Hello

My name is Charlene, I lost my husband the second week of Jan 2011, and it's been a struggle.. He was my life, my soulmate, and best friend.  He was a stubborn hard headed man, who did what he wanted, which I loved about him, but what also killed him.  He's 32 and we have been married 12yrs on 2/14/11.  My Boo was everything to me, and life without him has been heart breaking, I don't go outside, I go to work, but hate being there, and whats worse is I work for a hospice company.  I can't sleep without sedating myself, and if a conversation should start  that even touches something sensitive I'm done. Tears are falling uncontrollbly.  My boy had been sick for a few months, and ignored it, no matter what I'd tell him about going to the doctors, he'd tell me, No I'm fine just a bug.... U know I hate doctors.  this went on for three months.  The last week of Dec, he got very ill, and refused to go, he could hold food dwn, he couldn't quench his thirst, his vile was black like coffee grounds.  Long story short, cause its very long, I had to take him off life support, when he coded it took them twenty mins to get his heart going again.  He had diabetes and didn't know it, I seen the signs in early Dec.  His illness affected every organ in his body but his heart.. I watched him for a week while his body fought off everything they did.  When I had to take him off life support, I wanted to die ith him and still do.. My love is gone over being stubborn, and this maybe could have been avoided.  I don't know if any of you ever had to remove a loved one from life support, but it was the hardest thing I ever had to do, and I wonder everyday, did I do it too soon, but there was brain activity, and I knew he didn't want to live like that, and I wouldn't have let him live that way... when will this guilt go away, when will I stop crying, I want to be with him, and everyday I think about it, because the pain without him is becoming unbareable....

Hi My name is Diane. I lost my husband on 1/6/09. Although the first time his heart stopped beating was the 12/27/08. He survived that long after they revived him. He was  without oxygen for 25 minutes. So when he finally woke up, there was the distinct black eyes. No emotion. Just a blank stare.  It was a horror to watch. Two days in the hospital his heart stopped again which further damaged his brain and heart. That day I put a DNR on him. On 1/6/09, I took him off life support. I knew he would not want to live like that. He would have been forever in a nursing home. Signficant brain damage. Unable to eat except through a tube in his stomach. It took a little less than 5 hours for him to pass. I cried so hard. I do know it was best for him and me and the kids. To have to see him that way would have been pure mental torture.

He was comfortable and he went out the way we both discussed it. I held him in my arms and spoke softly to him until he was gone.

Charlene, I read your post and just had to say, I know how you feel. I however lost my husband not due to illness, but to stupidity. My husband I found out after all this mess was a meth smoker.

I just wanted to tell you you didn't take him off too soon. If he was meant to survive he would have. You saved him from needless suffering.

My heart goes out to you.

Diane

Hi Charlene,

In your post I heard the pain of many who wonder if they did "the right thing." And in that question is often the seeds of guilt. As a hospice bedside volunteer for the past eight years, I've witnessed this struggle often. It's been my experience that when decisions regarding DNR's are made, the situations are very different than later when people reflect back on the question.

Caregivers are daily faced with making momentous decisions that "non-caregivers" may not understand. The decisions I've witnessed were based on compassion. Regardless of the outcome, there is no basis for guilt.

my brother started slurring his speech in December of 2010. On December 26th he entered his first hospital and was diagnosed with ADEM.They said he was having a reaction to the H1N1 shot and sent him home after a week. He continued to get worse and we felt so lucky to know someone who could get him into NYU where he would be treated by top doctors. They continued with the ADEM and told us he was getting better the day they cancelled his brain biopsy. That week started he could walk and talk by the end of the week he couldn't move and could barely talk. The biopsy finally happed(3 weeks later) and it was brain cancer. Glioblastoma. One doctor told me my brother won the lottery, just the wrong one.WE were told he had six months, he died in 3. We were able to bring him home to die, which I will be forever grateful for. It's the way he died that I just can't accept. He was in there, just not able to communicate at all.What a good man my brother was. Everything was about his family. He couldn't wait to get home at the end of the day. Why him when there are so many out there who are crappy people. I have the worst time hearing about some dead beat dad and God had to take my brother. It wasn't about money for him, he had a small house and loved it. I now have that small house and a lot of anger. I was always a happy go lucky person and that has all changed for me. I'm now angry and bitter at the world.I think God made a terrible mistake and I am paying the price and it is not fair. I'm coming up on a year and the feelings are so overwhelming it is hard to deal with them. I cry everyday. I feel gurilty for being alive, he was a better person than me honest, never did drugs. Always took care of his health. He did not deserve this and for him to know that he was dying and not be able to talk to us. It was CRUEL!!!  Really cruel way to die. March 30th will be 1 year and I still can not accept this