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Long-Term Illness

For those widowed by cancer and other illnesses or long term conditions that required caregiving.

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Patience (Diane) is your group greeter.

Members: 793
Latest Activity: Aug 16

Discussion Forum

Long-Term Caregiving, Sudden Death

Started by Marian. Last reply by Marian Jul 25. 4 Replies

I think I posted this to the wrong place first.  Apologies to all!I lost my husband on 6/18/20. We were/are 63. He had been very ill since 2011, but in mid-August 2019, caregiving became intense.He…Continue

Angry Long Time Caregiver

Started by Alani. Last reply by rwgtmg Apr 8. 3 Replies

I have spent the last 12 years caring for my husband who passed away on February 10, 2020.  He had Hep C which became cirrhosis of the liver and eventually  turned into liver cancer.  After a liver…Continue

I'm lost

Started by Ozzy turtle. Last reply by Kerryn Mar 27. 8 Replies

I'm new to this. My husband passed away on January 2,2019 from respiratory failure after a 10 year battle with COPD.We were married for 6 years, together for 9. Now I'm completely lost without him. I…Continue

Neurodegenerative disease MSA anyone else?

Started by LP. Last reply by LP Jan 24, 2019. 8 Replies

my husband died in Feb’18 of a rare condition called Multiple System Atrophy, a form of Parkinsonism, for which there is no treatment. He gradually lost all ability to move, speak, swallow, blink and…Continue

Comment Wall


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Comment by Alex on July 29, 2020 at 3:49pm

Hi Rebekah,

I'm so sorry that you have a reason to be here at such a young age too but I'm happy that you've found that space. I was moved by your story and reading it was a bit like I was reading my own... 

I'm 31 this year and lost my partner (we were not married) in July 2019. We too got only 3,5 happy years together and he also was born with a genetic life-limiting condition (CF). Conan was a fighter and was doing well against all the odds too. We had normal and happy life but we were always aware that it won't last as long as we would want to; 10... maybe 20 years but we certainly didn't expect that. I also struggle with the fact that we will never become parents. I always knew I will lose him early but I also believed that the "piece of him" will be alive in our child and that would be a reason for me to get out of bed every morning when the worst happens. We were just taking our first steps towards ivf when our world collapsed.

Similarly, I consider myself the luckiest person for being let into his life, as he was a great energy to be around and a really selfless person loved by everyone, who knew him.

I'm still lost and I still didn't figure out how to live my life without him so I won't be albe to provide any life saving suggestions. I give myself time to grieve, try not to rush any decisions and use help of a counsellor. I just wanted to let you know that you are not alone and if you ever feel like talking to someone with a similar experience, please don't hestitate to reach out. I'm not trying to say that I know how you feel, because I realise that everyone's experience of grief is different but I just see a lot of similarieties and I might be able to relate to a lot of your struggles. 

Take great care of yourself! Aleksandra

Comment by LP on July 28, 2020 at 10:19am

Hi Rebekah, I know that book, it’s really good. There are quite a few books out there for young widows. It must be difficult to have to deal with other people’s shock. I was 58 when my husband died, and people were still shocked that I was “too young” to be a widow. You have to remind them that not everyone is so lucky to die of old age. The is also a group called WAY (widowed and young). You might want to look into that. You’re doing the right thing by reaching to for support early. I did too, and did not regret it. You have got tough times ahead, but you’re in great company here with people who really do get it.



Comment by T_Bex on July 28, 2020 at 10:03am


My name is Rebekah, I am 29 years old, and I lost my partner on July 8th, 2020. Chris and I had been together only 3.5 years, and while we were not yet legally married, we were planning the wedding, so I hope I am welcome here. Chris had sickle cell anemia, and I knew from our second date that I would lose him early; however, I never expected to lose him this early. We should have had at least 10 more years together. Every time I prepared for this moment, I planned on how to tell our kids, and how to be a single mother - I never expected to lose him before I had a chance to have any of that. 

Chris was one of the most selfless, loving, and strongest people you would ever meet. He continually beat odds his whole life. When he was born, they said he wouldn't make it to 2 years. Then it was 12, then 20... he fought hard every time the doctors said he didn't have a chance, and came through so much in his life. He faced challenge after challenge in his life because of his disease, but he never let that define him or affect his zeal for life. He made every opportunity in life a chance to smile and be happy, and those he smiled with he called family. He was one of those rare people who inspire everyone they come into contact with: through teaching at different schools, or impacting youth in his church, there are thousands of people who call him friend and mentor. Honestly, I've been blown away these last 3.5 years that I was special enough to be "his person". I loved him more than I ever thought possible - he was good to me and good for me. He taught me what love is, and how to love myself as much as he loved me. I never believed in soul mates until I met Christopher. 

He went to the hospital on June 30th for what we thought was another sickle cell crisis. In a few days, it became apparent that he was much sicker than any of us had seen him before: his liver and kidneys were failing, and he was having profuse nosebleeds that couldn't stop, because his liver wasn't producing any clotting factors. Just a few short days later, his body gave in to its weakness and stopped functioning. In the last few hours we decided to make him a DNR, since he was showing no signs of brain activity, and the hospital allowed me to stay at his bedside until the last moment. 

He was only 32 years old - young, even by sickle cell standards. I miss him every minute of every day, and am just trying to figure out how to handle life without him. I hope to find community here to grieve and walk through this process together. I found this group through a book my sister gave me called "It's OK that you're not OK"

Comment by edj9 on July 18, 2020 at 11:41am

Thanks, Cynthia, for the welcome. I’m sorry to hear of your husband’s rapid decline. Quick or slow, loosing your spouse is a huge trauma. I certainly appreciate having a forum in which to voice my hurt. I firmly believe that the only way through this is by taking it out like a new pair of shoes, and wearing it until it’s good and worn.

Comment by goingon (Cynthia) on July 18, 2020 at 9:55am

edj9 -

I'm sorry for your loss.  I understand your husband's wish to end his suffering.  My husband was diagnosed with cancer in January 2010 and died in November of that year.  I was his caregiver for a year.  Fortunately for him, the end was very fast.  I went downhill in October and as I said, died in November.  I'm so glad you've found this site - there is nothing but love and support here. 

Comment by edj9 on July 18, 2020 at 9:39am

Hi all. The number of posts is overwhelming and I wish I could read them all. I was the sole caregiver to my husband, Chuck, for 2 years prior to his death. I hope that qualifies for long term illness here. We’d been together for 28 years. He took care of me so well and with so much love for the first 26 years, that I would have endured as many more years of caregiving as Chuck could stand. Like some, whose posts I’ve been able to read, couldn’t bear the thought of letting anyone else bathe and change him, so torture as it was to be constantly reminded of his ailing health, I did it. But in the end, I felt he was really just holding on for my sake. He had asked me several times how I would feel if he committed suicide. The first time I heard it I was horrified, but as time progressed and is condition worsened, I began to tell him that I would be greatly saddened, but that I would support him in whatever decision he made. Ultimately, he decided to tough it out until his heart finally failed. I was given a moment to decide whether to put him on a ventilator, and knowing his history with clostrophobia and PTSD, I made the decision to let him go. So I spent his last moments whispering my love for him and telling him that he’d made it through the surgery and would be coming home soon, while he slowly faded away hopped on on morphine. The last thing he said to me was “don’t forget my electric blanket!” And then the light in my life just winked out.

Comment by Soaring Spirits on May 1, 2020 at 11:53am

Check out our Telethon for HOPE live streaming on or on the Soaring Spirits International Facebook page. Kelley Lynn did a keynote and Cindy is doing a cooking lesson right now. Non-stop entertainment all day today until midnight Pacific time and then we're back at it tomorrow from 10am to 10pm Pacfic time. 

Comment by LP on March 28, 2020 at 2:10am

DIVA70, I too was a carer for my husband. He developed Multiple System Atrophy (like Motor Neurone) which gradually paralysed him totally. It hurt him to see me become his carer, but it was a privilege - I couldn't bear the thought of anyone else taking care of him, also because of the intimate nature of his needs - feeding, toiletting, washing, treating pressure sores. It broke my heart but I would do it all again, no question. 

Comment by only1sue on March 27, 2020 at 6:29pm

I think the "Long term illness"  group shows the power of love. I looked after Ray for the last 13 years of our 44 year marriage. It was a privilege but not always a pleasure. But it was also a thank you for the years he was our bread winner while I raised the kids. He was always a hard worker and a good father to our children. I have been a widow for seven years. I have had a few dates but no-one comes up to the standard he set for me.

Comment by Brucer on March 27, 2020 at 5:12pm

I so despised blood tests and scans.  It was something you could get so focused on and waiting for results was heart wrenching!  Cat scans, PET scans, CA125, white count, Uhhhhggg!  Hope this site helps comfort you book girl and DIVA70.....


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