Sunday, June 12, 2011

Anticipatory Grief

Another thing I have learned about in reading about grief is anticipatory grief, which is a reaction that occurs before an impending loss.  The term was coined by the American psychiatrist Erich Lindemann during World War II as he described a situation in which a soldier had returned home after being away a long time to find that his wife was no longer in love with him and wanted a divorce.  According to Lindemann, the wife had mourned her husband's absence and had detached herself from him, in anticipation of the possibility that he would not return.   In the way that the term is used today, though, most of the time the family and friends of the person who is terminally ill do not realize they are already grieving, and it is certainly not intentional.  At the same time they are grieving in anticipation of the loss (death) of that person and how that will change their lives forever, they may be, in fact, grieving both the loss of the person as they knew them (healthy and independent), their relationship with that person (instead of patient-caregiver), and their lifestyle from before the person got sick.  Even though we didn’t know about anticipatory grief at the time (and even if we had known about it, we would have been way too busy to stop and think about how it was affecting us), I think this “dual-grieving” is what my family and I were doing during the ten weeks my dad was battling cancer.

Some of the literature says that when anticipatory grief is experienced by a loved one of someone who is terminally ill (or by the terminally ill person himself), the five stages of grief described by Kubler-Ross - denial, bargaining, depression, anger, and acceptance - can often be observed.  Anxiety, dread, guilt, helplessness, hopelessness, and feeling overwhelmed are also common. While it may prompt attempts at closure at the loss approaches, it does not soften the blow of or shorten/lessen the grief experienced after the death.   Some studies have shown that, while post-death grief lessens over time, anticipatory grief almost always increases over time as the death nears, as sadness, stress, and fear increase as well and the weight of caregiving is paired with the realization that the end is near.

When I first read about anticipatory grief after my dad died, the word “anticipatory” hit me the wrong way.  It seemed to imply that we knew he would not survive when actually, for nine of the ten weeks, we didn’t.  Dad’s case, and the way we had to care for him because of the way he was affected, were very different from cases when the doctor tells the person that he or she is terminally ill and then that person has a limited amount of time to make decision, do what he wants to do, and have lots of heart-to-heart discussions with loved ones.  Because the cancer was in his brain and because of the effects of the tumor, the seizures when he was first diagnosed, the medications he took, and the surgical scarring in his brain, we were not afforded a chance to do these things, which, in many ways, seemed to make things harder to deal with and to cause the grief fan out like a river tributary, both while Dad was sick and since his death.

One of the things that held both good and bad while Dad was sick was the fact that he slept very little (sometimes none in a 24-hour period), which we think was mostly due to the massive amounts of steroids he was prescribed in attempt to manage swelling around the tumor site.  The medication, the area of the brain where the tumor was located, and the anxiety he was feeling resulted in a constant stream of talking from Dad around the clock.  It was exhausting.  But, at the same time, whoever was with him at night (we took shifts) got the privilege of having long, in-depth discussions with him, some of which were very thought-provoking and touching.  I remember so many of those late-night talks with him, in the hospital, in the rehab center, and at my parents’ house.  He needed that contact at the time, and so did I.  Even though many of those nights I was so tired I could hardly keep my eyes open, our conversations from that time are something I will always treasure.

From the time that Dad was diagnosed on Oct. 23, he had to adapt quickly to changes that would have brought an average man to his knees, possibly quite literally.  Somehow, though, he took things in stride, which helped us to do the same to a certain extent.  The only time that I remember Dad asking why or how he got cancer, it was in a completely non-“why me” manner.  It was investigative, not self-pitying; he asked because he really wanted to know if there was a chance that anything he had ever done caused him to get sick.  Looking back at how my family dealt with the losses and hardships that happened during his illness, I can see now that some heavy-duty “bargaining” was going on; everything about everything we did during that time was a demonstration of how badly we wanted him to be with us, in any shape.  We were sad and angry and we missed the “pre-diagnosis him,” but we were happy and proud and so appreciative to have him as he was after Oct. 23, too, because we realized it was better than the alternative.  It was so very impressive to see a man who was fully prepared to compete in an Ironman triathlon (that’s a 2.4 mile-long swim, a 112 mile-long bike ride, and a 26.2 mile-long run, back-to-back) be driven to using a walker or a wheelchair literally overnight and never complain.  He got frustrated, he didn’t like it, but he didn’t complain.  After his diagnosis, he wasn’t allowed to drive a car, to swim, or even to be left without an adult in the house, because of the potential for seizures.  He lost his right to privacy, his ability to participate in almost all of the things he enjoyed, and his independence, but he forged ahead.  That’s courage, tenacity, and toughness on a level most of us cannot even imagine, and it’s so humbling.  For all of the sacrifices that my siblings, my mom, and I made to take care of Dad, he made so many more in order to stay around to be with us for as long as he possibly could.  Maybe seeing that is “acceptance,” I’m not sure, but one thing I do know for sure is that it’s something I will always appreciate and admire about Dad.

I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It's when you know you're licked before you begin but you begin anyway and you see it through no matter what. -- HARPER LEE, To Kill a Mockingbird

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