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.

Not Knowing: Grandmom's Story, Part 4

Continued from Part 3 - Grandmom's Story 

One of the things that my dad worried about the most when he was sick and even before then was his mom, who, since the death of my grandfather many years before, had been living alone in a small town in southern Alabama until she suffered a stroke at the age of 87.

My daughters and my dad, with Grandmom, Sept. 2010

For all of my life, I'd thought of my grandmother as one of the most fiercely independent individuals I knew, a person whose goal it was to leave the earth a better place than she'd found it, without asking for much help or (as she put it) "without burdening" others and without using anything as an excuse for not doing her part to help others in need.  Grandmom has perhaps one of the most interesting life stories I've ever heard, with lots of adventures and even more challenges faced along the way.  She pinched pennies, cut corners, and made due for all of her life, but, a deeply religious person, she never failed to tithe or to give of her time when her church or someone in her community needed assistance.  She was well-read, and maybe that was one thing that contributed to her acceptance of people from all walks of life, of all backgrounds and all races, which was not a practice often seen in that time.  From the way I saw things, Grandmom didn't concern herself too much with what a person's income or job title was or with how fancy of a car or house a person had; as long as someone seemed to have a good heart, seemed to be trying to "do right," and seemed to be genuine and kindhearted, Grandmom liked that person, and, like my dad, she extended courtesy and respect to most everyone she met.

Although the level of anxiety and extreme depression that Grandmom had been experiencing seemed to leveled off for the most part over the course of the weeks after she had been told about my dad's illness and subsequent death, her overall health did not improve.  On the afternoon of April 18, 2011, my mom got a call from the nursing home and was told that Grandmom's condition had worsened.  Mom called my sisters and me to update us as she hurried to get to Grandmom's side, where she stayed for the remainder of the day.  With Grandmom's breathing labored and her skin color changed, Mom talked to the nurses and decided to spend the night with Grandmom so she would not be left alone even for a minute.  The staff at the nursing home was kind enough to move Grandmom's roommate to another room so Mom could sit at Grandmom's bedside in privacy.  Throughout the night, Mom read to Grandmom, talked to her, and tried to reassure her that it was ok for her to go on ahead, reminding her that she was so loved and that my dad and my grandfather were waiting for her in heaven.  Grandmom seemed to be at peace, and, as the first light of day could be seen through the big window in the room and with my mom holding her hand, Grandmom took her last breath.

My sister Nancy joined my mom soon afterwards at the nursing home, and together they dealt with the things that needed to done, including calling the funeral home, packing up Grandmom's belongings, and saying their goodbyes.  There were some haunting similarities to what had had to be done after my dad's death just three months earlier, but at the same time this was a different situation for many reasons.  Given all that had happened to impact her quality of life and given her age and overall health, we all knew that Grandmom was prepared to go on ahead and that she very likely welcomed her own passing from this life.  From my perspective, it seemed that she had been leaning into the light for quite some time, dearly missing her husband of 50 years and many others who had gone before her - and feeling that her purpose on this earth had been served.  Personally, I will say that the news of her death hit me hard but that my mourning was much more for my own sake than for hers, and the grief from her passing and from that from my dad's was so enmeshed it was like pouring gas on a fire.  

I found a group email that my dad had sent out just before he'd gotten sick to update people about Grandmom, and I used that set of contact information to communicate the news to many extended family members and friends about Grandmom's passing and to let them know that we had decided to hold a memorial service for Grandmom in her hometown over Memorial Day weekend to give those traveling from out of town time to make the necessary arrangements.  Mom had the obituary run in the newspaper in Grandmom's town and contacted Grandmom's church to let them know as well.  

A couple of weeks later, a violent storm came through the area where I live overnight.  The noise of the thunder actually woke me up in the night, interrupting a dream that I had been having about my grandfather's brother Hilyard, whom I had only seen a few times in my life.  The last couple of times I remember seeing him, he was using a walker to get around; it had been many years since his passing and many more since I had seen him.  In the dream, though, he walked up to me unaided, looking younger than I remembered ever having seen him but so closely resembling my grandfather that it was easy for me to recognize who he was.  He looked at me and said very simply, "Your grandmother and your dad want me to tell you that they are ok," and then, before I could respond, he turned on his heel and strolled away.

When I checked my email early that next morning, I saw that I had a message from my dad's second cousin Carl, Hilyard's grandson, who had heard on the news that the storm had left damage to many homes in my city.  I was touched that Carl was checking in on us; I had not corresponded with him in the past except for the recent message about Grandmom - but I was stunned at the timing of the communication, just about an hour after I had had the dream about his grandfather.  I emailed Carl back and told him that we hadn't sustained any damage in the storm, but, not knowing what he would think if I told him about the dream, I didn't mention it then - but I did a few weeks later at the memorial service for Grandmom.

To be continued ... 

The Hospital Bed

I had a dream last night about the hospital bed that my dad was in when he died.  Actually maybe it wasn't that bed; maybe it was just a generic hospital bed.  Oddly, nothing was going on in the dream; it was more like a still photograph than it was like a movie - there were no characters and there was no plot or script.

But that started me thinking about hospital beds and the one that ended up being the last bed my dad ever slept in before he went on ahead.  I think that most people, including me prior to the end of my dad's illness, consider a hospital bed to be a white flag of sorts, a surrender of lots of things, the most obvious of which is one's independence.  The day that the hospital bed was delivered and set up in my parents' house, though, in preparation for my dad's being able to come home from the hospital so that he could spend his last days in a more familiar, more comfortable setting, that bed represented so many other things for my family; it was obviously a consolation of sorts, but one that brought with it the power to give Dad what he so desperately wanted and to release him from the jaws of the downward spiral of pain and anxiety that just kept getting worse in the awful environment of the hospital.  

The bed itself seemed alarmingly flimsy, I thought, insubstantial but sadly adequate to hold my dad's then-frail body.  The frame seemed almost like it was made of wire that was wound together, fabricated without regard to aesthetics, as far as possible from a piece of furniture that would otherwise have been allowed in my parents' house and just sturdy enough to get the job done.  Its defining feature was a rickey little hand crank at the foot of the bed that could be used to adjust the head of the bed up or down.  It was a shitty little crank, really, and thinking back to the cheapness of it makes me both sad and mad - sad for our situation and for the way we had to handle every damn detail in the whole chaotic situation ourselves except for a little help from the hospice company at the very end, and mad for the shittiness of the crank itself: for god's sake, couldn't the insurance company drum up a few bucks more to send us a bed with an electric crank?  Wasn't the situation itself torturous enough without one of us having to use such a rudimentary apparatus, like it was the 1950's or something?  

But we were grateful for the bed with the old-timey crank; we were grateful that hospice had arranged to have it delivered, and we were as grateful as we could be that we were able to arrange for Dad to come home as he had been urgently requesting, actually begging, from his higher-tech bed in the hospital.  

I only vaguely remember the scene of when the guy from the medical supply company came to pick up the bed when Dad was done with it; in fact, I don't even remember if there was only one guy that came or if there were two.  I remember thinking, once they had taken it away, that my parents' bedroom suddenly seemed heartbreakingly empty, even though the hospital bed had only been in there for less than a week and even though my husband and my brother-in-law had moved my parents' king-sized bed back over to the center of that part of the room as it had been before we'd had the hospital bed set up beside it; things we set up like they had been before, but nothing was as it had been.  I remember standing in the space where the hospital bed had just been just minutes before, with tears running down my face, looking down and noticing that there weren't any indentions from the wheels of the bed left in the carpet and wondering how in the world a visible mark hadn't been left where something so big had happened.

Happiness - Pursuit and Perspective

I remember the first time I had a running injury that affected not just my running but also bothered me in when I wasn't running.  I remember lying in bed at night with my foot throbbing and thinking about how I hadn't appreciated being injury-free before I'd gotten hurt.  In time, the foot got better and the pain went away; I went back to running and back to not taking much notice about how lucky I was to be pain free.

That's kind of how it works when someone you love is seriously ill.  Except that in many cases, I would venture to guess, that perspective sticks ...  

... because seeing a loved one suffer physically and emotionally and going through all the things that grave illness entails changes a person, not just for during that time period but forever.

Since my dad's diagnosis and his subsequent death ten weeks later, I've begun to view happiness as the absence of sadness -  and goodness in life as the absence of, well, badness.  

People talk a lot about the pursuit of happiness, the quest for the Holy Grail, thinking they will be happy if ... if they win the lottery, if they get a promotion, if they lose weight, if this or that happens.  I've been guilty of such myself in the past.  

But that was Before. Before Cancer.  Before Loss.  Before I knew.

And so here's another perspective for people who are perpetually in search of something more: conducting such a vigorous search for happiness or peace or satisfaction or whatever it is they are looking for eventually becomes a self-defeating quest; the crusade itself is a constant source of stress and anxiety that is likely interfering with the attainment of that very objective.  Instead of always looking for something more, something "better," it might be helpful if they take a few steps back and consider how lucky they are to have their everyday lives, to be in the midst of the usual stress and chaos, rather than the alternative, which I guess is either being completely alone with nothing or no one to care about - or trying to cope with such extraordinary problems that going back to those everyday things becomes the goal with happiness as the reward.

In the thick of the usual day in-day out struggles, it's so easy to get caught up in thinking that life is tough, that things aren't great, that there is something better out there that you wish you had.  But when adversity comes along, especially when it affects your health or that of your loved ones and especially when it is life threatening, you realize that you just want to go back to having things the way they were.  Your perspective becomes that you didn't need anything more, because life was already good.

I think that's what tragedy gives away, or at least that's one thing that we can choose to take away from tragedy.  Once we've been through it, we have that special realization, that insider's knowledge that things could always be worse, because we are all too aware that, because adversity can be lurking just around the corner, we need to appreciate the calm, the ordinary, and the mundane, and that happiness is not something that we need to pursue - it's something we need to recognize in what we are already fortunate enough to have.

Dog Tags

Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.  

Today I remembered his dog tags.

When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.  

My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts.  He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts.  The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran.  Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact. 

It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life. 

But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days.  The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon.  He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke.  And so, on that fateful day, he set out for the first time in many months without any form of identification at all.  

I think when most people think about dog tags, they think about toughness.  That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.

I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized.  It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him.  It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon.  We would not have known that anything out of the ordinary was going on.  Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness, it could have been worse.  At least we knew where he was, and what was going on with him, and at least we were able to be with him. 

Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer

In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends."  As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible.  In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."

And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail.  And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.

Not Knowing: Grandmom's Story, Part 3

Continued from Not Knowing, Grandmom's Story Part 2

In reading the book "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying," by Maggie Callanan and Patricia Kelly, I came across many things that spoke to me in regards to what my family and I had experienced during the end of Dad's illness.  I read the book with a goal of gaining some insight and perhaps even some perspective about my dad's death, and, in the process, I began to see that there might be another reason for the recent changes in my grandmother's emotional state besides the cognitive decline associated with her medical condition.

One section of the book is about things that may be needed in order for a person to die peacefully:

"Some people realize a need for reconciliation.  Some request the removal of a barrier standing in the way of a peaceful death. Still others need particular circumstances to die peacefully - perhaps choosing the time of their death or the people who will be there.

Realizing what they need, dying people often become concerned; some communicate a tremendous urgency.  Coherent requests usually bring action.  But requests that are vague or indirect may be missed or ignored, leading to frustration, anxiety, and sometimes agitation.  If the awareness of an important need comes late - when death seems to be imminent - the person may delay or prolong the process of dying in an attempt to settle an issue or effect a final reconciliatory meeting.

A person's anxiety, agitation, or prolonged dying can be upsetting for everyone ... Often, the response to agitation is to sedate the patient ... Sedatives may help relieve agitation, but medicines alone are not the answer."

Reading these passages caused me to see some things in a new light, not just about my dad's passing but about Grandmom in her terminal condition, including the fact that our decision not to tell her about Dad's illness or his death might not be the best choice.  According to the authors, "Sometimes a family decides to withhold info about the death of someone the dying person knows.  While this is typically done out of kindness and concern, the truth often brings peace instead of discomfort or upset to the dying person."

I shared that insight with my mom and my sisters, and we decided that Grandmom needed to be told about Dad.  None of us wanted to do it, but we believed it was in her best interest and we hoped the information would help to ease her mind.  As my sister Jennifer recounts, "We were so worried that she would get the idea that he abandoned her, that he didn't want to visit her again, or maybe even that he didn't love her anymore, and of course we wanted to do anything we could to prevent her from those thoughts, which of course were absolutely untrue."  We resolved to tell her the next time one of us could go with Mom to visit her. 

Shortly after that, on the Tuesday before Dad's burial was scheduled on Saturday, Jennifer arrived at our parents' house, and she and Mom went together to see Grandmom.  Here is Jennifer's recollection of what happened when they got to the nursing home:

We rounded the corner and saw that Grandmom was sitting up in her wheelchair, which was parked just outside her bedroom door.  We greeted her, and then I kneeled down right in front of her and held both of her fragile hands in mine.  I said something like this:

"Grandmom, I want to tell you something that might make you sad, but I feel like you need to know, and  I don't want you to worry.  Bill was sick and had cancer.  He went to the best doctors and the best hospitals, but, even as strong as he was, he was not able to fight off the cancer.  He passed away and is in heaven now with God and with Roy [our grandfather, Grandmom's late husband].  He is not in any pain.  You should not worry.  Vicki and Stephanie and Nancy and I were all with him while he was sick, and we took good care of him.  He always asked about you and tried so hard to come back to see you again, but he was too sick.  You were so important to him, and he loved you so much.  We promised him that we will take care of you no matter what. Then, when God decides it is your time, you will get to go to heaven and be with Bill and Roy again."

Somehow I did it without crying -- I just felt really focused on giving Grandmom some relief and definitely did not want to cause her any additional sadness or worry about why I was sad, and so I just talked clearly and slowly and looked right into her eyes and told her.  She wasn't really able to talk much, but she definitely seemed to be listening to me, and I truly think had a look of relief and understanding on her face after she heard the news.  She did not cry.  A little while later, when we left, I hugged her again and told her I loved her and that Dad loved her and that we did not want her to worry. 

In the days that followed and over the course of the next two months, the nurses reported that she was sleeping better and was much less anxious.  She required fewer medications and wasn't crying anymore.  We like to think it was because she understood that her son loved her until he took his last breath and that, given the information about what had happened to Dad, she was able to hold onto the belief that he had gone on ahead but was waiting for her in heaven. 

To Be Continued - Part 4 of Grandmom's Story, Coming Soon

The Chemo Room: What's Going On With THAT?

Here's something I've been wondering about lately ...

Why are cancer patients forced to get their treatment in a crowded room?  I don't know of any other diagnosis that results in patients being forced to sit in a room together while each of them, one by one, gets stuck with a needle and then filled with toxins, all while they sit there in a circle, like they are hanging out around a campfire getting ready to sing Kumbaya and roast marshmallows.

Is it an attempt to mask the fact that each person is really fighting alone, no matter how much we love them and no matter how much we support them and want (need) them to get better, no matter how much we wish we could take away their pain or how hard we would fight to take their place?  

Is it supposed to be like a Cancer Club, with their cushy recliners and (if you're really "lucky,") flat screen TV's?  Because it's really not. Or at least it wasn't when I was in there with my dad.  For us, it was an environment of extreme stress, pain, and fear, tempered with just a little bit of hope and the belief that what was happening would be worth it.  But it didn't take having other Cancer patients in the room with us for that to be true. In the first chemo room we were in, the one at Duke, there were curtains between the recliners.  (Prior to then I'd read that only the newbies use them, but I didn't care - I pulled ours closed anyway so Dad would have some semblance of privacy.)  I'd heard that after the first few visits in the Chemo Room most patients prefer to keep the curtains open and chat with each other.  That sounds great.  And maybe for some people it is.  But I didn't see it, and I really can't imagine it seeming like anything other than an invasion privacy.  

For what I think were purely logistical reasons, our second visit to the Chemo Room was far worse than the first one. Neither one, of course, was a walk in the park for Dad, and, as you know if you've read our Behind The Scene Story, neither one ended up being worthwhile.  Both times, though, I remember feeling the breach of confidentiality and the urgent need for privacy and peace and comfort for Dad, all of which were not to be found in that type of a setting for him.

Is it an attempt on the part of the medical staff to keep people from showing their emotions?  We all know that peer pressure can be a very powerful thing.  I know there are lots of times in my life when I was hurt or scared and I wanted to cry but didn't because other people were around.  That just doesn't seem very nice, though, does it - using someone's pride against them, humiliating them into shutting down their fear, their pain, their anxiety, when they're battling for their lives?

Is it a cold hard dose of reality (like HEY YOU!  YOU REALLY DO HAVE REAL CANCER, and soon you'll be pale, bald, and sick-looking just like the other people in here!)?  OR, to shame them into not crying when they have to be stuck for the IV, when the chemo burns their veins, when terror hits them in the gut harder than any boxer ever could.  

I guess the most likely reason, though, and one that's in some way actually even sadder than those reason, is that it's a way to save money.  

Just one more thing about stupid Cancer that I don't understand.

Not Knowing, Part 2

Continued from Part 1

It's not always easy to visit someone in a nursing home; seeing a person that you care about in that type of environment often brings up a lot of emotions, some of which are not very pleasant.  Although I did it as often as I could, before my dad got sick, I thought it was emotionally difficult to visit Grandmom; she had changed so much in such a relatively short period of time, and she seemed so sad, so lost, so much of the time.  

Dad with his mom, on her 89th birthday, one year before she was put on hospice and 13 months before he was diagnosed with brain cancer

After Dad's diagnosis, though, it was even harder, physically - because my sisters, our mom, and I needed to be with Dad - and emotionally - because we had decided not to tell Grandmom about Dad's condition.  When we went to see Grandmom during that time, we had to come up with things to talk about in her presence that didn't have to do with what was going on with Dad, which was very challenging because, truth be told, Cancer and the things that came with it were pretty much all any of us were thinking about then. But we did what we had to do, and we visited Grandmom as often as we could, as Dad made it through surgery, and then went to rehab, and then went to the Brain Tumor Clinic at Duke, and then started chemo.

My family had made the decision not to tell Grandmom about Dad's illness early on; when my sister and I went to visit at the nursing home for the first time after Dad had been diagnosed, we shared the bad news about Dad with the staff there but made it clear that the information was not to be shared with Grandmom as we did not want to upset her.  Then, when Grandmom took a turn for the worse on the day after Thanksgiving, we took that decision a step further by extending the shelter to Dad as we kept the news about Grandmom's decline from him. As we had been doing with his mom, we didn't want him to have to worry or to feel guilty about anything, given what he was battling himself at the time.

Even after the hospice nurse predicted that Grandmom wouldn't "be with us" for more than a couple more days after that, somehow she pulled through, a testament to her strength and a sign of what we later realized but didn't know at the time - looking back from our vantage point now, it seems that Grandmom was waiting to say goodbye to her son, and, not realizing why he wasn't there so that she could do so, Grandmom hung on, literally for dear life.

Me, showing Grandmom one of the cards she got for her 90th birthday, just before she went on hospice care

After Dad's second round of chemo, at his insistence, my mom and my sister Nancy took him to visit Grandmom at the nursing home.  He had been getting around my parents' house using a walker, but he had a wheelchair for longer distances and that's what he used for transport that day.  As always, Grandmom smiled from ear to ear when she saw Dad that day; discordantly, in what I saw as both a relief and also an alarm, she did not seem to notice the wheelchair or the jagged scar on his head at all.  

Not long after that, Dad had to go to the hospital for the second time and was in such critical condition that it was all we could do to manage the care that he needed between my mom, my sisters, and me. My sisters and our children visited Grandmom on Christmas Day, again keeping the news of Dad's situation from her, and reported back that she was doing about the same, holding her own and hanging in there.  Other than that, though, for the ten days we were in the hospital that second time around and during the six days after that when Dad was home before he went on ahead, we relied on reports from the hospice nurse who called every two or three days to report on Grandmom's condition, and we were relieved each time to hear that there had been no change on that front.

Christmas Day 2010

When we made the decision to bring in hospice care for my dad, it was difficult to wrap our brains around the fact that both he and his 90 year-old mother were both on hospice.  The way that Grandmom had defied the odds so far, despite the fact that her doctor and later her hospice nurse had both said her days were numbered - not once but twice, over the few months preceding that time - allowed us to believe that Dad would persevere and beat the odds as well, thus potentially allowing both of them to be with us for some time to come.  Those rose-colored glasses were a very powerful coping mechanism for us at the time, but they were also what created the perfect storm-type of setting for my family to enter into a state of utter shock when Dad went on ahead, less than a week after he came home from the hospital and hospice care had begun.

We just thought it was hard to visit Grandmom before all of this happened; after Dad's death, it was an overwhelming and almost insurmountable feat, for so many reasons.  Again, the shock that we were all dealing with in our early grief made it difficult to put one foot in front of the other at that point; I personally felt as if I was in the middle of a nightmare from which I kept expecting to awaken.  Dazed, confused, stunned, devastated - all of those things made it challenging to do much of anything in those days.  Pretty much everybody that I came into contact with in the month or so after Dad's death knew what my family had been going through, and so thankfully I was spared having to say the words about what had happened out loud:  saying My dad died was something I was not adequately prepared to get through for many months after the fact.  Telling Grandmom that her favorite person in the world, her son, whom I am sure she still thought of as her baby, as someone for whom she was responsible for protecting in many ways, was no longer on this earth, was more than I could cope with at that time.  Even more than I didn't want to tell her, though, I didn't want her to have to know.  Whenever I thought about breaking the news about Dad's death to Grandmom, I kept going back to what I had learned for myself the night before Dad's surgery and what I still believed to be true: not knowing is not always the worst thing.

I saw a story today about an Olympic diver from China whose family kept the news of the deaths of her grandparents and of her mother's battle with cancer from her for years while she was away living at a training camp, presumably so as not to distract her from achieving her goal of winning a gold medal at the Olympics (which she just did). 

CLICK HERE TO READ THE STORY

I realize that the vast majority of people who read that story will think it was unreasonable or possibly even cruel to have kept that news from the young athlete, but I just don't think it's something that can be adequately understood by those of us who live in situations were there hasn't been such value placed on competition and on winning .  I think such values, much like grief, can result in some very different choices being made, but that doesn't necessarily make those choices wrong.  For the most part, all of us do what we think is the right thing to do in the given circumstances, given our resources and our perspective, and I'm sure that's what this girl's family was doing as well, just as we were doing by not telling Grandmom about Dad.

Sometimes, though, lessons can only really be learned by living, and perspective can only be gained through experience.  A few weeks after Dad went on ahead, my mom started getting phone calls from the nursing home about an increase in Grandmom's levels of sadness and anxiety.  Grandmom actually had several episodes of what I can only think were panic attacks; she could not communicate clearly enough to explain to anyone what was going on, and so the only thing anyone could think of to do to help her was to increase her anti-anxiety and anti-depression medicines.  That ended up helping some, but we continued to get reports that she still she seemed distressed much of the time.

Not long after Dad's memorial service, I started going to a grief counselor.  The first thing I asked her in our first session was if she could recommend any books for me to read that might help me.  (Side Note:  That was the beginning for me of a shift from being obsessed with researching treatment for brain cancer to being nearly consumed by wanting to learn more about grief in an effort to cope, something that I continue to do even now.)  The book she suggested was "Final Gifts", which was written by a hospice nurse named Maggie Callanan.  In reading it, I learned many things and gained a new frame of reference, and I also started to think that maybe we were making the wrong choice by not telling Grandmom the truth about what had happened to Dad.

Continued ... Not Knowing, Part 3