I wrote a week or so ago about my older brother. He has since been released from the Hospital they are recommending Skilled Nursing or Home Care but he is refusing. At a minimum we have tried to push for Palliative Care and again he refuses.
I worry about him as he live alone in a tiny camper and has fairly significant HE, and is at considerable risk of bleeding, has edema in his legs and not very mobile. My Mom is absolutely going crazy over this but he won’t talk with her, only me which in turn makes me the middle man and drives me bonkers.
I feel a tremendous amount of stress as I’m the only point of contact but he won’t listen to reason. I have accepted the likely outcome but the not knowing and not being able to care for him has added so much anxiety. I should also note I live many hours always so I can’t exactly check in on him.
This horrid disease and the multitude of symptoms has to be one of the worst ways to go. I unfortunately have done this before with my father but luckily he passed relatively peacefully and quickly. I just pray if my brother is to have the same outcome he too has a peaceful passing.
Thanks for the support and hope everyone has a healthier and positive 2022.
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Jag9380
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What a terribly difficult situation you are in, absolutely exhausting physically and emotionally. I am sure a lot of fellow forum users absolutely understand your situation.
You have done (and continue to do) everything you possibly can for your brother. It is so hard for loved ones to watch someone behave in the way he is behaving but at the end of the day he is an adult and makes his own decisions.
Do not beat yourself up about this and try and make sure that there is good support both for you and your mother for the days ahead.
I'm so sorry. My sister in law is in the same situation with my ex. She has had to make the choice to step back though as her brother was starting to get very abusive and even though it is probably down to HE, it doesn't make it any easier to deal with.Sending you love, it's an awful disease.
These are sad times as many people don't normally come across this situation in everyday life. I have been trying for some years now to get the effects of HE recognised more in medical circles. But most family doctors just don’t seem to want to bother, or in some cases just don’t understand the mental aspects of this condition.
The name of this condition is Hepatic Encephalopathy. The word “Hepatic” means the liver, or of the liver. Encephalopathy means, disease, damage, or malfunction of the brain. So, putting these two words together basically could read, “Brain damage caused by the liver”. This then makes the condition a liver problem.
What quite often happens is that the damage being done to the brain is often ignored. After all, this is now a neurological disorder. Treatment for HE normally involves reducing the number of toxic substances that the liver is no longer able to process. What isn’t normally recognised is the amount of damage that has already occurred to the brain.
If the HE is picked up earlier enough, then further damage can be prevented, and long term effects can be avoided. Once the damage has occurred, it may become permanent, However, the brain has a remarkable ability to rewire itself, so some of the damage may not appear too severe in the long term.
I have a friend, Charlie and Angie Hobson who live in North Wales, in this video, Charlie and Angie talk of their experiences with living with HE. Angie did tell me, once that although his HE condition is a lot better post-liver transplant, he’s still not the same person he once was. I personally can totally concur with this: youtu.be/LdWhPUIWt1I
What has to be remembered is that for the most part, Encephalopathy (i.e. the brain damage) isn’t properly dealt with (in my opinion) there are tests here in the UK that should be carried out to try and identify the amount of brain damage that has occurred. This test is known as The West Haven Score: who.int/hepatitis/publicati...
There is also another test that is used over in America and Europe (but not in the UK) and this is called, “The Animal Name Test”: journals.lww.com/ajg/Abstra...
This article is from the Medical Tribune. (It may appear in German, but if this page is opened using Google Chrome, then you can select translate into English which should appear in the top right of the page): medical-tribune.de/medizin-...
When HE becomes severe, and someone experiences an episode, the person may not be compos mentis enough to know what they are saying or doing. They are no longer thinking logically. To them, everything just appears normal, and it is everyone else that is wrong. We had a case on here a few years ago now, where a man with HE was having a severe variceal bleed. He was also suffering an HE episode at the time. He was refusing all medical treatment and refusing to go to a hospital. In his mind's eye, nothing was wrong. The ambulance crew left as they said there was nothing they could do. Sadly the man passed away that night.
There are a few procedures over here in the UK that are available but are seldom used. The first is a DoLS order (The Deprivation of Liberty Safeguards). The Deprivation of Liberty Safeguards is the procedure prescribed in law when it is necessary to deprive a person of their liberty a resident or patient who lacks the capacity to consent to their care and treatment to keep them safe from harm. A family doctor could make this order.
The other way is for a family member to be granted a power of attorney over a persons health and wellbeing. This means that had a family member been present when that man was refusing to go to the hospital, then they could have overruled his refusal and the ambulance crew would have taken their instruction from the family member and not the patient.
What I have been campaigning for is a greater understanding of HE as a mental condition as well as a liver one. What I’d like to see is a patient’s mental condition assessed using the West Haven Score, and if the patient was to score a 2 or a possible 3, then measures like the power of attorney, be considered. Also, all family doctors should be aware that they can make a DoLS order if they feel it is needed.
I dare say there must be a similar system available over in the States, where someone can take control of a person’s liberty if they prove a danger to themselves or others.
Sorry for the length of this reply, but I hope it’s been of some help.
His situation seems to be getting worse. He’s barely able to keep his eyes open and isn’t making a lot of sense over the phone. I’m very concern about his ability to take care of himself.
At what point do I intervene and try to force him into some type of care facility? And more importantly can I?
I spoke with a nurse about my concerns about my partner and she said that if at any stage I'm unable to care for him or he gets worse, I've to get him into hospital.
I'm so sorry to hear that. After your last post I had hoped he would accept some kind of support or home help. Obviously his HE is a big concern as he may accidentally put himself at risk without knowing.
For his safety and for your own stress levels you may need to intervene soon. Don't put pressure on yourself you will only raise your stress and anxiety.
I hope he is in a safer situation soon. I think he needs care 24/7
I’m so sorry to hear about your brother. I don’t know how things work in the US, but if this were happening to me in the UK and I couldn’t get to my brother to check on him, I think I’d ask his doctor (GP) if they could do a welfare check on him. I think the police will also do welfare checks if you think someone is at risk of harm. I’m sure he won’t thank you for it, but you’ve got to do what you think is best.
Well, it seems this disease will take another from me. Got brother to Hosptial but he’s in very bad shape. Essentially his Kidneys are now in acute failure and in septic shock. Trying to get him stabilized so we can move him to hospice. Not sure how long he has left but not long. I appreciate all the advice and support you have all shown.
I’m sorry to read this. It’s really important that you look after yourself. Leave the clinical staff do their stuff, they are amazing. Hospice care is also fantastic too. He’ll be in the best hands. Talk to them to understand what’s going on and see how well he can get. Then spend time with him. You must look after yourself at the moment too, eat well if you can, try to get some sleep and do something for yourself that you enjoy doing. I’ll be thinking of you. Take care.
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