Tuesday, January 7, 2014

Waiting for Disaster

So much has been written about the stages of grief over the years.  It’s interesting to me, and I have found some comfort reading about generic Grief because the information sometimes serves at times to let me know what may be coming down the pike emotionally for me and at other times to reassure me that what I am feeling/thinking/doing is Normal (whatever Normal is). 

One of the many things that I did not know about before we were in the thick of things ourselves after my dad’s illness was Anticipatory Grief.  Somewhat ironically, I actually learned about it after we’d been launched into full-blown Grief after my dad’s death, but even in that context I was able to recognize the accuracy of what I was reading about it in terms of what my family went through while my dad was sick.

Something related to Grief that I haven’t heard anything about, though, is the watchdog mentality of a person who is caring for someone with a catastrophic illness, an emotional state that can even extend into the time period after the death of their loved one.  It’s an odd habit that can easily find footing, morphing into almost an addiction of sorts, the waiting for something bad to happen, the unwelcome sense of dread and fear, the impending sense of doom. That Waiting for Disaster kind of thinking makes sense when a person is caring for someone who is critically ill; what doesn’t add up, though, is when that feeling lasts even when the sick person isn’t around to need help anymore.

I don't think there's a term for that extended expectation of catastrophe; perhaps Foredoom is a good way to label it. From talking to so many people who have gone through similar situations like my family did after my dad's diagnosis, I can tell you that it's real - and that it's not that uncommon.

At times, when that Foredoom takes hold, it can feel almost shocking when things go well, and what’s even stranger than that is the way it feels disconcerting, maybe even reckless, to try to drop the Worst-Case Scenario kind of thinking, the sleeping with one eye open, the constant monitoring of the cell phone just in case someone needs me for something critical.  The thing about it that hooks us, I think, while we are caregivers in a critical situation, is the feeling of being needed, perhaps even in a life-or-death type of way, and of feeling like we have some control over things that without us, we imagine, would go spinning out of control. 

When that caregiver role is gone for us, it’s a loss that adds to the chaos, the directionlessness, and the grief of the loss of our loved one.  The sting of the realization that we did our best and still weren’t able to FIX things weighs so heavily on us and makes us wonder “What next?”  It makes us question whom we are, what we are supposed to be doing, and how we are going to cope with the changes that have been forced upon us.

Sometimes, I’m learning, that sense of vigilance remains, long after it makes sense.  Maybe we've become so accustomed to the noise that we don't know how to cope with the quiet. Maybe it’s our psyche’s way of punishing ourselves for not being able to save the person we loved - or for living still when he isn’t.  Maybe it’s a result of clinging on to the idea that we have any control over anything in life, even long after we should have realized how crazy and misdirected that thought is.  It’s like being “on call” was the thing that gave us direction and meaning, and, now that that’s gone, those of us still here are left adrift, unable to relax or unwind but so, so exhausted and confused and disoriented.

Sunday, January 5, 2014

A Changed Form

It’s difficult to know what to do or say or even think on a day like today; how does one mark a milestone that they wish didn’t have to be?

Today marks three years since my dad went on ahead.  Three years – that seems so unbelievable.  There has been so much pain, and mourning, and missing him in that time.  There has been a lot of change, too, some for the better and some, well, probably not so much. 

Here's what I am working on at this point: living - and thinking - so as not to allow cancer or sadness or grief to rob me or my family of anything more.  Because what I have learned in this past year is that it's so important to see the good in the moments, even when the grief makes things look blurry. What I have been working on since I sat in this same place a year ago is finding ways to make sure I don't miss the good, the happy, the important moments, even as much as I miss my dad.

It would be so easy to fall into the habit of viewing things as a misfortune, an unfairness, or even a disaster; one thing I've learned for sure since my dad died is that getting a foothold on perspective doesn't always come naturally - it often takes work and effort.  For me, at this point, there are times when the grief is still really thick, but I can tell that it has changed form. I think so often that Dad would be shocked and probably even more disappointed than touched that there are those of us who are still so much in mourning; I know he would want those of us he loved and cared for to be happy. That thought pushes me to try to do better, to be better, to do my best, just as my dad pushed me to do so when he was physically on this earth.

And so, through effort and dedication, I continue to be transformed as time marches on, and so does my grief. Instead of leading me as it has, the grief mostly seems to accompany me these days, still present but in a changed form.  I find myself sometimes having to reach to feel him around me lately, which brings about a new type of fear and a new form of heartbreak.  I am able to say that I am happy and grateful in the midst of it all, though, even though when the tears and anger come as they still sometimes do, I miss Life for him - and I miss him more than I ever thought possible.