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Post by Deceived Wife on Feb 17, 2014 19:03:12 GMT
It's been a weird week. Hubby had blood work done and I have no idea the reason why or the results; lately everything is top secret around here and I just do my best to ignore that. Last week, there was the incident where he was upset with the puppy for not providing an "explanation and apology" for her behavior. Last night, I didn't see him from beyond 3pm until this am ( he usually comes down to take his pm meds). This morning I found him in the kitchen making coffee and he had a blanket over his head. His voice sounded like that of some person I don't know. I left for work only to return to find him sitting in his chair in the bedroom; he claims to be feeling OK, but something is going on...I can feel it; however, he refused medical treatment or a trip to the ER for observation.
I'm just gonna have to wait this out and see if he gets so far gone he will be compliant and I can get him to the ER.
SSDD
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Post by Onomatopoeia on Feb 18, 2014 3:08:21 GMT
Wow. There are strange things with this Hepatic Encephalopathy. Does he he keep you up at night, lost in his mind, roaming about? Or does he keep calmly hibernating alone?
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Post by Deceived Wife on Feb 18, 2014 8:49:14 GMT
Wow. There are strange things with this Hepatic Encephalopathy. Does he he keep you up at night, lost in his mind, roaming about? Or does he keep calmly hibernating alone? He did keep me up at night, so I had to begin taking ambien; which helped a lot. I've since moved to the sofa where I no longer need the ambien and I am generally able to get a good nights sleep. During the day he does calmly hibernate alone in our bedroom in his favorite lounge chair, usually with a laptop.... sometimes a bible or some other religious reading material. Perhaps he is trying to figure out how to make it right with God for all the crappy things he has done to people during his life. |
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Post by Onomatopoeia on Feb 18, 2014 21:47:08 GMT
For him to impress upon you to be his caregiver, and hold you accountable to the quality of care giving you provide, he needs to allow you to be involved in his health care ANA he needs to decide if he ready to give up or not. It sounds to me like he is giving conflicting signals. If he is trying to get right with God, he needs to repent from his current hostility towards you and also allow you to help him. Sounds like he has gotten himself into a big old mess! He sounds quite destructive.
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moon head
New Member
aggressive hostile
Posts: 19 
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Post by moon head on Feb 19, 2014 22:39:11 GMT
I was the one in charge of Ron's health care - I did all the research - found the drug causing hallucinations and worked with the transplant pharmacist - until we found a safe mixture of drugs.
If you are going to be his caregiver - he must allow you to make choices for him.
I'm sorry I don't know - but are you two married and do you have his power of attorney?
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Post by Deceived Wife on Feb 20, 2014 11:19:30 GMT
We are married, but no, I do not have POA.
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Post by Deceived Wife on Feb 20, 2014 11:20:56 GMT
I too do all of the research. I had to get a crash course in ESLD & HE, real fast and frankly the Doctors were not much help in educating me.
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Post by Onomatopoeia on Feb 20, 2014 20:12:35 GMT
I just spoke to the transplant team. They said it was imperative and Required that patient and police respect caregivers judgment and comply with our attempts to get them the appropriate care they need. She is going g to send me the documents needed to assert my authority. She said if patient doesn't comply with caregiver, then team won't transplant.
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Post by Deceived Wife on Feb 21, 2014 3:04:50 GMT
I just spoke to the transplant team. They said it was imperative and Required that patient and police respect caregivers judgment and comply with our attempts to get them the appropriate care they need. She is going g to send me the documents needed to assert my authority. She said if patient doesn't comply with caregiver, then team won't transplant. Michelle, Wow!! That's the first I've heard of anything like this. I think the frankness on this forum is going to be quite informative to us caregivers. I can understand how a patient might not like to hear this information or have it be general knowledge. |
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Post by Onomatopoeia on Feb 21, 2014 22:01:32 GMT
I looked up end stage liver dise.ase with terminal. A lot of useful info. We got Joe started on hospice. Medicare will pay for hospice or palliative care AND still cover a transplant. So you can be listed while on hospice. Here's what hospice is doing for ME, as caregiver and for him as a patient. Accountability. They help hold him accountable. The word " Non-compliant" can be powerful and used in your favor. Once the patient is labeled Non-compliant they can be taken off the list. Does that scare you? If you enable your patient like I did, this is the medical community calling a duck a duck. This means you won't be guilted in taking tireless care of your terminal spouse or whomever in the face of them refusing to take medicine or cooperate. It is outrageously liberating to trust the medical community and let them do their job. Don't cover for your patient. Hospice will educate, relieve you to rest or get much needed errands done. They will report directly to the doctors and they will be An ADVOCATE for you when the police are inevitably called during hepatic encephalopathic episodes. It's the only way to get the uneducated and inexperienced police to help as they can leave you in danger with this person or when you leave for safety The patient
Can hurt themselves
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