Kieron

Sure does. At times, it doubles you over, then brings you to your knees, and finally knocks you flat. And then you get up and go on, and it happens again a little while later.

Oh yes, we did that about 14 years ago and changed how we ate and where we shopped. He ate beef liver once a month for awhile, and was able to drop the iron supplement and keep his hemoglobin where it should be. They told him, "We know you're not following our prescribed diet," but they had to admit his blood labs and so forth were astonishing, and he was not diabetic at all. True, he should have stayed away from tomato sauce and dairy, more than anything else, but by about 5 years ago, food was the only pleasure he had left. That's why the stints in the hospital and rehab centers were so devastating... the food was horrible, pretty much void of life or nutrients. 😖 I brought him food from home as much as I could-- for all the good it did in the end. Thanks, George, you as well.

😢 I could have written much the same, Mitch. Mark was only 60, and the pluckiest person you ever met, and tried to stay positive about having to have dialysis 3x per week. He made the nurses and the kidney patients at the unit smile, even laugh, with his jokes and comments, trying to lighten the somber mood in that depressing place full of people lying motionless in their chairs, resigned to a fate no one would wish on their worst enemy. Likewise. Oh likewise. I did a round of that one today, myself. Our rehab center experience was nothing but woulda coulda shoulda. I can't even write about it yet.

I can only echo the sentiments offered already, but as a newcomer myself, you've definitely found a good place here.

Yes indeed. I have been backtracking past posts, and I see glimpses of myself in so many ways. Anger, guilt, remorse, regret, pacing, no appetite, no sleep, apathy. All very familiar feelings and actions.

Thanks. Bookmarked immediately. And wow... I didn't realize that "I don't know" or "it's complicated" were response options. That actually made me laugh. I'm gonna try one or the other!

Oh yes, this question... I've taken to replying, "I'm okay" or just "Okay. And you?" Like you say, no one really wants to know the truth of how I am really feeling. It's just rote and reflex before moving on to other topics. A few weeks ago, someone who should know better (lost his spouse 5 years ago) asked me how I was, and of course I said, "Okay." His response was, "Just 'okay'? That's not very convincing." If we had been face to face (vs on the phone), I would have given him a disgusted look and walked away. And in a week I have to attend a wedding and be around my extended family, none of who have seen me since before Mark passed away. Every last one will ask me how I am doing. I have a big, big extended family. I should just find or make a button or lapel clip that says "I'm okay" and point to it when the inevitable happens. (Trying to have a sense of humor helps).

I'm glad to have found this place. Would have been nice to find it earlier, especially over the long dark winter of 2017/2018, but better late than never. 😊

Rahn, I get that one all too well, and I asked the same question daily. Still do at times. Mark didn't hurt a soul and hardly complained about his lot in life despite the dialysis 3x per week and chronic knee, back and neck pain (7 or 8 on the pain scale, 10 being worst)--every single day. He was a far better person than I am. I see and hear and read about all kinds of awful people out there doing awful things to themselves and other people, kids, animals, and so on, and I think "They're still on this planet and he's not?! WHY?" 🤬 It was during this past year that I realized this: the two sayings Only the good die young and No rest for the wicked are two ways of expressing a profound truth about life on Earth. For me, little by little, but it's been 17 months since. Sounds like 45 days for you. You're surely in shock and disbelief, still. It hurts, it sucks, it's painful and all you want is for it to stop. I hear you.

Indeed. It's been the only way, for me. 💖

Thanks, Tom. No warning, no time to say anything to her? Yikes, I am sorry. I just read some other thread where you described finding her. Hard as it was to hear the words "No hope, no quality of life, can't go home," etc., following his final hospitalization, I at least got to spend the last 2 days and hours with him right up to the last breath, although he was sedated and intubated and could not respond by then. A curious kind of gift I hadn't really considered before... Sorry, Ana. Sounds like neither of our lives turned out the way we thought.

Thanks for the kind responses. Indeed it's " curves and switchbacks" as you say, Darrell, and I find myself doubling back into emotional territory I thought I had crossed over already. Nope! There's always more, it seems. And it's complicated by simple relief that's it's finally over, that I don't have to worry about him anymore. No more falls, accidents or hospitalizations, or getting a call that something is wrong and he's being sent to the hospital for observation, and the resulting worrying. I know he felt awful about it, apologizing profusely each time as though it was something he had done wrong or failed me in some way. Polycystic kidney disease is probably hereditary and possibly environmental in how it manifests. There may be a cluster of it in the area where he was born and raised. It's no one's fault. No matter how I tried to reassure him, he worried I would get "tired" of him and abandon him. Never. I would have cut off my right hand sooner than that. But yeah, it's still a relief that the suffering is done. Now it's my turn, I guess! 😫

Complete agreement. You are to be commended for being upright and putting one foot in front of the other moment by moment, while raising little ones and another on the way! I couldn't do it, I know that for a fact. My hat's off to ya. 🧢 <-- I guess that's supposed to be a baseball cap...

No apologies necessary. In my own intro post, I mentioned those here who have endured far worse than I did. You're one of those I was thinking of. My experience has been a walk in the park by contrast! 🙁 I remember wondering, afterward, if this is anything like a plant's experience of being torn out of the soil it was growing in, and tossed aside to wither and dry out. For sure my heart felt like it had been ripped out of my chest. Please make sure you stay hydrated. it's too easy to dry out from tears and hot weather.

Hi there. I'd like to introduce myself without going into a lot of detail just yet. That will come. The handsome man in my avatar photo, looking over his shoulder, is my Mark. He passed away in March 2017 after an epic 14 year standoff with kidney failure, but it was sepsis that got him in the end. For now, I'll just say I've got a lifetime membership in this club I never wanted to join--512 days so far, if my math is right--and there's no way to drop my enrollment or discontinue my membership. There are no discounts. If there are any reward programs or special deals only available to members, you'd sure never guess it. I do know that Time runs differently here, kind of like C.S. Lewis' Narnia, only there's no way to pass through the wardrobe and back to the world you knew before. Last September, on his birthday, the first one without him in the world, I felt like I could barely breathe. I'm not even sure how I got through the day. It's a blur. The year since that first birthday has been so "all over the map" I should probably refer to myself as an atlas. Open me to any page and I will describe geological features including footpaths in my carpet from my endless pacing during sleepless nights, and unnamed bodies of water made up of tears. As you can tell, I am writer. The one good thing from all this loss is that my poetry has come roaring back to life after years of slumber. There's a saying "You have to suffer to write" but this is ridiculous! I'll add more in time. Just know I have read silently along for a few weeks now, and nodded in recognition at thing said here, and wiped tears on behalf of those members here who have poured out their hearts and who endured far worse than I did, bad as it was for me. The attached graphic captures my feelings perfectly. I don't know the original source, or I would cite the author. Thanks for reading.