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.  

  

 

Part 41 – The Turning Point

Continued from Part 40

I suppose there comes a time in the life of almost every person with a terminal illness when they and the people around them realize they have turned a corner that is not for the better as they had hoped.  It’s that day, that hour, that moment when the stakes are changed and so is one’s perspective, when the focus of treatment becomes different from when it was a Cure.

I think that Turning Point in Dad’s illness was different for my mom, for each of my siblings, and for me.  For Mom, I think it was on our trip to Duke, first when she realized that Dad’s concept of time, which had always been absolute in him, was totally gone, and then when we got to the Brain Tumor Clinic and she noticed that Dad was the only patient there with his level of impairment.  As we rolled down the interstate and then as we rolled his wheelchair into the clinic the next day, her hope for a Cure was dashed.  (Side note:  People around that time kept telling us that we just needed to get used to a New Normal, and every time I heard that, I wanted to scream, “TO HELL WITH THE NEW NORMAL!  I WANT OUR OLD NORMAL BACK!”)

Our brother Lee has said that he saw the changes in Dad as so blaring when he saw him around Thanksgiving that he felt in his gut that Dad was not going to get better.  

For my sister Jennifer, the Turning Point came on the afternoon when she was at our parents’ house alone with Dad before his second hospitalization -- not when he fell, but after that, when he was in the bed, looking so frail, so helpless, and with his breathing so labored that she felt compelled to videotape it so that she could believe it, process it, and document it.

The Turning Point for my sister Nancy came a little later in our story, on the day after we brought Dad home from the hospital for the last time, as she listened to his voice get weaker and weaker and as she watched him, wrapped in blankets as if he were in a cocoon, being picked up by our husbands so they could move him from the bed to the couch.  He was so afraid that he wouldn't be able to communicate with us for much longer.  We were so afraid that he would fall off the couch because he could hardly move and that it would hurt him to move him.  We were all just so incredibly afraid.  

The Turning Point for me came as a result of a one-two punch on the second full day after Dad was moved out of the ICU into a regular room, three days before New Year’s Day and two days before we took him home.  The oncologist came by for his morning rounds and told Dad “the only thing in the way of going home for you is your strength.”  He ordered more OT and PT, and thus the gauntlet was thrown down; so depleted and yet so determined, Dad began talking about how he was going to exercise and eat,  “even more than before,” he said.  “I just want to do whatever it takes so that I can go home!”  

That afternoon, the OT stopped by and, with Dad lying in the bed, had him do 15 minutes of arm exercises (“Is that IT??” I wrote in the margin of the Notebook when I realized the session was ending after that.), and then the PT came in and helped Dad sit on the side of the bed for ten minutes.  After she had left, Dad realized that was going to be the sum total of his rehab activities that day, and he said, “I really think if I am going to have any chance of getting out of here, I should get up out of the bed.”  I summoned the nurse and a nursing assistant and told them of our plan.  Both were hesitant and doubtful, but, I thought, they don’t know my dad and they don’t know me – we ARE going to make this happen.  

Gritting his teeth and with almost total support to keep his legs from buckling and then with full support to slide his feet one at a time across the floor, Dad made it from the bed to the hospital-grade recliner before collapsing into the chair.  “Let’s see if you can stay up in the chair for 30 minutes,” the nurse said, as she and the tech left the room.  The next half-hour seemed excruciatingly long; my sister and I tried to cheer Dad on while he gutted out each minute.  He said he was cold and that he felt “achy all over,” and then, when his time was up and after we had helped him back into the bed, he got a terrible muscle cramp in his thigh and hip.  We could actually see the muscles contracting as Dad writhed in pain after the transfer.  We tried massage, we tried repositioning, we tried stretching, we tried a heating pad, and, finally, amidst deep and wounding pain, he begged for medicine.  The orders on the chart didn’t include anything that would even touch the pain.  DAMN the process that it takes to have to call the doctor to get permission for pain medication for a terminally ill patient.  Isn’t losing control and slipping away torture enough?  It took well over an hour to take away the pain from that horrible cramp in Dad’s muscle, and, as we learned over the next few days, the trauma of the episode could not be erased from his memory, taunting him and making him afraid after we left the hospital that we would not have enough medicine to temper his agony if the pain came back. 

Despite the pain and exhaustion, Dad took in a lot of calories that day, so much that by that evening he was nauseous from having eaten so much more than he had been used to eating.  When the dinner tray came that night, he said with a mixture of dread and fear in his voice, “Oh, no!  Not food again! I can’t stand eating – it makes me hurt worse!”

Watching him that day, I could see the anxiety and the weight of the burden of the task that he saw before him; eating had become not just an obligation and an encumbrance but an insurmountable challenge for him. Over the course of the days before, he had started apologizing and making excuses about not eating whenever I walked into the room, and, when I saw the deep remorse and the sorrow in his eyes, I knew it was not really a choice that he could make anymore. His body just could not do it. “The Deal is off,” I told him that night with tears in my eyes.  “I am so proud of you for trying so hard to eat, and from now on you can eat whatever you want, whenever you want, or not.” 

“Will I still get to go home, though?” he asked me earnestly.  

“Yes, Dad,” I told him.  “I just don’t want you to worry anymore.”  And then I turned away from him to hide the flood of tears that streamed down my face, an outpouring that would go on for the next week as we made the arrangements to bring Dad home, as we cared for him at home as his condition continued to worsen, and as we watched him slip away.

Coming Soon ... Part 42 - Gearing Up

Part 3 - Whew, I Need a Vacation!

Even though the nights in the ICU were long and hard and scary, we did our best to make the time during the day not that way for Dad in the days leading up to his surgery.  We talked him into drinking milkshakes and eating hamburgers ("I'm going to have to have to run 20 miles to burn this off!" he declared before he consumed each thing we brought him.) We tried to keep our terror at bay in front of him.  We took turns spending time with him; between my mom, my aunts, my sisters, and me, one of more of us was with him around the clock.  We wanted to comfort and protect and care for him; it was start of our Whatever It Takes Plan, and we were solidly committed to being right there for his sake and for ours.


There were lots of medication adjustments during this time; it seemed like the plan was being cobbled together, and I desperately wanted the doctors to get their act together and figure it out!  Dad was being given a massive dose of steroids to address the swelling in his brain around the tumor site.  With the steroids, he couldn’t sleep.  The nurses kept asking him what his pain level was on the pain scale, and he almost always said it was around a 5 or 6 out of 10.  Sometimes the nurse that asked thought that number warranted pain medicine for him; sometimes he or she didn’t.  When he got the pain meds, he dozed for a short period of time, but, like during that first night, he was very restless, anxious, and talkative even in his sleep.


The oddity of the comments Dad made in his sleep was increasing; at one point he thought there were monkeys sitting on a couch in his room. (There were no monkeys and no couch.)  Some remarks were casual; he actually said “I’m bored” in his sleep at least ten times each night.  Some of the utterances he threw out didn’t make sense in the context in which he said them (“I’m going to the oyster bar and I’m going to eat a dozen!”), but we were usually able to piece things together and make an educated guess as to what he was talking about (often, for some reason, New Orleans).  Even in his sleep, he chattered about a few things he hoped to be able to do when he got out of the hospital; several times, he exclaimed, “Whew!  I need a vacation!”


He was obviously aware of the gravity of the situation on some level, because some of his sleep-talk involved worrying out loud about his health, about Mom, and about work and finances.  He wished aloud that his dog Buddy could sleep in the bed with him and wondered when he would be able to exercise again (“Hopefully this weekend,” he said, in answer to his own question.)  In between the short bursts of sleep, Dad was mostly oriented and very chatty; he talked about the fact that it was his birthday and how much he wanted to get out of the hospital to do something to celebrate.  He asked about when he could see his grandchildren and his mom, who was on hospice in a nursing home nearby.  It was all very overwhelming and very sad, and it made us want to close ranks, to hover over him to try to protect him, as we anxiously waited the surgery that we hoped and prayed would clear out that damn tumor that was causing all of this.


On the day before the surgery, the neurosurgeon paid Dad a brief visit during which he informed us that the full-body CT scan had shown no evidence of cancer in any other part of Dad's body.  We rejoiced, although that turned out to be both premature and naive; we later found out that it actually would have been better news if the cancer in his brain was the result of another type of cancer that had spread from elsewhere in his body.  (Other cancers are typically less aggressive and offer more treatment options than the type that Dad had.)  At the time, though, we were happy for what we thought was Good News; it helped us to steel ourselves for whatever else was coming down the pipe.


Dr. Personality (NOT) also ominously informed us that the MRI had shown a mass that was 3-4 cm in size on the right side of Dad's brain and that the tumor was irregular in shape which would make it more of a "surgical challenge."  Luckily, Dad was only half-listening at the time, and, to keep from alarming him, we asked the doctor to go out into the hall with us to discuss the rest of the findings.  There, in the glass hallway of the ICU, the neurosurgeon told us he thought the mass was brain cancer and that Dad would likely be in the hospital for three days after the surgery and then would start a pill-form of chemo plus radiation about ten days later.  We knew that Dad could see us through the glass wall, and so we held our faces still so as not to alarm him.  Before I could get the notebook with our list of questions, the doctor flew off down the hallway, leaving us with even more to worry about.

The neurologist came by later that day, and he answered as many of our questions as he could.  Some things, he said, we just had to wait and see about; I hated that - I wanted a Plan!  When we reported the lack of sleep and the restlessness Dad was experiencing at night, the doctor wrote an order for a different nighttime medication in hopes that Dad’s quality of sleep would improve.  He said Dad had to continue on the high dose of steroid and also on the anti-seizure medications indefinitely. 


Dad had had an EEG the day before to check for residual seizure activity, and we asked the neurologist about the results.  He checked the file and said the results weren’t back, which began the game of Pass The Buck/I Don’t Know – Ask Someone Else that we played with the medical staff over the next three months.


In between doctor visits, the nurse brought in a consent form for my mom to sign for the surgery.  I thought it was peculiar that it was the nurse who was assigned to go over the risks and then to get the permission, especially considering how very risky it would be, rather than the two physicians who had been by earlier; I wondered if the doctors just couldn't be bothered by such a task or if they thought the nurse had a better way (and chance) of doing what needed to be done in this case.  The risks were all there on the consent form in black and white; we hadn't been given any other options at all, though, so Mom signed what she had to sign and we steeled ourselves so that we could go back into Dad's room with smiles on our faces, as his Guards and his Warriors, ready to face whatever needed to be faced.

Coming soon … Part 4 - Numbers

This One's For You, Dad

There are a lot of things about my dad that someone who didn’t have the privilege of knowing him well might not really understand - things that were such a part of him, things that really made him the person he was, things that I want to be sure to always remember. Here are a few:

*Many times when he wanted to buy my mom a present, he couldn’t figure out what to buy, and so he went to a store that sold women's clothing and just bought everything on one of the manikins, including the shoes and jewelry. He would point to a manikin and say to the sales clerk, "She looks about the same size as my wife. Can I please buy everything she has on?"
*He tried desperately to keep up with technology, including social networking, because, as he said, "I need to stay connected!" However, he often got things in this category confused. Despite many lessons from his grandchildren, he never understood how other people could see what he put on his Facebook profile. And he sometimes got mixed up about the term "text" and called it "twist."
*Whenever he competed in races that he didn't really have a chance of winning, he often made up a category and proclaimed himself the winner of that. For example, once after a biking race, he said, "I didn't win my age group, but I was the first guy over 50 to finish who didn't wear biking shorts." (He wore running shorts when riding his bike early in his biking "career.")
*He was preparing to do an Ironman triathlon, at the age of 67.

*He thought it was a good idea to “round up” in the amount of exercise time – he regularly told my mom that he was going to run or bike for a certain amount of time and then actually went for longer, basing his time on how long he thought it would take her to notice he had exceeded his original “bid”
*He once told his grandchildren to load up in the car for a “big surprise,” which ended up being a sale he had found for some fake-Croc shoes AT A GAS STATION.
*He LOVED to try to jump out and scare people, and this became a long-standing family joke because he was TERRIBLE at hiding. And every ghost story he told ended the same exact way, with him saying something like "And the boy went up the ladder, climbing the first step, then the second, then the third, until SOMETHING GRABBED HIM - his friend!" (Even when the kids were young, they weren't at all scared by his ghost stories.)
*Anytime a holiday was coming up that involved a gift for him like Father’s Day or his birthday, he would suggest (repeatedly) that we give him the gift ahead of time. Then when the actual holiday rolled around, he would jokingly say that we didn’t give him anything. Which brings me to what made me think of some of these quirks …

Last night, I dreamed that I was talking to Dad on the phone, and he laughed and said, “Thanks for calling, but what did you get me for Father’s Day? I don't think I got anything from you.” After thinking about it, I now have a new plan:

CANCER IS NOT GOING TO KEEP ME FROM HONORING MY DAD ON FATHER’S DAYS FOR THE REST OF MY LIFE!

So here’s what I got you this year, Dad, and I hope you like it: