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Born in the  70s

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Members: 650
Latest Activity: Sep 25

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Comment by JC6767 on September 25, 2019 at 4:38pm

KAW, I’m so sorry you lost a son also.  I completely agree that unless you lose a spouse there is no ‘getting it’.  The pain is not something I’d wish on anyone.

Comment by KAW on September 24, 2019 at 8:06pm

You are so right @JC6767

I am so glad to be here! Truly, no one knows what it is like unless they have experienced it. My husband just turned 45, 3 weeks into this ordeal. I am sorry for your loss & I also was the one who had to make the decision about the ventilator . I do have great support with friends & family, but I just know they don’t quite “get it”, they cannot know how deep & bad the pain is & there is no comparison. We lost a son 3 years ago in a wreck & that was horrid, but this hurts worse. 

Comment by JC6767 on September 24, 2019 at 7:34pm

Hi KAW,

I am so sorry for your loss.  This is a group nobody wants to belong to, but hopefully you will find comfort from others who can relate.  What a terrible ordeal and shock you went through.  Be kind to yourself, and in the first few months it helps to just breathe.  Take deep breaths.  Take one minute, hour, day at a time.  Accept or ask for help from friends and family if they offer.

I also suffered a shock from a devastating diagnosis.  My precious husband suffered an intracranial brain aneurism on his brain stem. He was healthy and it was completely unexpected.  He said he had a headache, and then started screaming from the pain while I was on the phone with the 911 operator.  He then went unconscious.  They took him to the hospital, but he remained in a coma until I was asked to make the impossible decision of pulling life support.  

After 2.5 years, it still seems surreal at times.  You will get through the grief and pain.  

Hugs to you.

Jennifer

Comment by KAW on September 24, 2019 at 5:48pm

Hello. I’m very new to this journey, as I just lost my husband August 16th. My heart is broken & I cannot even imagine how I’m going to continue without him. 

He had some upper respiratory issues Since Memorial Day and decided to let it run it’s course. He was at work June 12th but came home & was in bed by 5pm not feeling well & said he was going to the urgent care in the morning. The next morning he told me he had gotten up to go to the bathroom & couldn’t catch his breath. & wanted me to go with him to the urgent care. He had to stop and catch his breath 3 times just walking through the garage. He was admitted to the hospital for double pneumonia, Afib, congestive heart failure & respiratory failure. After 3 week he was released to a physical rehab where he stayed for 1 week before being sent to a different ER for severe dehydration, critically low potassium, elevated liver enzymes & high ammonia levels. I had him transferred to UNC Rex hospital where he was treated & they began trying to figure out why he was not getting better & develop a treatment plan for him ( we were still being reassured that he could recover markedly & live a normal life with oxygen treatment). After 2 months, 6 days (total) of inpatient treatments, tests, heart caths& lung biopsies, we were absolutely exhausted. He was never on oxygen before June 13th, nor any medication aside from vitamins. Since being hospitalized he was never on less than 2 liters & was on as much as 13 liters on BiPAP. The biopsies were sent to the Mayo Clinic, where autoimmune & Interstitial lung disease were ruled out. The report said it looked like one of 3 different conditions. He voluntarily went on the ventilator so he could get some rest & his body could redirect energy to the healing process. 24 hours later, between the Mayo Clinic & Duke University Hospital, we were given a diagnosis of Hammans-rich Syndrome which has a 0% survival rate. He died 2 days later & he never knew. 

Comment by JC6767 on September 23, 2019 at 3:30pm

Thanks to everyone for sharing your journeys in this post. I’m 47 and feel 100 years old on the inside some days.  I try to take care of myself with good self care, but it is not easy.  I am 2.5 years into this unexpected journey and sometimes I’m ok and sometimes I cry and wonder how the heck I ended up here.  The love of my life taken way too soon from a massive and sudden brain bleed.  It is comforting to know there are others out there struggling to push through the grief.  Sometimes I feel ok and hopeful, and sometimes the pain seems to punch me in the gut out of nowhere.  I absolutely agree that we are all forever changed going through this journey.  Hoping that others continue to share so we can support each other in healing and acceptance of becoming someone different.

Comment by AandC on September 23, 2019 at 3:03am

Parsnip

This morning I was reading your post and tears began to fall from my eyes. I have been busy talking to friends who support me in this journey daily, mostly mornings and nights. 

You are so right that we have become different. There's no going back but we can go forward step by step. 

Blessings to you

Cher

Comment by AandC on September 22, 2019 at 8:03am

:) The EDCZone

That was beautiful as well as well detailed to help us out here struggling day to day to learn how to live again and not feel guilty for communicating with others as friends/companions. 

Lovely story behind your survival. 

Thank you Jace for sharing

Many hugs for you my friend. 

Comment by TheEDCZone on September 22, 2019 at 7:40am

@Parsnip, @Roxana, @too young to be this old @AandC 

Thank you for your stories, first off I'm sending you all my condolences and support for your loss. I lost my wife Lisa almost 8 months ago to Stage 4 Breast Cancer and Metatastic Brian Tumours.

Lisa wrote me a letter in April 2017 after we found out she had a brain tumour, to tell me it was ok for me to find someone else after she had gone, as she knew I would need a life companion, someone to talk to and share my ups and downs with. It was the hardest thing to read and the idea that I would find someone else like Lisa was a Billion to One. 

In May 2018 I was hit with depression and had some dangerous thoughts. I was able to get through that due to a very close friend contacting me and talking to me and letting me talk to her about my feelings. Lisa knew of my friend and she knew we had history. I've known Tara since we were both 12 years old, we even dated in High School in our senior years. She was my High School Sweetheart. 

A month after Lisa had passed I was asked would I date again... I had to think really hard about that, I just didn't know, and the idea of dating scared me, I hadn't dated since I was 19/20 years old as I meet Lisa 3 months before my 21st Birthday. Also the thought of dating and explaining I am a widow, and have three kids Connor 18, Ashley 16 and Ronan 11, and that Connor has Anxiety issues and undiagnosed Autism was not my idea of a good time.

It is hard to know what to do, I told a new friend recently that we don't get manuals when we have kids and have to figure it out as we go and we defiantly don't get a manual on how we should feel or what we should do when we lose our life partners, we have to stagger from one minute to one hour to one week to one month at a time. IT seems because we have lost our other half that we loose ourself, we also loose focus as life seems to have become too hard over night. 

I thank Lisa for teaching me that it is ok to live past us, and to live my life alone or with someone as I see fit, my three children all agree that I have had so much painful heartache that it is my time to shine and to be finally happy, it is not for me to forget Lisa or substitute her with someone else but instead cherish those moments and to make new ones with my kids and maybe someone else out there.

Lisa spoke to me a lot about Tara and what she was up to. Tara has had a loveless marriage for over 6 years and just can't move on, looking back Lisa was trying to tell me something, I believe it was its Ok, you make Tara part of your life, Tara has been my life coach and biggest supporter, she got me through Lisa's passing and the first few weeks and months, yes I felt guilty and that I was cheating, I don't know where life will take Tara and me, I don't know when or if we will take that next step, but it doesn't matter as long as I know she is there for me and I am there for her as friends and companions its more than I could ask. 

I have had people reach out to me from here and I have helped as best I can, I will listen, I will not judge, I will support and give guidance when I can on how I coped. I can't wave a magic wand and make everything right or better but I can listen and remember most times your right, you just can't hear it.

Sorry for the long winded post but I just can't help it I just feel I need to help when I can. Lisa is with me in spirt and I know she would be proud of me and my kids.

All the best Jace.

Comment by Parsnip on September 22, 2019 at 6:26am

TYTBTO - Thank you for your post.  Ditto all of it, and hearing it from someone else is so comforting.  I've recently moved because I felt like I was just living a lesser version of our life together, and I'm now trying to figure out what I want and even who I am in this new city.  The feelings of just wanting him and our life together back are so strong, it feels like it can nearly happen sometimes.  And while I think that I'd like to find someone to have some sort of relationship with, I can't imagine doing that without completely freaking out.  I feel like I'm exactly how I was when I was younger - that uncertain, insecure, scared person. 

One thing that helps...  My two biggest loves of my life - my husband and my sister - both told me at different times how different I was/am (my husband from when we met, my sister from since he died).  And there's no going back (as we know).  We are such different people, we can't possibly go back to that person we were even before our people died, never mind before we met them. 

I like to think of Peter as my guardian angel and the person who is still in my corner, cheering me on and knowing that I can do it.  When I can't do things for me, I do things that I know are good for me to make him happy and proud.  And when I do things that are not the best decisions, I know that he is kinder to me than I am to myself, loves me and is hugging me.  It's not always easy for me to get to this point, but I try my best.  I think it also reinforces our relationship as a current (though different) thing and not an over thing, and I like that.

Comment by Roxana on September 22, 2019 at 12:57am

Dear Too you g to be this old,

I so recognise myself in your words.

I am only 35, and both the idea of a life of loneliness and the idea of having yo find another man sicken me, when all I want is my husband. Just as you, I have been blessed to be married with the most spe ial of men, the kindest, most loyal, honest, generous person,and finding someone as special as him would be near impossible. And this breaks me to pieces. God, how I wish I could turn back time and take my husband to the doctor again. He would still be with me now.

Just as you, I reversed to the insecure girl I was before MRk. He gave me confidence, treated me as the most amazing woman on earth, supported me in everything, accepted me just as I am, loved me unconditionally. 

Now I feel so alone, especially at events. And I dread the idea of the dating thing... 

I think what we have to do is not put any pressure on ourselves. Im in no way ready to date, i am “ content” by myself tight now. I believe God sees our pain and at the right time He will bring us the right guy if neccessary. Lets leave this worry in His care. We have enough to worry about at the moment.

try to spend time with yourself, try to know yourself better, try to pamper yourself and give yourself a break. 

With time, everything will fall into place for us.

love and hugs.

 

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