Saturday, October 22, 2011

The Way We Were

Here we are one year from the day that Dad couldn’t finish his run*, when he was taken by ambulance to the hospital and the mass was discovered in his head, when he stopped breathing for several minutes and had to be resuscitated in the middle of an MRI scan.  When his life – and the lives of everyone who knew him – changed forever. 

I really don’t want to mark this date on my calendar
Hell, I don’t want it even to have happened, and sometimes I still don’t believe that it did. 

Here’s one thing I’ve been thinking about lately as I go back in my head through the story of what happened a year ago:  Dad regularly used to half-jokingly say that he hoped he would “go out running.”  What better way to go, he pointed out, than when you're doing something you love?  Certainly he didn’t want to officially Grow Old; he would not have done well sitting in a rocking chair on the porch all day.  And who among us wants to stick around so long that we lose our independence and suffer physically and emotionally?  No one I know, most especially Dad.  He hated inefficiency and down-time. 

 In many ways, for Dad it would have been so much easier to go to the light when he stopped breathing in that tube a year ago.
I believe he had the chance to go on ahead then and that he made a conscious decision to come back to us, not for his sake but for ours.  I think a person who wasn’t as strong or as determined or who didn’t have as much love and devotion for their family as Dad did would have made a different choice in that situation, and I am more grateful to him than I can ever express for the choice that he made on that terrible day last October.

Dad gave up his chance to go on ahead when he could have that first time; he devoted the end of his life to being with us a little longer.  I don't think everyone has that chance - or the courage to take it when they do - but he did.  He put all of his effort and strength into it, for us.  And, as much as I long for the way we were, I am so incredibly thankful that he held on for as long as he possibly could.

*To clarify: October 23, 2010, was the day that Dad was taken to the hospital and had the mass detected.  I keep picturing myself on the airplane on the way back from a conference at the time he was in the ambulance, late in the afternoon on that Saturday, and that's what inspired the timing of this post on October 22, 2011.  

Friday, October 21, 2011

Part 9 - Going to Rehab

Continued from Part 8 

When we got to the rehab hospital, we checked in and got Dad settled in the bed in his new room.  He was happy because his incision had finally healed enough for him to wear his reading glasses (the staples were close enough to his ear that there had been concern previously about the ear piece possibly dislodging them), and so he relaxed in the bed reading the newspaper while Mom and I unpacked.  

Dad, reading the paper in bed just after we got to Rehab
The Rehab Director came by and did an initial assessment, with the focus being on Dad’s cognition and safety awareness.  I reiterated that we were seeking a short-term stay of about a week so that Dad could get intensive therapies to get him started in his recovery.  He said that the therapists would all do their initial evaluations and then the team would report back to us regarding their recommendations.  With a rehab background, I felt like I understood the process and told him that we would like to have input into the plan and to get recommendations about equipment needs so that we could get the house set up as soon as possible.

Two more physicians came by that night after I'd left to drive the three hours back home; both spoke to my aunt, who was sitting with Dad while Mom went home to change clothes before she spent the night with Dad.  Dad immediately liked the neuropsychologist (I think it was because the guy looked like a runner.); they talked for awhile about the benefits of inpatient therapy and agreed to talk again in a couple of days.  The next doctor was a radiation oncologist who informed my dad that he would be getting the initial phase of radiation at the rehab hospital, after which he could be treated at a facility closer to my parents’ house.  My aunt told the doctor that she thought we had been in contact with another radiation oncologist and that he should come back at another time to speak with my mom.  Dad was somewhat confused about the whole conversation; he wasn't clear about the fact that he had been diagnosed with brain cancer, much less that he was supposed to get radiation in the near future.  

Around 5:30 a.m. the next morning, the nursing tech came into the room and announced that he was there to assist Dad in getting bathed and dressed for the day.  As usual, Dad hadn’t slept very well the night before, and so Mom asked if the shower could be delayed.  “Nope,” nursing tech said, “We have about 40 patients to get ready for the day, and we have to do it before shift change at 7 a.m.”  Hmmmm.  In that case, Mom told him, she would help Dad get ready a little later.  The tech presented her with Dad’s therapy schedule for the day before he went on to the next room.  

The therapy schedule board at the Rehab Hospital

Waiting for therapy to start

It looked like it was going to be a busy day, just the kind that Dad typically would have appreciated and the kind we were expecting as part of the short-term rehab stay.  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 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 or the scheduled ended up not being able to be adjusted and some of his therapy got left out.  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.

Mom asked the OT about equipment recommendations during that first session, and the OT said we shouldn’t worry about that yet since she expected Dad to progress so quickly.  About mid-morning, my aunt came again to stay with Dad, and Mom went home for a wardrobe change.  During that time, the facility's radiation oncologist again paid Dad a visit; he told my aunt that he had been told he would be handling Dad’s radiation treatments at that facility.  My aunt told him that was incorrect, that we would be taking Dad to a specialist recommended by Dad's oncologist.  A few minutes after the first guy left, the rehab director came in and told my aunt that patients typically stayed in rehab there for a couple of weeks or more and that they would have a plan to present to the family in the next couple of days.  My aunt passed the info on to my mom and to me; I was uneasy about both of the communications because they were different from what I had heard when I was there just the day before.  In what became another unfortunate pattern in Dad's treatment, there were details to be ironed out with what was going on in this facility, and it was impossible for someone who was off-site to do any ironing.  

Thursday, October 20, 2011

Part 8 - Safety First

Continued from Part 7

Just after Dad was moved to a room on the neuro floor, reinforcements arrived; my husband and my daughters, my youngest sister’s husband, and my brother joined us, a welcome distraction for Dad and much-needed support for my mom, my sisters, and me. 

The first order of business in the new room per Dad’s request was getting his face shaved.  Due to the lingering problems with sensation and strength in his left arm and hand (his dominant), Dad needed help shaving, and my brother-in-law volunteered for the job.  “I feel better already!” Dad exclaimed when they were done.  He wanted his head shaved too, but we reminded him that the surgeon had said the incision couldn’t get wet yet so that part had to wait. 

“I think I’m finally tired of watching football,” he commented later that day.  He was an Auburn University graduate and a fan of their football team, and so we thought he would enjoy watching the game on TV that afternoon.  His attention span and his energy level were not up-to-par, though; he couldn’t handle watching TV or even having a conversation for more than a few minutes at a time.  He repeatedly requested that Mom bring his cell phone and/or his laptop to him at the hospital; at one point he even said, “She keeps hiding it from me so I won’t do work.”  We pointed out to him that he had just had brain surgery a few days before, but he was unwavering in his campaign to get possession of especially the cell phone back.

Full disclosure:  we weren’t just worried that Dad might overtax himself if he was given his cell phone and/or his laptop. We wanted to protect the brokerage company for which he worked, his clients, and most especially him because we knew that his memory, reasoning, and impulse control were skewed.  We couldn’t tell him that, though, and he wasn't able to realize it himself, but as a result he was frustrated and sometimes angry about the lack of access and independence.

As an occupational therapist, I started asking about Dad getting OT and PT right after his surgery, and the Pass the Buck/Wait and See Game continued.  First we were told he would get therapy when we got to a regular floor instead of the ICU.  Then we were told they “don’t do therapy on the weekend (even though he was moved to the regular room in the early afternoon on Friday).  Evidently, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon (a different one from the one who gave me a fake non-working cell phone number the night before the surgery) came to visit on Saturday, he asked how P.T. was going and was surprised when we said it wasn’t.  About an hour later, OT and 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 checked his movement and strength (fine on the right, not good on the left).  **Side note:  Dad wasn't really discouraged or bothered by his newly incurred "issues" or the fact that he had gone from being Ironman-ready to needing help walking in less than a week, which speaks very loudly to the point that there was as much of a cognitive deficit present as there was a physical one.**  The therapists let us know right away that they recommended a short stay in an inpatient rehab hospital and that they thought we should go and visit a few in the area right away since the doctors were already talking about discharge in a couple of days. 

Dad wanted to go home, and we wanted him to be able to, but the more we watched him struggle with the physical aspects of tasks and – even more to the point – the cognitive aspects, particularly the safety precautions and his own limitations despite repeated warnings from the staff and from us, the more we became convinced that it wouldn’t be safe to take him home yet.  We considered taking him home and setting up the therapies on an outpatient basis, but we were told that outpatient rehab would take place two or three times per week at the most, and of course it would require someone to load him in the car and drive him to and from a therapy facility.  (The logistics of the latter were more extensive than I feel like I can clearly explain.  Let's just say that Dad's impulsiveness and his "I can do it myself" attitude were not a good combo.)  Obviously, we thought, the more therapy he gets in the acute phase of recovery, the more quickly he will regain function, and so we changed our focus from taking him home to finding the best inpatient rehab facility in the city.

That Sunday, on Halloween Day, we toured two rehab facilities.  (We considered a third but it was part of a nursing home, and we knew that would be too hard of a blow to Dad, and - truth be told, although I am sure this was not part of our thought process at the time - on us.  I kept picturing us driving up to the nursing home/rehab facility with Dad in the car and hearing him say "What the hell? Are we looking for another nursing home for my mom?")

The first rehab facility we toured was near the hospital where Dad was; there seemed to be lots of patients there who were fairly young and who had a military background, which we thought Dad would prefer more than geriatric stroke patients, but this place had strict visiting hours for family which did not include overnight stays.  Basically, they didn't allow anybody but the patient to be there during any unstructured time - the time that was exactly when Dad wasn't safe when left by himself.  ("What the hell??" indeed!)  They said they wanted the patients to rest and/or to work on doing things for themselves during that time, which sounds great unless someone has had a series of traumatic brain insults like Dad had (the tumor, the lack of oxygen when he stopped breathing during the MRI, and the surgery).  Other than proposing the use of a "bed alarm" which would be set to sound at the nurses' station if (when) Dad got up by himself when he wasn't supposed to, they could not give us a plan for how they would keep him safe since he persistently tried to get out of bed and walk around without the walker and without paying attention to safety rules.  The bed alarm was not nearly adequate; he could easily have been up and in the floor with his only-partially healed skull/brain knocked against the floor by the time someone heard the alarm and checked on him.  The lack of plan, and our concerns about his safety, very obviously, were a total deal breaker.

The second place on our list was about 15 minutes further away from my parents’ house and was a rehab floor in a hospital; our reinforcements had to leave at that point and so Mom stayed at the hospital with Dad while my youngest sister and I continued the reconnaissance.  (The hospital where Dad was didn’t offer rehab stays - once the patient was "medically stable," he was to be discharged.)  This second place seemed to be well organized, and, when we spoke with the admissions coordinator and told him we were seeking a very short-term stay with aggressive therapy services, he said that could be arranged and that family could be with him 24/7.  Done.

We returned to the hospital and told Mom about our findings, and then she told Dad that she wanted him to go to rehab instead of going straight home to speed up his recovery.  He was onboard with the plan even though he really wanted to go home; he was highly motivated to “get back on track,” he said.

Next in our story … Part 9 – Going to Rehab

Tuesday, October 18, 2011

Part 7 – A Revised Bucket List

Continued from Part 6

When people talk about having a Bucket List, they picture themselves in the same physical and mental condition as - and usually in better financial condition than - they are at the time, being able to do things that they want to complete in their lifetimes.  We thought of a Bucket List in that same way, until Dad couldn’t. 

Two days after Dad’s surgery, the oncologist came to see him in the ICU and, with my mother and my youngest sister there, told him about the cancer.  Dad asked what would happen if he didn’t have chemo or some kind of treatment, and the doctor said, "Your lifespan would be shortened considerably.”  

In what Dad seemed to consider to be the worst part of the news, the doctor told him that he would not be able to drive a car or to go to work during the treatment period, which he said he anticipated to be about for six weeks.  The oncologist said that, if they could get the cancer into remission, it was highly likely that the cancer would recur despite treatment but that there were different options including clinical trials  that could be considered at that point.  Dad asked how soon treatment could be started ("The sooner the better!" Dad said.), and the oncologist told him he would need more time to recover from the surgery but that chemo would probably start before Thanksgiving.  

Dad, working on his Original Bucket List, in better days
Later that day, Dad was transferred from the Neuro-ICU to a room on the Neuro floor of the hospital.  (I was so relieved that the doctors wanted him to be on that floor instead of the Oncology floor.  It seemed to me to be a symbol of Hope at the time, but we later found out the quality of care at that hospital was actually better in Oncology.)  Some of Dad’s tubes and wires were removed, and, with a walker and lots of assistance and supervision, including constant reminders to keep his hands on the grips of the walker, he started to be able to move from the bed to a reclining chair or the bathroom and back. 

The no-sleep persisted, and so we had lots of time to talk to Dad.  With the tentative plan for chemo in place, he began to think about other plans for the future.  We all desperately wanted to have something for him – and for us – to look forward to, and thus Dad’s Revised Bucket Plan began to take shape.  There wasn’t going to be any skydiving or mountain climbing for him, but there were still things he wanted to do, and we wanted so badly for him to be able to do them.

Another thing ticked off the Original Bucket List
Dad’s Revised Bucket Plan took many forms over the upcoming days and weeks; we spent countless hours talking to him and to each other about what he would be able to do for the rest of his life, with a particular focus on quality and fun and fulfillment.  Dad already had more than the average person under his belt as far as major life accomplishments (for example, he’d run the Boston Marathon twice, and he once ran a half-marathon down Pikes Peak - a.k.a. "El Capitan" - in the Rocky Mountains), but he had many more goals left to accomplish.

One of his biggest original goals was happening one week later – the Ironman Triathlon – and it was evident that he wasn’t going to make it.  Right after his surgery, he asked if I would call and see if his registration could be deferred; he thought he could do the Ironman the next year instead.  Cruelly, though, he gradually realized that wasn’t going to happen, and, over the course of the next few weeks, he kept having to change his ideas about what would be possible for him.  Finally, he ended up focusing on wanting to be on a relay running team for a long-distance event; he and I spent hours one night looking up such events and finally settled on one  called the Illinois River to River Relay in which an 8-person running team tag-teamed to cover a distance of 80 miles, with teamwork and covering the distance being more of a goal than speed.  He said, “I could tell the team ahead of time that I might have to walk a little bit, just in case.”
Dad and one of his best friends Bob at the 100th Boston Marathon
Dad with one of his best friends Wayne after they finished the 100th Boston Marathon
The focus of the second part of his Revised Bucket List was family.  He wanted to go on a big family vacation – at first to a beach (“Preferably to the Pacific,” he said.) and then that got revised to just going to a lake or a river nearby with the whole family.  He said he really wanted to go to an NBA game with his children, my two younger sisters, my brother (from my dad’s first marriage), and me.  “Long-term,” he said, “I’d like to be around to dance at my grandchildren’s weddings.”  I thought that was a kick-ass goal, especially since his youngest grandchild wasn't quite two at the time.

And last - but certainly not least - on his Revised Bucket List was to get a cat.  He saw this as possibly the biggest challenge of the things on his list; my mom isn’t a big fan of cats, and so he knew he would have to convince her that it was a good idea before he could execute his plan.  We spent lots of time debating about how he should approach her and then, after he said he thought she was “starting to cave,” we talked and talked about what the cat should be named.  It took him several days to decide on a name, but he was clear all along about what he wanted in a cat: “one that's not too young but not too old, that will be friends with the dogs [their two greyhounds] and that will be a lap cat.” 

What I learned from watching my dad revise his Bucket List so quickly and so drastically is that there is little difference between something that makes you happy and something that doesn’t; the trick is to convince yourself that they are the same.  On one hand, it ripped my heart out to see a man who was so enthusiastic and energetic having to resort to modifying his Bucket List, but on the other hand I was so incredibly inspired and touched that this same up-for-anything guy was so humble and willing to make those sacrifices so as to become satisfied with a Plan B, something different and ultimately less but fulfilling and sweet all the same.

Up next … Part 8 – Safety First