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Post by needhelp on Mar 2, 2014 22:34:16 GMT
As long as he takes his zifaxin and lactulose all is well. Sometimes when I have to be working HE sets in, but when I see that he's a little out of it, I learned to up his lactulose. I know that his diet has to be low salt and no red meat. Trying to get him to stay hydrated, though he does have swelling in his lags and ankles. It's a balancing act. Now, to get him in a transplant program. I'd be happy to hear any tips you have.
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Post by Deceived Wife on Mar 2, 2014 22:36:34 GMT
That's good news. So is he still pretty sharp? I'm glad you are elated. I remember that stage. It's a perfect stage to get ahead of what's to come and prevent some of what happens later if hepatic encephalopathy (HE) become a problem. If you like, I will share with you some of the things I wish I'd known along with possible solutions you may consider along with your own ideas to make it easier and more successful for both of you. I would like you to share, please. Your husband is further along than mine. Any guidance you can provide would be appreciated. thank you. |
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Post by Onomatopoeia on Mar 2, 2014 22:57:12 GMT
1. Don't take anything or any aspect of this disease personal.
2. Prepare. Plan ahead of the disease.
This means plan for the worse case in the event his HE gets out of control.
a. Get medical POA'S, Durable General POA's, and DNR's written and signed now.
b. Include a SPECIFIC set of instructions that allow the caregiver (a person you trust your life to) the authority to override the patient in the event the caregiver believes you need to visit the E.R. When HE is at its worse they can be obstinate and combative.
b1. If you arrive at the ER they only need one hour to check for HE and other electrolytes. If the doctor decides to keep the patient, you have saved yourself amd the patient from danger, possible permanent damaged brain, and unnecessary stress with your caregiver and numerous possible destruction that a patient can cause.
b2. In the event the caregiver turns out to be acting in their own best interest rather than the patient's then there should be a clause to remove them.
b3. Have back up caregivers or someone who can over see your matters and able to replace them.
The patient must feel comfortable and secure in their caregiver. Trust is paramount. But, trust is NOT enough. Police will honor your constitutional right to turn down medical care. They aren't trained to know if the patient has degrees of HE. Without having given this caregiver the right to trump the patient, the patient can really cause a lot of problems. Bankers don't want to hurt a man's pride and send them away when they don't seem their best.
You will be surprised how many people won't interrupt a questionable situation.
3. The caregiver needs to remember that if the patient is on disability that Adult Protective Services can be called in if people attempt to take advantage of the patient because they are considered a protected class and people who attempt to take advantage can be held criminally responsible. APS will assist with protective orders to keep parasites away from the caregiver.
4. Ask for palliative care as soon as you can qualify. They answer a lot of questions and are very well trained. They can be advocates in case the patient tries to victimize the caregiver. And vice versa. Caregivers often get the brunt of the despair and anger the patient feels.
Get into a support group asap. Your transplant team can point you in the right direction.
Another tip: I would take the medical POA with the extra clauses to the police department along with your patient while they are very alert and give them a copy. Ask them to update the officers or dispatch to be aware of medical emergency. If the patient would wear a bracelet with HE on it and name of medical POA with their entitlement on it.
The patient can go to sleep and fall into a coma over night.
Think Preemptively!!!!!
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Post by Onomatopoeia on Mar 7, 2014 23:59:26 GMT
I just Thought I'd accepted that Joe is going to die. But I don't think it really was real to me until two days ago. The hospice asked to call his estranged children. I gave the number, holding my breath, anticipating chaos and trouble. His daughter came to see him and was in shock at his condition. She must not have known how serious and desperate I was when I asked her for her help in caring for him last year. That plea ended in a fallout and angry mean words last year.
So two days ago she came to see him supervised by hospice and I was nervous. But when he didn't recognize her at first and confused the nurse for his ex wife's daughter, I fell apart. Reality set in. She's a strong smart young lady and jumped into action getting her siblings to see him. She's helping me with decisions I'm sad to make and scared to make.
I've cried and bawled all night. His status is healing for us but what a shame we have to hurt one another and only death brings us together. I'm ashamed I couldn't love those children while he was better and could appreciate the harmony. I was jealous they has a daddy who longed for them I suppose. I know I was protective when they blamed me for his decisions. But I think children usually always resent the dad's new wife in a broken family.
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Post by needhelp on Mar 8, 2014 2:33:56 GMT
I thought he was going to get a transplant in Hawaii? What happened?
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Post by Onomatopoeia on Mar 8, 2014 3:41:45 GMT
Hawaii team said they'd list him. Doctors here said he won't survive the surgery. Hawaii team hadn't met him. I've learned I needed to really stop pushing against all odds.
I will never get close to another person the rest of my life. I don't want to lose like this again. All that holds me together is knowing he will be in God's hands and I may see him again someday.
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Post by Onomatopoeia on Mar 12, 2014 23:32:40 GMT
A lot of his bad behavior, it turns out, was Ambien intoxication. He's been off it two days now. He's so much more sane.
He's on non-narcotic sleep aid and anti-anxiety meds.
I may have some respite since the tough love talks he's had to hear from everyone.
Rest is a good thing.
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Post by needhelp on Mar 13, 2014 21:51:34 GMT
If you can afford the trip to Hawaii, it might be worth finding out if they think he could survive a transplant. A second opinion might be worthwhile, when a life is at stake.
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Post by Onomatopoeia on Mar 14, 2014 20:01:32 GMT
I'm tired of the mixed opinions. Doctors say he wants to live like he's dying, then so be it. It's a constitutional right each of us has. If he doesn't want to get with the program, I'll have a life to live of my own to concern myself with. I respect the doctors now. Things are the way they are for a reason. He has teams of doctors. They all say he's made his decision. I'm not God.
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Post by Onomatopoeia on Mar 14, 2014 20:04:18 GMT
COMPLIANCE is an issue. I'm not working my butt off so he can keep a using substances.
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Post by needhelp on Mar 16, 2014 0:09:39 GMT
I couldn't let my brother go, no matter what. HE isn't his fault. I have to think for him if need be and I have. I'm not sure if he is totally aware of what I have to do for him, but he would do it for me.
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Post by Deceived Wife on Mar 16, 2014 13:16:50 GMT
I get that, my brothers would do anything for me and I for them. But my brother's always have my best interest at heart and they have always been there for me, no matter what. I cant's say the same for my husband. Quite frankly, had it been me on life support..... I suspect that he may have asked them to turn the machines off.
Another thing I need to take care of is making my 21 year old and my mother my POA's..... have it worded that they must be in agreement in the case of a disagreement my Mother trumps Daughter. Mother is in another country, Daughter is here...but she is just 21 and it's a big responsibility; but I can't have it that husband is the one to make decisions if I can't. You never know what could happen...shoot, I could have a car accident tomorrow and be in a coma. I can't trust him to do the right thing.
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Post by Onomatopoeia on Mar 16, 2014 19:40:34 GMT
Some things, you have to accept, aren't in your control. It's time for me to let go and Let God.
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Post by Onomatopoeia on Mar 16, 2014 20:16:52 GMT
I should also let y'all in on the recent changes. Right when I accepted he was at death's door, he ran out of Ambien. I reported to Doctor that he was taking 3 a day. Doctor put him on a non-narcotic sleep aid. I not only have my husband back, but, getting that close to death's door got his attention.
He hadn't remembered driving 6 hours to see his son. I think he realized he had a four month black out.
He is reading the Bible I just bought him. He asks about church. I never thought I'd see this tough West Texas rancher ever hit his knees. He has.
He has good blood results also. That Ambien was bad news for him. He is jokung, laughing, helping with chores, go get to bed and sleeping for the first time in months. No more tearing the house down, eating the kitchen each night, hiding or losing things. It was hell here for a while. He's sharper now on just lactose and has hardly no ammonia issues. He isn't even taking xifaxin. The Ambien was raising his ammonia and also causing him to be intoxicated in the drug.
He has some per meant brain damage from the ammonia and alcohol, but he's mostly functional.
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Post by Deceived Wife on Mar 17, 2014 9:21:10 GMT
That is great news, Michelle. But is this the calm before the storm? Or is it really being off the Ambien?
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