The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

Moments

I think most people only have a handful of times in their lives when something is happening and they realize in that moment that they are going to remember it for the rest of their lives.  Our other memories, things we think about after the event has come and gone - they come back to us unexpectedly, out of the blue, without our having consciously collected them along the way. But the ones that we know will stay with us as they are occurring are extra special, because we get to live them live in real time and in memory. 

As hard as it is to think back on the time when my dad was sick, I realize that the fact that we were aware of the risk (probability) that his time was limited allowed us to pull in those memories while we were focusing on the specialness of that time. Some of the time, I was functioning in the moment, but I was also deliberately hoarding memories of what was going on. I wasn't trying to hold onto those things because I thought Dad wouldn't be around much longer, though; usually I was logging those moments because I thought he would beat the damn cancer and we would be able to look back and think this is how we made it!!  And even though it turned out we didn't, at least we were afforded those memories, both the good and the difficult, to remind us of the fierceness of our love for one another. 

I dealt with my dad's illness with staunch denial of the fact that the devastating prognosis could apply to us, and, looking back, I think it turned out to be for the better that I wasn't aware of many of the last times I'd have with my dad because of that denial.

In going through life, we tend to think we will always have more time, which leads us to think that it's ok to rush around, to put things other than our loved ones first, and to worry about the past and the future instead of letting everything else fade away and just appreciating the simple physical presence of those we love.  Hearing the words "brain cancer" allowed me to stop all of that and to recognize that I needed to just be with my dad and the rest of my family, even though I didn't let myself think that there wouldn't be many more opportunities to do that same thing.   

And afterwards, I had to see not just that I'd been wrong in thinking the prognosis was wrong, but I also had to realize another hard thing as part of the grief: when the dust starts to settle after the first time you lose someone that you truly love, in the darkness it hits you that your days together with everyone else that matters to you are numbered as well.  And somewhere along the way in dealing with the horror of that realization, you may see the importance of paying attention, of stopping to smell the roses, of committing the moments to memory, because doing so is one of the few things that may possibly help to ease the deep aching when we do have to come to find out that the lasts were just that.

All the inconveniences, the irritation, the stressing out over things, the wishing for things that don't really matter at all seem so insignificant, so stupid, and in some cases so selfish when we put it into perspective.  At some point, for all of us, it will be too late.  We have to do our best to capture those moments now, before they actually become lasts, before there is no hope of recapturing them, before the regrets set in and that's all that we have left.

I still have moments when I don't believe it really happened or that he's really gone, even now, 23 months later.  Damn I miss him. 

What I wouldn't give to see this smiling face again //

"There are no goodbyes for us.  Wherever you are,

you will always be in my heart."  ~Mahatma Gandhi

One More Conversation

I recently read about how sometimes people who are going through the grief process think about what it would be like to have one more conversation with their loved one.

Thinking about that is complex for me, because, as far as I knew, my dad didn't think that he wasn’t going to survive his cancer diagnosis, and so the things that I'm guessing typically come up in those one-more-conversation type of exchanges weren't on the table for us to talk about when he was sick.  We didn't talk about end-of-life kinds of things during the ten weeks we had after his diagnosis; honestly, I don't know that any of us could have withstood that type of emotional wrenching, including my dad.  He knew that we loved him, and we knew that he loved us, and I think we thought there was still time to talk about everything else.

Part of me wonders now if we should have been straight up with him about what was going on medically; after all, he was an adult and maybe it was underestimating him or overprotecting him to keep that information from him.  He knew his diagnosis, but he didn't know the prognosis.  The bottom line, though, is that my family and I did what we truly believed was in Dad's best interests at the time, given what we knew and the resources we had.  We didn't LIE to him, but we did skirt around the truth about his prognosis and the severity of his illness on the few occasions he asked us about it, when he said things like "What if the chemo doesn't work?" and then we said things like, "It will, Dad! We just have to get through it."  He asked one of his doctors a few times about the usual prognosis of someone with his same diagnosis, and they told him the truth, but all of us, Dad included, discounted what they said because Dad wasn't "usual" - he was extraordinary.  Towards the end, he asked me a few questions like, "What's it like to die?" and "Do you think it’s cold in heaven?" (he hated to be cold), and I am so very glad that I answered him truthfully then.  Most of the things I said to him though, when I realized how very limited our time together was going to be were part of a one-sided conversation - when he couldn't talk back, and when I'm wasn't sure he heard me.  Looking back, I think it would have been so hard for us to say goodbye to him and then to have him say it back; the pain and sorrow that I see on his face when I picture this scene in my mind are heartbreaking, sending a stream of tears down my face, and that's when the vision is only in my imagination.  I think Dad might have viewed his own farewell message as quitting, and I am glad he was spared that, at least.  

So when I think about what our conversation would be like had he gotten an extra few minutes tacked on at the end of his life, it’s hard for me to picture anything other that what we did talk about when he was so sick.  Given that, I want to respond to the question of what would I say to him now - not as if he is still alive but as though he and I are able to communicate now, with him being wherever he is in the afterlife and with me being here on earth:

Dad,

There are a few things that I want to be sure you know, and if I can be assured that you realize and understand these things it will help me to better deal with my grief:

I miss you so much, every day.  You had such a big impact on my life and on making me into the person I am today, and the things you taught me and the lessons I learned as a result of having you for a dad are carrying forwards, still affecting me every day.  So much bigger than that, though, was your impact on the hundreds of other people you knew and even on the thousands of other people you came into contact with over the course of your life.  What you left all of us with – and all of the people with whom WE will come into contact with in the time to come – is your perspective, your view on kindness, and your joy and gratitude in all kinds of situations.  Because of you, I know that I am lucky, no matter what is happening around me.  Because of you, I know that I can decide to be happy, if I choose.  And because of you, I know that family comes first but that every person is important and that being kind and giving to others is a privilege, not a duty.   I wish you could realize how many people admired and loved you; I think while you were sick that you might have gotten confused on just how many friends you had because we discouraged people from visiting you then because we were so worried about you catching their germs.  I’m sorry that we didn’t find a way for you to see how cherished you were by so many.  Finally, I want you to know that we will be forever grateful to you for the way you fought so hard to hang in there through so much over those last ten weeks, I want you to understand how we are so appreciative of every bit of light you brought to us over the years, and I want you to know that I will think about you and try to make you proud every single day, for the rest of my life.  

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.  

  

 

Anger, Of Course!

Imagine, if you will, that you were just going about your business one day, living your life, and suddenly you became seriously ill or injured.  Now imagine that in the process you became disoriented and started having problems remembering recent events, and then you were told that you wouldn't be able to return to work or do the things in life that you loved doing, maybe for a short period of time, maybe forever.  In fact, you were told that you couldn't have your cell phone or your computer, you were confined to your hospital bed like a prisoner, AND you were in pain that never really let up at all.  

And then: you were told you had a terrible disease, one with a very grim prognosis.

Do you think you might just be more than a little angry in this scenario?

While my dad was sick - from the day he was first admitted to the hospital, through the time of the surgery and the not-so-great stay in rehab, and finally to the time of his hospitalization when he was so weak that he literally couldn't lift his head off the pillow - we only saw a few brief bursts of anger from him.  It's unbelievable, really, given all that was going on with him, the little time he spent expressing this emotion, probably about three hours' worth total over the course of the ten weeks.  

If you know anything about traumatic brain injuries and neuroanatomy, you know that based on the very area of Dad's brain where the tumor was and the multiple traumas that he suffered, coupled with the massive dose of steroids he was on and the utter lack of sleep he got during that time, plus (let's not forget to mention) the (can't think of how else to phrase this that will convey the same meaning) SHITTY HAND he had been dealt in being diagnosed with brain cancer, Anger should have been present every moment of every day for him.  I will venture to speculate, though, that several things played a part in the fact that it wasn't: first and foremost, Dad's perspective, the usual (pre-illness) evenness of his emotions, and his internal happiness meter, which was almost always in the good-to-great range.  Next on the list was probably the fact that during that time one or more close family member was always right with him, which, as comforting as I like the think that was for him, likely resulted in an extreme effort to be positive and to hold it together by HIM so that he wouldn't risk upsetting or disappointing us, in his eyes.  Another factor probably came from Grief; I think lots of time Grief gets a bad wrap, kind of like peer pressure does for kids in many cases.  Sometimes, though, also like peer pressure, Grief can be useful - and for Dad as it was for the rest of my family at the time, the Shock and the Denial it brought about allowed us to Hope and even just to function in what was an almost impossible situation.  For Dad, the understanding of the horror of what was going on that he was able to grasp was likely tempered by the Denial that covered both him and the rest of us. Finally, I think ironically it is possible that the brain injury itself, with the effect it had on his short-term memory, might have allowed Dad to be short-sighted enough regarding his limitations and most especially his prognosis that he was able to dodge much of the Anger that logically should have been there.

The few episodes of Anger that I saw from him during those weeks seemed to stem from frustration, usually aimed himself for not being about to do basic things as effortlessly as he should have been able to, very understandable given the circumstances.  A couple of times, I witnessed him getting angry with another family member, and a few times he snapped at me, mostly from impatience when he was in pain. All were, in the eyes of those of us who were taking care of him, completely justified, and, from my perspective, the only reason they are worth mentioning at all is because it's such a wonder they didn't happen much more often.

One of the biggest bouts of anger he had occurred during a P.T. session on one of the last days he was in rehab.  I had just gotten to the rehab hospital and was rounding the corner in the hallway on my way to the gym, and, when I heard Dad's voice, I stopped short of where he could see me so I could see how he was doing in therapy without distracting him.  As I peeked around the corner, I saw Dad lying on his back on the mat in the Therapy Room, and I heard the Physical Therapist telling him to do ten leg lifts with each leg.  Obviously just wanting to get the whole thing over with, he hurriedly and haphazardly lifted one of his legs a few times and then said he was ready to go back to his room. The P.T. brusquely told him that he wasn't done, to which he responded, "Oh, HELL YES I AM.  A couple of weeks ago, I could run a marathon and not even be tired; I don't want to work on stupid leg raises."  My aunt, who was sitting in on the session, tried to ply him first by playing on his competitive spirit ("Come on, Bill!  Show them what you're made of!" she cheered.) and then, when that didn't work, she tried joking with him ("And a one, and a two, fly like a butterfly, sting like a bee," she chanted, after she'd laid down beside him on the mat and as she enthusiastically did the leg lifts he was supposed to be doing.).  Neither tactic was effective; in fact, he was getting angrier by the minute, and he finally shut things down with a burst of expletives that I won't repeat here.  Suffice to say, he was angry, he'd had all he could take for the day, and he got his point across in the best way he knew how in that moment.

I'm sure it's difficult not to equate sickness and weakness with a feeling of failure.  I can't even start to imagine having to go from doing what Dad was doing to not being able to do what he couldn't, literally overnight.  Thinking about that while he was in the midst of the fight made me realize that beating cancer isn't just about getting rid of those cancer cells.  It's about fighting to stay on top of that win-lose mentality, it's about finding a way to accept just enough and to forge ahead in a quest for just enough, and it's about charging full-speed ahead while somehow at the same time finding a way to stop and smell the roses and to create and hoard those memories along the way.  

From my family's experience when Dad was sick, I became acquainted with the harsh reality of how tough cancer treatment can be on one's body and, just as importantly, on one's spirit.  The very process of having to make what ends up being literally life-or-death decisions based on the Cliff-note version of information given while dealing with the illness,  the loss, and the reality of things is exhausting, to put it mildly.  It feels like it must feel to stand at the bottom of Mt. Everest without any experience and without a trustworthy guide or a map of any sort.

On the day that Dad went to the radiation oncologist for the second time, I had to work and so I didn't go with Mom to take him that day, which ended up being the day that he had to have the face mask made to hold his head in place for the radiation treatments that we thought were coming up.  Afterwards, when I asked him how it went, he told me it was no big deal.  I've since learned, though, that getting the mask made is not no big deal (To read a first-hand account of the process, click  HERE), and I cannot imagine how scary and confusing it must have been for him.  

And that, along with many other things that happened along the way while my dad was sick, makes me feel the burn of the anger that I don't think will ever fade.  

"I know I can't be with you; I do what I have to do.  I have the sense to recognize that I don't know how to let you go."