Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “May 18, 2019”

5 Years Later… I Still Miss My Dad

For those of you, too young to recognize the photo above, the is a disc of vinyl on what was called a turntable.  The arm placed on the vinyl, had a “needle” or stylus that produced music, before there was MP3’s, digital downloads, and even CD’s (hopefully you know what those are, though as I understand they are being phased out now too).  In any case, I spent so much time listening to music this way.  I took care of my records.  No scratches, a common problem for vinyl, that could impact the quality of the sound, as well as the ability to play the music.

You see, over time, a condition might often occur, where the needle would get stuck on the record at a certain spot, and as the record continued to turn around, it would just repeat that same groove on the vinyl, over and over.  We referred to this as a “broken record.”

In life, there are many things that we face, that often get us stuck in that kind of rut, unable to get on to the rest of the record.  Metaphor aside, at least I used to be able to, just buy a replacement album if I wanted to do so.  And normally, I do not hold on to something for so long, because of that rut.  But there is one thing I have not been able to move forward on.

The loss of my father, now approaching five years.

It just has not gotten any easier.  But it is not for the reason that you think.  I have written before about my inability to grieve properly, not something I would describe as a character flaw, but rather a defense mechanism.  A mechanism I have carried most of my life, a way to protect myself.  But protect myself from what?

I have often discussed the three chapters of the life that I had with my father, a split childhood between married parents and then divorced parents, estranged for a majority of my later childhood from my father, but the second half of my life, moving on from all the hurt, rebuilding what we lost, having a relationship with someone that I considered one of the strongest people in my life.

We had a lot to mend with each other.  Things had been said.  Things had been done.  And were it not for a major medical crisis, we may never have turned that corner.  That event opened a door to discuss guilt, give explanations, offer support, and ask for help.  We began talking again.  He learned a lot about what I had gone through with my Hodgkin’s Lymphoma.  And when his health took a turn, with a major heart attack, it soon became my turn to help him with his needs.  And then as late effects from my treatments became obvious, he was there for me, something that he had not done in the past.  We were moving forward finally.

My dad had many grandchildren, but for the purpose of this story, my daughters gave him the opportunity to do what he did not do for me in my childhood.  And he loved all of his grandchildren.

Approximately seven years ago, my father informed me that his doctor had seen spots on his lungs, which would lead to an early diagnosis of emphasema.  At this point, the doctor considered it reversible, even for someone who had been smoking for over five decades.    Though he would try to quit, with various means, he was unable.  But during a follow up exam, it was now felt that my dad had developed lung cancer.  I have written more in detail about that in past posts, so I will spare the details now.

My father had asked me, to accompany him to appointments.  This made sense to him because of my history.  He knew that I would understand things being said, and be able to explain to him if he did not understand.  I would also be able to ask questions that my father might not think of.  I was also very likely to remember most if not all of my father’s medical history.  I was touched by what my father had asked of me.  Estranged for as long as we were, my stepbrother would have been the more logical choice, and I would have understood that.  But this is what my father had wanted.

But as time went on, it soon became apparent that my father was going to need more than a companion or caregiver.

As the cancer became more serious, my father realized that he needed to have decisions made in advance, in the event that he would not be able to make them himself.  At this point, again with no objections from me, my father appointed my stepbrother as his legal rep, but asked me to take on the role of his health care proxy.  In other words, should something happen that he would no longer be able to make his own rational decisions, I would be trusted to carry out my father’s wishes.  If there is one thing that my father knew about me, getting back to that character quirk that I have, disconnecting emotionally, my father knew he could count on me to follow his wishes, no matter what.

At this point, conversations between my dad and I had become dominated by his issues.  I no longer spoke of things that I was dealing with myself.  I had a lot on my plate.  I was campaigning for school board (my second campaign), my own health had been giving me difficulties from my late side effect issues, and my marriage was failing.  But I was not going to allow my dad to feel I was being overwhelmed with his issues.  I knew that I could do what my dad wanted and needed.

But in February of 2014, my father was informed that his cancer was now terminal.  My role as his health proxy was going to change from that of advocate and support, to adding comfort as his cancer would rapidly progress.

Now anyone who has ever been a health care proxy, knows this is not an easy thing to do.  Emotions must be shut down, logic must take over.  You must also balance your needs with the task of caring for someone else.

The first pressing issue faced by my stepbrother and I, was trying to keep together what had not been apart in over four decades, our parents.  My stepmother needing her own level of a different care, my father his own care, did not qualify to be kept together in the same home due to a technicality in his supplemental health insurance.  Needless to say, together, we did get them together, and a lot of funny stories.  More importantly, they were together when he passed.

But something happened during the hospice process that appears to have changed everything for the rest of us involved in this process.  And the honest reason is I do not know why.  I had followed my father’s wishes.  And even up to my father’s memorial service, everything seemed as if we would just move forward.  But as I mentioned in the beginning of this post, this “needle” seems to be stuck.

I do know that there were decisions that were made by me, that other family members disagreed with.  And again, my father trusted me to make those decisions.  One of those decisions was protecting his privacy from anyone who might try to interfere with his care.  And I totally get it when someone is dying, you want to do all you can, everything, to cure them.  But, there are limits to that, and this is where my logic took over, and actually got quite firm.

As anyone facing a death sentence from cancer, of course, you are willing to try anything, and that includes clinical trials.  These are treatments that might have hope.  And at the time that my father was dying, there was such a drug that had showed promise as a possible treatment for advance stage lung cancer.  But what I could not convince anyone of, the difficulty of qualifying for clinical trials.  Forget the fact there is no guarantee of cure, but time was quickly running out.  But even that would not have disqualified him.  But the fact that my father had experienced so many health issues over the recent years, and during his cancer diagnosis, HE WOULD NEVER HAVE QUALIFIED FOR THE CLINICAL TRIAL.  Sure, we could have fought for him, but I knew we were never going to see any victory, and all that would happen would be to have lost the last moments with my father.

But as his health deteriorated further and rapidly, so did his mental status.  And this would cause a lot of issues among all of us, because there were times that my father was so convincingly lucid, though in reality he was not, arguments over his care and handling often resulted in conflict.  It soon became a battle with just giving a dying man whatever he wanted regardless if it was good for him or not, or if it was at the expense of the care he was given.  He was dying, just let him enjoy his last days.  Which honestly, as his son, I would not have had any problem with.  But that was not what my father asked of me.

I was a monster for not allowing my father to eat sugar candy snacks and drink caffeinated drinks because that would keep him awake at night, often giving the minimal night staff problems with behavioral issues.  Rather than risk my father being ignored or worse, restrained, I restricted the things that would keep him awake at night.  No matter the pleas, “he’s dying just let him have what he wants,” that did not result in my giving him back his cigarettes to enjoy.  He had been restricted to the nursing home eventually, but that did not stop some from wanting to take him offsite for some last outdoor enjoyment.  Again, this was not possible procedurally, just another source of growing conflict.  And then of course, there was the huge disagreement of care of a hospice patient, who is dying.  Treatments and medicines are no longer given.  As Hospice is not about extending life, which would only end up being more painful, it is about making the end of days as comfortable as possible.  And that is what my father expected me to do.

As I mentioned, I had my share of things I was dealing with as well.  But many of my nights were spent with my father at the hospital and nursing home, days at work, and squeezing in my medical appointments.  And with a pending court order coming in my divorce, I had other pressing decisions to make as well, all as my father lay dying.

Again, I never asked for understanding.  I had been trusted by my father to honor his wishes, and I did just that.

My stepbrother has my father’s ashes, again, which I had no issue with.  The plans as far as I knew, were that eventually my stepmother’s ashes would eventually be combined with my father.  Again, not something I objected to.

But something happened after that memorial service that I just do not have any answers to, and why that “needle” just continues to skip.  And for that reason, I cannot grieve for my father, now approaching five years later.   Like I said, I get that there are many that did not agree with the decisions that were made, and I can accept that.  But there is more going on than anyone is letting on.  But, as communications have basically been cut off from the majority, I will never know what changed after my father’s memorial service that I have been cut off from nearly everyone, and for no reason.

Sad really, even my children understand something is not right.  My younger daughter has even offered to request some of my father’s ashes for me to have as I have been cut off from contact, for no reason, or at least none given.  While I appreciate her gesture, her being a child is not going to help it get done, though both my daughters are really confused as to why the animosity.  And I am just as confused myself.  I have not had any communication with anyone in the nearly five years since.  I have made attempts, but no response.  Evidently even acknowledging and offering sympathies for other losses are not acceptable as a temporary halt to whatever is at issue.

And so, another year passes.  Dad, I do miss you so.  And I know this is not the way that you intended things to turn out.  That is not who you were.  I know that.  Because of our relationship, the second half of our life was able to become what it was.

Below is the link to a story that I wrote, and was performed on stage, sponsored by Memorial Sloan Kettering Cancer Center, the tribute I wrote for my father.


And to those family members, I really do not know what I did that changed things after my father died.  And since none of you will explain to me, I guess it is what is.  It does not change my relationship with my father, or my relationship with my daughters and their grandfather.  But the door is still open.

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