I just don't know

I lost Joe on 4-12-14 after a huge battle with "end stage liver disease" It was an almost 5 year battle. Only a transplant could have saved him but yet not one Dr ever saw fit to get him pre tested, type matched or try to get him on the "list". He always said they would just push him aside and let him just die, he knew he would never get his 2nd chance at life. But he was brave and if he was scared he never showed it to me.
He died a slow painful aweful miserable death, I saw things no wife should ever, I smelled death as he slowly bled internally to death over a matter of weeks, then gasped for air for hours as his lungs collapsed and failed. But I still tried to be hopeful, and I begged to any God or being to save him, give him a transplant keep us together another 30 years. Ultimately he lost his battle, I lost my love. I feel like I mourned for years already, as I watched him decline as I had to do more and more. From Jan to April, We went through a living hell. High ammonia levels, and the sometimes violent side effects they caused. He struck me several times, and when his levels returned to normal and he realized what he did he felt horrible. He wanted me to send him away, anywhere he feared he would kill me and not even know it. (He was 6'5, 296 lbs I am 4'11 125lbs) I told him I would never do that, nor nursing home that I was here for him till he took his last breath...and I was. He truely never meant to hurt me, and had not a mean bone in his body for me. He worshipped the ground I walked on and I felt the same.
He went into basically a coma from his ammonia levels being so high, he stayed there for 6 days this time. Was not a calm coma, he fought he bit he ground off all his teeth on one side of his mouth. But, he woke up and asked for me, he was kinda out of it but the next day the CCU nurse called me early and said he asked for me by name, he ate after all these days and they were moving him out of CCU. I got there as quick as I could, stopped and picked him up some snack foods cause he hadn't ate for almost 8 days. We had a great day, a few visitors we talked and laughed and I laid in bed in his arms and watched tv. He asked to call a few people, my mom being one of them. He thanked her for all she did, we made plans for the future after he would have gotten a transplant. He ate his dinner, got meds and then started to breathe differently than what I considered normal. I called the nurse in several times, and was told his vitals were fine. We hung out some more and talked and he accepted Christ. He called my mom back to tell her as he was so proud to admit that he openly accepted Christ as his Savior. At 11 pm he told me to go home, cause he felt "GREAT". I drove 30 miles home, told my mom I didn't feel good about leaving. Changed my clothes and went straight back, he was breathing worse and continued to all night and all night I called in nurses. At 8am he got more meds, by 840 he was able to say babe, to get my attention and all I understood was the words nurse and breathe, I said you need a nurse cause you can't breathe and he nodded. Next I knew I was being screamed at about incubation and I agreed and he was incubated and returned to CCU, and put into a coma medically. No one even warned me this may be the end, I was so un prepared! I even went food shopping when I had to leave the floor during shift change. I still thought this was just one more routine hospital visit. Our children came to be supportive as I was quite run down from 3 months of hospital stays and doctor visits when he was home. We stayed in CCU till after 1030 that night, usually they kicked us all out at 9 but for some reason the clock in his room wasnt working. We got home, and visited and did what worried families do. At 330 am I laid down and at 345 the phone rang and I was told to gather my family the end was near. Imagine my shock! We got back there and my love looked nothing like he did hours ago when we left, I was told I had many decisions to make, the ones no one wants to make! I asked for the coma medication to be stopped and So I went in and spoke to him, they said the hearing is the last to go. I said I dont know what you want me to do but I don't want to make these decisions and we never really discussed it, but if you want to fight then wake up and fight but if your tired and you need to rest then go to sleep honey cause I love you. The children and I went downstairs to talk about the decisions and I got a call to come up. I was told it seems your husband did hear you and has made his own choice and things are going downhill quickly and we called you a Priest. At 1030 am with his entire family holding hands he made his transition peacefully out of this world.
We miss him! He was 54 and way too young! I am 48, 30 of those spent with him. I put alot of his things in the closet and replaced what I took from his dresser with my clothes. So I am not looking at his clothes but also not seeing emptiness. I stayed in my home for 1 month straight. I cleaned, re arranged furniture, moved the pics around, painted and redecorated what I could on a very very small budget. His pictures everywhere do not bother me, to talk about him doesn't bother me. I went out and saw some friends this week and I was ok. Still feel a bit detached but for the most part good. I cried while I wrote this but this is first time in 2 days. His leather vest still hangs in the same spot, shoes still where they were. I am hopeful for the future, although I don't know what it brings. Our children are grieving very differently, some I am truly worried about. I talk to them a lot and I am as strong as I can be for them as well as myself. I had to be so strong all along as my husband was braver than any man I could ever know while he stared death in its face for years and I never ever let him know how scared I was and didn't cry in front of him even on that last night . I broke down really hard the 3rd week and 4th and now I am confused. I feel like the kids aren't doing so well and I feel bad for not being as bad off as they are. They weren't around much and didn't see the decline like I did, they didn't notice all the things happening. Looking back now I even see pieces of the puzzle coming together along with 1 of the boys. Our daughter and I are both at the same level, she truly understood her daddy and shes a CNA, but the oldest and youngest sons are really not good at all. I have to do legal things this week, and see if I can get the mortgage lowered. I have no income, no Ins policy to collect, and too young for widow benefits from Soc Sec. His friends all chipped in for his cremation and to pay my bills for the month as they stopped his check immediately. So for being a great husband and not making me work my whole life, I now get a big fat nothing! He had just started a new job when he got diagnosed 5 yrs ago, so he was terminated for failure to perform his duties...yes its true. We lost darn near everything and our credit was ruined! I just don't know where or how I will end up now. Have to wait 12 years to collect what he paid in during his lifetime, I have no minor children so I am ineligible for just about everything, and I have no medical myself, but a bunch of medical issues that I was denied SSD. Seems like I have no time to sit around and grieve any longer cause I need to survive and keep a roof over my head. I feel like it just is so unfair and unjust that I have to shove all this away, brush myself off and just go on or go under.

Comments for I just don't know

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Jun 02, 2014
Deepest Sympathy
by: Lawrence

What a ghastly story I wish I could find words to ease your overwhelming pain, but there are none, but surely in wonderful modern America there must be some help available for you, I just can’t believe you will be left to fend for yourself..
I live, thankfully, in the UK where someone with a terrible story like yours would never be allowed to suffer as you are doing..
It is very early days for you and your grief, and I have no need to tell you to cry, and cry but I guess you are doing it already, it is nature’s way of helping you overcome the anguish, and hopefully as the days, weeks and months pass you will find life that little bit easier.
You have joined a web site full of fellow sufferers who have lost a loved one and have suffered the torment you are in now.
I lost a cherished precious wife eighteen months ago and truly didn’t want to spend the rest of my life alone having been together for nearly seventy years, and yet, here I am offering you sympathy and hope for the future, so as you can see there is light at the end of the tunnel.
I am still in pain at losing the first girl I ever kissed and the last on her deathbed, but I am struggling along because truthfully there is no alternative.
With deepest sympathy

Jun 02, 2014
Similar situation
by: Anonymous

I too lost my love to liver cancer. he was not eliglble for a transplant, we tried. He was only in hospice for 6 days, but he had been suffering for a month before that. tim was the strongest bravest man I have ever known. It was 2 yrs from diagnosis to his death and all through the chemo the radiation beads, he never complained once.
It is only 3 months for me. I have good days and bad days and i cry everyday at least once. But to not go on and live like he wanted me to would be an insult to his memory. I am fighting my own battle with cancer but i know if I loose, he will be patiently waiting for me. Take care of your self and know you are not alone.

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