Thanks for the additional info. Unless he needs full time nursing care and can be admitted to a NH, it seems you really have no choice but to bring him home. Set up all the help you can beforehand, though. When Hospice gets involved, it means there is nothing else that can be done for him and he will just be given palliative treatment; i.e., narcotic pain meds and maybe some anti-anxiety meds, plus anything else to make him more comfortable or his care easier (oxygen, diapers, etc.) The amount of time that hospice nurses spend with patients depends on the patient's medical status and the support system that is in place.
I don't know what type of insurance he has, but that will also play into what type of care he can have at home if Hospice is not involved. You mentioned Home Health Care. That usually consists of someone coming to the home several times a week to monitor vital signs and medication. They will also do things such as flushing or changing a catheter. Hospice also offers respite care, so that you would be able to get out of the house for a few hours and know that he is being cared for. The doctor will be the one to order either Hospice or Home Health.
If you possibly can make time to check both of these types of care out before making a decision, it should make it easier for you. I believe you need to have some type of home care in place, though.
Does your husband have a Living Will? Are you his Health Care Surrogate or do you have Power of Attorney?
Post Edited (hep93) : 5/28/2009 3:01:11 PM (GMT-6)
SLH, I'm so sorry about your husband's passing. Thank you for letting us know. And please do continue to post here when you feel like it, as your experience can be of great benefit to others, and his disease would not have been for nothing.
Since it was cryptogenic liver disease, I doubt anything could've been done if he had been diagnosed earlier, except perhaps with diet...which might have extended his life a bit, but I think the end would've been the same. Looking back and second-guessing ourselves is something we all do, but it really does no good. You did the best you could with the information you had at the time. We can just be grateful that he didn't suffer for months and months or even years.