Kieron

That's so sweet, both of you.  😊💖

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.

9 hours ago, Gwenivere said:

 I’m glad we have the reaction button to let people know they were heard.  

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.

7 hours ago, Daisy10 said:

I was taking it day by day and thought I was getting better but yesterday all of the negative emotions came back.

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.

On 1/21/2019 at 11:03 AM, olemisfit said:

The best ingredient was her love that she put into everything she touched.

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.  💖

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.

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:

10 hours ago, Quixx said:

but I’m getting mixed signals.

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.

13 hours ago, Rae1991 said:

god forbid DO NOT TAKE HIM BACK

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.

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.

17 hours ago, annisha68 said:

I have to show her i can be strong for her.

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.

I would like to encourage you to re-read Kay's comment here:

12 hours ago, kayc said:

She is already looking out for her own best interests...who is looking out for yours? 

Self-care is important.  Without it, we are unable to be our best selves for those we love.

@Jame, I can only add to what was said by mentioning what you already know: others are reading and liking/upvoting  but just don't have the energy to form words.  So I'll just say welcome to the club no one wanted to join.

On 12/13/2018 at 3:18 PM, olemisfit said:

I wonder sometimes if being on the ventilator non-stop weakened her body to the point to where she was eventually doomed to never be able to live without it.

Darrel, I think this is what happened with Mark.  He was intubated when the sepsis took over his body unexpectedly, and was on it for probably 2 weeks, maybe three.  It's all a blur.  He recovered enough to come off it for some days, but his oxygen saturation was too low.  He was not breathing sufficiently on his own, so they had to do it a second time.  He was noticeably slower, sluggish and confused so they had do re-insert the breathing tube.  Once off it again, he had to use a breathing practice device, the kind they give you in the hospital.  And he did well since then in the rehab center, but I think poor breathing led to a buildup of carbon dioxide in his blood, but the rehab center nurse told me I was mistaken and "to calm down."  My input was ignored until, just like I told the staff, he had to go be sent back to the hospital for unresponsiveness, where he was intubated for the third time.  I should have called 911 myself, when I noticed what was happening.  Woulda, coulda, shoulda!  The ICU doctor told me he would have to be on the ventilator permanently and that the process of inserting and removing the breathing tube damages the delicate tissue of the trachea (our own breathing tube), basically shredding it.  The quality of life by that time was zero and I was forced to make a decision to remove him from life support.

I so "get" what you are saying.  At least I got to say goodbye, unlike some folks here.   😔

3 hours ago, novick23 said:

I feel like he exploited the trust of my kids, my family and me and now wants me to pretend to me ok to assuage his guilt.

That's your intuition speaking.  Sometimes it's called "gut feeling" or "a hunch."  Listen to it.  I'm sorry for this betrayal of your trust.

8 hours ago, novick23 said:

What's even worse is that we work together, and have seen one another during the day where he poker-faces our interaction and pretends like nothing ever existed between us.

Ugh.  I know men grieve differently than women do; we need time and space, it's true, but what he is doing to you is emotional abuse.  Yes, he is suffering, but he's dumping his pain onto you and creating more pain.  Besides that, he's giving you mixed messages: Go away, but don't return my stuff.  I see you at work, but I act like you're a stranger.  That then creates more pain.  That's emotional abuse.  I suspect you know this because you even used the word "discard" to describe how he is treating you, like you're disposable.

8 hours ago, novick23 said:

I have lost so much trust in him

Of course you have.  I would be concerned if you still trusted him after this treatment of you.  As you say, anyone who behaves like this --and worse, treats you like you no longer exist--even in the foggy days/weeks after a loss of a parent or anyone important, well, there is something wrong-- but it's with HIM, not with you.  I will defer to more experienced folks who will no doubt chime in soon, but I hope you will realize it's not about you, it's about him.  None of us here can take away the pain you're feeling, but the pain is real.

23 hours ago, Gwenivere said:

To me it’s another ripple in the grief ocean.  They just keep rolling in.  

Sorry for this additional ripple, Gwen.  But what an apt metaphor you shared!  That's exactly how it is for me.

Two years ago today, I had never really heard of sepsis and what it can do to a person.  Two years ago today, he collapsed from what turned out to be septic shock, but not caught early enough.  He rapidly deteriorated and became so deathly ill that he had to be put on a respirator, and his body artificially cooled down to combat the high fever as the infection took over, and given antibiotics to stop it.  And that was just the beginning.  It just went on and on and on and on...  I look back at myself and all the hours and days and evenings spent in that intensive care unit, and I wonder what resilience and strength kept me upright, all the while going to work when I could.  It's surreal.  Like a bad dream that's burned into your memory.

Someone on his Facebook posted about how her and her partner's lives have changed as a result of her advanced ALS (Lou Gehrig's disease) taking her muscle control away, and it just brought the grief all right back up in my face again.  Is there no end to it?  Is it a bottomless well that just keeps disgorging itself?

5 minutes ago, kayc said:

The next month it came to me where to give them to, I knew it was where he'd want them to go...to Sponsors, a place that helps former inmates readjust to society.... My George was always about helping those down and out,

George sounds like quite a gem.  That's how Mark was as well.  Being a big man himself, these clothes of his will fit other big men who are hard to fit comfortably, who need to look decent for a job interview or to qualify for a loan or whatever.  I just need to let them go out into the world. 

On 11/25/2018 at 2:07 PM, Marg M said:

pain-free birthday

Now that's a sentiment we can all get behind! 

I am so sorry.  The tearing pain is the worst in these days and weeks and months immediately after.  It really feels like having been torn in half, ripped out of the ground like a deeply-rooted plant and left to slowly wither.  😟 We understand all too well.

These last few comments remind me of a song with a lyric fragment that has never left me.  It was written to memorialize someone who had grown up way too soon and died alone.  The song is "Boy Blue" by Cyndi Lauper and the fragment I think of is this:

"And when we wake up old beyond our years,

Not quite as brave as we seem,

It's just the pain that never disappears."

I'm sorry to welcome you to the club no one wants to join, Amy.  Elsewhere in another thread you mentioned how the grief comes "in waves."  That's very true.  Like a giant sea-wave rolling in, all you can do is let it knock you to your knees and bow your head, and then lift it again when you can.

13 hours ago, TomPB said:

what am i doing here? 

I say this to myself often.  I exist in my home and go through the motions of going to work etc. doing daily chores and tasks but all the time wondering, "Why am I still here?"  Can't make up my mind whether to sell this place or stay longer.  Maybe this is what the old concept of "limbo" is like.

15 hours ago, TomPB said:

Bye bye.

LOL Tom, that's right to the point for sure!  Sometimes that's what you gotta do.

14 hours ago, scba said:

There is still hope.

There is indeed.  I had dinner with 2 friends who saw me through the last intensive care before I had to let him go.  We talked about how much has changed for us all since then, and reminisced... "Remember the time we went to this one restaurant with you and Mark, well that place went out of business, can you believe it?"  Things like that.  Not avoiding his name or his memory at all.  So there are some decent folks to counteract the insensitive blockheads.

4 hours ago, scba said:

My BF was dying because he didn had the RIGHT thoughts????? 

Ouch.  Ana, that's horrifying that someone would imply that he was at fault for his illness, and expect you to move on after 2 months.  Unbelievably rude.  Sorry you had to experience that.  😕