The Wilderness of Grief

On this day four years ago, I watched one of the best people I have known take his very last breath.  I held my dad’s hand, kissed his cheek, and with tears rolling down my face told him I love him for the very last time.  It was a day at the end of a lot of days that I will never forget, and it was the beginning of an endeavor of a difficulty level that I could not have imagined – and one for which I could never have adequately prepared.

 I’m not sure if I knew it when I spoke the last words I would ever have the chance to say to him, but I told my dad something that day that wasn’t the truth: I told him that I would be ok without him.  I had to say it; I knew that I needed to let him go on ahead with as much peace as I could offer him after all that he had been through.  But, even four years later … I can’t honestly say that I’m ok, at least not as I used to think of as ok.  I’m different, in many ways, and I guess there is some ok in that.  The anguish of missing him every day and of knowing that he wanted to stay here on this earth with us so damn bad, along with the things that my family and I learned during his illness have transformed me forever, for sure.

Grieving in our culture is often very hard: people seem to expect – and to want – those who are in mourning to be ok.  Messages like “Be strong!” and “He would want you to be happy” are the standard, and that is one of the things that makes grieving feel like swimming upstream. 

I remember talking to a friend whose dad had died many years before not long after my dad died.  She was still really grieving, she told me, and I was stunned.  How conveniently naïve I was, about grief and about a lot of things, before the lines were blurred.  Sometimes, when I think about my dad’s going on ahead, about not having him with us here on this earth anymore, my breath catches in my throat and I think, "I am not ready for this."  I know now that, like my friend and like so many others who have walked this path, I will never be really done grieving … and I think that’s the ok that I am left with.

                                                        I miss you, Dad//

A Call for Awareness: A New Goal

As I have shared before on this blog, I am very passionate about my work as an occupational therapist, and for many years I have considered myself an advocate for individuals with disabilities.  However, it wasn’t until I became a caregiver of a person with a catastrophic illness that I really “got it.”  It’s a club no one really wants to join, but at some point many of us will, and, through my experience in helping to take care of my dad as he went through treatment for the brain cancer that took his life a short time later, I learned things as a health care provider, as a daughter, and as a person that I likely wouldn’t have otherwise.  

In today’s health care system, the bottom line is so often seen as the dollar: what's stressed is funding and reimbursement instead of quality patient care.  As a medical professional, I know that it’s easy to get caught up in productivity quotas, documentation, and administrative spreadsheets and paperwork.  But very few of those of us, if any, got into this field for those reasons; by and large, we became health care providers to try to help people.  Somewhere along the way, though, in many cases, our priorities are shifted.  Our focus is changed: we go from looking towards the horizon to staring at the road just in front of us as we work to get through the day-to-day procedures of our jobs.

Like a lot of times when dramatic realizations occur, something happened in my life that caused me to rethink my focus, to shift my priorities, to change my perspective.  Through telling the story of the health care that was provided to my dad during his ten-week long battle with brain cancer, I want to challenge the way other health care providers think about their patients, in hopes that that shift in perspective will help them to provide better care to their patients, especially those who are facing life-altering illness or injury.  I have decided to set a goal of writing a book, one that will come from parts of the story as it has already been told through this blog and from added accounts of what happened during the time of my dad's illness.  My goal is to tell the story piece by piece on this blog so that it can be shared in book format with people who are involved in the treatment and care of individuals with life-changing illness or injury.  

Through this project, I want to bring awareness to other health care providers and rehab professionals about the importance of recognizing that every patient has a story.  I hope to encourage those in the medical field to remember to look towards the horizon as they care for each patient, to think outside of the box, to see things through the patient's eyes, to understand that what they think is important for a patient's recovery may not be the same as the priorities of the patient, and to realize that supporting a patient's family is part of every intervention.  I want to urge rehab professional and others in the health care field to do their part to assist families in accessing services for both themselves and for the patient so that adequate support will be available even after discharge.  I want to remind health care providers that they are in a position to share their expertise in ways that have meaning to the patient, regardless of changes in function or of life expectancy.  I want to emphasize the fact that compassion is a part of every good treatment plan.  I want to tell this story with a goal of inciting a shift in perspective by underscoring the importance of patient-centered intervention and care of the patient as a whole, not just in medical professionals but in everyone who may one day be involved in the care of someone with a life-changing illness or injury.

Stay tuned ...

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.

Well Worth the Effort

Many mornings when I get up before the sun rises to see my daughter off to high school it reminds me of how I used to drag myself out of bed in the early morning on school days when I was her age.  I got up then, though, not because my school started really early like hers does, but because I had to get in a run before school when I was in the midst of a training season for track or cross-country. 

Early morning running with my dad

I’ve never been a morning person.  On most days, I get up because I have to, not because I want to at that particular time, and, truth be told, I hated getting up for those early morning runs.  It was always dark, and the temperature always seemed to be cooler than I preferred, even in the late spring or early fall months.  I was always a little stiff and often so tired at that time of day that I could hardly keep my eyes open as I ran down the street, guided by the streetlights, counting freshly thrown rolled-up newspapers in the driveways to pass the time as I went along.  Many afternoons or evenings when I ran, often for the second time in the same day, I did it because I loved it, but, on those mornings, I did it because my dad expected me to put in the extra effort.  It was part of the plan he had written out for me each week, the training program that he said would pay off at the next race, which, for me, was always just around the corner.  I loved the racing part, too, but not those morning runs – those I just struggled through.

I remember on so many occasions looking up as I crossed the finish line at the end of a race so that I could see the look on my dad’s face.  I judged my performance in each event by the look I saw in my dad’s eyes at the end of the race; in an instant, I could tell what he was thinking – and many times it was this: it was well worth the effort. 

I knew it then, and I know it even more now: there is such privilege that comes with knowing someone well enough to know what he or she is thinking, a secret code of which it is an honor to have an understanding.  I often think back to the few episodes of perhaps oddly placed confidence that I had when I was helping my dad during the weeks of his illness. One instance in particular occurred on the day my dad went from the hospital to a rehab facility across town. The hospital staff wanted to have him transported by ambulance, but I felt it was essential to his mental state not to have to ride in another ambulance at that juncture in his recovery. Somehow, from out of necessity I guess, I found the confidence to tell the nurses that I was certain I could safely help him get from a wheelchair to the car at the hospital and then from the car to the wheelchair and inside the rehab facility.  "I have no doubt I can keep him safe," I remember saying to a couple of nurses in the hallway outside his hospital room.  I felt like they were looking at me doubtfully, but they said ok and that was that.  I am trained in assisting with patient transfers like that, but I work with children, not adults.  I felt sure though; I knew I would do anything to help my dad, and I was confident that together our effort would pay off.

Doing whatever it takes, with both of us wearing the same expression of determination

There were a few more things that happened like that while he was sick, with my certainty coming from almost out of the blue, each time tied to the fact that I was completely determined to do whatever it took to help take care of my dad.  The most striking bout of unexplainable conviction that I experienced during his illness, though, was when he asked me how we would know what he wanted if he lost the ability to talk.

“I’ll just know,” I told him, somehow without missing a beat after he threw that question out into the room.  I cannot explain the sense of sureness I felt in the moment; looking back, I realize that it would have been much more reasonable for me to feel a sense of terror and uncertainty in the moment.  We were in the den of my parents’ house, the day after we’d brought him home from the hospital for the last time.  It was New Year’s Day, and my dad had not rebounded the way I’d thought he would once he was on his home turf.  He was still trying to eat to get his strength back, and he had been asking for small servings of food since he’d woken up that morning: “maybe a piece of bacon,” “some fruity dessert,” (which is what he called the cut-up pieces of fruit in a plastic bowl purchased from the produce section at the grocery store), and, the request always accompanied by a gesture of the quiet snapping of his fingers, “just a little piece of chocolate.” He’d asked for and had eaten a little of each, along with a sip of his favorite beer, Foster’s, which he drank through a straw while he sat up against the cranked-up mattress of the hospital bed in the middle of the den.  His voice was hoarse and breathy, and it seemed to be getting weaker as time went on despite the efforts of my dad to eat and take medicine that was supposed to make him feel better.

His concern about losing his ability to talk was legitimate, and I honestly don’t know the source of the confidence I heard in my own voice when I answered his question that day in the second-to-last verbal exchange I ever had with him.  I guess I would have to say it was an accolade of sorts for the extra time the rest of my family and I had been lucky enough to have with him over the weeks of his illness as we battled along with him.  I knew that if necessary, I would look at my dad and just know what he was thinking, just like those times many years ago when I crossed the finish line of a race. And again, it was well worth the effort.