200th Entry!

This blog entry marks the 200th note published since this site was started in May of 2011.

In that time, there have been over 15,000 visits to the blog, by people from all over the world.  I think it's fascinating to look at blog statistics and to realize the power of the Internet:

It is so heartwarming to see how Dad's story is carrying on and how his life and his perspective continue to impact people, rippling outward to individuals who didn't know him and to many who don't know me, and the support and the comments that I have received as a result of this blog have meant so much to me, more than I can adequately convey.  In the world of grief, one thing that helps to hold us up is camaraderie, and I will always remember that which has been bestowed onto me and my family.

I've learned a lot from the emotions and the thought processes that go into writing for this blog and from the comments that have come from others who seem to somehow "get it."  Because of the blog, I've gotten feedback from several people whom I knew only casually or whom I knew in a completely different context over the past couple of years, and I've gotten to know several people in a different way than I did before.  

Through this process, I've also realized the value of words.  Words are important, and they can be healing or hurtful, depending on how they are put together and on how they are spoken and how they are heard.  Since my dad's death, I have grown to detest some commonly used wording and to prefer some wording over others for certain things.  As I've mentioned, I hate the term "new normal;" it seems better to me to say "new routine" or "moving forward" instead because I don't think I'll ever see not having my dad here with me as "normal."  As is evident in the majority of the 199 other blog entries, I prefer the term "going on ahead" to "died" or "passed away;" the former just sounds so harsh and so final to me, and the latter sounds so passive, as if he didn't try with all his might to stay here in this world with us for as long as he possibly could.  I don't like to think about dying as a person's losing a battle; I think it's better to say he ended his battle instead of saying he lost his battle with cancer.  The latest perspective in wording that has come to my attention is a question that is often asked of people who are coping with serious illness or those who are grieving: "How are you?"  What I have come to see as more fitting phrasing is "How are you today?" That seems to open the door for a more honest conversation instead of just having the response be "I'm fine" when so often that just isn't true.  It's semantics, I know, but somehow it's become one of the things that I pay much more attention to these days, as part of my current perspective.

One thing that I used to say as a child that I wanted to "be" when I grew up is a writer; as a teenager, I told that to my dad a few times, and each time he said he didn't think it was likely that I would "make a good living" that way.  (It was very important to him that my sisters and I each found a career that would give us job stability and that would allow us to support ourselves.)  I guess it's kind of ironic then that through his illness and through the grief that followed after he went on ahead I have somehow found my way back to writing, and, if he were here today, I would tell him that I am using writing as a way to make a good living, maybe not for profit but for perspective and for therapeutic purposes.

In closing, I'd like to share a quote about grief that I came across in Dean Koontz's book Odd Hours:

Grief can destroy you -- or focus you.  You can decide a relationship was all for nothing if it had to end in death, and you alone.  Or you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it.  But when it's over and you're alone, you begin to see it wasn't just a movie and dinner together, not just scrubbing a floor or washing dishes together or worrying over a high electric bill.  It was everything, it was the why of life, every event and precious moment of it.  The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time; you're driven to your knees not by the weight of the loss but by the gratitude for what preceeded the loss.  And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life.

Part 50 - Saying Goodbye

Continued from Part 49

The time our family had while my dad was on hospice was intimate and special.  We’d spent what time we could together and had taken every opportunity possible to hoard all of the good memories we could while he was sick, and having those last few days to care for him in the peace of my parents’ house and to be with him just a little longer was something for which I will be forever grateful.

Dad was the leader of our family, and he led us through this too, showing us the way.  We kept vigil, waiting for what we knew was coming but what we so didn't want.  Dad waited too. Maybe he was ready to die, but more likely I think he was just ready to be done with the suffering.  By all accounts, he waited as long as he could for us to be ready.  I’ve heard it said that sometimes people who are dying can control the exact time that they go; I believe with everything that I am that this was true for Dad, yet another display of just how strong he was, of just how much he was willing to sacrifice for his family, and of just how much he loved us.

As the sun came up on the morning of January 5, 2011, my sister Nancy, Mom, and I sat around Dad’s bed, taking turns holding his hand and talking softly to him.  I knew in my heart that he was holding on with every bit of determination he could muster.  It was obvious to us that he was waiting for something.  As the sunlight poured into the window, my mom, realizing the date, told my dad, “You made it, Bill!  You’ve made it to January 5^th.”  Five was Dad’s lucky number, as anyone who knew him well knew, and we thought it would comfort him to let him know that it was the fifth.  I knew that as much as it must have hurt Mom to give him the permission that we knew he needed to go, she did it because she knew he needed to hear it and because she loved him so much.  I told Dad that my middle sister Jennifer was on her way and that she would be there late that afternoon.  He didn’t respond, but I knew he heard us, and I knew he felt he needed to wait.

Over the course of the next few hours, his extremities began to get cold to the touch and, by late morning that day, his heart rate was up, his breathing was raspy, and his skin color was changing.  We knew he was not going to be able to hold on much longer, but, as well as we knew him, we knew that he would do everything he could to wait for Jennifer.  

As you would expect, there was a lot of crying that day.  We weren’t just crying in anticipation of the loss we knew was coming soon; we were crying for the loss of things that Dad had experienced in the ten weeks since his diagnosis, for the pain and anger in our hearts, and mostly for the time in the future that we would miss spending with him.  My aunt and uncle came over and brought food for us; my uncle said a meaningful prayer over Dad and then they said their goodbyes.  Mom, Nancy, and I each spent time alone with Dad, lying with him and talking to him, each of us promising him that we would take care of the others because we knew that’s what he was most worried about.

My other aunt picked up Jennifer at the airport and delivered her to my parents’ house as promised late that afternoon.  We had about five hours together after she got here.  We each had time to lie in the bed with him and talk to him. He fought right until the end, and saying goodbye was the most difficult thing any of us had ever done.

During the time I spent alone with Dad that day, I thought back to the dreams that he’d had while he was in the hospital, dreams he later told us about and in which he was so scared because he thought he would be lost and we wouldn’t be able to find him.  I so did not want him to be scared or to worry like he had in the hospital; I told him repeatedly that day that it was ok to let go and that he did not have to be afraid because we would know exactly where to find him and we would always have him with us in our hearts.  I believe he needed to hear those words, and I believe that he heard me.

When we realized that his breathing had changed, we knew it was time.  Our cries rose like sacred smoke, mournful and sad, with each of us doing our best to support him by telling him that he had finished the race and could go on ahead while knowing in our hearts that we would give anything – except requiring him to live in misery – to keep him with us. The moment we were waiting for had finally come, and Dad was released from us.  Into the stunned silence, Jennifer said, “Is that it?” and the hospice nurse nodded her head as we cried and tried to convince ourselves of the reality of what had happened.  After about a minute, Dad gasped one last time, fighting to the end.  We kissed him and tearfully told him we loved him as his body quieted.  It was, by far, the most emotional moment in my life.  My dad was the most vibrant person I had ever known, and I knew I was so lucky to have had him as such an influence in my life, but, in that moment, there was only sadness, and emptiness, and a sense of utter purposelessness and loss.

What I have known for sure from that moment on is that no matter how many days, weeks or months you are aware of an illness, no matter what the doctors have said, and without regard to the changes you have seen the illness cause in your loved one, you are never truly ready to say goodbye.  I realized even in that moment that I was going to have to work harder than I ever had before to gain perspective that would hopefully keep me afloat and eventually pull me through and, ironically, I knew that my dad was the one who throughout my life had given me that perspective.

Pictures that were on the wall in my parents' bedroom

After we had made the necessary phone calls and things had settled down, we took turns sitting in the bedroom with my dad while we waited for the head hospice nurse and then later the people from the funeral home to arrive.  As I sat in the room, I – a person who considers myself to be relatively unafraid and someone who  is able to witness most any medical procedure or gruesome detail – struggled mightily to hold myself together.  I found that it was so difficult for me to look at his body, so small and pale in the bed, but I didn’t want to leave him in the room alone.  I sat on the edge of the bed and looked only at the photos of him that hung on the wall.  I made my voice tell my mom that I thought Dad should be dressed in jeans and a running shirt and running shoes.  He had always looked so handsome in a suit, but that wasn’t really him.  Of course, none of this seemed like it was really him or me in my mind, and the only way I was keeping from completely losing it was to let myself think that none of it was really happening at all.  I desperately wanted to find a way to reach back in time and pull him back, all the way back to before whenever it was that the first cancer cell had started to grow.  But I knew that I couldn’t.  I was sick to my stomach, and I was engulfed by sorrow.  After awhile, I went upstairs and, for the hundredth time since the diagnosis came on October 23, I called my husband and cried so hard that I thought the phone would short out with him on the other line. 

We knew that Dad would no longer be where he was after that night but that he would always be wherever we were.  He wasn’t going to be lost; we would know just where to find him, and that would be in our hearts.  That belief, and the thought that Dad wasn’t having to endure anymore, was the only thing keeping me from coming completely undone.

We called my aunt, and she came over with a bottle of wine; none of us knew what to do or how we were going to get through the night, through the days ahead, or through the future without Dad.  While the hospice nurses were in the bedroom with Dad, we sat in the den and had a surreal conversation about funeral plans.  (I kept hearing “This isn't really happening” in my head, and I’m pretty sure there was some screaming going on in there, too.)  For as long as I could remember (WAY before he got sick), Dad had said that he wanted to be cremated and that he wanted a celebratory memorial service to be held after he died.  He had brought these topics up in conversation many times over so many years that we had just accepted them as not really being morbid or sad; we just looked at those wishes as being a part of Dad’s personality.  For as much as he loved winning a race and dancing center-stage at each of our weddings, he was very modest and didn’t like being “gawked at,” at he put it, and therefore an open casket or a big funeral service was not what he wanted.  And with his positive attitude and fun-loving personality, it was no surprise that he had stated his preference was for a celebration of life instead of a more traditional funeral.  Again, we followed his lead, and the plans were put in motion.

When the people from the funeral home came, Nancy and I sat upstairs; we could hear what was going on downstairs but we couldn't see it.  I knew I would not be able to bear seeing his body taken from the house.  There were more tears, and paperwork my mom had to sign, and then more tears when that was done and my aunt and then the hospice nurses told us goodbye.  

So much had happened over the course of that day and night; the shock and sadness of it all was almost crushing.  When I think about how my mom and my sisters and I went to sleep that night, I am sure the only way we did it was out of shock and sheer exhaustion, and mostly the former.  I remember that I was bone-tired, but I had trouble sleeping.  I somehow simultaneously felt like I had no energy but I also had restless, unfocused energy since I was not physically tending to Dad any longer.  I felt helpless and hopeless, and so much more; mostly, though, I felt lost.

After a few hours of sleep, we woke up and made phone calls as we drank coffee.  Mom called the funeral home and was told to come in that morning to make the arrangements.  We quickly got dressed and got into the car.  As we drove along the winding road, the same road that I had driven on with Dad when I was taking him to Sonic and listening to him sing Christmas songs just a few weeks before, I found myself getting angry at the obligations that I felt were pressing down on my family that day and in the days to come.  I thought about how odd it is that family members are expected to plan an important event (“to make arrangements”) when we are at our most vulnerable, in shock.  It seemed ridiculous, yet here we were, on our way to doing what was expected, mostly because we didn’t know what else to do.  

When we got to the funeral home, the funeral director (salesman) started things off by telling us that we couldn’t have a graveside service until after that weekend (even though it was only Wednesday) because they were backed up from the holidays and wouldn’t be able to complete the cremation process right away. As I sat there processing that information. Jennifer said angrily, “I am so sick of the ‘holiday’ excuse!  We couldn’t get our dad what he wanted to eat on Thanksgiving Day because it was a holiday, he didn’t get the medical care he needed in the hospital because of the holidays, and now this??”  The director apologized, but, just like the other things that couldn’t happen due to the other holidays we’d had while we were coping with Dad’s illness, it was what it was.  The funeral director said they needed to have the information for the obituary right away so that it could run in the newspaper the next day, which we felt was important so that notice about the memorial celebration we were planning on the following day could be included.  We started off trying to dictate our thoughts to the guy, but after a few minutes of watching him struggle to keep up with the many thoughts and emotions in the room, we convinced him that it would be better if we used his computer and just wrote it ourselves.  With that done, we finished up with the “arrangements” (a term I was growing to detest more by the second), and then we drove back to my parents’ house, exhausted again.

Sitting on the couch in my parents’ den that afternoon, I could see his car keys still on the dresser by the back door, and I felt like I might suffocate from the sadness.  His bike was in the garage, ready to be ridden; his shoes were piled in his closet, ready to be worn; his to-do list was on his desk in his office upstairs with items still to be crossed off … but he wasn’t there.  The anguish in my heart was palpable.

My brother arrived from out of state that afternoon, and my husband and my daughters got in just after that. Together, we made it through that night, and then we got up the next day and waited for the rest of our family to arrive.  Just before my sister’s husband and her children got to my parents’ house, a beautiful rainbow appeared in the sky, a comforting sight that made me smile through the stream of tears I had going. My cousin, who owns a restaurant in Nashville, coordinated the memorial service, which was to be held at her restaurant, and she and I texted back and forth to iron out the details. That evening, my brother-in-law set about creating a digital slideshow of photos to show during the memorial celebration, with contributions and suggestions from the rest of us about which pictures to include and what music to use for the show.   We took turns holding it together and, well, not holding it together, and, as it had been while Dad was sick, somehow it worked as a group effort.  

Mom and I decided to sleep in the master bedroom with the kids that night.  The slideshow creation and the supportive “togetherness” (Dad would’ve called it “binding”) continued after we had turned in for the night; in fact, as I discovered the next morning, because Kevin was the only male in the family with a full head of hair, the late night activities even included shaving his head in tribute to Dad and so that if Mom needed anything during the memorial service she could scan the crowd and look for a bald head.

From left:  my BIL David, my newly bald husband, my BIL Peter, and my brother Lee on the day of the memorial

Somehow we made it to the memorial service on time; we had asked my aunt to bring boxes of tissues in case those were needed, but we’d forgotten to get a guest book for people at the service to sign.  My sister-in-law dashed out at the last minute and bought one, just one of many things that seemed oddly important that day as we went through the motions like we were in a dream.  

The memorial service was a great tribute; we were touched by those who attended and by the words of love, respect, and gratitude we heard from so many people that day.  Did it matter how we handled the memorial service? I thought.  Did it matter what I wore or who came?  Really, nothing mattered, except that I was together with my family, but it helped a little bit to have others who cared about my dad and about me and my family surrounding us.  Did I understand why some people whom I felt would come to the service didn’t?  No.  Really, I didn’t understand anything that was going on or that had transpired over the past ten weeks.  I didn’t understand it, and I didn’t want to.  I just wanted to cry, and maybe even to crumble.  But I couldn’t, and I didn’t. 

This is what someone said to me at the service:  “The highest tribute you can give is not grief but gratitude.”  I appreciated the message, and I understood that the meaning was that I could best pay tribute to the man I loved so very much by being strong and by moving forward.  What I didn’t understand at the time was just how tough grief is, and what I didn’t know was how profoundly it would change me.

This is the end of the Behind the Scenes Story; however, it is not the end of the story.  

Part 48 - I’ll Love You Forever

Continued from Part 47

I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.  

I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things.  I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.

On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and my sister Nancy and her husband David there as the sun came up that day.  There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick.  It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him.  We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us.  Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained.  Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been.  Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling.  As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.

Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!”  Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.”  Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43^rd anniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.

David and Mom stayed with Dad while Nancy went to work that day.  I have no doubt that Nancy was operating on auto-pilot, as was I at my job.  It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.   

Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately.  Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.  

Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop.  Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts.  Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of.  I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do.  After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock.  “We often do that when a family feels they are in crisis,” he said.  

I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours.  “That would be great,” I told him, and I knew Mom and my siblings would agree.  We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad.  Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders.  It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.

To be continued ... Part 49 - Being Called Home