A New Perspective on Hope

I didn’t think much about the concept of Hope during the ten weeks my dad was sick; rather, my family and I clung to it like a lifeline, as if it was the medicine that we needed to make it through each day and each night.  After he died, whenever I thought about Hope and the way we had had so much of it during those tumultuous weeks, I felt like a kid who’d been lured into a kidnapper’s vehicle through promises of puppies and candy.  I felt so incredibly disheartened and disappointed in myself for having had such complete belief that my dad (and thus my family) was going to beat the odds. Afterwards, after the rug had been pulled out from under us, I felt like I should have at least suspected that it might have been about to happen.

Here I am three years from the month in which my dad was diagnosed, still shocked and confused that the whole thing happened.  One thing that has changed for me lately though is my view on Hope:

A child I know was recently diagnosed with cancer.  His mom, a good friend of mine, and I have been talking about the injustice of it all, her fresh shock and fury easily unearthing some of mine.  I have felt especially at a loss as to what to say to her since her son’s diagnosis, mainly because I know how empty certain standard platitudes can sound to someone who is on the inside of the tragedy and who is struggling to survive in the midst of such unbelievable turmoil.  “Hang in there”??  What else would she do?  “Be strong"??  As in, don’t cry – or don’t run away?  “Let me know what you need”??  Maybe she can work on making a list and then call all of us to delegate in her “spare” time.  And then there’s the thing that I thought to be the worst form of banality when my dad was sick: “I know just what you’re going through.”  I’ve said it before, and I’ll say it again: that statement will never be true for any two people, even if those individuals are in the same family, are taking care of someone with the same type of cancer, or have some other type of parallel.  It’s always different.  

I did come across a quote that I thought might be something to consider as other words continued to fail me, though:

I came across a story about a child with cancer that was posted on a blog a few weeks ago with respect to Childhood Cancer Awareness Month in September, and some of the words from that story stuck with me: every family battling cancer needs hope.  I like the way the author used the term "family" in that statement as the battle is fought by entire families, and the truth of her words really hit home for me.  People need Hope, especially in the midst of the most difficult things they must endure, like the catastrophic illness of a loved one. That Hope can be for varying things depending on the circumstances - Hope for a cure, for comfort over pain, for more time together, for a solid treatment plan, for a trustworthy medical team, whatever is chosen by each person and by each family.  Sometimes that Hope is nothing more than the knot in the end of the rope that we've tied in desperation and to which we cling so fiercely.  Hope has such value, though, as it is what keeps us from giving in or giving up; it's not that we're heroic or tough or even smart and that's why we keep going in the midst of tragedy - it's that we have to believe so that we are able to persevere, to make it to the next corner, where there just may be something that will change the course of things.  It's stubbornness, it's strategy for survival, and it's love; it's what we do because it's sometimes all that we can do.

In that light, Hope seems brilliant instead of foolish to me, and, for that change in perspective, I am grateful.

Memories on April Fool's Day

Twenty years ago today, my then-fiance and I went to the County Courthouse during our lunch break and got our marriage license.  We had intentionally planned to get our license that day: I've always loved April Fool's Day - even if I don't have a good idea or an opportunity to pull a prank on someone, I love the idea that I COULD - and also it was the only day that we could coordinate our schedules to make it downtown during business hours before our wedding date less than three weeks later.  

It's a good thing we did it that day, because, as it turned out, on April 2, the next day, my grandmother died.  

My maternal grandmother was the grandparent to whom I was the closest at the time; I saw or tried to see some of myself in her - or I guess I should say I tried to see some of her in me.  Anyway, even though she had been sick for awhile as she struggled through a relapse of breast cancer, I was shocked by the news.  I was grateful that my grandmother had hung on long enough to meet my husband-to-be and to hear about my wedding plans - and most importantly to meet her youngest grandchild, whom she held in her arms not long before she went on ahead, but I was so saddened by the loss that I could hardly put one foot in front of the other.  It was the first death that I had experienced of someone to whom I was close, and I was at a loss of how to even try to cope.  

Needless to say, the next few days were a blur as we made our way to the city where she lived and gathered together as an extended family to pay our respects.  I remember that I didn't think I would be able to sit through the service in the church without bolting for the door because I was afraid my cries would be too loud.  I remember hardly being able to bear the pain of looking at my mom, at my two aunts - one of whom had a two year-old and a two-week-old baby - and most especially at my grandfather, whose sky-blue eyes held such endless sadness that there seemed to be no possibility of ever being able to comfort him.  I remember that I stood with one of my cousins and my fiance long after the rest of the people had gone back to their cars at the cemetery; the funeral director had dismissed us after they'd lowered the casket into the ground, but I just couldn't bring myself to walk away before I'd seen her body buried, one final thing I felt I could do, if not for her than in her honor.  We stood there by the headstones of the other graves around her plot, and I looked for four-leaf clovers while the dirt was placed over her beautiful silver casket, adorned with beautiful tiny daisies.  I remember that I was a little bit comforted by wearing one of my grandmother's sweaters to the funeral; it was the only thing I had of hers besides the opal ring she had given me - "October birthday girl to October birthday girl,"she'd said - when I celebrated my sixteenth birthday.  Years later, I pulled that sweater from the back of my closet and wore it to the funeral of a friend, and in the pocket I found the handkerchief that my dad had given to me at my grandmother's funeral, a reminder of both the tears I had shed and of the love my family shared as we tried to support each other through those rough days.  

I knew my grandmother well enough to know that she would absolutely have wanted "the show to go on," and so, just a couple of weeks after we laid her to rest, my dad walked me down the aisle and I said "I do" to my new husband in front of many of our family and friends, at sunset on the banks of the Mississippi River.  I wore the gerber daisy wrist corsage that was intended for my grandmother during the ceremony; I felt my her absence profoundly that day as I have many days since. 

Wearing the corsage meant for my grandmother

Today, when I think back on that April Fool's Day at the Courthouse, to the days afterwards leading up to the wedding, and to the wedding itself, so many emotions run through me.  I feel lucky, I feel loved, I feel happy for what I have learned and shared and survived.  Twenty years, wow.  Pretty incredible.

My grandfather, at my wedding, just two weeks after he'd lost his wife.
"I'm here for two," he said, and I knew just what he meant.

The Night My Husband Went Bald

Two days after my dad went on ahead, my siblings and I, our spouses, and our children all spent the night with my mom.  My brother-in-law Peter sat at the dining room table to work on creating a slideshow of photos of my dad to play at the memorial service the next day; with the rest of us taking turns handing him pictures to scan and giving input about what music to use, he worked on the project for hours into the night.  In other areas of the house, there was talking, comforting, and some crying going on; mostly I think we were all just trying to absorb what had happened and to keep ourselves together any way we could so that we could make it to and then through the memorial celebration we were hosting the next afternoon in my dad's honor.  

Just before midnight, we set up pallets on the floor of my parents' bedroom to the side of their bed, and then Mom and I went to bed in that room with the kids.  Exhausted, we fell asleep just minutes after we had closed the door to the room.

At some point in the night, I woke up and went upstairs to get in bed with my husband; the problem with that plan, though, was that when I'd gone to sleep downstairs it had not yet been determined where the other adults besides Mom and I were sleeping that night.  It was chilly upstairs, and I was anxious to get into a warm bed and go back to sleep.  I peeked into one bedroom and then into the other and saw two bodies in each bed, and so I looked in the TV room and saw a single person whom I deduced was my husband lying on an air mattress completely covered up with a sleeping bag.  I tucked in beside him, and he stirred a little in his sleep, causing the sleeping bag to shift and giving me a little bit of a view in the mostly dark room of his face and his head.  

In that moment, my heart skipped a beat. It was my husband's face, but it didn't look like his head: every bit of his hair was gone.

Without even thinking, I reached out a touched his head; he woke up and said, "I got my head shaved."  

"What???" I said, in disbelief.

"This way your mom can just look around for a bald guy at the memorial service if she needs anything," he explained, still half asleep.  

I was touched.  Shocked, because I'd had no idea that head-shaving was even being considered, but touched.  My dad was bald, as are my brother and both of my brother-in-laws; Kevin was the only adult male in the family with hair.

We went back to sleep for a few more hours, and then we got up and got ready for the gathering for the memorial.  All day I kept looking at Kevin's bald head and doing a double-take; he looked so different than he did with hair.  It somehow fit, though, in that place and time, as an act of tribute to my dad and as an act of protection and support for my mom and, by extension, for my sisters and me.  His newly bald head and even the grouping of the quartet of bald guys at the memorial were quite the topic of conversation, and thankfully it made getting through one of the hardest days of our lives a little bit easier.

Two Years Out

Have you ever run into someone whom you haven't seen in awhile and noticed that something about that person that you can't put your finger on has changed?  Maybe it was something so indistinguishable, so subtle, that you have even wondered if it was just your imagination, but still you felt that something was different about that person than it was in the past.  That's what grief feels like for me at this point.  It has changed over the course of the two years since my dad died, but it's hard to say exactly how.  Or maybe I have changed in how I address the grief and in how I cope.  One thing is for sure, though: it's still looming; it's not any less of a threat except for the fact that I guess I have learned a little bit about how to manage it.  

Part of me is shocked and even a little bit impressed (surprised?) that we've made it to the two year point after my dad went on ahead.  We've done it; we've helped each other through it and we've survived it, so far.  Some days, though, it feels like running the third lap of a four-lap mile around the track, which for me was always the most painful because I knew that I had to give it my all in that part of the race but I was also aware that there was so much work left to be done even after that lap had been completed.  Part of me is so shocked and so saddened by that fact that we're already at the two-year mark that just the thought that it has been that long since I've seen him immediately brings tears to my eyes.  Two years.  How did that happen?

I had a dream about my dad a couple of nights ago, and in it he was sick and he kept asking me, "How did we get here?"  At first, I thought he meant that he wanted to know how we had arrived in the physical location where we were, which was, oddly, sitting on a bench in a park that was not familiar to me (and certainly it wasn't somewhere that I went with him while he was sick), but then it dawned on me that he was asking how we had gotten to that exact point in time.  And then in the dream I turned to him on the bench with tears in my eyes and I said, "We got here because of your strength, your courage, your toughness, your determination, and your love, and we will never forget that."  I knew he want to know how he had gotten cancer and how it had gotten so bad so quickly, but no one knew the answers to those questions.  What I did know in the dream - what I wanted to convey to him - and what I do know in real life is that my dad is the reason that my family and I have had the fortitude not to crumble in the midst of the biggest challenge of our lives; time and time again, we have held him up as an example of how to face the pain of our grief, how to cope with the sadness and the anger that threaten to overtake the joy and the promise of hope for a better tomorrow, and how to look for the good on even the roughest of days.  That's how we have gotten here; that's how we've made it through these two years since he had to go on ahead.

But of course knowing that doesn't make me miss him any less; if anything, the passage of time makes me miss him more!

It's not just that today marks the two year anniversary of my dad's death that brings him to mind; I miss him all the time.

I miss how he and I could laugh over the craziest things, sometimes things we knew were ridiculous or even dumb but we thought they were funny anyway. 

About ten years ago, Dad and I drove from my house to the small town in Alabama where my grandmother lived to pick her up and bring her back to my house so she wouldn't be alone on Christmas.  It was about a 7-hour long drive each way, and we had a great time talking and laughing along the way, just the two of us on the way there and then with Grandmom on the way back.  At one point en route to her house, we stopped at a gas station that happened to be in a rough neighborhood; we both got a big fountain drink inside the convenience store and then got back into the car.  As Dad pulled out of the parking lot and turned onto the street, we heard a loud ricocheting type of noise on the back window of the car.  Each of us instinctively ducked our head as Dad quickly pulled the car over onto the side of the road so we could see what had made the noise; we both thought we had been caught in a crossfire that had shattered the glass on the back window.  When we'd had a few seconds to process things, though, we realized that the sound had come from the ice from the drinks that had spilled as we'd turned the corner after both of us had set our cups on the roof and had forgotten them there as we got back in the car.  A good laugh ensued, and we headed out onto the road again.

I miss the inside jokes and the memories we shared from running together.  One thing we used to talk about in that vein was our strategy of "rounding up" our run time ("If you say you'll be out running for 40-45 minutes, you can go for almost an hour before anybody notices," Dad had advised me many times throughout the years when I complained about not having as much time as I liked to have to run.  Prior to the time when he began training for the Ironman triathlon, his fitness goal from age 55-65 was to work out for an hour a day, at least 5 days per week.)  

I miss the exuberant way he marked his place in books, by folding half of the page down.  I was reminded of this just a couple of weeks ago when I was going through some books to see which ones could be donated to charity and I came across a book that he had handed down to me a few years ago, complete with folded down pages marking the places where he had taken a break from reading along the way.

I miss the way he took joy in everyday tasks and, in doing so, he made them fun for those around him.  This included lots of things he did to entertain me on long runs - things like singing as he ran and alternately bounced and caught a tennis ball to the beat of a song, like taking me on different running routes that he had scouted out in advance to make each one an adventure, and like coming up with unusual training techniques for the two of us like running up and down the steps on the outside of a grain storage bin for a certain amount of time (which he then challenged me to try to improve on when we did it again the next week).  

We ran up and down steps like these
as one of our training routines.

There were lots of non-running tasks that Dad made fun, too, though.  One thing I was thinking about recently was what he called "Laundry Parties."  When I was a teenager, Dad, as the person in our house who did most of the laundry, had trouble discerning whose clothes were whose between my mom's, my sisters', and mine, and so he often brought laundry baskets full of clean clothes into the den, dumped them on the couch, and announced to my sisters and me that we had to help fold them.  "It'll be fun!" he'd say. "It's a Laundry Party!" and, although we usually groaned and complained about having to help, he always joked around and made a usually boring task fun.  

I miss the way he hugged, which was often more back patting than anything else.  Somehow his technique always seemed to instill confidence in me, as if the back-patting was literally him patting me on the back to let me know he thought I'd done something right.

I miss the funny random emails and phone calls from him, sometimes about something so out of the blue that just his question or comment made me laugh out loud.  Once he called to ask me how to spell "coulotte" (pronounced "coo-lot" - this is a style of women's pants also known as a split skirt, in case you didn't know).  I spelled it for him, he thanked me, and then, obviously in the middle of a thought, he hung up.  I had to ask him later why he needed to know: he had been writing a memo to employees in his office about what was and what wasn't acceptable attire for Casual Fridays.

I miss the funny rules he made up for some things, like "I never drink beer that I can see through," a rule he imposed several years back when he discovered that he had a penchant for dark beer, despite the fact that he had been drinking lite beer for decades before that.

I miss the smell of Brut on him, so much that I sometimes break out a bottle of it that I have stashed in my bathroom just to take a whiff of it.  It's comforting in that context; it's disturbing and sad when I smell it on someone else in passing, as if that intrudes on the comfort of it in my memories from when he wore it.  

I miss the way he bounced on the balls of his feet when he walked.  I miss his competitiveness, which he carried on with himself as much as anyone else, and I miss his pride.  I miss the way he could (and usually did) talk to anyone who crossed his path.

I miss the way he lost certain things, like his wallet, so often that he tended not to worry about it whenever he did; like he did with a lot of other things, he didn't worry because he thought worrying was a waste of time and he just believed that everything would be ok.

I miss having him ask me about my job and how things were with my husband and the kids; I really miss how he used to listen to what I said in response and then how he would sometimes sigh as if he felt exhausted on my behalf and then say, "I don't know how you do it all!" with so much pride and admiration in his voice that it soothed me and made me proud, even when I'd felt like I had been struggling before then.

I miss his no-nonsense attitude and advice, the same kind he gave me when I called to tell him that I'd been offered my first job as an occupational therapist after I'd graduated from college.  I told him what the salary would be and that I thought it would be a great place to gain experience, and then I said that I had told the human resources department that I would get back to them about my decision.  Without missing a beat, he said, "Haven't you been wanting to work at a children's hospital like that for many years?"  I told him that I had, and he said,  "Well, then, what are you waiting for?" was the advice I got in return, in response to which I hung up with him and made the call to accept the job. 

I don't think Dad always recognized the value that other people found in the advice that he gave out, though.  Late one night when he was in rehab and he, as usual, couldn't sleep, we were talking about the schedule for the next day and I reminded him that I was leaving to drive back home as soon as my mom got back to stay with him the next morning.  "Be really careful driving back," he told me, and then he said, "Be sure not to stop for gas in the valley on the way back; it could be dangerous there and cell phone coverage isn't good."  He paused and added, "But I'm sure you can take care of yourself."

Before I could say anything in response, he commented, "Sometimes I worry that any advice I've given you hasn't been about the important things."

"What do you mean, Dad?" I asked him. "You've given us good advice!" to which he responded, "All I can remember telling you is stuff like always keep a towel in the trunk of your car and put some toilet paper in the waistband of your shorts when you go for a run in the woods."  It was true; he had told me both of those things many times throughout my life, and, truth be told, I always did both of them (and still do).  But, of course, that wasn't the bulk of the advice he had given to me over the years, and I wanted to be sure he realized that.  "You've taught me a lot more than that," I told him, but the only answer I got was the sound of his rhythmic snoring.  After tossing and turning and chatting for the majority of the night, he had, at last, fallen asleep.

I miss the lists of "suggestions" he emailed to us before his birthday, Father's Day, and Christmas.  To me, he was always the easiest person to buy a gift for, not just because of the list but because he had such distinct hobbies and because he would often just "make do" with whatever he already had instead of buying the latest and greatest accessories and gadgets for himself, leaving it open for us to give those things to him later if we wanted.

Once when we were running together during the time that I was preparing for a marathon, I told him that I had gotten some new gear to help me with the training and that I had estimated that I had several hundred dollars of equipment on me every time I went out the door to run.  He actually stopped in the road and said, "Are you serious?"  Yes, I told him, but that included my high-tech clothes, my shoes, my GPS-enabled watch, my heart-rate monitor, my sunglasses, and my iPod.  "That's crazy!" he said, incredulous.  He started running again but insisted that we go back by the house so that I could "ditch the extras." "That way we can really run just to run," he said.  And that's what we did.  How I miss being able to do that with him, and to talk about anything or nothing along the way.  Damn.

Steps To Nowhere

Disclaimer:  This is a long post, full of emotion about two things that are important to me - my dad and my profession.  I know LOTS of health care workers including many OT's, PT's, and Speech Therapists who are excellent at what they do and who are dedicated to going the extra mile to advocate for their patients and to meet their patients' needs.  Unfortunately, though, the majority of those with whom we came into contact during my dad's illness were not of that caliber, a fact with which I am finding it very difficult to reconcile.  Here's the story ...

Like lots of kids starting off in college, I really didn't know what I wanted to be when I grew up when I left home to go to college at the age of 18.  It was my dad who took a good look at what my interests and my strengths were and who eventually found out about occupational therapy, a field in which I have loved practicing for the last 21 years.  

I think some people just kind of fall into a career that they see as better than nothing or just so-so, some go with something that motivates them with money, and some just punch the clock while hoping that something better comes along.  And then, of course, there are the lucky ones like me: those who somehow find their way to doing something for a career that they feel they were meant to do, something that, while not always fun or perfect in every way, gives them purpose and intertwines with whom they are in such a way that they know they are following their calling.  I am one of the lucky ones, thanks to my dad.  That's why part of what happened while he was sick disturbs me on such a level that I am afraid that a part of me will always be left feeling disheartened and disillusioned.

Steps to nowhere

The first contact we had with the world of rehab during Dad's illness was just a few days after his surgery, and right away things started out with a series of fumbles and ball-dropping.  The slew of physicians on Dad's case kept telling us that Dad would begin to be seen for Occupational Therapy ("OT") and Physical Therapy ("PT") as soon as he was transferred out of the ICU onto a regular floor, which happened early on the Friday afternoon after his surgery on Wednesday.  When no one from rehab showed up that day or the next morning, we asked again when it would start, and at that point we were told they “don’t do therapy on the weekend."  Evidently, though, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon came to see Dad around noon on Saturday, he was surprised to learn that therapy services had yet to start for Dad.  Evidently he followed up on it, because about an hour later the OT and the PT showed up.  They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks), and they checked his movement and strength (fine on the right, not good on the left).  All in all, the two therapists together were with Dad for a total of about 20 minutes, about half of which time was spent with them telling us that they thought he needed to go to an inpatient rehab hospital for a week or two and that we should visit a few in the area right away since the doctors were already talking about discharge from the hospital in a couple of days.  

Once the initial mini-therapy session was over, my family was left to figure out what our next step was, with the knowledge that we had to work something out in the next 48 hours or less or essentially Dad would be sent home with only a follow-up appointment with the oncologist.  Even now, thinking back to that time gives rise to the sound of a clock ticking loudly in my head; especially considering that we had just been given the news of how severely limited Dad's time was likely to be, given his prognosis. It was nothing short of shocking to think that after only a brief session of therapy the hospital staff seemed to feel that it was just fine to push us out of the nest, even though there was no possible way they could know if we were ready to fly or not (we weren't!).  

And so we were left completely on our own to find a suitable rehab facility in essentially one day (a Sunday at that!).  Keep in mind, too, that at least one of us had to stay right with Dad every second of the day and night, too, because of his impaired balance and mobility and his safety awareness issues, at the same time that we were literally left to use Google and the yellow pages to find some place that we felt could have a positive impact on Dad's future.  To say that the task of figuring out what to do next was daunting is a vast understatement.  

That Sunday afternoon, we toured the only two rehab facilities in the area that took Dad's insurance and that met our criteria, which at that point had essentially been whittled down to somewhere that had therapy services available to be carried out 7 days per week, was clean and safe, would allow around-the-clock family visitation, and had an opening the next day.  We were also hoping to find a place with a Case Manager so that while Dad got his therapies and finished recovering from the brain surgery from the week before, we could get the support and referrals we needed to modify my parents' house to make it safe for Dad to go home and to go ahead and set up all of the follow-up care that would be needed after discharge.  We settled on the second place we saw and let the admissions coordinator know that we were seeking a very short-term stay with aggressive therapy services, probably a week at most so we could then get Dad home and have him get ready to start treatment for the cancer.  The coordinator said that could be arranged.  We were relieved and felt that we had a solid plan in place for the time being.

From the minute we arrived at the rehab hospital, though, I felt there was a lapse in communication and a gap in the services that should have been provided.  As Dad read the newspaper in bed and Mom and I unpacked, the Rehab Director came by to meet Dad.  In talking to him about Dad's medical history, I reiterated that we were seeking a short-term stay of about a week with the goal of getting intensive therapies provided for Dad so that he could get a jump-start in his recovery.  The Director said that the therapists there would evaluate him and then the team would report back to us with a plan; I told him that we would like to have input into the plan and that we were also seeking recommendations about any equipment and follow-up outpatient therapy services that Dad would need after he left the rehab setting. 

Very early the next day, we were presented with a copy of the schedule for Dad's therapy sessions, which were to begin that morning.  The schedule said that Dad would get OT, PT, and Speech Therapy (to work on memory) back-to-back starting at 8 a.m., and then he would get more therapy that afternoon.  Good plan, except the OT showed up 45 minutes late, which threw off the entire schedule.  In what became a pattern during Dad’s stay there, the therapists juggled things around to try to fit Dad in, and oftentimes Dad and the family member who was with him were not informed of the changes and/or the scheduled ended up not being able to be adjusted and some of his therapy got left out. As a result, over the course of his rehab stay, Dad did a lot of waiting, and, as par for a brain injury like his, he was having trouble dealing with schedule changes or uncertainty.  He asked many times what was next, but the answer didn't seem clear to anyone around.

In the afternoon of Dad's first full day at rehab, the Director came into Dad's room and told my aunt, who was staying with Dad while Mom went home for a wardrobe change, that patients there typically stayed for a couple of weeks or more.  He said that the therapists would present my family with a plan in the next couple of days.  When my aunt called to tell me about the conversation, a red flag went up in my head: before we had made the commitment for Dad to come to that facility and less than 24 hours prior to that time, I specifically told the Director that we only wanted Dad to be there for about a week.  Even if the guy didn't know ANYTHING AT ALL about Dad's prognosis, all he had to do was google "GBM" and he would've immediately seen why we were so concerned with time.  Just in case the prognosis that we'd been given had any merit at all, we wanted Dad to be able to do what he wanted to do, and it was becoming clearer by the minute that staying there was not of his preference.  When I got back to the rehab center the next evening, I was told that the Director wasn't on site but that it would be conveyed to him that I needed to speak to him.  He didn't come by all the next morning, and that afternoon we went for Dad's first appointment with the oncologist, after which I had to leave to go home so I could go to work the next day.  After a round of phone tag the following day, I finally got him on the phone, and he told me that the team had presented the plan for a 3-week long stay to Mom and Dad and they'd agreed.  I was stunned that the rehab team had met without input from my family; they hadn't asked any of us the first thing about how my parents' house was structured or what my dad hoped to be able to do when he was discharged.   He insisted that with the extra time Dad would be “much more likely to achieve the team’s goals of supervised/modified independence,” which in rehab terms means that a person goes home able to take care of himself with special equipment (like a walker and a shower bench) but would need another adult to be nearby in case he needed to ask for assistance.  He told me he planned to go over the specifics of the goals the therapists had set for Dad (goals that were set without any family input), and that he would meet with me when I was at the rehab facility in a few days.  I see that conversation now as almost brainwashing; I am no sucker, and, like the rest of my family, I was fierce in my effort to do what was right for Dad, but somehow the guy convinced me that he was right.  Maybe it was because I was totally sleep-deprived and stressed-out, maybe it was because I presumed that given his position he was experienced and knew better than I did, maybe it was of the belief that I had that people were there to help us in our time of need without an agenda of their own.  Maybe (maybe even likely) it was part of the bargaining process that my family was willing to participate in: if it took having Dad stay at rehab for longer to get him back on track, of course that's what we would do!  Maybe it wasn't even that the plan to have him stay longer was wrong; certainly, though, from my current perspective, the way the plan was developed and presented to us was absolutely not right, and, even worse, the quality of the services and the assistance that we were provided as part of that plan was far from adequate, both in my personal and in my professional opinion.

We were also in the midst of dealing with meeting Dad's needs around the clock and with the huge paperwork demands for legal things like getting medical power of attorney and financial things like checking into filing for disability and follow-up things like filling in the 10+ pages of detailed information required to get Dad into the Duke program.  Everyone in the family who was involved in Dad's care wanted to do what was best for Dad, and it was easy to believe that the plan proposed by the rehab team was just that.  And so we threw ourselves into doing what we thought was based on what we thought was their expertise; we agreed that Dad would stay at rehab for three weeks, and we voiced our mission over and over to the staff that in that amount of time we wanted to have the house set up for Dad, any necessary equipment in place, and all the follow-up services lined up so that when we left there, we were 100% ready for whatever was coming next for Dad.

Besides the plan for the length of time Dad was to be at the rehab hospital, though, there were other issues that I also felt (and still feel) were being mishandled.  I sat in on several therapy sessions with Dad while he was there.  With my rehab background and having spent so much time with him since the onset of his illness, I knew what his deficits were; I also knew about brain injuries and about what the point of doing certain activities as part of the therapy sessions were - but Dad didn't know either of those things.  Pre-cancer, he didn't, and certainly in the midst of everything, he didn't, and it was part of the job of the therapists to try to inform him of those things.  As I've mentioned, Dad detested inefficiency; he used to comment to me that he thought "all of these new-fangled training programs for runners are just money-making schemes," and then he'd add "Here's the real secret to becoming a better runner:  RUN MORE!"  And so it isn't hard to imagine the frustration, the boredom, the feeling of stagnancy that he must have been feeling when the therapists asked him to do things like matching cards and sorting little trinkets into piles, doing word searches and recalling random words called out to him, and performing leg lifts ("With no weights AT ALL?" Dad incredulously asked the PT the first time she told him to lie on the mat and lift each leg ten times.) and going up and down the make-shift set of wooden steps in the middle of the therapy room ("Steps to nowhere," Dad muttered prophetically as he went up and then down the stairs again and again as part of a PT workout.)  Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree.  It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury.  Over the course of the time Dad was in rehab, I watched him go from being fairly upbeat and ready to face his charge, to being openly bored and confused about the point of things, to being aggravated and resentful during his therapy sessions.

But still he tried his best, each and every time he was asked to do an exercise or a task, even when he didn't feel like it and even though he didn't see the point.  The couple of times he requested that a therapy session be cut short, he later made up for it by doing extra repetitions and by asking one of us to quiz him on something; he seemed to think that by doing "homework" he would get to go home early.  But again, the payoff from doing the work wasn't as deserved; not only did Dad not get discharged early, he didn't make the progress we had been assured that he would.

Believe me, I know there are know guarantees in life; I knew it then too, from a professional standpoint more than anything: sometimes a person can put forth 100% effort in therapy sessions and still not meet the goals that have been set.  However, what I also know is that it is the responsibility of the rehab team to reassess and regroup whenever necessary, and, if independence doesn't seem to be in the cards at least at that point for the patient, it's their job to make an effort to set that person up with adaptive equipment, follow-up services, and support so that the goal of working towards ensuring safety and some degree of satisfaction on the part of the patient is achieved.  That part is something we as health care workers can control, the follow-through and the empathy and the compassion, even if they technically go beyond the spectrum of our job description.  

Besides having Dad get better through therapy sessions while he was at rehab, our second goal for during that time was to have a social worker or someone like that to help us coordinate everything that was going on.  Mom and Dad first met the Case Manager on Dad's fourth day in rehab when she came by Dad's room (not great when you consider we were originally only planning to be there for a week); she told them she would help with any legal paperwork and also with coordinating services that would be needed after discharge.  She said that the team would meet the following week to decide how much therapy Dad would need after he left rehab and whether they recommended he be seen for therapy at home or in a clinic as an outpatient.  

After that, I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages.   Several times when I was at the facility I went to her office and left messages with the nursing staff that I needed to talk to her; I recognized the urgency of getting the ball rolling for after-care services and supplies, and I was shocked and angered as it became more and more apparent that the Case Manager not the rest of the staff there either didn't see the importance of it or - worse - they just really didn't care.  I called it "watching the Cancer Channel;" these people evidently were just find with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real, it isn't happening, it isn't their concern.  

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week.  Dad was restless and bored; for him, there was pretty much nothing to do except wait for the time that he could go home to come.  For us, though, there was a seemingly endless list of things to do.  One of those things was installing grab bars and getting other adaptive equipment like a shower bench set up at my parents' house.

I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," an approach that seemed to us to be at best unreasonable or lazy and at worst careless or reckless.  I consulted with my physical therapist and occupational therapist friends - most of whom are pediatric therapists like I am - and then I used my friend Google to try to figure out at what height to mount the grab bars. Because the therapists at the rehab hospital couldn't/wouldn't (what's the difference?) give us names of contractors or home health therapists who could install the equipment, my husband and my brother-in-law installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible.  If we couldn't find help to climb Mt. Everest, by DAMN we were going to work together to climb it anyway.

The days of therapy sessions were peppered with unexpected cancellations and rescheduling of therapy sessions for reasons that were not always explained to us, early morning wake-ups by the staff for deliveries of breakfast trays and medications ("The day shift gets mad when they get here at 6:30 a.m. and we haven't gotten all the trays and the meds out to the patients yet," one night-shift nurse told me when I asked about the earliness of the delivery.  "Wow. Just wow," I thought, as I gritted my teeth and told myself and Dad that we just had to stick it out a little longer and then we would control our schedules for things like that.).  Somehow the speech therapy services got switched over to being provided by a student speech therapist, a young girl who was nice enough but obviously lacked the knowledge and experience that we so desperately needed and expected.  (Maybe they should've had the student provide extra sessions of speech therapy for Dad, for free, instead of billing us full price for her sessions as we later discovered they did.)

For probably a variety of reasons, Dad's progress was slow and inconsistent.  I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from, as much as at this point I want to not feel as upset and full of blame - deservedly or not - as I do towards the staff at the rehab center.  

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling.  Luckily, Dad wasn't hurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training.   No one in my family ever heard back from the social worker, the woman whom we had been told was our Case Manager; eventually we caught on to the very obvious fact that the onus was on the patient’s family to figure out what needed to be worked out before the patient went home.  I thought it was absurd that we were the ones having to make a list and chase down the support we needed; I shutter to think what would have happened otherwise.  After being asked at least a dozen times by my family when Family Education Day would be held so that as many of us could schedule to be there as possible, the Rehab Director informed us that the training would be two days before Dad was discharged.  We told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts.  He said that there wasn’t another option available for this, though, and so I took the day off work and went to the training.  During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out.  I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support.  To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.  

At last, though, the day of discharge for Dad came, and we were able to take him home to his house which had been set up to meet his needs, no thanks to anyone at the rehab hospital.  We called and made an appointment for someone from a home health agency to come to the house to go over what types of services we could get for Dad, and it was decided that he would get OT, PT, and Speech Therapy at home.  

Right away I asked if the therapy sessions could be set up on a consistent schedule; it actually shocked me when I was told no, that the therapists each handled their own schedules, and after a week or so of dealing with them coming in and out of the house throughout the day, it became clear that we were once again at the mercy of a group of people who either just didn't get it or just didn't care.  It was of great frustration that the therapists did not seem to coordinate with each other at all and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them.  As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a stroke patient, and those two things are vastly different.

 One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days.  The next day, the therapies were at 9:30, 1:00, and 4:00.  There were lots of last-minute schedule adjustments and some cancellations by the therapists, too.  The only consistency from the home health agency was the inconsistency.  Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before.  He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion. 

Thinking I could tie Dad’s love for swimming in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures.  I'm not so sure that the reason they wouldn't even consider taking him on as a patient wasn't liability; none of them were even willing to meet him much less try to figure anything out that might help us.

I was taught in OT-school that goals for therapeutic intervention should always be based on what the person wants to do; I don't recall even once while Dad was sick having a health care professional ask him or any of us what he liked to do or what his goals were.  He would've said going to a Grizzlies' game, going to the movies, going to Barnes & Noble, maybe even being able to walk his dogs around the block.  I can't for the life of me figure out why those things weren't addressed by those therapists, why they seemed to think it was just fine to have Dad work on stacking cones, squeezing a ball, and doing leg lifts instead of at least trying to focus on things that mattered to him.  My family was doing what we could to facilitate the things like that that were on Dad's Revised Bucket List, but it would have been nice to have some help.  I've taken kids to the circus, to McDonald's, and to a playground as part of therapy sessions in the past; I don't see why Dad's therapists didn't see the value in making the effort to support Dad's objectives.

And then, the icing on the cake came: the day before Dad was scheduled to get an MRI to see how the treatment was going, he fell in the den and couldn't get up.  My sister Jennifer was there with him and tried for over an hour to help Dad get up; by sheer luck, Dad's swim coach and friend Ashley showed up and was able to help Jennifer get Dad up and into the a chair.  

After Ashley left, the OT came for a therapy session that had been scheduled earlier.  Jennifer told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an   Jennifer asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom, at which point the guy hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.

 Looking back from this vantage point to the time while Dad was in the rehab hospital and to the time he spent in the home health therapy sessions, I have to say that it was a complete waste of his time.  It makes me feel ashamed to be part of a professional group with some members who choose not to go the extra mile, or possibly even not to fulfill their job responsibilities - or, taking it even one step further - even to step up to help a fellow human being.  My family was desperate to find a way to help Dad to get better, or failing that to make accommodations for him to help preserve his dignity and his enjoyment of the time he did have left; we truly felt that we were fighting for his life, and we desperately needed help from someone who could do something to help us in that fight.