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Born in the  70s

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Comment by Mo on December 13, 2019 at 4:07am

Hello DeeDee. So sorry you have to be a part of this group but know we’re all glad you found us. It’s been almost six years for me. Getting to know the people on this site was such a big help. Seeing that there were people that knew what I was going through was gigantic. You should also join the group for those who lost someone in 2019 if you haven’t already. 
“How do you keep breathing?”  There’s no real answer to that. You just do, but each of us are so different and yet so much the same. Time helps the most. Although when I first lost my wife I knew this but I didn’t know if I would ever see two weeks out or three months much less a year!  But it happened.
Here’s the answer. You breathe when you can. You sleep when you can. You eat when you can. Listen to your body. When it says you need to grieve then make sure you do. Function as you can. Be around people and go out in public as you can but please don’t beat yourself up when your body says it’s time to hole up and cry for a day or even a week. And don’t listen to those who can’t understand why your still grieving after such and such a time. They have no idea. But we do here. And we know the pain. We all hurt for you. And you can write your heart out here. No one will judge you. 
I wish you peace and the freedom to grieve. 

Comment by DeeDee on December 12, 2019 at 4:08pm

Some days I just want to stay in bed and cry all day but I know my late would kick my behind and say keep going gorgeous and be nice to people... how do you keep breathing? How do you wrap your head around a spouse not being here with you? I lost my love on Nov 23 2019 and I can’t move some days! I feel like I’m in robot mode...

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.

 

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