I haven’t been completely honest with you. For various reasons, many of which are laudable. Here’s the thing. As I’ve trudged my way through this grief, as I continue to do so, I’ve kept in mind that a key component to keeping this grief from becoming toxic is honesty. I’m not anything special with my grief-I just choose to write about it and you choose to read about it. You respond or not, you like it or not, and from the numbers of emails I receive, you learn from it. Some of you get angry about my honesty (hi, Amy Rogers!) and you think, merely because I’m honest about my lack of enthusiasm for life as a result of my grief, that I ought to just go kill myself. (hi, Amy Rogers!)
Writing honestly can be a chancy thing. Writing about emotions can be a tight-rope balancing act. I don’t aim to hurt anyone, or “diss” anyone, but I do want to be honest about what can happen in the midst of grief. *maybe I need to have a continual stream of disclaimers to accompany my words*
Anyhoo. I’m getting off topic.
My grief went toxic this past year. Not because I’m feeling it so strongly. Nor is it because I’m doing a Retrospective of last year, re-living the moments Handsome Husband was in hospice. It became toxic because I allowed a bunch of elephants to tap dance in the room and didn’t address them. I held it inside instead of writing it out, which is how I process life and emotions. Words eat me up if I don’t write them down.
Here’s the thing. I wrote a blog (which I re-read last night) a few months after my husband died about his decision to make his daughter his medical advocate and the conversation we’d have had if I questioned him about it. I read several of my blogs last night and was reminded of the conversation he’d had with me just the day before she told me about his decision, in which he’d extracted a promise from me to remind him as needed about staying ahead of the pain, speaking to me with full confidence, knowing I had his back. Now, yes, I second guess the decision that I made at the time in choosing not to question him about the medical advocacy. Its done and gone now, I know that. But I wonder how it would have played out, had I.
My entire focus, the very reason I lived, while he was in hospice, was to create an atmosphere of love for him. Surround him and immerse him with all the love he’d given to me, to all of us. I breathed that intention day and night and in between.
What toxified in me in this past year, what sent me to the floor early on with a major panic attack, sweat pouring off of me and breath suspended, was being told that all of that was for naught because so much of what I’d done for and with him had agitated him. One of the hospice nurses, whom Handsome Husband loved, whom I’d trusted, apparently had many discussions with his daughter wherein he accused me of causing no end of agitation to my husband. Mind you, he didn’t talk to me, who could have done something about it. He didn’t, apparently, bring it up at staff meetings so that I could be supported and counseled by the staff. He spoke to my step-daughter and I found this out from her only months later. At which point I sent for my husband’s records to verify these things and there is absolutely nothing of his accusations in the file. Nothing. To the contrary, my and Handsome Husband’s positive and loving interactions were remarked upon and noted in the records.
The following are things I apparently did that were agitating my husband. I either wasn’t doing something that needed to be done, or what I was actively doing was upsetting him:
I was hysterical and should have been removed from my husband’s room. (I’m uncertain if this is how I was continually, or intermittently). The only time I can think of that I was visibly upset and crying was when the nurse was instructing me how to change the tubing from the stationary oxygen tank to the mobile one. Tubes and dials were involved, all essential to my husband’s breathing abilities. The reality of the reason for the oxygen tank hit me and it was too much for me and I freaked. Yes, Handsome Husband was upset. Not with me but for me. I sat on his bed and he and I and the nurse talked it out. The next day I learned how to do it and that was the end of it. (oh, yes, I also cried quietly when he and I said goodbye and a few other times. I’ll own up to that).
I didn’t want to spend money on new clothes for him. (The edema, and resulting swelling, was so severe that almost daily, he needed the next size up of clothes. I shopped for him, so did our daughter, and I know his friend Mike got a few things). Seriously. I loved this man beyond distraction and I refused to buy spend money on him?
He never had clean clothes because nobody took care of his laundry (our daughter Rachael collected his laundry daily and did it and returned it to hospice. He always had clean clothes).
The music I played for him agitated him. (I played music for him that we’d danced to over the years, and music that we drove to in our travel years). I’d also play it in the background when he and I would reminisce.
He was agitated when I said “our kids” and “Chuck’s daughter” in front of him. Something he and I had both done for all of our 24 years. (Only because “our” 3 were raised in our home and he was the only dad they had, and his daughter was raised by her mom).
I hadn’t advocated for him while he was in the hospital and they gave him too much medication (in an effort to control the pain). So he didn’t trust me. Which is why he wanted her to be his medical advocate.
I’m not devastated by the things that were said, now that I have the clarity of time. What does devastate me is that Handsome Husband believed these things to be true (if the nurse was correct, and I question that now) but nobody reassured him and nobody spoke to me so that I could reassure him. That does disturb me greatly because it was un-necessary and I hate that my husband was emotionally in pain and nobody eased his mind. It was uncaring to the extreme to allow such mental and emotional torture in a man who was dying.
None of it matters any longer but it has been a huge part of my struggle in the last year. My attempts to contact the nurse in question resulted in a dead-end. It was a volatile time and there are no answers for any of my questions. And I know that I need to let it go and I am.
Words, both spoken and written, can get lost in translation. Second-guessing is an exercise in futility. But I do indeed wonder, by choosing to not clarify that very first change of medical advocacy bombshell with my husband while in hospice- did that create such a space for the misunderstanding and unknowing-ness of this nurse that it opened the door for the later accusations that so colored my grief? Why didn’t the nurse return my phone call? I only found these things out from my step-daughter, after his death. What was going on that he was so unprofessional in speaking freely and negatively about me to my step-daughter but he never said a word to me and didn’t address such concerns to the staff at weekly team meetings? I know I wasn’t thinking clearly or it would have registered, in a very non-emotional way, that, if my husband said those things, he was either high on drugs or in extreme pain. There was no middle ground for him when he was in hospice. So, I agonize that, because I stepped back and accepted these things as truth, did he feel abandoned by me and wonder why? I knew at the time that it was completely contrary to who he was and what we’d agreed upon between us, but I didn’t want to cause him further agitation by addressing it. He was dying, for god’s sake.
These thoughts have been a sludge pit of the worst kind.