Part 16 - Holding On

Continued from Part 15

The uphill climb continued during Dad’s homestretch in rehab; he was counting down the days until he could go home, and so were we. Dad was very bored and frustrated with the therapies and the routine there.  He didn’t see the point of 99% of what was going on in the therapy sessions; he hated that he had to work on simple arm and leg exercises and even just walking with a walker, and so did we.  There was so much unfairness and turmoil, and having to swallow his pride on a daily basis was rough stuff.  When I was there to observe, I noticed that the therapists didn’t explain to Dad why they were having him work on the things that they were, things that seemed far beneath the pre-tumor person that he was.  It’s possible that he wouldn’t have paid attention or remembered or appreciated the explanations had they been forthcoming, but I thought it was a shame that they didn’t even try to make things clearer for Dad.  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.

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; I wanted to avoid finding out otherwise, although I knew there was a possibility that something much more detrimental and sinister what would eventually be unveiled.  

The uber-early morning wake-ups by the staff continued, as did the seemingly fly-by-the-seat-of-your-pants rulings on how (or if) Dad’s crazily fluctuating blood sugar levels and the headaches should be addressed.  Several days would go by without Dad’s blood sugar level being checked at all, but then a nurse would check it and find it to be abnormally high, after which it would sometimes be treated and sometimes not.   Dad’s eating habits were erratic; he frequently requested sweets and junk food, which was very out of character for him.  We asked the nurses and doctors many times if we should limit the sugar he ate, and each time we were told not to worry about it because the out-of-control numbers were related to the mega-doses of steroids he was having to continue to take.  At best, it was frustrating; at worst, it was alarming.

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 was unhurt, 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.   I never got a phone call from the social worker, the woman whom we had been told was our Case Manager; very obviously, 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 I was having to make a list and chase down the support we needed on this; I shutter to think what would have happened otherwise.  Dr. Rehab informed me when I called that Family Education Day would be two days before Dad was discharged.  I 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.  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.  (**Side note:  I called the oncologist and explained about the wheelchair, and one was delivered, which was nice, but it was an extra-wide!  My 5’10” 155 pound Dad did NOT need an extra-wide anything; in fact, pre-tumor Dad would have been highly insulted at the width of the wheelchair that was rented to him.  I was half-relieved and half-saddened by the fact that he didn’t notice the size of the wheelchair and that he didn’t mind that I’d insisted on getting him a wheelchair.)

Besides the tediousness of the therapies, the lack of privacy, the boredom, and the early-morning wake-ups, something else that Dad really hated at rehab involved eating.  As I posted on the Care Page during this time, “Contrary to what we usually hear about hospital food, Bill says the food at the rehab center is actually pretty good.”  What he didn’t like was having to eat in bed or sitting in a wheelchair with his plate of food on the rolling hospital table for every meal.  He still could not feel much of anything on his left side, which made the motion of plate-to-mouth difficult.  More often than not, he ended up with food spilled on the table, on the floor, on himself, or any combination of the three.  He frequently got very annoyed with himself when he spilled; we tried to clean it up quickly and convince him it wasn’t a big deal, but he was irked and dispirited nonetheless.  

Dad’s buddy the neuropsychologist came by a couple more times that last week; Dad still thought the guy was great, but the guy was getting on my nerves.  At one point, Dad wondered aloud how he had gotten brain cancer, and I heard Dr. N tell Dad that there were some studies indicated that “there could be a link to excessive cell phone usage.”  Great – let’s add Guilt to the other mess of emotions Dad is trying to cope with.  (**Side note:  His saying that would have been bad enough if it were true; it was all the worse because to date no valid studies have conclusively linked cell phone usage with brain cancer.  Jerk.)

Mom asked Dr. N what we should do about finding a neuropsychologist for follow-up after discharge, and Dr. N gave us the name of someone whom he said was a friend of his and was "very good."  Coincidentally, she was affiliated with the practice where our oncologist worked.  That sounded like a good plan, except that when I called to schedule an appointment with her, I was told that she was out on maternity leave through the end of January.  Dr. N himself saw patients on an outpatient basis, but his practice was located even further away from my parents’ house, which would’ve meant about an hour drive each way for them, which didn’t seem reasonable.  He offered no other ideas, and so I added that to my list of things to figure out after discharge.

My mom and I worked our way through a stack of paperwork that we had to FedEx to Duke, and Dad got another MRI scan which was sent to the Brain Tumor Clinic there too.  Dad had another appointment with the Radiation Oncologist; this time he got fitted for a special face-mask which he would wear to hold his head still during radiation treatments that were planned to begin soon after the Duke trip. 

The promise of a nightly Foster’s was a powerful reward for Dad; each evening he savored the beer while he made plans of what needed to happen so that he could sleep better that night (“I need total darkness in here!”  “I’m going to read for 30 minutes and then no talking!”  “I’m going to make myself stay up until 11 p.m. and then I’m going to eat some peanut butter crackers to help me sleep!”)  Every night was a hopeful strategy, none of which worked.  Like Dad, we were all just holding on until Going Home Day.

Coming up next in the Behind The Scene Story ... Part 17 - Going Home