Monday, May 16, 2016

Chapter Four, Part 2: Missing the Boat

In spite of the involvement of the many doctors and other health care professionals who were on the case at varying points along the way during the time Dad was sick, one thing that was consistently lacking in his treatment was any kind of quality professional emotional support.  Looking back at everything that was going on and considering the many concerns we had about Dad during those ten weeks, it’s really a no-brainer (pun intended) that some kind of psychological intervention should have been provided for him from Day One. 

As I’ve said, Dad had an uphill climb in many areas from the start of his illness.  First up: the neurological problems - the tumor that was so large it was causing an actual shift of the normal structures in his brain, the swelling around the tumor site in his brain, the damagethat resulted from the minutes he went without oxygen to his brain after he stopped breathing during the MRI just after he got to the hospital, and the probable harm suffered from the two grand-mal seizures he suffered before he was put on heavy-duty seizure medications.  Next on the list were the pharmacological issues – thatanti-seizure medication, the chemo (Ever hear of chemo-brain?), the massive doses of steroids, the out-of-control blood sugar issues that resulted from the massive doses of steroids, and, of course, the pain medicines.  Last but in no way least was the emotional stress that anyone with a devastating diagnosis would have, amped up exponentially because of the confusion and roller-coaster mood swings that come from the aforementioned (particularly, injuries to the frontal lobe of the brain and the steroids, both of which typically wreck havoc on one’s emotions).  Add to that the utter lack of sleep and the total loss of control that Dad had to contend with and it’s surprising that he was able to do any of the things that he did during the time that he was sick.  He was, simply put, tough and amazing beyond words and beyond belief. 

But, with all those strikes against him, all of which were absolutely evident to any trained medical professional who had access to his medical records, how in the HELL did each and every one of them miss the boat entirely with regards to such an important part of Dad’s treatment???  Knowing what the doctors knew, being fully aware of the seriousness - actually, of the incurability - of his disease, wouldn’t it seem like Brain Cancer Care 101 to bring in someone to address emotional issues? 

But it never happened; the doctor was definitely NOT in to provide that vital care – and that is something that unquestionably caused Dad to suffer.  For as long as I live, I will be angry about that and feel guilty that I personally didn’t recognize what should have been provided and make it happen.  Actually, I feel like there should have been a counselor or psychologist or social worker or SOMEONE with that kind of knowledge and experience to tell us what to do in many instances involving psychological concerns, to let us know what to expect in that area, and to help us be prepared to handle things better so that we could better care for Dad emotionally.  We needed to know how to talk to Dad about things like his diagnosis and his future.  We were just making things up as we went along, going on gut feelings but really without a clue as to what we were doing as far as giving him the emotional support that he so needed and so deserved.

Addressing tough emotional issues with someone with a terminal illness has got to be one of the hardest things a person can ever have to do, one that we don’t have any knowledge of how to handle and one that matters so much.  There are no take-backs, no do-overs, and no second chances when the hard, scary questions come up, and it was so utterly unfair that we were left to fly by the seat of our pants on this.  We could love him with all of our might, and we certainly did that, but we needed help with the rest of it.

The only time Dad’s mental health was touched on at all during the whole ten weeks that he was sick was by a neuro-psychologist who worked at the rehab facility.  My guess is that this guy is routinely called on to consult on all cases there, not just the brain tumor/terminal illness/neuro-related ones.  When he stopped by to meet Dad on the first day we were there, Dad liked him immediately, although - two truths be told - Dad pretty much liked everybody, and I think he was especially partial to this guy because the guy looked like a runner, although I have no idea (and neither, of course, did Dad) if he was an athlete of any sort or a Couch Potato who just happened to be tall and thin.

Dr. Neuropsychologist was nice, and I think he was good enough at his job; he just didn’t do enough in our case.  On the five or so occasions while Dad was in rehab that he spoke to Dad, he threw out some colloquialisms like “Rehab is definitely the place to get better!” and “You just have to find a New Normal!” At one point, he suggested Dad start writing about his feelings in a journal.  Um, hello?  He can’t write legibly because he has almost no sensation in his dominant hand, plus, except for having kept years of logs of running times, he is one of the least journal-y types of people who ever walked the earth.  Dr. N was just one in a long string of medical people who didn’t really know my dad, and, really, who didn’t care enough to do one single thing outside the scope of the job description.  I called it "watching the Cancer Channel;" these people evidently are ok 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.  They leave the impact at the office. 

Just after our first visit to the radiation oncologist’s office, Dad started asking some of those tough questions, many of which surfaced and re-surfaced in the middle of the night.  Mom was left to field the majority of them on her own because she was with him the most.  She answered the ones she could and wrote down the others in the Notebook; Dad told her to what to write so they could ask a doctor about those things later.  When Dad asked for information from the Rehab Director, the guy answered some questions but left Dad hanging on others.  Many of them he answered incompletely ("You will get chemo but I'm not sure for how long."), and for some he used hard-to-understand medical terminology (“Let’s talk about neuroplasticity!”), both of which I felt were worse than not answering at all.  Mom made a new list of the leftover questions – things like“Can I get well?” - for Dad to ask the oncologist at the next appointment, which unfortunately was not scheduled to occur until Dad finished rehab and had gone to Duke. 

The second time Dr. N came to visit with Dad in the rehab hospital, he went into detail about what he assumed the treatment would be for Dad’s type of cancer, which was odd because at that pointno one knew what the protocol would be, since we had yet to have the consult at Duke.  Regardless, though, I guess the guy was trying, and Dad appreciated having things explained to him by someone he for some reason liked.  Dr. N asked Dad if he was sad or depressed, and Dad - ever the “I’m Fine!” guy in front of the doctors - told him no.  (***Side Note:  Doesn’t that seem to like a Red Flag?  Who WOULDN’T be sad or depressed given what Dad had been told?***)

When Mom told me over the phone about the list of questions that Dad had dictated to her to go in the Notebook, a Red Flag went up for me; I felt like Dad was starting to get a true picture of the direness of the situation, and in a way it seemed like a good sign that he was moving past saying things like “I don’t have real cancer.”  But Mom also told me that Dad had gotten really angry that afternoon because he had lots of trouble when he was trying to type an email for his job.  So, “I’m fine” attitude be what it may, Dad was obviously suffering, and rightfully so.  I called the Rehab Director that night and told him we thought Dad needed medication and more intervention for anxiety and/or depression; his answer was that Dr. N had spoken directly to Dad just that afternoon and had been told that Dad wasn’t depressed.  Hmmmmm.  I am ashamed to say that I let the matter drop for awhile after that; we were juggling so many balls in the air, but that’s no excuse.  I put it on my ever-growing list of things to ask the Duke doctors about a week later and went back to plugging away at worrying about and trying to address the many other critical issues going on. 

Maybe it’s too much to have expected medical support on this, maybe the ball wasn’t dropped by them because that’s just not how the system works, and maybe I am just looking for someone besides myself to blame.  Maybe it wasn’t only the health care workers who missed the boat.

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