Sunday, January 29, 2012

What Time Will You Be Home?

I remember, shortly after my husband was diagnosed with Pulmonary Fibrosis he said to me,
"I have an idea.  Let's just go along with our lives as we always have and pretend that this (diagnosis) never happened." 
"That's fine in theory."  I said.  
"I wouldn't mind trying that, although how long do you think that will work?" 

We then had a long discussion about the pros and cons of denial.  As though denial is something we could "decide" to do.  Which is kind of ironic considering the discussion alone meant we were accepting what has occurred.  Throughout his illness, we both experienced different levels of denial.  Within the months that followed, he would toss and turn in his sleep and the next day, I would ask him if he remembered what his dreams were about. 

"I was dreaming about being on the truck."  Or, "I was at work."  Was his usual response. 

Months later, when he was unable to walk or leave his bed -it was my turn.  At night, I always dreamt about he and I holding hands and walking.  The dreams were so strong that when awaking, I would have to stifle my sobs, so that he would not hear them.

Even up to the few days prior to his passing I lived in a world of denial, while he, on the other hand, seemed to have come to a strange level of acceptance. 

He would say to me, "When I am gone, please take care of yourself.  Do not just settle for someone new.  You deserve the best." 

Meanwhile, I would say to him, "You can't die just yet, we haven't taken care of such and such...." 
I did not do the proper thing that most caregivers should do, giving him permission to go
I never did grant that to him.  It was a very selfish thing on my part and I knew it, but I just couldn't tell him it was okay to leave me.

The whole time I took care of his everyday needs and with my own two-eyes saw his strength leaving him.  We even discussed his wishes for after he was gone.  In advance, I went through the proper channels of arranging all of these things, just as though I was scratching off a list in my day planner.  Yet, I was in denial that there would ever be a time when he would physically leave me. 

My hubby died in my arms and I literally saw the light leave his eyes. 
But, I was surprised.  It took me off-guard.  Now, I wander around the house looking for him. 
I rush up the stairs to tell him about my day. 
I turn corners and expect to see him. 
I call his cell phone to ask, "What time will you be home?"


  1. I just wanted to add that my husband's disease progressed very rapidly, although that is not always the case for everyone with this diagnosis. Furthermore, the reason he and I decided not to choose denial of his diagnosis was that we knew it is best to learn about any treatment options available. xoxo

  2. Oh how this post of yours touched my heart and my Billie's heart. I read it first and was just about in tears. When I read it to Billie the dam burst! It burst for you, me, and my Billie! But it was such a cleansing cry. I thank you for sharing this! I do not know you but I feel like I do! You and your hubby have touched my life so deeply by reading your blog! It has now touched my Billies life as well! We had a talk after reading this tonight. We both thank you deeply. May God comfort you and bless you my friend! Love Always, Donna

  3. Dear Donna,

    That is just about the sweetest thing I heard all week. I know this is difficult. For both you and Billie. But, the important thing is to know that you are not alone in this experience. You and Billie know as well as I do that the best thing we can do is share our journey. To feel satisfied that there really is a purpose -and that our lives are enriched by lending to the cause of one day finding a cure to Pulmonary Fibrosis. -With Much Love- xoxo

  4. When the Canadian medical team turned the respirator off on our son, they asked us to leave the room. I regret that, and have promised to never leave another loved one at the moment of parting. I pray I have the courage you did.