Kieron

Rae is right. Your self-awareness and insight will carry you a long way in this. I haven't been through such a life change as this one but I do recognize when someone seems to be able to "check-in" with themselves. Fantastic analogy, Rae. 👍

So sorry to hear this, Steve. Something similar happened to me, too, while I was still in a tailspin after losing Mark. Someone who was staying in the house during the aftermath took, among many other things, a very special type of stone that is said to be drops of the Aurora Borealis, or Northern Lights, fallen from the sky (Labradorite, if anyone is curious). Both of us loved this stone because I found it on our last vacation trip in July 2016, and I had it in both our hands while he was taking his last breaths. All I have left of it is a photo. The other things that were taken were just "stuff" in comparison, but I didn't notice these items missing until it was much too late to call the police-- that's how out of it I was. It was sickening and made me feel like I had taken a sucker punch to the solar plexus for a second time. After the discoveries, I locked every screen/storm door as well as interior door, and put a metal bar on a window that had a loose security thingamajig, so it couldn't be forced open from outside. 😖

Please, go ahead and write. All of us here "get it." The grief does soften over time, as Shirley says, but it's important to let it do its work on you.

Good one, Gwen. I listened to that one all last summer, which would have been about 1/3 of the way through Year One. I think I was struggling with blame, where to assign it, whether I should even assign it. I came to realize that Mark had played a role in the way things ended because he didn't tell me what he wanted or needed, and when rehab center staff asked him if he needed anything, their charting/care notes indicated he only said "No, I'm fine." I think he just wanted to go, and I don't blame him for not wanting to face a life of only continuous pain, dialysis 3x a week, and needing constant care. But I wish he would have said, "I just want to come home and die." I may never understand why he couldn't do that. Maybe it's a "guy thing." Maybe he didn't want to be a bother to me. 😥

I hope it's OK to post YouTube videos (although it doesn't appear as anything more than a link below). This song came to my attention, and these lyrics in particular moved me tremendously. It speaks to those rare and beautiful relationships you mention, Mitch. "Nobody Knows" written by Wesley Schultz, performed by The Lumineers. "Love is deep as the road is long, It moves my feet to carry on, Beats my heart when you are gone, Love is deep as the road is long." https://youtu.be/6q5Zn_ZkehM

That's me, as well. Many mornings, I feel as though I have little or nothing to look forward to until it's time to go to bed and start the cycle all over again.

The pain has to go somewhere. This is probably one of the best and safest places for it.

The writer in me appreciates the way these ideas are framed. I can feel the beginning of a poem stirring. I won't think about it too much for fear of scaring it off. I just might borrow from both of your comments 😏

Ouch, what a wince-inducing thought. 😖 Anyone would be devastated by such a cruel cosmic joke. I'm so sorry that so much "pile-on" occurred on top of Rene'e's passing Karen, that's pretty much what happened with Mark. I so relate. So unfair, so many errors and so much disregard from the "professionals" who were charged with care and support.

I decided to go back to my very first post and add to it rather than a create a whole new post, and share the writerly thoughts going through my mind on this date. A year ago today, I felt as though a massive cosmic door was swinging shut, moving slow the way heavy things often do but with such impact that they send shudders throughout their immediate environment. It seemed to me, as it has for others, that once the door hit home, I could no longer truthfully say, "Well, this time last year he was still alive, he was doing this, he was doing that," and so forth. It was as if there was some kind of echo of him still present in the world that would fade to silence. After that anniversary door closed, it began to seem that what had turned on hinges was not a door but a heavy page, thick like the vellum once used in manuscripts before paper, as we know it, became more common. Turning these heavy pages bound in this book that is now my life requires enormous strength, and I can only complete one page-turn every so often. Today is one of those occasions, and the page has a tab sticking out that reads Year Two. Whatever words are written on these pages seem to be in a script made from invisible ink, because I certainly can't seem to decipher the text. Maybe by the time I reach the Year Three tab, I'll have devised a way to decode this ink and see what hidden messages, if any, are contained there. Thank you for reading.

Well that puts a whole new spin on things. Sorry I was so blunt but that detail wasn't apparent to me. I hope she is able to extricate herself from his influence.

Sorry to be blunt, but what you think doesn't apply, here. You can best push her away by telling her something like this. On the flip side, you can best support her by remembering she's a grown-up, it's her decision, and it's her life, and if she wants your input, she will ask for it. If I were in your shoes, I'd keep my thoughts to myself while at the same time, making it clear you are there for her no matter what she chooses. And just so it's clear, I was in her shoes for a brief few days, about 6 months after Mark passed away. Thankfully I came to my senses and realized it would be a mistake for me to get involved with someone new.

As someone who has worked in adult mental health services in one way or another for 20 years (although I do not and will not "diagnose" people), I can confirm that everything has been turned into a pathology or a disorder of some kind. Nearly every single variation of the human experience is now considered a disorder, or will be medicalized very soon. The reason? The almighty dollar, because insurance calls the shots and pathologized people are profitable. it's disheartening and disgusting.

That's a good description. One of the replies to the post reads, in part, "...whenever I come across a newly widowed person and they ask me if it gets better, I always say no, softer, but there will be times when it will spike and spike HARD. " This is exactly how it can be.

Perfect word for how I'm feeling tonight, unable to sleep, flopping from side to side in bed like that damned fish, gasping for air, hoping some kind-hearted human will come along and toss me back into water. It kind of hit me all over again, today, not remotely with the force it did almost 2 years ago at 2am the night he died... but still like a stone sitting in my gut. How can it be that he's gone? I manage to go through the endless days, one week after the next, intellectually knowing he's gone, but always feeling as if my heart had fallen far behind, never quite able to catch up, until I stop long enough to let it, and then the pain re-starts. This is one of those times. I can see why people turn to other things just to cope, but I know the price they pay for keeping that heart at a distance, and I don't want to pay that price.

These last two posts have led me to realize that not only is it useless to wish things had worked out differently, but that it's equally possible that a potential hospice experience would have been unpleasant or unhelpful. So little makes sense anymore.

That IS a good word. But then I'm a writer and I love words. I'll definitely remember that one.

Likewise for me, Tom, and George. It's 2 years coming to an end and the start of Year 3. Right now, it's bearable only because we are getting hammered with snow this season, and I am simply, profoundly grateful that I don't have to worry about him now. He hated this time of year because it was when, at age 19, he received the news that his dad had died, and he had to become "the man of the house" as they said in those days. Funny how that is now my burden as well.

I second Karen's suggestion.

❄️*waves from among the snowdrifts* 🌨️

I'm not quite sure how to express this but I'll try. To read that some of you lovely folks, who have been dealing with your loss for longer than I have, are still struggling after so much time, well, in a weird way, it's both discouraging and encouraging at the same time. Discouraging in that everyone around me expects/wants me to be "all better" by now, and discouraging to realize from your stories and comments that it really IS going to be a long-term slog through this grief process, no getting around that. At the same time, though, it's weirdly (very weirdly!) encouraging in that this group has shown me it is OK to still be struggling, have bad days, momentary meltdowns, etc. because all around me in my daily life, I'm being given a subtle message that those things really are "not OK." It's really hard work balancing these two extremes. No wonder I'm so damn tired.

Thanks for the kind responses. Wow, kay, that's horrifying. How is it these people think they know better, in cases like yours, mine, and others? It was like the rehab center nurse who barely knew Mark telling me to 'calm down" when I pointed out that his slow responses indicated hypoxia or low oxygen levels. I saw it happen in his first ICU experience so I recognized it. Who knew him better, someone who was with him for 18 years, or a nurse who knew him for half an hour? My view didn't count. To answer yours and Gwen's questions, yes I did find a support group that is much more to my liking than the first one I found last summer. That first one was often 15+ people and I got "lost" in it, not to mention being a little different from the others. 😏 In the new one, it's 5 or 6 people and everyone has a great deal in common, so that helps a lot. Ironically this is what made me realize how cheated we were with hospice. Gosh, the things I didn't know that I didn't know! 😒

For me, it will be 2 years on March 22. My emotional states are at often at war with one another. In the middle of all this heavy snow and extreme cold weather, I'm very glad that Mark no longer has to go out in it, and doesn't have to get up at 4:30 AM 3x per week for kidney dialysis and be driven many miles to his unit for treatment and back home later in the day, that I don't have to worry about him being stranded somewhere or in an accident on the highway, or slipping and falling on all this stupid ice, nor do I need worry about getting a call that he's been hospitalized, etc. It's such a relief, but at the same time I am tired of this. I am tired of him being gone. What a strange sensation. It even sounds ridiculous when I say it out loud. But it's true. And like you, Cookie, i have the same emotions you described, as I hear from others how their loved one was placed into hospice prior to death. We were never given that option. Not one time did anyone propose that he enter hospice, not until the ICU doctor declared his quality of life to be zero. THEN, hospice began. I didn't even get to bring him home to die. He would never have survived the trip. Looking back, I can see the trend of his decline, and the social worker at that 'rehab' center (what a joke) utterly failed to recommend hospice. He ended up deteriorating in early March and all she really had to say was "Well,. he's not doing his rehab exercises in the physical therapy center of the residence, but we can't make him do it. Blah blah blah." And because I didn't know better, I didn't know what to do. I remember him looking miserable when I sat in on one of his sessions in physical therapy. He was just so over it, didn't care anymore, and I didn't know what to do. When he ended up in ICU again after being basically allowed to deteriorate, and my requests for more intensive attention that last day before he was sent to ICU were met with responses like "I think you should just calm down" from the charge nurse... well, that's a whole other story that maybe I will tell some other time. Essentially, he didn't enter hospice until 2 hours before we took him off life support. It was a catastrophic FAILURE of the system across the board. And now I'm running into people who say "Oh, my loved one entered hospice and it's so nice, so helpful, blah blah blah" and all I can do is smile and nod and wonder why in the bloody hell we never got that option. Was it because we were 2 men? Had I been his wife would my concerns been taken seriously? Did they assume we had it all under control because we didn't really make a fuss? Well, let me tell you all, I made a fuss, afterward. i got that rehab facility nurse's license very nearly revoked or suspended. At the very least he's on such thin ice with the State Board of Nursing that any additional missteps or complaints filed against him, the board will take that new complaint AND mine, and put them together and he will then be in very hot water. The rehab facility was scared I'd sue them into the ground, but by the time it was all over, I was too exhausted, and I knew it would never bring him back. And I couldn't prove any malfeasance or malpractice. Even the notes that I got from the rehab facility , which I had to pay for, show he just declined their interventions. He was just over it all, just ready to check out, but couldn't seem to articulate this-- not even to me. It makes me sick to think of it, now. So yes, resentment, anger, jealousy are all frequent companions. Oh I get it. Every time I think I have reached a bit of peace of mind, it all goes out the window eventually. I replay the interaction with the charge nurse and wish I had called 911 myself. Stuff like that. I know it does no good, does me no good, but it's hard to move beyond it. And I don't like the resentment I carry toward those unprofessional providers because that will end up hurting me more than it will them, but gosh it's hard to let go of.

Not to mention the stress hormones you're flooded with when you think about how he's behaving. Stress has a damaging effect on us, especially long-term. I would imagine chronic stress, anger/rage and grief all affect the baby in some way. I'm sure you don't want that to happen, if you can help it. So please take the advice already offered by 2 people who have been through it.

Isn't it interesting how different we all are? I wish I had that kind of know-how.