conversation with the doctor

Hi All, I have been pondering on a recent phone conversation I had with my husband's GI on Sunday.  We really like him he is a straight shooter and I was surprised to get the call on a sunday afternoon.  My husband was discharged from the hospital four days earlier having been admitted with encephalopathy and elevated amonia level.  Reading between the lines I he was saying that I needed to think about how many times I wanted to put Joe through hospitalization.  He was not getting better and although he would always treat Joe it was not going to change the final outcome.   He asked me if I was committed to my husband staying at home, I told him yes and I think he was implying I might now want to go the hospital route and just let him drift off into a ammonia coma.  How the heck do you know what the right thing is??? There are still days my husband is mentally alert and fun to be with.  More days he is struggling, he also has Parkinsons which is getting worse so his life is relagated to trips to the bathroom, living room and the occasional doctor's appointment.  I am very conflicted about all of this, my husband has been tenaciously holding on to life, pretty much in denial about the situation so he is not very helpful in the conversation.  I only want to do the right thing.   

Anniemc, I think you need to do what you feel is best.  Perhaps you could speak to the doctor about referring your husband to Hospice.  However, if hubby is in denial about his condition, he may not want them in the house...if he understands who they are.  I do know they offer respite care, so you could get out once in awhile or even work a couple more hours.  If he is to remain at home until the end, you will certainly need their services.  Sometimes we also have to consider quality of life over quantity.  When your husband was fully present mentally, did he ever discuss this type of thing?

Hugs,

Connie

Dear Pam,  Thank you so much for your thoughts and caring. 

Well Hospice has been in and he is sleeping soundly, only time will tell what will happen next

Hi Pink Grandma,  Your phrase about the tough get going gave me a good chuckle, thanks!  It has been a morning of great memories and not a few tears.  My husband is failing and it looks like we are talking days,  he is sleeping for the most part and the medication I gave him yesterday (atavan) at hospice's recommendation has eliminated some earlier anxiety.  I have his favorite music playing, his beloved dog at his side, a favorite chair at his bedside for me to sit in and a plant full of fragrant basil in the window sill.  I want this to be a special time for both of us, if not for me, a very sad time.  What's next I do not know I am hopeful that the hospice folks can walk me through it, right now I am just doing what feels right.  Thanks again for the chuckle and the support.  Anne 

Hi Connie,  Not too intuitive... he has been unresponsive, not eating, voiding for the past two days.  All the professionals are telling this is the begining of the end and it may be but around 11:30 p.m. he opened his eyes asked if we had ham and cheese and indicated he wanted a sandwich.  He was oriented to place and communicative got up went to the bathroom with some assistance had half the sandwich and is now sleeping peacefully.  What a roller coaster ride this is I need to reach deep within me to just flow with this and to find a little humor in the craziness of the situation.  Before he went off to sleep he informed me that he was not going to die today. Anne

None of us is God and are able to predict when death will come, though Hospice is really good at knowing when the end is near.  Often patients will rally near the end--suddenly become alert and communicative--then go into a coma from which they never "come back."  ESLD is very much a roller coaster ride.  Be sure to talk to Hospice nurses about his behavior.  They can interpret it far better than I can, since they deal with death on a daily basis.  There may be a point when the patient needs to hear that it's okay to let go if he is tired of hanging on; that you will be fine.

Hugs,

Connie