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.  

  

 

Coming Into View

I’ve been thinking a lot lately about how I’ve been hearing about so many cases of cancer, and, more specifically, the same kind of brain cancer that my dad had, since his diagnosis. Before my dad was diagnosed with Glioblastoma Multiforme (or "GBM") in October of 2010, I’d never heard of this type of brain cancer.

Since Dad’s diagnosis, though, it seems like I can’t avoid hearing about people that have the same thing.  It reminds me of the way that after I’ve gotten a new car I keep seeing the same kind of car on the road, even though I’ve never noticed that kind of car before then.  As with the car spottings, I'm not sure if there actually has been an increase around me or if I'm just more attuned to noticing it because of my personal situation/experience.

I’ve been wondering if this same thing is commonly experienced by others who have also been left behind when a loved one dies.  Maybe it just happens with a terminal illness, maybe just with cancer, or maybe only in cases of relatively rare cancers.  Or maybe it’s just something my family is noticing.  In any case, though, I find it so interesting (and at the same time so disturbing) that I started wondering if there is a name for this phenomenon.

I was thinking that if it didn’t and if I found out that it was commonly experienced as part of the grief process, maybe I would start a trend of calling it something like Sensitization Syndrome or Frequency Factor.  I’ve since learned, though, that there is already a general term for something very similar: The Baader-Meinhof Phenomenon.  

Since Dad’s diagnosis, I've counted about a dozen GBM cases that I’ve heard about in people that I know personally or in people who are personally known by someone else I know well.  In one case, it’s a person I know professionally, and, when she was first diagnosed around the time my dad died, my coworkers didn’t want me to find out what her exact diagnosis was.  They talked around the subject and at times seemed visibly uncomfortable when I inquired about how the woman was doing.  I think they thought it would make me think about my dad and that it would make me sad, when actually (of course) I was already in a perpetual state of both of those things, and when actually I had developed a sort of obsession with assimilating as much information as possible and talking about GBM.  

Some of the people who have also been handed down a GBM diagnosis have had different treatments and/or different outcomes than my dad.  Not long ago, I asked a friend of mine about one of these people - another woman I know professionally, who was treated with the Gamma Knife and is currently in remission and is doing well over a year later - and my friend commented that it must be hard for me to hear about another GBM patient who had a better outcome than my dad.  I didn't even have to think for one second before I could respond:  as much as may seem like there would be some jealousy on some level in this, there really isn't.  Anybody who get GBM, or any type of cancer, or any sickness or disease, deserves to get better.  They all deserve more time.  I am glad for anyone whose treatment works, and I wish them the best in their recovery.  I just wish we had gotten that chance in my dad's case too.  I can't wait for the day that all forms of cancer - the aggressive ones like GBM included - are considered not just treatable but curable, or, even better, when enough is understood about genetics and causal factors for there to be an eradication of this awful disease.

Sometimes when I hear about other cases of people who have GBM, I am torn about whether or not to impart the knowledge I was forced to come upon the hard way – should I share what I know, our experiences, my resources with others who are having to get this terrible news?  I’m not sure if doing so would be nice or cruel.  I certainly don’t want to imply that all outcomes are like ours, but, because ours wasn’t long-term survival or a cure as we had hoped (and believed), does that make what we learned along the way not friendly or potentially invaluable information to share?  I sometimes think about whether or not I wish I had known what we came to know  - if I say yes, it’s because I think we would’ve either skipped the treatment, even and probably most especially the surgery and rehab, and then put forth our best effort to take Dad to the beach or somewhere peaceful, or we would’ve tried harder to look around at other treatment options.  Realistically, though, I know that might not have been possible, or – if we had taken him where he said he wanted to go – he would’ve discovered that he couldn’t experience or enjoy things as we would have thought.  Maybe it was selfish to decide for him to go for treatment when we were being told the prognosis was so very bleak even with intervention; believe me, I think about that even more often than The Baader-Meinhof Phenomenon.  But I know we HAD to try whatever we could in hopes (and with the belief) that it would make a difference and to let Dad know that we would do WHATEVER IT TOOK to try to save him.  And so, when all the cards are on the table, when the curtain has fallen, when the tears and the anger get put on hold long enough for some clarity to this answer to come into view in my rear view mirror, do I wish I had known then what we found out just over two months after the diagnosis?  Probably not.

A Heartfelt Tribute

Like other families, my family has some quirky holiday traditions.  Some of them are from Christmases past, things I remember doing as a child growing up in my parents’ house, like letting our dogs, who lived outside, come into the den so they could be in the Christmas morning pictures with us, and like getting goodies in one leg of a pair of panty-hose instead of in our handmade stockings that hung over the fireplace.

In fact, one of the most vivid Christmas memories from my childhood was a tradition repeated year after year and was something that annoyed my dad greatly:  my sisters and I always had a “sister sleepover” in one of our bedrooms on Christmas Eve, and every year we found a way to get up after our parents had gone to sleep so that we could check out what Santa had left for us downstairs.  Every year, after our parents told us to go to sleep, we either stayed awake (feigning sleep when they checked on us before they went to bed) or we set an alarm so that after we went to sleep we could get up in the middle of the night.  One year, we woke up in the wee hours and went to check out what Santa had left for us, and I discovered that I had gotten a new bicycle!  Despite the freezing cold temperatures outside and the snow on the ground, I went out in my pajamas and without shoes (the pajamas were the kind with built-in feet, so I figured that was good enough!) and rode my new bike up and down the street until Dad caught me a little while later.  Another year on Christmas Eve, Dad told us that if we set an alarm before we went to sleep, he would just turn it off so that we wouldn’t get up.  Hmmm.  We retaliated by setting TWO alarms, one on the bedside table (which he later turned off) and a second one hidden under a bed.  Mission accomplished; sorry, Dad, but we were EXCITED!

Some of the holiday traditions from my childhood are continued in my family today; for example, after each present is unwrapped on Christmas morning, the wrapping paper is wadded up and thrown on the floor so that by the time all of the gifts have been unwrapped there is a mountain of paper in the room in which the kids are able to completely hide, which they do until someone counts, “1, 2, 3” and then a photo is taken as they jump up out of the pile of gift wrap.   We also always give our pets Christmas presents, and we always open gifts one at a time.  

A few of the things we usually do may not happen this year; we may take some time off and resume these things later, or we may just let them go.  One of the things I am mostly avoiding this year is listening to Christmas music; every song reminds me of my dad and fills me with such sadness that he is not able to be here with the rest of us.  Maybe next year those songs will be happy reminders for me of his beautiful singing voice and how he loved to listen to Christmas songs and hymns; we’ll have to wait and see on that one.

Thirteen years ago, my sister J had her first child, a daughter who was born too early and subsequently had to stay in the hospital in the Neonatal ICU for several weeks.  During her hospital stay in a city over 100 miles from where my sister and her husband lived, my family took turns visiting, and we stayed at the Ronald McDonald House near the hospital.  

Though the days while my niece was in the NICU were terrifying and exhausting, there was a happy ending: my sister got to bring her beautiful, healthy daughter home, a child who tomorrow becomes a teenager!  The story actually repeated just over a year later when my sister’s second child, another daughter, was also born early, this time for different reasons than the first time.  Another long hospitalization, another roller coaster ride, another extended stay at Ronald McDonald House, and – thankfully  – another recovery and another beautiful, healthy baby who is growing up just fine. 

Since that time, my family has been committed to supporting Ronald McDonald House Charities and its efforts to help critically ill children and their families.   When my dad went on ahead and people asked us to which charity we would like donations to be sent, we knew right away what Dad wanted us to say:  Ronald McDonald House Charities, an organization with a special place in all of our hearts and something that we associate with healing, good news, and new beginnings.

In thinking about the changes for my family this holiday season, we decided that we want to do something positive, something helpful and hopeful, and something to honor Dad, and so we signed up to cook and to serve Dad’s favorite meal – spaghetti, salad, and apple pie – to the children and their families at our local Ronald McDonald House on Christmas night this year.  We are all looking forward to this tribute; it’s a perfect example of the way that making an effort to be helpful is often at least as helpful to oneself as it potentially is to the recipients of that effort.

                                Happy holidays!

To Dad, whom I know will be there in our hearts as we take part in our Christmas tribute at RMH.

Part 9 - Going to Rehab

Continued from Part 8 

When we got to the rehab hospital, we checked in and got Dad settled in the bed in his new room.  He was happy because his incision had finally healed enough for him to wear his reading glasses (the staples were close enough to his ear that there had been concern previously about the ear piece possibly dislodging them), and so he relaxed in the bed reading the newspaper while Mom and I unpacked.  

Dad, reading the paper in bed just after we got to Rehab

The Rehab Director came by and did an initial assessment, with the focus being on Dad’s cognition and safety awareness.  I reiterated that we were seeking a short-term stay of about a week so that Dad could get intensive therapies to get him started in his recovery.  He said that the therapists would all do their initial evaluations and then the team would report back to us regarding their recommendations.  With a rehab background, I felt like I understood the process and told him that we would like to have input into the plan and to get recommendations about equipment needs so that we could get the house set up as soon as possible.

Two more physicians came by that night after I'd left to drive the three hours back home; both spoke to my aunt, who was sitting with Dad while Mom went home to change clothes before she spent the night with Dad.  Dad immediately liked the neuropsychologist (I think it was because the guy looked like a runner.); they talked for awhile about the benefits of inpatient therapy and agreed to talk again in a couple of days.  The next doctor was a radiation oncologist who informed my dad that he would be getting the initial phase of radiation at the rehab hospital, after which he could be treated at a facility closer to my parents’ house.  My aunt told the doctor that she thought we had been in contact with another radiation oncologist and that he should come back at another time to speak with my mom.  Dad was somewhat confused about the whole conversation; he wasn't clear about the fact that he had been diagnosed with brain cancer, much less that he was supposed to get radiation in the near future.  

Around 5:30 a.m. the next morning, the nursing tech came into the room and announced that he was there to assist Dad in getting bathed and dressed for the day.  As usual, Dad hadn’t slept very well the night before, and so Mom asked if the shower could be delayed.  “Nope,” nursing tech said, “We have about 40 patients to get ready for the day, and we have to do it before shift change at 7 a.m.”  Hmmmm.  In that case, Mom told him, she would help Dad get ready a little later.  The tech presented her with Dad’s therapy schedule for the day before he went on to the next room.  

The therapy schedule board at the Rehab Hospital

Waiting for therapy to start

It looked like it was going to be a busy day, just the kind that Dad typically would have appreciated and the kind we were expecting as part of the short-term rehab stay.  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 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 or the scheduled ended up not being able to be adjusted and some of his therapy got left out.  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.

Mom asked the OT about equipment recommendations during that first session, and the OT said we shouldn’t worry about that yet since she expected Dad to progress so quickly.  About mid-morning, my aunt came again to stay with Dad, and Mom went home for a wardrobe change.  During that time, the facility's radiation oncologist again paid Dad a visit; he told my aunt that he had been told he would be handling Dad’s radiation treatments at that facility.  My aunt told him that was incorrect, that we would be taking Dad to a specialist recommended by Dad's oncologist.  A few minutes after the first guy left, the rehab director came in and told my aunt that patients typically stayed in rehab there for a couple of weeks or more and that they would have a plan to present to the family in the next couple of days.  My aunt passed the info on to my mom and to me; I was uneasy about both of the communications because they were different from what I had heard when I was there just the day before.  In what became another unfortunate pattern in Dad's treatment, there were details to be ironed out with what was going on in this facility, and it was impossible for someone who was off-site to do any ironing.  

Next in our story … Part 10 – First Appointment with the Oncologist 

Sick Days

During the time that my dad was on chemo and therefore immunocompromised, I became acutely aware (read: completely paranoid) about being exposed to germs.  I’ve always been a little bit of a germaphobe, and, armed with the knowledge that it was entirely possible that something to which I was exposed could result in (1) my not being able to be around him once I realized I was getting sick, or – worse – (2) my accidentally contaminating him if I went to see him and didn’t realize I was getting sick, I was on perpetual high guard about germs and illness at that time.

All of that got me started thinking about sick day policies at work and at school.  Every school that I know of has an award for Perfect Attendance.  Many offer rewards for not missing school ranging from getting to choose one’s teachers for the next school year, getting to go to a party, getting vouchers for free stuff like ice cream and pizza (that seems at least a little counter-intuitive, doesn’t it?), and – the one I don’t understand at all because it’s something that would never have motivated me as a kid – getting to wear a hat to school.  At my kids’ school, students can earn the privilege of getting exempt from the final exam in any class if they end up with an yearly average of at least a 90 and have come to school sick amassed less than three absences ALL YEAR. 

Isn’t it a proven fact that a quicker recovery is much more probable if a person who is sick gets extra rest and takes in extra fluids, both of which are impossible if that person is on-the-job as a student or an employee?  If that sick person does come to work or school, it is a sure thing that he or she is not performing up to his or her full potential.  Oh, and, if that sick person has something that is contagious like a cold, isn’t it a certainty that he or she is spreading those germs all around, which could potentially result in a greater loss of productivity when others in the office or school catch the illness??

One of my kids did a science fair project once to determine which public place was the most germ-infested.  Samples from ten different locations around our town were put into petri dishes.  The one that grew the most grossness was the sample from the front door of City Hall.  I’ll leave that discussion for another time.  Second place went to the front door of the school building.  Yep, people are getting sick at school as often as they coming to school sick.

I don’t think that colleges care if kids have Perfect Attendance Awards listed on their high school resumes, and I doubt prospective employers do, either.  If I were in charge of hiring someone for a job, I would NOT hire someone who had a record of never missing work.  From my perspective, Perfect Attendance implies a person has almost undoubtably come to school or work sick and carelessly spread their germs around at some point.  I’m not advocating playing hooky or skipping school or being a slacker when there’s no legitimate reason; I just think it’s better to take a sick day when one is, well, sick!

Some of the funding for schools is based on the average number of students who are present at school each day, a figure that they call the Average Daily Attendance.  So school administrators are highly motivated to do their best to highly motivate their students to show up every day.  I think schools are, in general, also focused on the fact that kids who miss a lot of school aren’t likely to be learning as much as they could be.  That said, though, I think it’s a bad idea to have a Perfect Attendance Award that is so enticing that the consequences of coming to school sick outweigh the benefits of staying home to recover.  School employees typically get one sick-day off per month; why do kids, in cases like my children’s school, only get a few day off per year, or – worse – none if they want whatever Perfect Attendance carrot that is being dangled in front of them??

And don’t get me started on the value of mental health days.  What about an employee who takes a day off to go on a field trip with their child or to attend an awards program at their child’s school?  I think that’s commendable, much more so than it would be if that person missed the chance to be present for such an event. (Wouldn’t it be ironic if the employee missed work to go to see their child get a Perfect Attendance Award at school?)

Something I’ve learned since my dad got sick is that time is a finite resource and making time to be present in the lives of your loved ones should trump everything else – money, recognition, and awards for Perfect Attendance.  When I think about missing out on taking care of a loved one in their time of need (including oneself) just to avoid not missing work, Perfect Attendance seems anything BUT perfect.  I missed work whenever I felt I needed to be there with my dad while he was sick, and sometimes even when I wasn’t really needed but I just wanted to be with him.  From my perspective, there is so much more of a risk from not missing work or school in cases like that, and, I’m sure, Regret from something like that is a tough pill to swallow.

After my dad went on ahead on the Wednesday after the Christmas Break, my kids missed the next two days of school.  If ever there was a good reason for them to take a sick day, that was it.  We were all heartsick and heartbroken, but we were together, and that was the only thing that helped any of us at all.   After the memorial service, we packed up and headed back home on that Sunday, feeling obligated to get back to school and work on that Monday.  I wasn’t sure any of us would be able to wake up that next morning and go about our lives like things were normal.  And, thankfully, we didn’t have to.  I like to think that Dad had some pull Upstairs because we ended up getting the next two days out of school for snow, and so we had two extra days to grieve as a family unit, still not nearly enough but, as Dad would say, “Better than nothing!”

In China, health officials use a thermometer that looks like a gun to take people’s temperatures to limit the spread of germs for things like the Swine Flu.  I’m only half-kidding when I say maybe we need something like that to check people for fevers when they are coming into the school building or employees in a large company as they get to work.

I’m honestly not sure what the solution is for keeping kids or employees from not missing school or work when they aren’t sick or keeping the ones who are sick from coming, but I do know what is currently being done is not a good idea.  The fact that we obviously can’t rely solely on human decency and honesty and internal motivation makes me sick.