to be found in mourning -- as quickly and painlessly as possible.

3 comments:

  1. I have not lost a spouse, but I lost a son who was only five years old under horrific circumstances. That was in 1982 and I, fortunately, did in fact find psychologists who provided grief couseling. (I have no idea how they coded their bills.) Of course it didn't reduce the grief, but I did learn to live with it.

    One thing that I did in the early years (say the first decade or so) was to become acquainted with other people's grief. I went to a bereaved parents group. I talked to people I knew who had lost youg children, including both of my grandmothers. Perhaps weirdly, I spent time with a cousin who was into genealogy, looking over pictures and telling each other family stories about how people died and what of, trying to understand the pattern of life and death.

    And I read books about others' experiences. I remember "Angels Unaware," by Dale Rogers about the loss of two of her and Roy's children. I believe it was there that I read a long-cherished piece of learning: grief never leaves you where it finds you. Kind of similar to Peck's commentary. I suppose everyone finds an articulation of comfort or understanding that is meaningful, and that is mine. Taking that thought in hand, I have resolved that if there is to be movement, I want it to be positive and always to honor a small courageous person. Just having a plan, even that simple, has helped these 30+ years.

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  2. Thanks, Sharla. I knew a bit about "where grief found you" from things Koz told me, but I didn't know much about where it left you or how you traversed the distance between those points. Hugs and cheers!

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  3. After posting a version of this blog on facebook -- actually it was the seed of the idea for this blog entry--I had the comments below from my dear sister-in-law, Lynne Kozlowski. Her husband, Koz's beloved older brother John, died just a few years after Koz. Lynne wrote:

    "I too have travelled that road......I was diagnosed with post traumatic stress disorder and then with depression after John died. My therapist was wonderful in helping me to see the "normalcy" of my reactions and grieving process in conjunction with the diagnoses. AND she didn't laugh out loud at me when at my first session I expressed puzzlement that I was still grieving 6 weeks after my husband of nearly 30 years had died suddenly and unexpectedly next to me in bed. I had read some time ago that the DSM was revising it's approach to loss and bereavement.

    "The best comments, books, essays, advice came from other people who had experienced loss and survived. The worst comments were from well meaning people who had no idea how painful their words were: for example... time heals all wounds; God took him home; it's all part of God's plan; you're still young.....perhaps you will find someone else; etc etc etcetera! What a journey for sure.

    "Ya know, Celia....I really need to get my ass to England for a visit.....we have SO much to share and talk about!"

    And YES, Lynne we DO have a lot to share, talk about, and catch up on! Our cozy barn conversion awaits your visit. But if you can't make it before we hit Boston at the end of August, we'll see you then! Hugs and cheers!

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