Part 32 – Falling

Continued from Part 31

Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy.  After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine."  It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.

This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help.  After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.

No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover.  We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.

On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, my sister stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters.  In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom.  As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him.  As she recounted later, he seemed more unstable and weaker physically than ever before.

A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch.  My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up.  He tried, she tried, and they tried together to figure something out, but nothing worked.  In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley.  She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage.  After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived.  Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.  

After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before.  My sister 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 extremely short therapy session in which Dad was very obviously totally disinterested and disengaged.  My sister 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.  Once they got him back into the bed, Dad immediately fell into a very deep sleep.  It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time.  At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong.  (By the way, the therapist 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.)

I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days.  In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.

That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service.  Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.  

Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom.  She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom.  Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance.  He fell against the wall and slid to the ground.  Mom yelled for my sister, who rushed in to help.  It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad.  They tried different maneuvers and various strategies but nothing worked.  Finally, in desperation, they called 9-1-1.

Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call.  The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face.  Two strong men carefully picked Dad up and put him back onto his bed.  They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition. 

Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room.  My sister called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.

Up next ... Part 33 - Hospitalization 2.0

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