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.

He’s out of pain.  He knew how much I loved him.   And I need to let it rest.




28 thoughts on “Sludge-Pit~

  1. One thing I learned from my Brent was to be true to yourself and truthful to others. You have done this by speaking out the truth to yourself and then telling others about. I feel there are questions that I may never have answers to, but in the end; we know what we had with them was special and true and good. We love them forever and will try to remember the happy times and be thankful we had them. Peace to all who have suffered. D

  2. Alison…I hurt for you….PLEASE read your last three sentences….absorb them…repeat them until they are imbedded into your being…
    Chuck’s pain is gone…he knows NOTHIN’ BUT YOUR SPECIAL LOVE
    When a loved one dies, those closest to them often have demons come to taunt us….to add to our devastating grief…to keep us in grief…don’t let them…
    I know Chuck wants you to concentrate on your LOVE…all LOVE that will help you heal…hugs 😔

  3. He definately knew how much you loved him & that you were there for him in all aspects. I can only imagine the emotional hell you have been going thru/subjected to. You did nothing wrong, every single decision and action you took was made/taken out of pure, 110% love and caring. Oh how I would love to have a few words with this so called nurse! Love you and am sending tons of hugs your way.

  4. Alison, I know how unsettling this is for you. Your husband loved you and I am sure the medical advocate was not you, not because Handsome Hubby didn’t trust you, he loved you with everything he had left. I am sure he didn’t want you to have to go through all the pain and anguish of not only watching him slipping away but to be overwhelmed with “family” dynamics…….of course he trusted you, he was dying, you were the most important person in his life and he loved you, never forget that. While Jerry was in Hospice and it went very quickly, five days, I think back at the awful things that were said, not said, who was jockeying for more attention than a dying man that I loved for thirty years. I look back at the source and that explains everything. Do not spend anymore time putting yourself through this Alison. Your in my thoughts as always. Hugs.

    • Sharon,
      Your words do much to mend my doubts and questions. Thank you for taking the time to respond and to reach out to me.

      If only they could come back and we could have these conversations…

      hugs right back to you~

  5. Alison, of everything you’ve ever written, THIS one broke my heart the most. I know that pain. Without going into great detail on here, I had a similar heart shattering experience with my dad’s passing; with my experience, the vileness (is that even a word?) didn’t come in the form of a nurse, but rather my dad’s wife and I allowed her to decimate my life, my mind, my spirit, for almost an entire year after his passing…until I had the most treasured experience that I will ever have in my life; the ability to speak to my dad as we were approaching the “1 year mark.” I would love to share that experience with you when I see you at Chuck’s Celebration Of Life on the 20th. I truly believe that it will be able to bring you a piece of healing…you SO deserve that piece of peace. Until then, keep doing what you do best…suit up, show up, shine, and soar.

  6. I am a recent follower and was reminded by a FB friend of your blog posts. So many times we hear of family members causing so much drama that I wonder how I will behave when it’s my turn to go thru this with a parent or sibling. Hopefully, thru your honesty and willingness to share your story with the public, I will learn a lesson or 2. Thank you.

  7. I am angry enough for the 2 of us so you can let yours go and concentrate on healing. I can see exactly what happened and don’t doubt for one minute your handsome husband was not agitated by you. Others were. For some reason some people are jealous of and cannot understand a love the 2 of you shared. So they judge and make accusations that they know nothing about our even fabricate.

    • Linda,
      In my saner moments, I know that he wasn’t agitated by me and if there was something I was doing, he would have spoken to me and not to someone he just met. And then there are the moments when I’m not sane and the questions creep in. But those moments are fewer now, thank god.

  8. My father passed away one year ago, April 11th. He was extremely agitated and down right mean to me and the hospice team. I have struggled with this during my mourning. As I read your story, I think maybe my dad’s cancer, medication and fear was what caused him to respond so angrily as he faced the end of his life. I had to push it out of my mind and remember how funny and smart he was. I choose to remember the good things he did and realize cancer just eats away at a person in every aspect of living to the bitter end. Thank you for sharing your story. It has helped me knowing I wasn’t the only one who may have had unfair and unpredicted things said as well. Watching someone die is a very exhausting experience so just feel comfort knowing you did the best you could. It is really all you can do and release yourself to live guilt free the rest of your life. ~ Charla Sisk Sent from my iPhone

    • Charla,
      My heart reaches out to you in this grief of yours, both for the sadness and the ugly part of it. Sharing stories is vital, I believe, to how we continue to live our lives and I’m humbled if my writing brings you to any sense of resolution. Yours, in return, does the same for me.

      May we be blessed, always, with the love that shines more brightly than anything else possibly could~

  9. Alison,
    Fear is a liar. In the case of divorced parents; a child taking on one parent’s issues over the other parent creates major conflicts in these kinds of situations. My spirit is telling me he knew he was loved and comforted.
    The pain and resentment can’t grow once it has been brought to light at least on your part.
    The nurse most likely did not call back due to the HPPA Policies of the hospice organization. However, I would call the hospice administration and address it with them.
    All of us have choices about what we take personally and situations for which we can say “its not about me”.

    • Shelley,
      And you’re right. As time passes and some of the shock wears off, I realize that the only part about me in that entire experience was my love for him and his for me. The rest isn’t even real~

  10. So much honesty in this post, Alison. You are fearless.
    Watching several loved ones go through hospice care, I know the dying often say things they don’t mean when they are under the influence of painkillers. Mostly, they are speaking out while dreaming.
    And, sometimes the “trained caretakers” have unresolved childhood issues and they can’t help but project this. So,t’s not unusual that if you struck a sour note with this nurse, he might have filled Handsome Husband’s mind with his own opinions about you.
    It might help the hospice administrators to know about this nurse’s unprofessional conduct.

    • I spoke with them on Monday, garden365, and spoke very honestly, I might add, about this nurse. What makes it hard is that I trusted this guy and so did my husband.

      People are human no matter where they are~

  11. Alison, I’m sure the medicine made him have mood swings along with the pain. Maybe he thought he was helping you by asking his daughter since you has a hard time learning what needed to be done before, and he saw how stressed out it made you. Please remember the love you guys had and try to let this go.


  12. As a soon to be nursing student, this makes me so angry.

    1. Isn’t “hysteria” normal in hospice? Everyone is grieving. Not everyone can be strong all the time, nor should they have to be! Let’s not act like saying goodbye is easy here. If every person that freaked out was forced to leave, it’d only make things worse for the patient and caregiver.
    2. Maybe HH’s agitation wasn’t because of your actions, but because he was also grieving. Come on nurse. See #1.
    3. Re: the painkillers – reading back on his past relationship with his daughter, I don’t think trust had a thing to do with it. You two had a (internet-seemingly) simple relationship while theirs was more complicated. Trust had nothing to do with it.

    If this nurse was truly concerned, he should have discussed with his staff, like you said. His speculations are simply that. Focus on your love, and more importantly, focus on the facts (this includes your love). You know your husband better than anyone.

    • Isn’t it interesting how emotions are viewed by others? Simple tears called hysteria speak more of his issues than mine and anything else he said shows more clearly his lack of knowing either Chuck or me.

      And yes, I did know my husband more than anyone and he wouldn’t have hesitated to say to me anything that needed to be said. In my saner moments, I know that~

  13. I could not have written how I feel any better than Elaine Heath responded! God bless you! Your husband KNEW you and KNEW how you loved him! Feel better, dear Friend! He KNOWS even NOW!

  14. Hi Alison! I’m not sure if you ever check these messages? I just wanted to tell you that it was really nice to meet you last night and thank you for sharing the Eclipse with me! I was thinking about what you said last night when we were all talking about parallel universes and how you said that you often wonder if Chuck is maybe in one. I was thinking long about it after I left Alexander’s last night and even still today. I know you don’t really know me and that’s ok, I have read a lot of your blog and feel very close to you from just reading that. I am confident that Chuck is in a very happy place with all of his other gone loved ones and he is patiently waiting for you to finish all your work on this earth so you two can live in love together again.
    It was really nice to meet you last night, I’m so glad I got to! You are an amazing and inspiring woman and I am so thankful I got the opportunity to meet you and share the Eclipse with you and Alexander.

    • Kellie,
      I’m always so touched to find that people actually read my blog and I’m even more amazed when I happen to casually meet them! The older I get, the more I realize the smallness, in a good way, of the world.

      Here I was just sitting outside to watch the Eclipse and I meet you-what are the odds?

      I hope to god that I do see Chuck again someday. I wish I had that faith and the certainty that comes from having such faith. As it is, there is a desperate hope that it might be so. Equal to that hope is the desperation of wondering “does he know I’m here? Does he have a consciousness about me in any way now? Does he know how devastated I am without him?

      I wonder that 24 hours a day.

      It means the world to me to hear from you. Stay in touch and plan on joining us for our official send-off in June~

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