I know that this sounds like a ridiculous inane question. Like "really"?
You have no idea what to do ...?
But it really is so much more perplexing than it sounds.
Whatever you do.... do not be me.
I was in denial and completely unprepared emotionally and physically and financially. I had a terrible team of doctors and health care people taking care of my husband. They did not answer my questions even tho I kept pushing and then COVID19 hit.
I say COVID killed my husband because in a very real sense it is true. More accurately the staff at hospitals and facilities were callous and lazy mostly and with COVID visiting restrictions I did not know what they were subjecting my husband to until it was too late. The hospice people that evaluated him prior to placing him in hospice care had to tell me because I could not see.
My husband died October 27th 2020. He had cirrhosis and the excessive ammonia in his brain left him with permanent damage after being in 2 ammonia induced severe encephalopathy comas.
The doctors who he went to during his battle with liver disease could have been forth coming about what to expect in end stages....but they were not.
I learned as we went and always had to feel like I could have done so much better by this man I loved so dearly. the man who loved me and always put my needs before his. So many things they could have explained would have helped and info often was given once it was too late to be helpful.
I am still shocked and appalled at the lack of education health care people have about encephalopathy dementia. They showed no patience or empathy for him or me. They blatantly mistreated him and gave him subpar care because he was loud and yelled alot and argued ,was difficult and mean to the staff mostly because they were mean to him. talked down to him and were anything but compassionate and reassuring.
My biggest mistake - and mind you I made this mistake because the one time they offered real advice it was done in such a way as to not engender any trust or feeling that they truly had his best interest at heart.
He had lapsed into a coma after being taken to the hospital, Even with COVID I was able to see him. They allowed me to come up after I demanded to see him since they were outright badgering me to sign a DNR and pull life support.
They pulled a chair up by the bed ... and then stood there. They would not leave me alone with my own husband for 2 minutes. It made me very angry that they could not give us a little space and a little privacy. So unfeeling and rude. Then they had promised me I could sit with him up to an hour and once the doctor came by pestering me to sign a DNR once I refused they had this chaplain come up and she grabbed my arm and started trying to pull me down the hall Normally I would have knocked her out cold for putting her hands on me like that.
If they had only shown us 1 iota of consideration and respect I would have listened to them . I could have spared him much anguish and pain because their opinion would have held some meaning and retained some worth in my eyes. He was in the hospital 2 months almost at that point. He was a handful - calling 911 from his hospital bed in the room claiming they were holding him against his will. Refusing to cooperate with PT so he could walk again. Refusing much needed meds. Being blatantly abusive with the staff because he had dementia and brain damage. The very worst thing they did - beyond purposely starving him leaving him alone all day to just yell all alone. was to keep telling me that he was "confused". Dementia is not confusion Confusion is some disruption to your thought process about your perceived reality. No one took the time explain I could not see him they let him believe I had dumped him did not want to see him and was never going to bring him home I was so ill prepared . I have sad memories He deserved better. I do not deserve to feel guilty for not dealing w/him better.I should have signed the DNR