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Long-Term Illness

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

Check the 'Help' tab for more guidance or send questions to [email protected]

Patience (Diane) is your group greeter.

Members: 758
Latest Activity: on Friday

Discussion Forum

Not like the Movies

Started by Snow. Last reply by CaliforniaGrieving Aug 27, 2018. 10 Replies

In 15 minutes I will have passed my third day of being a widow. I have been bracing myself for this pain for 10 years, when my beautiful husband of 26 years was first diagnosed with advanced…Continue

Neurodegenerative disease MSA anyone else?

Started by LP. Last reply by riet Jun 2, 2018. 6 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

how to handle life now

Started by nayajivan. Last reply by Mamitha May 11, 2018. 3 Replies

Hi,I have lost my wife Archana on 12th March 2018.19 years of Marriage..2 beautiful and lovely sons - 17 and 14 years..15 years of battle against 2 deadly diseases - Kidney Failure and AIHA...9 Years…Continue

Tags: sons, marriage, AIHA, dialysis, failure

Unexpected Emotions

Started by Snow. Last reply by Linda C Mar 3, 2018. 10 Replies

I had braced myself for the grief of loss, unbearable loneliness, some other things too awful to write about, but I'm also starting to feel quite hurt and let down by some people. Is this normal?…Continue

Comment Wall

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Comment by gcortez55 on January 31, 2011 at 2:37pm
My husband had a form of frontal lobe dementia with rare symptoms. He died 8 months after diagnosis. Caregiving literally felt like it took a decade off of my life. I cared for him at home until the last 3 weeks of his life, then again at home for the last 13 hours. He was rejected by 3 different hospices and almost every memory care facility in southern California. The ones he was let into he was kicked out in less then a week. Caregiving was the worst and best experience of my life.
Comment by LLM2 on January 30, 2011 at 11:46am

Caregiving was the hardest thing I've ever done, hands down. Period.  I was fortunate to be able to take 3 months off of work to take care of my baby full-time at the end. The course of his disease was short -- 11 months from diagnosis to death and he was in relative good health til the last 3 months when a strep infection knocked him down and eventually out. 

I loved caregiving. I don't want to do it again anytime soon, but I was honored to get to do it for such a fine man.  Trust me - while in the midst of it I probably wouldn't say this stuff -- it was miserable and brutal at the time.  No sleep, forgetting to eat a lot of the time...looking back on it now, nearly 11 months later, I have a better perspective. 

I am sorry we have to meet this way.  I wish you all peace.  Lori

Comment by Sandy on January 28, 2011 at 4:24pm
Unlike lots of you I was only a caregiver for 7 months.  It was the hardest thing I have ever done in my life! I was my husband's only caregiver and I worked full time (well, I tried to be at work 40 hours a week).  Those of you that did it for years must be truly amazing people.  I know we will all do anything for those we love but caregiving takes so much that until you do it you can't appreciate the energy it zaps out of your body.
Comment by Jenn on January 21, 2011 at 11:18pm
@Peter: Let's get those numbers up! ha ha ha
actually, if it's a competition, then we are the ones 'winning'.
Comment by A Widowed Father on January 21, 2011 at 8:39am
The "suddenly widowed" group is up to 22 members and we only have 7, looks like we need to do some recruitment and get some more LTI widows to join the site. :)
Comment by DaFrov on January 20, 2011 at 9:48am
Carl had ALS for a bit over four years.  I knew it was terminal but can still remember thinking the night he died "not today!"
Comment by Jenn on January 17, 2011 at 2:30am

Hi everyone, nice to meet you all.

 

I pretty much hated it too. I didn't even realize for a long time that was what I was even doing. I would say most of where my guilt comes from would be during this period. I was not good at it and didn't want to be. I was also taking care of a newborn. So there was some resentment towards Joost that he wasn't pulling his weight even though his weight was dropping considerably. you know? hard to explain. let's say it took a long time to change my expectations of him. 

 

 

Comment by Robinmo on January 16, 2011 at 5:44pm

I HATED CAREGIVING, though I loved my husband.

Every time I revisit this long period of pain (not that long compared to Silly WW's!) and the damage it did to my mind and soul and to our relationship... I find tremendous hurt and room for healing.

Every time I write about it, I think people will hate me for sharing the ugliness... and I usually get the most loving responses. An area in which I apparently don't at all see myself the way the world sees me. And sharing with others who had extended caregiving experiences is so, so helpful.

Comment by A Widowed Father on January 14, 2011 at 7:26am
I'd say that makes sense now, and is a good start to group us together.  As the numbers here grow into the hundreds and thousands I could even see breaking it down further into "Illness with less than 6 months from diagnosis to death." and then like 6mos.-2yrs, 2+yrs. but obviously that wouldn't be necessary until we were in the hundreds here in this group.

VOLUNTEER
Comment by Soaring Spirits on January 14, 2011 at 7:10am

Eh, crap, sorry Peter. I'll clarify the group description. My intention (however badly stated) was to put cancer WITH long term illnesses. I know not all cancers are long term, and not all illnesses will fit, but while the community is small, I didn't want to have (say) 20 cancer people in one room and one person for lupus, diabetes, degenerative diseases, each in a room all by themselves.

 

Really sorry for the confusion, thanks for letting me know of it!

 

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