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lost husband to esld very distraught and full of guilt

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Posted 4/24/2009 7:33 PM (GMT 0)
I just lost my husband to esld. I was doing pretty good at taking care of him until hospice arrived. They told me they were taking over his medical care and he was gone in two months. (He passed away on dec.13 2008) shakehead they knew nothing about the medical aspect. I was yelled at for calling an ambulance without consulting them first. When i called them first, he was passed out on the bathroom floor and they told me to leave him there for a couple of hours and see if he came to. anyway, they finally called an ambulance that brought him to the emergency room. (They told me a week prior that if I did not sign the DNR Iwas being selfish)Then hospice yanked him out of the emergency room and put him in a nursing facility where in two days he went into a coma and died. No meds, no IV's , just let him die. When I signed the DNR they told me that the only thing that meant was that if he had a heart attack, they would not revive him, but they would still give him meds etc......To this day the guilt is eating me up BADLY. I was not educated enough to know that he would go into a coma and die without his lactulose. I miss my husband soooooooooo much that there are days I don't think I will make it...........any help , advice I need to talk to someone who lost a loved one to esld........PLEASE HELP
Posted 4/24/2009 8:36 PM (GMT 0)

FTLOM, I am sooo sorry for your loss.  However, I implore you not to second-guess yourself as to getting Hospice involved.  It's doubtful that he would have lived longer with or without hospice involvement.  Even with Lactolose, he likely would have reached a point where it was not working and would've gone into a coma anyway.  That is usually what happens with ESLD.  In order for Hospice to take over, the doctor has to state that the patient is not expected to live longer than 6 mos.  Hospice will not accept anyone who is still receiving treatment.  They give palliative treatment only; i.e., pain meds or other things to make the patient more comfortable.  They are usually a great help to the family and the patient.  Just as with any organization, there are bad apples I'm sure.  You could have gotten involved with some person or a particular hospice that wasn't as sensitive as they should have been.  But know that you did what you thought was the best for him.

I know you must miss your husband terribly.  How long was it from diagnosis to his death?  I get the feeling that it wasn't a long time, or that he suddenly took a turn for the worse and was gone. 

Please don't beat up on yourself.  Your husband is at peace now and would want you to come to terms with his illness and death.  The people here who have gone through losing a loved one will support you.  It's a little slow on the weekend, but believe me they will respond.

Hugs,

Connie

Posted 4/25/2009 1:20 AM (GMT 0)
Hello fortheloveofmarc and welcome to HealingWell. Please accept my sincere condolences on your dear husband's passing.

I am so sorry that you had a bad experience with hospice. My husband passed away 2 years ago today from liver disease. The hospice that assisted my husband and I were great. Most of them are very compassionate organizations.

Guilt and anger were the 2 most over-whelming feelings that I experienced during the first year after my husband died. Now 2 years later I have finally accepted that it was God's will.........no body else's. I know that I and his doctors did everything possible to keep him alive. It was not to be. He took his lactulose until 2 days before he died. By then he was unable to eat or drink anything. He went into a coma and died peacefully at home. I had a hospice volunteer with me for about 8 hours the day that he died. It was by far the hardest thing that I had to ever do ..........was to let him die.

I went to a bereavement class about 6 months after he died.........was the best thing that I could do for myself. When you are feeling up to it I highly recommend going to one or get into to counseling. Death of a spouse effected me a lot harder than when my Mother and Father and 2 brothers died. Everyone handles grief differently. But right now it is time to take care of you.........after taking care of your husband for so long......I bet you haven't done a thing for yourself in a long time.
The first time I laughed after he died.........made me realize that I hadn't really laughed in over a year.........I had forgotten how it felt.
I know you must be terrified right now......But believe me things will get better...........I am living proof.........there's life after a death of a spouse.......

Please take care.........my email is in my profile if you'd like to contact me personally..........

Thoughts and prayers...........
Posted 4/25/2009 2:39 AM (GMT 0)
Hi fortheloveofmarc - I have not gone through losing my husband, he has cirrohosis and hep c. I can't imagine your husband would want you feel guilty. Try and remember the good times you shared. Maybe do something positive like volunteering to keep busy. I truly believe we all get to see our loved ones again. Please be strong and take care of yourself. I will keep you in my thoughts and prayers. This site is awesome. toolost
Posted 4/25/2009 1:07 PM (GMT 0)
fortheloveofmarc, I am so sorry for all that you have gone through and the passing of your husband. I can only imagine how you are feeling. I'm sorry that you had a bad experience with hospice. I think your's is the first case I have heard of, but there are probably others out there. Your husband must have been very sick for hospice to become involved. As Connie said, hospice only becomes involved when there is no chance of recovery. I'm sorry that things weren't explained to you by the doctor's, ect. as well as they should have been. Take everyone's advice and let go of the guilt. Nothing you did brought on the passing of your husband. He is now in a better place, where he will have no more suffering or pain.

My thoughts and prayers are with you.
Posted 4/26/2009 8:50 AM (GMT 0)
Hi fortheloveofmarc,
Sorry about your loss. I lost my dad almost 2 months ago because of ELSD and cancer. I've lost my dad because of ELSD not Livercancer.
You know, at the end he had CVA (cerebrovascular accident) and he has been in hospital for almost 3 weeks. Sometimes I ask myself what did I do wrong, What could I do more and ....
I had the same expriencing in the hospital, I had fight with the Doctors and nurses.
But at end I know he is in the better place, he is not going through Encephalopaty or other stuff, I know it is hard. My Mom lost her husband.
My dad died because his liver gave up, and thank god he didn't get it what has happend to him, at end his hand was so swallen and he was bleeding from his nose and mouth. Believe me I miss him everyday and I would do anything to bring him back. But I know he didn't want to live like that, by going every now and then to hospital because of his Amonia level (encephalopaty).
I still think that I could do more for him, there are a lots of unanswered question for me. But I think we shouldn't be so selfish, we don't want to face the fact that they are gone, we don't know, how do they feel about it(did they like it the way they lived).
I am sure that my dad didn't want to live like this anymore. For the past 3 year of ELSD, he said it many times, I am tired and asked me many times to stop it (no more doctors or MRI, CT) but I just wanted him to be there, doesn't matter how?
Dear FTLOM, believe me there is nothing that we could do for them. A friend told me that at least you had the previlage of taking care of him.
So hon, just be strong and know that there are in the better place, just know that he loved you and still loves you.
He is still in to your heart and watching over you.
Please Please take it easy on yourself and , take care of yourself , or at least let others take care of you.
You are in my mind and prayers
Hugs
Shiva
Posted 4/26/2009 6:35 PM (GMT 0)

Shiva, it's good to know that you are still looking in here.  How are you doing, sweetie?  You sound like you have come to some kind of peace about your dad's death.  You can be so much help to those here still going through it.  So please come back when you can.

Hugs,

Connie

Posted 4/27/2009 4:03 PM (GMT 0)

Hi Fortheloveofmarc,  I lost my husband to liver cancer on January 26th 2009.  It's very hard to go on at times.  I visited his grave yesterday and it's still very hard and I miss him very much.  But I truly believe God does not make mistakes and we have to have the faith and strenght to go on.  I'm fortunate to have 3 wonderful adult kids and 8 grandchildren to keep me going and way too may mother hens.  Please don't feel guilty about what has happened.  The one thing I remember most going thru this whole horrible time, was every day was a new day, you didn't know what was going to happen and sometimes it was each hour or each minute, things change so much.  Our story was crazy just like others here, long story short, Jerry found out in Aug 07 he had hep c and cir, Oct 07 he had a transplant after being on lifesupport for 8 days, then in Apr or May we found out about the Cancer.  Find you a grief support group or something, your husband would not want you to stop living.  Me, I'm still trying to figure out what I'm supposed to do, but I know I will be OK.  Take care

Helen

Posted 4/27/2009 9:17 PM (GMT 0)
Thank you all for your replies. I'm just having a hard time and Have not been online. thank you and god bless ..................................................................
Posted 4/28/2009 3:01 AM (GMT 0)
Dear for the love of marc,

I'm so glad you posted again. I read these posts to you and that is why I keep coming back to the forum. There is so much compassion here.

Pink Grandma, I've seen so many of your posts that helped others with the day to day issues of living with ESLD. Reading your post today made me feel better. There is so much sadness I am experiencing with what this disease is doing to my best friend, Mary. Thank you for telling your story and to every one else who wrote. This is some hard stuff we are all up against. I'm pretty strong, but I've got so much emotion in it, that sometimes I can't see the forest for the trees. Life is one wonderful gift, isn't it?

Joan
Posted 4/28/2009 9:39 AM (GMT 0)
Hi Dear Connie,
Thank you, as always you are so nice and kind for welcoming people here.
I am doing better now, I have bad and good days. I have to be strong for my mom, you know.
Thanks again
Hugs
Shiva
Posted 4/28/2009 4:49 PM (GMT 0)
Hello Joan and Shiva,

Joan as some of the older members know, this forum got me through a very rough spot in my life and still does. I know that I didn't have anyone to talk to about it, that really understood......that is until I found HealingWell. I've learned more about liver disease from the members here on HealingWell then from all my husband's doctors put together. My only regret is that I didn't find HealingWell sooner. I believe that education is the key to get a liver patient a transplant in time. There were so many things that I didn't know that could have played a factor in my husband getting listed the first time around instead of the second time. I don't want anyone else to miss the opportunity to receive a transplant because they just didn't know something.

Shiva.........I am glad to see you posting again..........It's helped me tremendously to stay active on this board after my husband died. With me trying to help others here...........it's like my husband did not die in vain.

Thoughts and prayers to both of you.
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