I'm 43 and watching my father wither away before my eyes. Apparently he has been sick for quite awhile and never uttered a word. I only found out a little over a month ago by a photo secretly taken of him that something was wrong. My father had lost so much weight that his skin was hanging off him except his stomach and he looked 9 months pregnant. I was in shock as I had only seen him the month before and he didn't look this way. We still do not have an answer to what is wrong but assume it's cirrhosis because of all the symptoms but regardless it is liver failure as his eyes have yellowed and skin as well as his tears. He made the decisions to not have ANY help and this is something we've honored. My once big strong Daddy has now become a figure that I no longer recognize. He is in the end stages and it has been absolutely horrible to watch. I am haunted by this, Noone should ever have to see oe witness the things I have. Watching him lay there and make these noises and try to breath or swallow.. today we had to call an ambulance as he had soiled himself and we could not move him. So he was taken to the hospital and was checked out and sent home with hospice. In less than a week this has become a nightmare. I'm so lost. The man who has loved me all my life and never gave up on me is dying before my eyes. In such a short time he became unrecognizable..he looks like a skeleton, like something out of a horror movie and not like my Daddy... I don't know how to life without him.. his wishes have been honored and try as we might, we have stayed beside him..this is a horrible way to pass and a nightmare to watch firsthand. I know at any moment I could get the call that he has passed whenever I'm not there and that terrifies me as well as the thought that he will take his last breath in front of me and I will watch as his spirit leaves his body. I am in such a fog and scared.. lost and alone.. I don't wish this experience on anyone, it is horrible to watch someone you love die from this..
You are correct when you say that it can be a nightmare to witness. My husband's 6 week dying process was horrific for me to witness, and he was just a shell of the man I knew and loved when he finally died in our home.
I like to think that most people die peacefully, but as I am all to aware of, not all do.
Hospice should be there to support you and your family at this time, and if they're not make sure you're calling their office to report, and change agencies if necessary.
They should also be offering to take your father to their hospice home as he nears his final week, where he will be able to be taken care of 24/7 until he dies. That is covered 100% under your father Medicare. The hospice homes are very beautiful and peaceful, and the care there is much better than any in home hospice care. I know that first hand sadly.
Please just make sure that you are leaving nothing left unsaid to your father, and just enjoy whatever time you have left with him.
God bless you.
It is so distressing to watch a beloved parent transform into an unrecognizable man who is clearly not going to live for a long time.
The hospice nurse and MD should be helping him to be as comfortable as possible. With liver failure, the patient very often slips into a coma gradually, and then passes soon after.
Sounds like you and your family have done a great job honoring his wishes thus far. You may need to reconsider the idea of hiring help at this stage...someone who is familiar with care of bedbound patients, and comfortable with hospice philosophy. Having a person come for a few hours once or twice a day is a big help and will also teach all of you how to keep him comfortable in bed. Hospice can send a home health aide, but that is usually only for an hour a couple of times a week. Nurse, HHA, and social worker will have suggestions on care agencies. This care is not covered by insurance. It does help families feel they are doing all they can in keeping a loved one clean and comfortable, which is important.
Hospice also supplies free bereavement support for a year after a death...and can help you find other resources, suggest good videos/books/support groups.
You are not alone...and all of your feelings are normal.....will be thinking of you and your dad.