Saturday, October 8, 2011

Part 2 - I Don't Know What's Happening

Continued from Part 1

By the time my middle sister and I got to the hospital, Dad was off the ventilator and was talking, eating, and joking around.  In fact, when she and I entered his room in the Neuro-ICU, he “punked” us by pretending that he didn’t recognize us.  After seeing the look of panic on our faces, our mom "busted him" pretty quickly, but he got a good chuckle out of his little prank, which was so “him.”

At first glance, he looked and sounded like his usual self, lying in the hospital bed, until he said or did something that made it clear that he wasn’t.  For example, he didn’t notice anything or anyone on his left side, and his short-term memory was impaired.  He was aware that he was in the hospital but kept forgetting why he was there; most of the time, he thought it was because he had had a wreck on his bike.

My middle sister and I spent the night there that night; because he was awake and talkative, the nurses made an exception to the rules of the ICU and let us stay in the room with him overnight.  It was really cold in his room, and the chairs in there were uncomfortable, but we were grateful for the privilege of getting to be with him, in more than one sense.  

I had brought a spiral notebook with me to the hospital, and we began taking careful notes about what Dad said or did, what the staff said or did, and thoughts and questions we had about what was going on.  

Dad said that he had a headache (which he thought was because of a bike wreck), and so he was given pain medication, which the nurse said would put him to sleep.  However, in what became a consistent pattern over the course of the next ten weeks, this did not happen - his headache didn't really get better and he didn't really sleep.  Dad dozed off and on all night, never for more than about twenty minutes at a time, and, while he was asleep, he was talking, worrying, and moving around restlessly in the bed.  

What he said during his bouts of sleep reflected more of what was going on inside his head than his appearance and his daytime conversation did at the time; he repeatedly said, “I don’t feel good” and “My head hurts,” both of which made sense to us and to the medical staff because we knew about the mass in his head.  What was more disturbing to us was when he said things that we couldn't explain, like “I don’t have my stuff, and I don’t know what’s happening,” “I’m not ready to go,” and “I don’t even know where I’m going.”  Rather than reading too much into those words, we just recorded them in our notebook.  We focused on taking care of him and on getting the things he needed, like more medicine and more pillows, adjusting the lights, and reassuring him that we were right there with him and that we would take care of him.  

We also noted the names and other details about the staff members who provided care for Dad in our notebook.  We knew that we would be tag-teaming to be at the hospital with Dad, and we wanted to be sure we had good communication amongst ourselves to keep up with everything from medications, complaints and comments from Dad, information from the medical staff, vital signs, and questions to which we wanted to find out the answers.

A bonus feature of the notebook was that it afforded us the opportunity to get our frustration out on paper when necessary; we were trying to fly low as visitors in the ICU so we would continue to be allowed to stay with Dad around the clock.  My middle sister wrote that Dad’s nurse that first night we were there was “loud and annoying,” but we were cordial to her as we knew we were at her mercy and, even more importantly, so was Dad.   Dad, of course, was friendly to everyone who entered his ICU room, from the custodial staff ("Thank you so much!  This is such a nice room!" he said to the woman who came in the sweep daily.) to the nurses ("Great job on that IV!" he said to one, after she had to stick him four times.)  to the Big Wig Doctors who came by ("Nice tie!" he told the neurosurgeon.).  We followed his lead; we were depending on the nursing staff not only to provide good medical care for Dad and to bend the rules to allow us to stay with him but also to fill us in on The Real Facts about tumor resection, brain cancer, the medications he was on, and the doctors, who flurried in and out of the room a random pattern at all hours of the day and night.  We knew that these nurses were our lifelines, and we planned to use as much honey as was necessary to keep in their good graces for Dad’s sake for the duration.

The story continues … Part 3 - Whew! I Need a Vacation!

Thursday, October 6, 2011

Daughtering - Part 1 of the Behind the Scenes Story

The term parenting is technically defined as the act of being a mother or father to a child; it means to take care of the person or people to whom you serve as the parent.

So why isn’t there a parallel term for taking care of one’s parent – sonning, or, in my case, daughtering?

The way I can daughter my dad now is by telling his story.  Not just the one from the ten weeks when he was sick, but his whole story, or at least what I know of it. 

During the time my dad was sick, I posted updates regularly on CarePages for friends and family members to keep up with what was going on with Dad.   As I said here, for the first nine weeks after Dad was diagnosed with cancer, we chose to view his illness as a challenge instead of a catastrophe. The CarePages updates focused on what was going right and on the Hope for which we were so very desperate.   But there was lots going on behind the scenes and on the sidelines besides what was posted then, and I feel like this may be the time to begin to tell that part of the story.

This is a sad story, to be sure, but it is also one of Hope and Spirit.  It’s about tenacity and courage and toughness, not just tragedy.  It’s about Love and, of course, Perspective.  It’s about what we learned, not just about cancer but about my dad, about each other, and about ourselves.  It’s about how cancer sucks – it really, really SUCKS! – but WAY more than that, it’s about the strength of a man who wants to protect his family and of a family that wants to protect that man.

 On October 23, 2010, my 66 year-old dad was out on an eight-mile run.  About halfway through the run, he became disoriented.  He stopped at a traffic light but was unsure of which way to go to get home from there.   Fast-forward through a helpful couple who noticed Dad’s distress and called an ambulance, to a transport to a small hospital where a “mass” was detected during an emergency CT scan in his brain, and then to another ambulance ride to a large hospital that was equipped with a Neuro-ICU.   During that flurry of activity, our lives changed forever, and we didn’t even know it was happening. 

My mom was out of town, but luckily her two sisters were contacted and were nearby, and they raced to the hospital to be with Dad while Mom scrambled over the next few hours to get there.  When Dad arrived at the second hospital, he was fast-tracked for an MRI.  Once inside the MRI tube, Dad had an extended grand mal seizure.  The medical team got him out of the tube and performed CPR for several minutes before Dad was intubated and hooked up to a ventilator.  He was transported to the Neuro-ICU, which is where he was when my mom and my youngest sister arrived.  He was sedated and stayed hooked up to lots of IV’s, monitors, and machines overnight, and they stayed by his side, in shock, watching and waiting, a rough beginning of the uphill battle to come.

I think a lot about what went on inside that MRI tube that day.  I’m not sure why; I feel like thinking about that is something I should be moving past by now in the grief process.  But it was such a turning point for Dad, and for all of us who love him, like a Time Machine of sorts.  He went in looking like, acting like, and living like a person many years younger than he was, with a little numbness and confusion, and came out decades older, with a malignant brain tumor and many problems with motor skills, sensation, visual-perception, and memory and reasoning.  On one side of the tube he was a competitive athlete, working full-time, traveling and enjoying his life; on the other side he needed assistance to walk and was unable to perform the tasks necessary to work, drive a car, or live independently. 

Maybe those deficits were already bubbling at the surface and Cancer was like a bandit in the night that just uncovered them all at the same time.  Maybe the changes weren’t as defined as I remember them being at that point in time; perhaps they came in a few days later when he had brain surgery or over the upcoming weeks when the tumor was continuing to grow.  From my perspective, it just seems like a watershed moment, a time when we learned that a hurricane was coming but we couldn’t evacuate, a time when the future was being written, a time when things began to spin out of control, a time when Daughtering took on a whole new meaning.

Wednesday, October 5, 2011

Telling The Story

The process of coping with Dad's illness and his death and then struggling with the grief has been such a learning experience for me, in some good and some not-so-good ways.  It changes one forever, that’s for sure.

I've been going to a grief counselor and a grief support group for the last several months and have found it to be helpful.  Each person in the grief support group has a different story to tell.  The group is full of different personalities, ages, backgrounds, situations, and beliefs, but many of our feelings and the ways we are muddling through grief are similar.  It is comforting to me to know that this is all part of Normal (whatever that is). And, when we talk about the loved one we lost, when we tell their stories and ours, I love how our voices weave together in common threads despite our differences.

I don’t think things get better in time after the loss of a loved one ~ it hasn't for me at least so far ~ but maybe we get "better" at coping, and, even if we don't, life goes on, which in and of itself sometimes makes me cry.

One of the most helpful suggestions I’ve gotten from the counseling sessions has been to write.  The counselor doesn’t say what to write, or when, or how much, or why – all of that is left open to be figured out and/or determined as needed by the bereaved.  Some of the other people in the support group have said that writing doesn’t help them, some say they can’t get started or just don’t want to do it, and one person even said it made her grief worse. 

It is helping me, though.  I’m not sure why, but I am glad and grateful that it is.  Maybe it’s because I think that having a written record of my memories, thoughts, and pain will make it more likely that I won't forget anything, which is a big fear of mine.  I believe that as long as there’s someone around to remember a person or an event, it still exists.  It breaks my heart that I can’t see or talk to my dad, but at least through writing about him and what I’ve learned as a result of having had him in my life, I can still hang on.  He took a piece of me with him when he went on ahead, but, through writing, I know that a piece of him will remain here with me.

From the grief counselor, I’ve learned that there are certain questions and concerns that almost everyone who is grieving has at some point.  One of these things the bereaved frequently wonder is if there was anything else that could have been done to save the person who died.  Of course we wonder that; it’s human nature.  I know, though, in my heart that we did all we knew to do to take care of Dad and to save him, and writing helps me to confirm that. 

And then there’s the Denial, still lurking and always trying to gain a foothold.  For a few seconds at a time, my mind sometimes allows me to believe that none of the events of the past year actually happened.  But then I remember, and I am thrust back into the icy Sea of Grief. On the surface, it seems like I would readily invite the Denial that gives me the high of the fantasy in which my dad is alive and well, but, in reality, it brings about a hangover that leaves me hurting and struggling to breathe. Writing is helping me to accept that it really happened, to cope, to let some of the things that don’t really matter go. 

I think about the significance of the stories that I’ve told about Dad so far.  It makes me feel better to have it on record how much of an impact he had on me and on other people, even though he certainly wasn’t aware of his influence or aware of how his kindness touched so many people.  I believe that writing can be a powerful healing balm and that it can console those who are grieving with thoughts of better days both in the past and somehow also in the future. Scribed words are proof that my dad’s life mattered.  And, most importantly to me right now, it is a connection for me to my dad, one that I know will always be available whenever I need it.  Yet another way that my dad has shaped me and at the same time has given me the tools that I need to do what I need to do.  Thanks again, Dad.

“I believe that imagination is stronger than knowledge, that myth is more potent than history.  I believe that dreams are more powerful than facts, that hope always triumphs over experience, that laughter is the only cure for grief.  And I believe that love is stronger than death.”  ~Robert Fulghum