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.
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| 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.
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.
