Worrying

For as many things as I like to think that I got from my dad, whether by nature or by nurture, we had one core difference: I am a worrier and, simply put, he wasn’t.

I, like others with tendencies similar to mine, call it planning, organizing, taking care of the details.  I consider it a necessary part of life and, truth be told, I do it pretty often; his philosophy was that whether or not one worries is a personal choice.  He and I had many conversations about this topic over the years, including several during the weeks that he was sick, and he told me many times that from his perspective there were alternatives to worrying, like “just doing it,” or “going with the flow.”  He was a great list-maker, often leaving sticky notes and legal pad pages of reminders for himself around the house, on his desk at work, and even in his car.  That, he said, was a way to get worry off his mind.

That stuff doesn't work for me, though.  I don't feel like it's my choice to worry or not to worry, and making lists (as I do as often as my dad did) lessens the worry but doesn't turn it off. 

This is what a supreme worrier I am: I often read books while thinking about trying not to leave a mark on the book that will affect its condition.  I try my best not to get smudges or water marks or creases on the pages as I read.  My dad, in contrast, concentrated on thoroughly enjoying a book as he read through its pages.  What a joy I have found it to be to look back through the books he read and to see the marks he left behind, the crumpled pages, the sticky notes, the underlined and notated passages, and the dog-eared corners.  What pleasure it brings me to look at those things and to know that my eyes are where his once were and that he so completely basked in the moment when he was there, on that page in that book.  It’s like seeing the scrawled “I was here” written somewhere, and it makes me smile and warms my heart.  It also sometimes makes me think again about the benefits of worrying less, or, as my dad would say, choosing to do something besides worrying. 

Maybe that’s why the anxiety that Dad experienced during his illness, especially during the last two weeks of his life, still haunts me so much.  It was so uncharacteristic of him to be worried, and the rest of my family and I felt so powerless in our ability to quiet his fears and quell his distress.  More than anything during his last days on this earth, I wanted to take away that worry, which I knew would ease his pain. I think back to his last night in the hospital and to the next two nights after that when I took a turn sitting up with him as he struggled to sleep and as we worked to get control of the panic and the pain, and my heart hurts to remember the worry etched in his face.  Sometimes the medicine would help, but more often it was the presence of someone he trusted completely that seemed to help ease his mind.

I remember sitting beside his hospital bed in the semi-darkness of my parents’ den after he’d come home and listening to him worry aloud about things that he could not control.  I tried telling him not to worry, I tried to let him know that we only needed to focus on the really important things, and I tried to convince him that others of us would take care of the things that seemed to be on his mental to-do list, but that just seemed to agitate him more.  Finally, I waited for him to pause to take a breath, and I said, “It’s going to be okay, Dad; I hope you can choose not to worry so much,” and he turned toward the sound of my voice in the darkness as if those words were my arms going around him.  A minute later, the talking stopped and his breathing slowed into the rhythmic pattern of sleep.  I stood up to cover him with an extra blanket and then tucked in beside him, half on the couch and half on his bed, with my head on his shoulder, thinking that maybe I could absorb the burden of the rest of his worries during the remainder of the night.

Water Marks

I've heard it said that within two generations after a person is gone from the earth that it will be as if he was never there. This is a statement with which I completely disagree, though; I think people who think like that have not considered the rippling of a person's presence, the mark that is left behind forever by association on generations to come. If something about a person affects me in any way at all, there is a shift in my actions, in my perspective, in my words, or in some other area, and those around me are likely then to be impacted to some extent, which then affects others in their path in the future.  That's how the rippling effect works; that's how our presence is maintained long after each of us is gone. This is something that has become very clear to me since my dad's death, and it is a truth in which I find comfort.

Once when I was in college, I heard someone make an off-hand comment about how it drove her crazy when my dad put a glass of water down on her coffee table without using a coaster. "It's like he doesn't even think about the water marks he's going to leave," she complained. I didn't really see her point at the time and I still don't; like my dad, I guess, it's never been something that I've thought was worth adding to my Worry List. 

In fact, I noticed a water mark on a piece of furniture in my house just the other day and thought, "Damn, what I wouldn't give if I knew that mark had been left there by my dad."

I don't think my dad went through life thinking about the water marks that he was going to leave behind; he wasn't that self-centered or that existential in his philosophy.  I wish he could know now, though, about at least some of the ripples he created; certainly his presence and the waves of his existence continue far beyond what he was able to see.

Two Years Out

Have you ever run into someone whom you haven't seen in awhile and noticed that something about that person that you can't put your finger on has changed?  Maybe it was something so indistinguishable, so subtle, that you have even wondered if it was just your imagination, but still you felt that something was different about that person than it was in the past.  That's what grief feels like for me at this point.  It has changed over the course of the two years since my dad died, but it's hard to say exactly how.  Or maybe I have changed in how I address the grief and in how I cope.  One thing is for sure, though: it's still looming; it's not any less of a threat except for the fact that I guess I have learned a little bit about how to manage it.  

Part of me is shocked and even a little bit impressed (surprised?) that we've made it to the two year point after my dad went on ahead.  We've done it; we've helped each other through it and we've survived it, so far.  Some days, though, it feels like running the third lap of a four-lap mile around the track, which for me was always the most painful because I knew that I had to give it my all in that part of the race but I was also aware that there was so much work left to be done even after that lap had been completed.  Part of me is so shocked and so saddened by that fact that we're already at the two-year mark that just the thought that it has been that long since I've seen him immediately brings tears to my eyes.  Two years.  How did that happen?

I had a dream about my dad a couple of nights ago, and in it he was sick and he kept asking me, "How did we get here?"  At first, I thought he meant that he wanted to know how we had arrived in the physical location where we were, which was, oddly, sitting on a bench in a park that was not familiar to me (and certainly it wasn't somewhere that I went with him while he was sick), but then it dawned on me that he was asking how we had gotten to that exact point in time.  And then in the dream I turned to him on the bench with tears in my eyes and I said, "We got here because of your strength, your courage, your toughness, your determination, and your love, and we will never forget that."  I knew he want to know how he had gotten cancer and how it had gotten so bad so quickly, but no one knew the answers to those questions.  What I did know in the dream - what I wanted to convey to him - and what I do know in real life is that my dad is the reason that my family and I have had the fortitude not to crumble in the midst of the biggest challenge of our lives; time and time again, we have held him up as an example of how to face the pain of our grief, how to cope with the sadness and the anger that threaten to overtake the joy and the promise of hope for a better tomorrow, and how to look for the good on even the roughest of days.  That's how we have gotten here; that's how we've made it through these two years since he had to go on ahead.

But of course knowing that doesn't make me miss him any less; if anything, the passage of time makes me miss him more!

It's not just that today marks the two year anniversary of my dad's death that brings him to mind; I miss him all the time.

I miss how he and I could laugh over the craziest things, sometimes things we knew were ridiculous or even dumb but we thought they were funny anyway. 

About ten years ago, Dad and I drove from my house to the small town in Alabama where my grandmother lived to pick her up and bring her back to my house so she wouldn't be alone on Christmas.  It was about a 7-hour long drive each way, and we had a great time talking and laughing along the way, just the two of us on the way there and then with Grandmom on the way back.  At one point en route to her house, we stopped at a gas station that happened to be in a rough neighborhood; we both got a big fountain drink inside the convenience store and then got back into the car.  As Dad pulled out of the parking lot and turned onto the street, we heard a loud ricocheting type of noise on the back window of the car.  Each of us instinctively ducked our head as Dad quickly pulled the car over onto the side of the road so we could see what had made the noise; we both thought we had been caught in a crossfire that had shattered the glass on the back window.  When we'd had a few seconds to process things, though, we realized that the sound had come from the ice from the drinks that had spilled as we'd turned the corner after both of us had set our cups on the roof and had forgotten them there as we got back in the car.  A good laugh ensued, and we headed out onto the road again.

I miss the inside jokes and the memories we shared from running together.  One thing we used to talk about in that vein was our strategy of "rounding up" our run time ("If you say you'll be out running for 40-45 minutes, you can go for almost an hour before anybody notices," Dad had advised me many times throughout the years when I complained about not having as much time as I liked to have to run.  Prior to the time when he began training for the Ironman triathlon, his fitness goal from age 55-65 was to work out for an hour a day, at least 5 days per week.)  

I miss the exuberant way he marked his place in books, by folding half of the page down.  I was reminded of this just a couple of weeks ago when I was going through some books to see which ones could be donated to charity and I came across a book that he had handed down to me a few years ago, complete with folded down pages marking the places where he had taken a break from reading along the way.

I miss the way he took joy in everyday tasks and, in doing so, he made them fun for those around him.  This included lots of things he did to entertain me on long runs - things like singing as he ran and alternately bounced and caught a tennis ball to the beat of a song, like taking me on different running routes that he had scouted out in advance to make each one an adventure, and like coming up with unusual training techniques for the two of us like running up and down the steps on the outside of a grain storage bin for a certain amount of time (which he then challenged me to try to improve on when we did it again the next week).  

We ran up and down steps like these
as one of our training routines.

There were lots of non-running tasks that Dad made fun, too, though.  One thing I was thinking about recently was what he called "Laundry Parties."  When I was a teenager, Dad, as the person in our house who did most of the laundry, had trouble discerning whose clothes were whose between my mom's, my sisters', and mine, and so he often brought laundry baskets full of clean clothes into the den, dumped them on the couch, and announced to my sisters and me that we had to help fold them.  "It'll be fun!" he'd say. "It's a Laundry Party!" and, although we usually groaned and complained about having to help, he always joked around and made a usually boring task fun.  

I miss the way he hugged, which was often more back patting than anything else.  Somehow his technique always seemed to instill confidence in me, as if the back-patting was literally him patting me on the back to let me know he thought I'd done something right.

I miss the funny random emails and phone calls from him, sometimes about something so out of the blue that just his question or comment made me laugh out loud.  Once he called to ask me how to spell "coulotte" (pronounced "coo-lot" - this is a style of women's pants also known as a split skirt, in case you didn't know).  I spelled it for him, he thanked me, and then, obviously in the middle of a thought, he hung up.  I had to ask him later why he needed to know: he had been writing a memo to employees in his office about what was and what wasn't acceptable attire for Casual Fridays.

I miss the funny rules he made up for some things, like "I never drink beer that I can see through," a rule he imposed several years back when he discovered that he had a penchant for dark beer, despite the fact that he had been drinking lite beer for decades before that.

I miss the smell of Brut on him, so much that I sometimes break out a bottle of it that I have stashed in my bathroom just to take a whiff of it.  It's comforting in that context; it's disturbing and sad when I smell it on someone else in passing, as if that intrudes on the comfort of it in my memories from when he wore it.  

I miss the way he bounced on the balls of his feet when he walked.  I miss his competitiveness, which he carried on with himself as much as anyone else, and I miss his pride.  I miss the way he could (and usually did) talk to anyone who crossed his path.

I miss the way he lost certain things, like his wallet, so often that he tended not to worry about it whenever he did; like he did with a lot of other things, he didn't worry because he thought worrying was a waste of time and he just believed that everything would be ok.

I miss having him ask me about my job and how things were with my husband and the kids; I really miss how he used to listen to what I said in response and then how he would sometimes sigh as if he felt exhausted on my behalf and then say, "I don't know how you do it all!" with so much pride and admiration in his voice that it soothed me and made me proud, even when I'd felt like I had been struggling before then.

I miss his no-nonsense attitude and advice, the same kind he gave me when I called to tell him that I'd been offered my first job as an occupational therapist after I'd graduated from college.  I told him what the salary would be and that I thought it would be a great place to gain experience, and then I said that I had told the human resources department that I would get back to them about my decision.  Without missing a beat, he said, "Haven't you been wanting to work at a children's hospital like that for many years?"  I told him that I had, and he said,  "Well, then, what are you waiting for?" was the advice I got in return, in response to which I hung up with him and made the call to accept the job. 

I don't think Dad always recognized the value that other people found in the advice that he gave out, though.  Late one night when he was in rehab and he, as usual, couldn't sleep, we were talking about the schedule for the next day and I reminded him that I was leaving to drive back home as soon as my mom got back to stay with him the next morning.  "Be really careful driving back," he told me, and then he said, "Be sure not to stop for gas in the valley on the way back; it could be dangerous there and cell phone coverage isn't good."  He paused and added, "But I'm sure you can take care of yourself."

Before I could say anything in response, he commented, "Sometimes I worry that any advice I've given you hasn't been about the important things."

"What do you mean, Dad?" I asked him. "You've given us good advice!" to which he responded, "All I can remember telling you is stuff like always keep a towel in the trunk of your car and put some toilet paper in the waistband of your shorts when you go for a run in the woods."  It was true; he had told me both of those things many times throughout my life, and, truth be told, I always did both of them (and still do).  But, of course, that wasn't the bulk of the advice he had given to me over the years, and I wanted to be sure he realized that.  "You've taught me a lot more than that," I told him, but the only answer I got was the sound of his rhythmic snoring.  After tossing and turning and chatting for the majority of the night, he had, at last, fallen asleep.

I miss the lists of "suggestions" he emailed to us before his birthday, Father's Day, and Christmas.  To me, he was always the easiest person to buy a gift for, not just because of the list but because he had such distinct hobbies and because he would often just "make do" with whatever he already had instead of buying the latest and greatest accessories and gadgets for himself, leaving it open for us to give those things to him later if we wanted.

Once when we were running together during the time that I was preparing for a marathon, I told him that I had gotten some new gear to help me with the training and that I had estimated that I had several hundred dollars of equipment on me every time I went out the door to run.  He actually stopped in the road and said, "Are you serious?"  Yes, I told him, but that included my high-tech clothes, my shoes, my GPS-enabled watch, my heart-rate monitor, my sunglasses, and my iPod.  "That's crazy!" he said, incredulous.  He started running again but insisted that we go back by the house so that I could "ditch the extras." "That way we can really run just to run," he said.  And that's what we did.  How I miss being able to do that with him, and to talk about anything or nothing along the way.  Damn.

Moments

I think most people only have a handful of times in their lives when something is happening and they realize in that moment that they are going to remember it for the rest of their lives.  Our other memories, things we think about after the event has come and gone - they come back to us unexpectedly, out of the blue, without our having consciously collected them along the way. But the ones that we know will stay with us as they are occurring are extra special, because we get to live them live in real time and in memory. 

As hard as it is to think back on the time when my dad was sick, I realize that the fact that we were aware of the risk (probability) that his time was limited allowed us to pull in those memories while we were focusing on the specialness of that time. Some of the time, I was functioning in the moment, but I was also deliberately hoarding memories of what was going on. I wasn't trying to hold onto those things because I thought Dad wouldn't be around much longer, though; usually I was logging those moments because I thought he would beat the damn cancer and we would be able to look back and think this is how we made it!!  And even though it turned out we didn't, at least we were afforded those memories, both the good and the difficult, to remind us of the fierceness of our love for one another. 

I dealt with my dad's illness with staunch denial of the fact that the devastating prognosis could apply to us, and, looking back, I think it turned out to be for the better that I wasn't aware of many of the last times I'd have with my dad because of that denial.

In going through life, we tend to think we will always have more time, which leads us to think that it's ok to rush around, to put things other than our loved ones first, and to worry about the past and the future instead of letting everything else fade away and just appreciating the simple physical presence of those we love.  Hearing the words "brain cancer" allowed me to stop all of that and to recognize that I needed to just be with my dad and the rest of my family, even though I didn't let myself think that there wouldn't be many more opportunities to do that same thing.   

And afterwards, I had to see not just that I'd been wrong in thinking the prognosis was wrong, but I also had to realize another hard thing as part of the grief: when the dust starts to settle after the first time you lose someone that you truly love, in the darkness it hits you that your days together with everyone else that matters to you are numbered as well.  And somewhere along the way in dealing with the horror of that realization, you may see the importance of paying attention, of stopping to smell the roses, of committing the moments to memory, because doing so is one of the few things that may possibly help to ease the deep aching when we do have to come to find out that the lasts were just that.

All the inconveniences, the irritation, the stressing out over things, the wishing for things that don't really matter at all seem so insignificant, so stupid, and in some cases so selfish when we put it into perspective.  At some point, for all of us, it will be too late.  We have to do our best to capture those moments now, before they actually become lasts, before there is no hope of recapturing them, before the regrets set in and that's all that we have left.

I still have moments when I don't believe it really happened or that he's really gone, even now, 23 months later.  Damn I miss him. 

What I wouldn't give to see this smiling face again //

"There are no goodbyes for us.  Wherever you are,

you will always be in my heart."  ~Mahatma Gandhi

Waving A White Flag

During track season in my sophomore year in high school, my team competed in a track meet that sticks out in my mind more than many of the rest.  My last event for the day was the mile run, my favorite and my strongest event.  As the starter's gun was fired to signal the beginning of the race, the rain that had been steady but fairly light all day long turned into a torrential downpour.  Over the course of the first three laps we ran around the track, there was lots of accidental jostling within the front pack of five or so runners; not only was the track slippery, but the pelting rain was making it hard for everyone to see.  As we charged into the curve of the final part of the race, the usual volleying for position was going on amongst the runners, and one of the girls behind me stepped on the back of my shoe.  The shoe didn't come off my foot, but the mishap made me lose my balance, and I threw my left hand out to the side to steady myself so that I wouldn't fall down, knocking into the runner who was to my left in the process, which in turn caused her to step out of bounds on the inside of the track.

I realized that I had bumped into the girl, but, because I kept running along with the rest of the pack as this split-second chain of events was occurring, I didn't see her step over the line.  As I eyed the finish line at the end of the straightaway as we came out of the last curve of the track, I put my head down to block the driving rain and gave it all I had, finishing a step ahead of the pack to cross the line in first place.  

I remember wiping my rain-soaked face and looking over at Dad who was standing at the fence at the edge of the track and seeing the pride in his eyes.  I knew he was thinking, "Well played," and then I saw him shift his gaze back towards where the other runners were standing on the track, and I knew he was reminding me to congratulate them.  As I turned to step into the circle of girls hovering in the rain just past the finish line, one of the lane judges stepped towards me and said, "You are being disqualified for fouling in the curve."  I was stunned; I didn't say anything back, but my coach stepped in and a conversation ensued.  It was a fruitless one, though, and the judges' decision stood.  

I felt hot tears running down my face as I walked off the track towards my parents in the cold rain.  I was disappointed, and I was embarrassed.  Sportsmanship was very important in my family, and I felt like people would think that I had somehow been trying to win by cheating, even though the mishap was obviously an accident.   After the rest of the track meet was called off due to the weather, the ride home on the school bus with my team that afternoon seemed twice as long as the ride to the event had seemed.

The next morning, Dad woke me up and told me we were going to the track to run.  I usually took the day off from running on the day after a race, but I was still so disheartened from the day before that I just got my gear on and climbed into the car without questioning.  We were silent as Dad drove to the track and parked the car and as we both got out of the car and walked onto the cinder track.  "Here's the deal," Dad said. "I don't want what happened yesterday to make you doubt yourself, and so we're going to run it again.  As long as you can run the same time you ran in the race yesterday, in our minds the victory will stand."  

We jogged a couple of laps to warm up, and then we shifted into race pace to cover the four laps around the track in step.  Dad offered a few words of encouragement and pacing advice along the way but was mostly quiet until he looked down at his stopwatch as we crossed the finish line.  "Ten seconds faster than yesterday," he told me.  "That's it: now we're not going to worry about yesterday."

I've thought about that day - not the day of the track meet, but the one when we were out there by ourselves on the track the day after - several times since my dad went on ahead; the "leave it all behind" mentality that he had is forever etched in my memory.  But that's a much bigger challenge in grief, way bigger than I ever thought it would be.  Leaving it all behind really isn't an option in this type of situation.

Nothing in my life prepared me for the loss of my dad, not even in the least, including his 10 week-long illness.  I'm still surprised by how robbed I feel, both on my dad's behalf and on my own.  The things that happened during the time I spent with him while he was sick play in my head over and over again, and, to be completely honest, as hard as it is to think about those days, a part of me doesn't want to leave it all behind because I don't want to lose even a single memory that I have of him and of my time with him.  

I am learning that grief is full of surprises, most of which I have found to be of the unwelcome variety.  It's surprising how it can feel so lonely, so endless, so awful, and I've been told that's true pretty much from the time of the loss on.  The threat is always on the horizon, and that's something I wish I didn't have to know.  

At some point during my first year of grief, when my husband found me holed up crying for the 10,000th time, he just looked at me and then said very quietly: "You're not the only one who misses him."  In that moment, I opened my eyes to the presence of the grief and hurt of others; I'd been so consumed over losing my dad that it was only when that was pointed out to me that I could really start to see the loss from another person's perspective.  And, in doing so, another round of hurt went through me, and another round of feeling useless and helpless, for I was already doing all I knew to do and yet nothing seemed to be getting any better.

And even today, there are times when I have to force myself to remember that I am not the only one this loss has affected so very profoundly.  Like a lot of people who are grieving, I tend to isolate myself when I am upset, and that seems to make me feel like it is only I who is still feeling this amount of pain, feeling stuck and angry and so much more.  Of course, I know in my head that isn't true, but sometimes it's all I can do to keep myself together and I worry that at some point I may fall short of the strength needed to hold another person up too. Although at other times when I am able to see through the fog and realize the grief that is bearing down on others I love, I feel a sense of protectiveness and of bonding that somehow helps to lessen my own grief, and I know in my head and in my heart that the only way that anyone gets through any of this is through togetherness.  

The second birthday of my dad's that we had to spend after he went on ahead hit me a lot harder than I thought it would, another surprise I could have done without.  Truthfully, it has been only with the support and love of my family that I have gotten through the shit of the past two years, and this point was driven home yet again on my dad's birthday when I realized that had it not been for my family I would have surely spent the entire day - if not longer - crying hysterically.

I'm really not good at accepting comfort when I'm sad, and I have to say I've done a LOT of crying behind the scenes because of that and because I don't want my sadness and grief to permeate everything for everyone.  Many nights I've lain in the bed on my side with tears streaming down my face and into my ear and onto the pillow, and my husband just puts his arms around me and lets me cry, because we both know that there's not really anything to say that can make it any better.  The depth of the emptiness and the sadness that bear down on me at times like that continues to surprise me.  I believe that at some point life will give me moments that seem so much brighter than those moments seem dark, but I also know it will never be the same without my dad.  I know that those of us who were lucky enough to know him will always feel a piece is missing, but I also know that we will proudly carry him forward, not just to tomorrow, not just to next year, but into future generations who will undoubtedly hear many, many "Wild Bill" stories in the years to come.  I hope that in carrying on in his honor, at some point in the future we will be able to leave behind much of the sadness and the pain.

"This emotional pain caused by loss suffered does not move toward forgetfulness.  It moves, rather, in the direction of enriched remembrance; the memory becomes an integral part of the mourner's personality.  The work of mourning has been completed when the person no longer appears as an absence in a barren world, but has come to reside securely within one's heart.  Each of us must grieve in his own manner and at his own pace.   Periodic waves of grief are often felt for the remainder of one's life.  The mourning process must be given the freedom to find its own depth and rhythm; it cannot be artificially accelerated.  A loss, like a physical wound, cannot heal overnight.  There is no way to hurry the stages of tissue growth, and there is no way to speed up the healing process of mourning.  But, when mourning has been completed, the mourner comes to feel the inner presence of the loved one ... the person is present in a new form within one's mind and heart, tenderly present in inner time without the pain and bitterness of death.  Once the loved one has been accepted in this way, he can never again be forcefully removed."  ~Robert Chernin Cantor in And a Time to Live: Toward Emotional Well-being during the Crisis of Cancer, Harper & Row, 1978.

Part 45 – Spending Time

Continued from Part 44

As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house.  Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice.  As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines.  Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.

When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video:  a flurry of activity, with different family members and later the Hospice nurse coming in and out of the picture and with Dad there in the center.  After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17.  I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March.  My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February.  We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time.  It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future.  As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.”  Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.

After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again.  We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy.  I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial.  I had more than enough of those things on my own.  I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle.  We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.

We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled.  As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time.  My sister Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon.  How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was!  Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets.  Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.

Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend.  Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could.  We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock.  None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.  

Around the middle of the morning that day, I went upstairs to take a shower.  As I was getting dressed, Jennifer knocked on the bathroom door.  “Dad is eating bacon and drinking beer!” she said excitedly through the door.  With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that my brother-in-law David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away.  The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades.  I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.

In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish.  “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.”  I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.  

“I need to close my eyes for a little rest,” he said after he ate.  Not long after that, though, he opened his eyes and motioned for me to come closer to him.  As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”

Looking back from my vantage point now thirteen months later, I wonder if he meant what I thought he meant at the time when he said these words.  I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.

“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.

Not completely convinced, he said, “Are you sure?” 

“Yes, Dad,” I told him.  He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture.  “You want your covers to be pulled up, right?” I asked him.  

“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.”  I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that he believed and trusted that we would continue to be able to meet his needs, and I was so grateful for that.

Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den.  Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom. 

Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible.  And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next.  Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled.  Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.

The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky.  And so, we improvised:  my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion.  We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch.  My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed.  In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.  

I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed.  With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed.  Given the circumstances and what we thought Dad needed, I thought it looked perfect.  But next came the really tricky part: moving Dad from one room to the other.  Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold.  Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.

Mom and the kids came back and were glad to see that the undertaking had been a success.  We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes.  It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before.  The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were.  Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.”  As my mom, my sisters, and I listened to her words, our hearts were breaking.  We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept. 

Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something.  She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?”  I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer.  He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”

I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”

“OK, Dad,” I said, and as I left the room to get the beer, he called after me:  “Tell everybody: don’t worry, just hurry!” 

I returned as quickly as possible with the beer, and then I held the straw while he sipped it.  After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later.  He said he didn’t want to have to bother anybody or to wait if he wanted it.  I told him that I liked getting things for him, and, with a half-smile on his face, he responded, “Well, then, I guess I just don’t want to have to wait.”  

Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon.  Each of them had to lean in close to him so they could hear him talking with his scruffy voice.  When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too.  As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.

We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day.  He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital.  Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future.  He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too.  It was like that was the last thing on his Revised Bucket List or on his “to do” list.  

Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition.  What he needed wasn’t food or calories – it was re-assurance, comfort, and love.

By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music.  He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do.  The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep.  Several times while he was asleep, he called out things like, “I have to check on Mom!” and “Stanley [his younger brother] and I have to finish our homework!”  By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too.  It seemed like Dad was pulling out all the stops just to hang on.

Before I left, I went over the medication instructions again with my mom and Nancy, who, along with Nancy’s husband David, were staying there.  My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them.  As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest.  He was quiet and still.  I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet.  I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room.  Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.

Up Next … Part 46 – Paving the Way