The Writing on the Wall

One of the things I am asked most often about my dad’s illness is if he had any symptoms prior to the day of his fateful run.

As I’ve written in previous entries and as anyone who knew him was aware, Dad was a long-time competitive athlete who thrived on pushing himself to the limit (and sometimes beyond).  He had a very high threshold for pain, which sometimes did not serve him well as he did not always know when to call it quits.  

Dad, getting medical attention after running his fastest-ever time in a marathon

One thing about him I haven’t mentioned, though, and something about himself that he readily admitted was that he was fairly uncoordinated, a fact that was especially surprising considering he was such a talented athlete.  Maybe it was because of this clumsiness or because he was often in a hurry to get somewhere (he hated to be late!), or maybe it was because the amount of time he spent on the road on his bike or running upped his odds statistically of having accidents and mishaps, but either way it wasn’t that unusual for him to have a scraped-up knee or a bloody elbow from a spill that he had taken. 

Dad did have a wreck on his bicycle about a week before he was diagnosed that resulted in some pretty impressive Road Rash on his left knee, shoulder, and arm.  He had taken a spill with the bike tipping to the left side, which frustrated him so much that he had taken his bicycle to the shop the next day to get them to check it to see if it was out of balance.  As we found out a short while later, it was actually Dad who was out of balance; he had left-sided weakness due to the tumor in his brain.  However, at the time, he chalked up the wreck to something being wrong with his bike or to the usual stuff with him, not paying attention to what he was doing, being in a rush, being a bit of a klutz, and/or heat and fatigue due to a very intense training regiment.

Dad, taking an ice-pack break during an ultra-marathon (Note the supplies on the table.)

 Dad had entered three shorter distance triathlons last summer as part of his preparation for the Ironman Triathlon for which he was registered in November, and in all three he did not feel well at the finish, which a doctor who checked him out in between races attributed to heat exhaustion and dehydration.

 

He finished the last tune-up race in mid-August by staggering over the last mile of the run portion and then falling across the finish line, at which point Mom took him over to the first aid tent where he got some fluids and a stern lecture from the medics there about the dangers of dehydration.  They told him he absolutely had to drink at least 10 cups of water daily in the days leading up to a big race when the temperature and humidity were as high as they had been.  Apparently, after drinking some Gatorade in the tent, Dad perked up enough to jokingly ask one of the medics if beer counts as a fluid, which they did not find funny.  And, as was typical for him, despite the finish line drama, he won his age division in this race, too, which he felt was a good indicator that he was right on target in his training program to get ready for the Ironman.

Dad, after again pushing himself to the limit

 Even though Dad was bald-headed for decades, in personality he oftentimes functioned like a Dizzy Blond.  He had been known to pull up in a parking lot or driveway, put the car in park, get out, and come into the house or his office, all without noticing that he hadn’t turned off the engine of the car!  So, if he was doing things like entering the house without closing the front door behind him or losing his wallet, it wasn’t really something we noticed as a Red Flag because of his past actions.

In late August, my dad went to visit his mother, who was ill and living in a nursing home near my parents’ house.  Not long after he got back home, the telephone rang, and it was one of the nurses at the nursing home letting him know that he had left one of his shoes there.  Evidently, he walked out of it in the hallway of the nursing home and, without noticing, walked to his car in the parking lot and drove home.  Again, we chalked it up to Dad just being Dad, not paying attention and being in a hurry to get somewhere.

A few weeks later, Dad drove my mom and one of my sisters to a restaurant near my parents’ house.  It was pouring down rain, and so, after Dad parked the car in the parking lot, they ran from the car to the door of the restaurant.  Once they got inside, Mom noticed that Dad didn’t have a shoe on his left foot.  She pointed it out to him, and he ran back to the car and found his shoe there.  Again, something that might have been alarming for someone else, but not that out of character for Dad. 

According to the resources we were given on brain tumors, the first symptoms are usually things like headaches, blurred vision, memory loss, behavioral changes, or seizures, all of which can be attributed to increased pressure within the brain.  Other symptoms (depending on the location and size of the tumor) can be nausea, drowsiness, weakness or impairment in sensation on one side of the body, or language impairment.

Even with the 20/20 hindsight that we had once the diagnosis was made, of these, the only symptom that Dad had before the day his tumor was diagnosed was impaired sensation on the left side of his body.

Out on his run that day, he got disoriented and had trouble finding the words he needed to respond to questions he was being asked by people around him.  He was taken by ambulance to a local hospital, where a CT scan revealed a “large mass in his brain.”  He was then transferred by ambulance to a large teaching medical center with a Neuro-ICU, and, en route, he had his first seizure.  The paramedics stabilized him and got him to the second hospital, where the medical staff quickly took him to get an MRI; however, during the test he suffered a second seizure, stopped breathing, and had to be resuscitated and put on a ventilator to help him breathe.

Even once the diagnosis had been made and we had read all about the Warning Signs, we still weren’t able to see The Writing on the Wall; even looking back with 20/20 hindsight, we still couldn’t identify what went wrong and when it had begun. 

No headaches, vision changes, etc.  He was still functioning at his 100%, which was equivalent to most other people's 150%.  We later found a To-Do List in his home office and noticed a slight difference in the legibility of his handwriting, which might have been related to the tumor since he was left-handed.  His typical writing style was of the Chicken Scratch variety, though, and so, as much as the falls and forgetting of the shoe were hard to definitively identify as a symptom, it was even harder to connect those dots, even given what we knew.  Literally, there really was no discernible Writing on the Wall.

We were told by several of Dad’s doctors that the type of brain cancer he had is extremely fast-growing; in fact, this type of tumor usually doubles in size about every three weeks.  The doctors said that the tumor very likely started to grow just a few months before the diagnosis.

And, while it seems like it would be somewhat comforting for us to know that there was no chance for prophecy, there wasn’t something there that we missed, and there was essentially no opportunity for early detection, it really isn’t comforting, because nothing is.  The only thing I see written on the wall is that it sucks and it isn’t right or fair, and I want my dad back!

A New Kind of Good Day

One thing that I learned during the time that Dad was sick is that whether a day is a Good Day or a Bad Day depends more on one's perspective than on how the day actually goes.

Dad talked a lot about what he wanted to do after he got out of the hospital and started feeling better; he knew his Bucket List had to be modified but still had Hope that he would get the chance to do some of the things he still really wanted to do, like going to the beach again.

We started thinking that as long as Dad was able to do at least one thing that he needed to do and one thing that he wanted to do each day, that day could be considered to have been a Good Day.

Nine days after Dad was admitted to the hospital and diagnosed with brain cancer, we had the first New Kind of Good Day: we got to take him to rehab, where it seemed like Hope was stored and a promise of Normal awaited. 

It had been a whirlwind of activity since we’d gotten to the hospital.  Dad arrived by ambulance on Oct. 23, had surgery to “debulk” the tumor on October 27, was moved from the Neuro-ICU to a regular hospital room on the Neuro floor on October 29, and was transferred to an inpatient physical rehabilitation facility on November 1. 

When we’d toured the rehab facility before we’d decided that he should go there, we were told that he would receive at least 3 hours daily of PT, OT, and Speech Therapy.  We told the admissions coordinator that we felt he might benefit from a week or so of that type of intensive rehab on an inpatient basis and then we would take him home, after which he could get more therapy on an outpatient basis.  We had High Hopes that a short stay in rehab would give him the boost he needed to be able to walk unaided, get ready for the day safely, and possibly even drive a car.  We wanted as badly as he did for him to be able to get back his independence and even a modified version of his life.

The hospital staff wanted Dad to be transported by ambulance to the rehab facility, which was about 10 miles away.  "I feel confident in my ability to keep him safe," I told the nurse when she told me they were planning to call an ambulance, "and that's what I am going to do."  Maybe that wasn't 100% true, but I'd be damned if I let a decision that I thought was a Big Deal be made by someone who didn't know us and didn't know how determined Dad and the rest of us.  Because I thought that another ambulance ride would further underscore the fact that Dad was sick and how much his life had changed, I insisted that my mom and I take him to rehab on our own, and that we did. 

Dad was so happy to get outside the four walls of the hospital, even if it just meant exiting through the stinky underground parking garage of the hospital and then viewing the world through the windows of the car on the way to entering the front doors of the rehab facility.  He tried to talk us into stopping by a restaurant for lunch in between the hospital and rehab, even offering to "go for fast food" if we didn't think it was a good idea to go to "a sit-down restaurant." 

Looking back, I wish we'd done it ~ I wish we'd said to hell with The Rules; if Dad wants to go to a sit-down restaurant, then we're going!  But we had been told to go straight to rehab, do not pass Go, do not collect $200, and that's what we did. 

We wheeled Dad into his new room at rehab and got him settled in the bed.  He was tired from the transport and from the excitement of the day, so we let him "rest his eyes," as he put it, while Mom and I unpacked and arranged the room. 

Dad in his room at the rehab facility

 We had also been instructed to deliver a copy of Dad's medical records from the hospital to the staff at the rehab facility.  Before I handed them over, I studied the neurosurgeon's notes from during Dad's surgery, even making notes in my notebook of what had been written in the summary.  I didn't have time to process or use for that information at the time but thought I might in the future, and I felt like the more information I could get on Dad's condition, the better armed I would be.

The rehab director came by shortly thereafter and did his assessment on Dad.  He had him do much of the same stuff we'd seen requested of Dad at the hospital: "Touch your finger to your nose," "Follow my light," "Hold your arm up and don't let me push it down," and, of course, then came The Questions.

That time, after so much rehearsal in the hospital and after having heard us talk about going to rehab so much, Dad did well in proving that he was oriented to person, place, time, and reason for admission ("I guess I have a brain tumor," he told the doctor.).

And then came the call for some more challenging cognitive tasks:  "Count backwards from 100 by 7's," "Listen to these three words and after we finish talking in ten minutes I'm going to get you to say those words back to me," and "Name the item that I am using words to describe."

These were tricky.  Dad tried his best; he got part of each of those tests correct and then searched my face for help on the rest.  That was the worst part - when he realized that he didn't know the rest of the answers on something he knew he should have known.

"That's why we're here, Dad," I told him.  "I can help you with getting your balance, strength, and coordination back, but we need to make sure your memory is better and that you are safe."  He trusted us to make the call of what he should do next to get better, and so he agreed to stay.

After all of that activity, Dad said that he was ready for bed before 10:00 that night.  I had to be back at work the next day and then planned to come back the day after that to go with Dad and Mom to the oncologist's office to find out The Plan,  and so I left Mom to watch over him in their new quarters.  As I turned to walk out of the room, Dad looked at me and said, "Thanks, Steph!  It's been a Good Day."

New Orleans On The Mind

My dad loved New Orleans.  He thoroughly enjoyed the food, appreciated the people, delighted in the music, and, of course, he LOVED the Street Beer!

 

Dad, making a presentation to some of his clients at a meeting

When people asked Dad what he did for a living, he said that he was “in the grain business."  During his career, he managed several grain elevators, supervised the opening of a rice processing plant, and, in 1993, joined an agricultural marketing consulting firm as a principal commodities broker.

Not long after he graduated from college and got his first job in the field, he joined the Mid-South Grain Association, a trade organization for people in the ag-marketing business.

During the course of his career in the grain business, the Mid-South Grain Association was a constant for Dad.  He served as president of the organization for several years and was secretary-treasurer for the past 18 years. He was always so appreciative of the numerous friendships he developed through the group and enjoyed organizing their semi-annual conventions, one of which was always held in February in New Orleans.

My sisters and I and our spouses tagged along several times when my parents went to the convention in New Orleans, always a fun time for all of us and a good opportunity for us to see Dad “in action” with so many people he had known professionally and personally for years and in some cases for decades.

When Dad got sick in late October, he had just begun planning for the convention the following February.  He still had to line up guest speakers, get people registered, and coordinate with the hotel where the meetings were always held, the Royal Sonesta.  He had quite a long To-do list going, and this became one of the things about which he worried while he was sick.

After Dad was admitted to the hospital, while he was in the Neuro-ICU for several days awaiting surgery, he was on several different medicines, including a massive amount of steroids to address the swelling around the tumor in his brain and a type of pain medication that we later learned resulted more in increased anxiety and talkativeness than it did in pain relief for Dad.

My mom, my sisters, and I took shifts, often in pairs, to be with him 24 hours a day, and, as I’ve mentioned, we took careful notes about everything that went on.  One of the things we wrote down was what he said, especially when it related to things about which he was concerned. 

During those long, scary nights in the ICU, he talked endlessly, often about not feeling well, having a bad headache, and being very tired, all of which made sense given what we knew about what was going on with him medically.

Just a few hours before his surgery, he seemed to finally be getting some rest, but he kept talking in his sleep, saying things like “I’m bored,” “I’ve got to know when I can run again,” and “I don’t know why I have to be here.”  He also said some things that weren’t in context, like “I’m going to the oyster bar,” and “I’m going to eat a dozen.”  In between comments, he kept repeating a number that didn’t make sense to us, and, after hearing him say that same number over and over, I decided to use my cell phone to Google it.  It turned out that the number was the telephone number to the Royal Sonesta Hotel in New Orleans.  Apparently, he had New Orleans on The Mind.

Over the course of the next several weeks, we made lots of notes of things that Dad told us to write to complete the Convention-Planning To-Do List, and then we passed it on to someone else in a leadership position with the organization.  Dad still worried about it frequently, but we tried to reassure him each time he brought it up that it was being taken care of. 

After Dad went on ahead on January 5, Mom was asked to continue taking part in the convention and with the organization, if she felt up to it.  She had worked side-by-side with Dad for all those years in planning for and putting on the convention, and she definitely knew the ropes.  Because Dad was so concerned that the convention go smoothly, Mom felt that carrying on with that task was a good way to honor his wishes and to uphold his legacy in the professional realm.  She did get the job done, coordinating the planning for the event, and, with my husband and me, attending the convention to represent Dad as he would have expected us to do. 

I’m sure that Dad was watching over us during our time in New Orleans and that, although he might have missed being there, he was proud that we honored his commitment and that the show went on.

The Icing on the Cake

For the last ten years or so, I've watched a good portion of the Tour de France on TV every summer.  In general, biking isn’t on my list of favorite sports to spectate, but I’ve always been impressed by the extreme sportsmanship and the endurance, tenacity, and just downright toughness displayed during this event in which participants cover 2,200 miles of very challenging terrain over three weeks.

But the real reason I’ve watched is for the annual Tour-related camaraderie that I’ve enjoyed with my dad.  Betting and bantering about whether or not Lance would “pull it off again,” as Dad termed it, waiting and watching for the wrecks, and of course discussing and debating about the politics of the race, which mostly boiled down to talking about all the drug-testing drama.

Dad was a big Lance fan.  When Dad talked about the reasons why Lance should be admired, he said, “His Cancer Story was just the icing on the cake."  Dad and I agreed that, whether or not the famous athlete “doped,” he was a Machine, full of toughness and grit, “not to mention,” Dad said, “a marketing master!”

Dad in 2003 with Lance Armstrong's second book, "Every Second Counts"

Dad was always so impressed by the guys in the Tour who wrecked and then got back up and continued riding.  "Now that's Tough!" he would say admiringly when we were watching on TV and saw one of the many spills and recoveries. 

It was funny to me that Dad never saw his own extraordinariness.  For example, once when I was about eight years old, I was playing in the front yard of our house when an unfamiliar vehicle pulled up in our driveway.  Dad got out of the car, thanked the driver, and turned around to face me.  He had blood dripping down the side of his head. 

"What happened?"  I asked.

"I was running across a 2-lane bridge and an RV that didn't have enough room to get over side-swiped me," he said.  I didn't even know what side-swiped meant, but I figured it wasn't anything good based on the blood that kept coming and coming. 

"I was going to keep running, but I knew your mom would be upset if I didn't come straight home to get this cleaned up," he said, as he headed into the house. 

When I was in the seventh grade, my dad was running a marathon and, in third place 18 miles into the race, he was hit by an old lady driving a car who hadn't seen him because the sun was shining in her eyes.  She hit him from behind, and he flew up over her windshield and landed in the road.  She was screaming so much that he, while lying in the street with a broken leg, had to try to calm her down until the police got there a few minutes later.

He was taken by ambulance to the hospital, where we met him after the police found us on the course, waiting at the 20-mile mark, where Dad had told us to wait to cheer for him.  When we got to the hospital, he wasn't at all focused on the pain from the bone sticking out of his leg but instead was concerned because the force of being hit by the car had knocked off one of his running shoes, which he wanted back, and because he wouldn't be able to finish the race. 

The orthopedic surgeon told him that he would be in a cast for several months and would not be able to run again for at least six months.  Four weeks later, Dad used a kitchen knife to cut the cast off his leg and was out on the road again, training for his next race.

"Get this thing off me!" - Dad with his cast after being hit by the car in the marathon

In the 1990's, Dad finished several ultra-marathons, including a 48-hour race that he did on an indoor track, and a 24-hour race, after which he jumped into the car, drove several hours to help me load up my stuff to move out of my dorm, and drove three hours home.

Dad with his cheerleader Mom at the 46-hour point of the 48-hour ultra

Dad with one of his Support Crew members (me) putting ice packs on his legs at the halfway point of his first 24-hour ultra

A couple of years ago, Dad entered an off-road triathlon near my house.  He left early in the morning, and when he got back, his elbow and his knee were both bloody.  He said on the mountain biking portion of the race the biker in front of him wrecked, which caused Dad to wreck into him with so much force that it bent the seat of the bike into a 90 degree angle.  Since the bike was then unrideable, Dad picked it up and carried it, running more than a mile to the transition point, where he ditched the bike and took off on the trail run part of the event.  He said, "Don't worry, though, I'll get the bike fixed, and, best of all, I still won my age division."

A few days after that race, he said he was having some trouble breathing and so he went to the doctor, who had a chest x-ray done.  Evidently, in the bike wreck, in addition to breaking the seat of the bike and scraping his elbow and knee, Dad had broken two ribs.

Dad, at the start of the "bike leg" of the triathlon in which he qualified for the National Masters in 2009

Then there was the Big Bike Wreck three years ago.  Dad was on a long training ride, probably 75 miles or more, and was riding by himself on country roads in Missouri.  He usually didn't take his cell phone with him on bike rides, but for some reason he had brought it along on this one, even using it to call Mom right before he left to tell her he would be gone for a few hours.

At some point on the ride, a guy driving a pick-up truck with several children in the truck bed wasn't paying attention and didn't see Dad on his bike in the road in front of him.  The driver hit Dad from behind, and, again, Dad flew over the top of the vehicle and landed in the road, this time with his feet still clipped to the pedals of the bike.  He landed very hard on his back and immediately found that he couldn't move his arms or legs at all.  The driver had stopped but hadn't gotten out of the truck yet, and Dad said he was screaming at the guy to call 9-1-1.

Here's the really crazy part of the story:  apparently, when Dad was thrown to the ground by the impact, his cell phone got bumped and the redial button was hit.  Mom thought it was odd when she saw on her phone's Caller I.D. that Dad was calling back so soon after he'd started his bike ride, and when she answered, all she could hear was Dad screaming for someone to call 9-1-1 and saying that he couldn't move.  She kept him on the line and then used another phone to call 9-1-1.  She made it to the scene of the accident just as Dad was being loaded into the ambulance, and, by the time they made it to the hospital, Dad was moving his extremities again, although he had a major case of Road Rash and was understandably sore.  He didn't even spend the night in the hospital that night, and - you guessed it - he was back out on the road within a couple of weeks.

When Dad found out he had brain cancer, one thing that kept him going was the fact that Lance Armstrong had had cancer in his brain too.  Lance had not only survived the cancer and the treatment, but he had gone on to win the Tour de France a record-setting seven times after that.  We held that up for inspiration and, for awhile, really believed that Dad would beat the odds and get back to biking like Lance had as well as running and swimming, too.  

Not long after Dad was diagnosed, we started talking about how when he was cured we would write a book to tell about what he had been through.  "I'm not famous like Lance," he said, "but maybe if I can beat brain cancer that would be a good story!"

During Dad's illness, I saw him get proverbially knocked off the bike many times, and, each time, just like those guys in the Tour, he got right up and kept on going.  When he was first told he had cancer, he said, "Well, at least I've got good insurance and great family support."  He never complained that virtually overnight he had gone from being in Ironman-triathlete shape to having to use a walker to get around his room in the hospital and then in rehab.  When the therapists at rehab showed him exercises to do during therapy sessions, he gave it his all, often doing extra reps in his room after therapy was over for the day.  When he had to be stuck repeatedly with needles for blood draws and I.V.'s, he told the techs and the nurses, "That's ok; I know you're doing the best you can."  Time and time again, as many times as his body would let him, he got back on the bike.

I value every second of the time I got to spend with Dad during the ten weeks he was sick.  I got to see the depths of his courage, humility, love, and determination.  But actually, though, his Cancer Story was just the Icing on the Cake.

           Lance Armstrong was said to have this song, "My Father's Eyes," on his pre-workout Playlist last summer.

Hospice

I recently came across an article in the New York Times stating that Hospice services may be being misused in some cases.  Click here to read the article.

Of course, no one goes around saying they are fine with money or resources being wasted or a system being abused.  From my perspective, though, this article is an example of a very one-sided view, most likely one by someone who has never personally had to care for a critically ill loved one or to have support from Hospice.

What this article seems to be saying is that when a person who is on Hospice survives past the six-month point, he or she was not really a good candidate for the services received under Hospice care, and that they, their family, and/or the medical workers on their case either made a mistake or committed fraud.

According to this article, 19% of people on Hospice end up receiving those services for longer than the 6-month deadline (pun intended).  As if that is a crime or something for those people to be ashamed of!

Anyone who ends up having to make the very difficult decision to bring in Hospice gets my sympathy; it’s a path down which none of us ever wants to go.  But I will also offer an empathetic sigh of relief and a sideline cheer on their behalf, too, because I have been there – and because I know that Hospice is exactly what the health-care system in our country should be like.   I know that Hospice can make a difference when nothing else can, not necessarily in the amount of time a person has left but in the QUALITY – and that’s what counts!!  In fact, not just in the quality for the patient but for the entire family.  And that will make a difference not just for those involved during the time the patient has left but for them for the rest of their lives.

There are a lot of things that are sad about the dying process, but what’s scary it is that we don’t know what to expect and we cannot control what’s going on.  We are running out of time to be able to interact with our loved one who is so sick, and we have no idea what to say or do.  We need advice, guidance, help, and support from someone who does know, and that’s what Hospice is for. 

In my opinion, Hospice is the very best of health care; it means caring for one’s whole health, physical, emotional, and spiritual.  And in some cases, I can see where having those needs met - and getting out of a germy, stressful hospital and doctor’s offices and sometimes even getting away from medicines and treatments that can cause more problems than they are fixing – can make a person BETTER, at least for a little while longer, maybe even longer than six months.

From my perspective, it makes no sense to then to punish or to invoke guilt on the person who is fortunate enough to eek out some extra time, or their families, or anyone involved in their care.  Rather, we should give them a big shout-out, throw them a party, or hold a parade in their honor, because obviously they made the right choice in choosing Hospice.

And here is one thing to which I can attest without a sliver of a doubt:  others of us, whose loved one followed a more typical pattern of Hospice which, according to this article, is surviving only 17 days after beginning in a Hospice program, made the right choice, too.

When Dad got so weak a couple of weeks after his second round of treatment, we took him to the hospital, fearing that he’d had a stroke, which is one of the potential side-effects of the medicine he was taking.  An MRI indicated that the growth of the tumor in his brain had been halted by the protocol he was on at that point, but his blood work showed severe infection in his bloodstream and an extremely compromised immune system.  Even after receiving lots of antibiotics, anti-virals, anti-fungals, and a transfusion of both whole blood and platelets, he was still so weak that he could hardly lift his head, talk, or swallow.  He wanted to go home, and we could plainly see that was the only real option for him at that time. 

Like many families in our situation probably do, though, we started out thinking that signing him up for Hospice was the same as giving up.  So we did what we had to do:  we took baby steps, cried a lot, took turns being strong and decisive, and forged ahead, as always, with a Back-Up Plan:  we told ourselves that we were just going to “use” Hospice to get him home so that he could get stronger.  We said to ourselves and to each other repeatedly that Hospice is revocable at any time, and we were on such good terms with Denial that we fully believed that we would probably revoke it once we got things under control. 

I have never seen someone as relieved as Dad looked when we told him that he was going home the next day.  He said “the best” would be if he could leave right that second, but “almost the best” would be when he got home the next morning.  He tried to negotiate just how early he could leave the next day, but, for logistical reasons, the time had to be 11 a.m.

He, of course, slept “zero,” as he liked to quantify things, the night before, par for the course for him because of the massive amount of steroids he was on, and he must have asked at least 50 times what time it was and if it was time to go home yet.  He was so wound up and anxious by mid-morning that the nurse at the hospital gave him a sedative, which knocked him out for the ambulance ride and for pretty much the rest of the day.  I was grateful for his sake for the former but disappointed by the latter; I had envisioned him coming into his house with the biggest smile on his face, finally looking happy and feeling like he was where he wanted to be. 

Thinking he would want to be in the center of the activity going on in the house, we had opted to have the hospital bed set up in the den instead of the master bedroom. When he woke up, he was very disoriented.  He said, “You promised I was going home!” because he knew he wasn’t in his bed or in his bedroom.  He was trying so hard to get himself together, to rally, and to feel lucky or even just not to feel terrible and terrified. 

The Hospice nurse came soon after Dad got home, and my mom, my sisters, and I took turns sitting at the dining room table with her and sitting with Dad.  We wanted him home, but we still weren’t sure the Hospice decision was the right one.  More than anything, we wanted to protect Dad, and we thought that part of doing that was not letting him think we had called Hospice because we had given up Hope.

But as we exchanged information with the nurse, we realized that we weren’t giving up, we were gaining – gaining some control over an out-of-control situation, gaining knowledge, gaining allies in meeting our goal for Dad, which was keeping him from hurting or being afraid.  We had found the Captain of the ship that our Plan had been lacking, and that made such a difference.  We were still heartbroken and in shock, but we were in this together, finally with exactly the kind of support needed by Dad and us, and we were as armed as we could be to care for him.  Instead of having to fight, beg, question, and monitor as we did in the hospital, we were able just to hold his hand and talk to him even when he couldn’t talk back anymore.

When all the world is a hopeless jumble
And the raindrops tumble all around,
Heaven opens a magic lane
When all the clouds darken up the skyway,
There's a rainbow highway to be found
Leading from your window pane
To a place behind the sun,
Just a step beyond the rain.

Although there are obviously things we would change about what happened during Dad’s illness that might have contributed to his rapid decline as well as other things that didn't hurt him but didn't help him either, we were so very lucky to have had a fantastic Hospice service to help us in the last week of Dad's life.  Even though it didn't change the outcome of what happened, it did change the quality of how it happened for him and for us.  

Dad was an outstanding mentor and had a great way of leading and teaching others with positive perspective and humility, and he died exactly that same way only five days after he came home on Hospice, selfless and courageous as always.  I wish so much that we could have been among those whose loved one had to get an “extension” on Hospice services because they’ve outlived the six-month time allowance, but of course we didn’t want Dad to suffer any more than he already had, and, with the support of Hospice, we realized that it was his time to go on ahead.  We are forever changed by being with him when he was sick and when he left this world, but not nearly as much as we are by having him to shape our lives over the years.

One of Dad's all-time favorite songs, Judy Garland singing "Somewhere Over the Rainbow."