June 3, 2012 at 9:09 am #61609magicParticipant
I think it is not a good idea to transport your sister that long distance in her current condition.It would be too hard on you all at this time.Your sister is gravely ill but she has some really distressing symptoms that need to be adressed in or out of a hospital setting.I think she needs an increased dose of Haloperidol or other antipsychotic medication and if she is not in hospital you need a greater medical presence at home,nurses need to BE there with you all,wherever she is she needs more professional supervision JanetJune 3, 2012 at 8:13 am #61608
Thank you for posting the link, Jose. I can see my sister’s symptoms in there, too. You are such an amazing advocate and supporter of your sister; you are doing so much. My heart is with you. Take care of yourself, too.
Julia xxJune 3, 2012 at 12:40 am #61607lainyParticipant
Jose, I just don’t know what else to tell you, I am at a loss.You see over here, if a family wants the patient in the hospital and the patient is not coherant a family member takes over. That is where your Sister needs to be. If, as the doctors say now she is nearing the end, all the more reason to make her as comfortable as can be. I am sorry for all of you, it has not been resolved up to now and has gone on entirely too long. It is a gross miscarriage to see a loved one go through such a tortured ending.June 3, 2012 at 12:07 am #61606
It might that she is suffering a hyperactive delirium. What this paper says seems to resembles very well her symtoms.June 2, 2012 at 11:45 pm #61605
I don’t know. This is impossible. We are doing the best, taking her home step by step, since she cannot stand a one-day journey, bringing a nurse with us to care her at home since she does not want to go to hospital… but she is behaving more aggresive. Several doctors have checked her and they tend to give alprazolam and things like that but simply this is not working. There is something terrible wrong here. Perhaps she needs a neurological exploration. This is so sad, so terrible sad. How can we treat this high amonia levels? what is the usual protocol for this? It seems that doctors tend to say “this is the end” and “there is nothing we can do but provide sedatives”.June 2, 2012 at 11:46 am #61604
Lots of love and MASSIVE hugs to you all xxxJune 2, 2012 at 11:10 am #61603
Thank you for this kind post. I think your situation was pretty similar to mine because my sister is asking to come back “home”. We left her home 600 kms away to stay close to the best caregiver, who is my elder sister. Now Carmen is obssesed to come back to her place in the middle of countryside. She feels that she is dying and she wants to come back home. The situation is worsening. Yesterday night was also dramatic. Doctors are coming all the way. I’ll keep you updated. Thank you very much for being so kind.
JoseJune 2, 2012 at 9:17 am #61602
I had a similar (although not the same) experience with my sister, Susan. She was in a very good Hospice but was begging to come home and threatening to book herself into a hotel if they wouldn’t let her come home. She kept crying “but you promised I could come home” and it tore my heart. She would have these distressing episodes in short bursts and then fall asleep again. At the time, I thought I was doing everything wrong and that she thought I was abandoning her, but the doctors said she was a physical danger to herself and others and said they would not permit her to be at home, even with Hospice Nurses, whilst she was so mobile.
I realise now it was not my sister, but the disease. The doctors called it hepatic encephalopathy – this may be the same as raised ammonia levels, but they didn’t use those words to me – as the liver toxins were affecting her brain.
When I called in the Hospice, I didn’t tell my sister I was doing it for her sake. I said I was calling them in for my sake. I said I was so edgy, I needed them to tell me she was okay and that I was overreacting, so that I could stop watching her like a hawk. She was happy with that, as she didn’t want me to be upset and really did want me to stop fussing around her, so she said yes. The Hospice then took over and allowed me to love and support her, without having to supervise and fight her myself.
My dear Jose, I do hope they can get your sister settled, so you can settle too.
Love JuliaJune 1, 2012 at 11:27 pm #61601
I agree with you but doctor told us that she cannot be hospitalized against her will and that is the problem. Amonia levels, yes, that is the word I misspelling before. Now its 1:30 am here and I am trying to make her sleep. We will try to take her to the hospital tomorrow but it has to be convincing her. I will keep you updated. Thanks for you answer.June 1, 2012 at 11:19 pm #61600lainyParticipant
Jose are they going to test her for Amonia levels? Sorry, but I have never ever heard of anything like this before. As bad as this is for all of you perhaps it is time for an intervention from people who can force her to go to the hospital. She should NOT be home as she is a danger to herself as well as to all of you. There comes a time in situations like this where it should not be up to her to call the shots. I would not allow someone in her condition (sadly) to be telling all of you what is going to be. She is way beyond your help and this could go on for quite a while. Sometimes we just have to make the decisions as much as we don’t want to.June 1, 2012 at 10:50 pm #6901
Those who have followed the story of my sister might remind that she’s been experienced sleeping difficulties, restlessness, agitation and akathisia. At the same time her mind was becoming confusing. Our main problem was the lack of sleeping because she could not literally sit still and this is devastating for her.
After one night with proper sleeping she had another akathisia-agitated night so she did not sleep. Then she suffered a terrible attack of paranoia and we feared for her life. She even called the police telling them that we had kidnapped her. She is totally paranoid now thinking that we just want to hospitalized her. We have experienced terrible scenes that I rather omit. Now she is resting at home totally opposed to hospitalization and, at the same time, thinking that everybody is conspiring against her. Certainly, this could me ammonia levels as you suggested in another post. Doctors come along and provided her with drugs to make her calm but she strongly rejected a hospital and nothing can be done if the patient refuses to be hospitalized. Have you her of paranoia attack of patients in this situation? It’s devastating, really really horrible. I am suffering so much for her.
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