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About Kieron

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  • Your relationship to the individual who died
    Partner, best friend
  • Date of Death
  • Name/Location of Hospice if they were involved:

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  1. 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! 😒
  2. 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.
  3. Kieron

    Don't Know What to Do

    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.
  4. Isn't it interesting how different we all are? I wish I had that kind of know-how.
  5. That's so sweet, both of you. 😊💖
  6. Today at work, it was a day from hell (aside from the temperature out there!). I miss being able to come home to someone that can listen and help me laugh off the stupid stuff I saw and heard, and help me to not take it seriously. My boss doesn't want to hear about it, my friends wouldn't "get it" and telling it to the cat isn't the same. Mark would just say, "Oh well, I love you anyway" and that would be enough to brush away any lingering "stuff" from the day I had just had.
  7. I am, too. Sometimes what someone relates about their experience, or how they feel now... well there just isn't anything to to be said that won't come across either like patronizing or else a smug platitude.
  8. Expect that to happen often. You'll circle back so often to familiar territory that you'll begin to think "I could swear I've been through this place a dozen times already!" Very common experience! You'll be all over the place for awhile in your emotions and it's also something that you can expect. Think of the various emotional states like giant waves. You simply have to let them wash over you, and they will pass and the water will recede, followed by more waves. It may seem like each wave will destroy you, but if you can let them soak you and get back up again, their strength will gradually lessen. Some people run from the waves, and they pay a heavy price later on. Sorry to hear that guilt is complicating your experience. I think any of us who were caregivers, like I was also, have these guilt feelings that persist. A lot of "if only" kinds of feelings, the ol' "woulda coulda shoulda" thing that can drive you 'round the bend. That, too, is normal and very much expected, but I am sure you did what you could with what you had at the time, and with little to no support from family. Don't be surprised if you feel resentment or anger at them, at some point. I'm sure others will chip in wisdom of their own, in time.
  9. Darrell, when Mark was sick in ICU and then in recovery, I had the oddest feeling I was starving to death even though I made sure I ate healthy, and saw him daily, in the evenings after work and all day weekends. After awhile, it dawned on me that I was missing the love he put into his fantastic cooking. It's a real thing, that magic touch. 💖
  10. In my opinion, it's another example of giving you mixed messages. Picture someone standing in front of you, one hand up, palm out, as though saying "Stop." The other hand, however, is making a beckoning movement, as though saying "Come here." Confusing, right? Life is confusing enough. I wouldn't' want to be involved with someone who makes life even more confusing. I once dated a man who gave me mixed messages and once I realized what he was doing, I was done.
  11. Can't think of a thing to add to the wise words already posted, but if I can point out one thing you said, that I noticed right away: That's it right there. Anytime you get mixed signals from someone, it's time to back off and establish a healthy boundary, because as Kayc and Rae have said. IT IS NOT YOU, IT IS HIM.
  12. Kieron

    Unable to cope

    Exactly. The poet Maya Angelou once wrote, "When someone shows you who they are, believe them the first time." He's shown his true colors with his actions and words. You can never unsee those colors, but now they are a signal, warning you to stay clear.
  13. No, it never ends. I'm thinking of the time we stayed up til midnight on NYE and opened the bottle of non-alcoholic sparkling cider we'd bought to share (he was in recovery 20+ years so I always wanted to respect that milestone of his). Unfortunately the damn bottle had spoiled, somehow, and tasted like vinegar. The one bottle we picked turned out to be the spoiled one. Figures! How we laughed, at the time... Now I got nothing to laugh about, but I am no longer bound to alcohol-free beverages, if I so choose.
  14. You can best show her your strength by respecting her wishes at this time, and tending to your own self, as Kay has described. As writer and life coach Iyanla Vanzant advises, "Do the work." Look on this experience as an opportunity to do the work on yourself. I think you'll be glad, one day, that you chose to do the work! It's not easy but then, nothing of value comes easy.
  15. I would like to encourage you to re-read Kay's comment here: Self-care is important. Without it, we are unable to be our best selves for those we love.