jmgrisolia
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Thank you Julia. She is in a hospital now, sleeping. As a matter of curiosity, could you tell me why do you write “sensitive” in the head of the post?
Thank you very much Pam. You are very kind. I just flew from Madrid. I live 4 hours flying from her place and I would like to assess the situation to know ho long do I have to see her again. Her problem is lack of sleeping because she does not want to lie down neither to sit down. It’s very odd. I think this is much more than agitation.
Pam wrote:Jose, My heart breaks that your sister is suffering through this ordeal. My dad had a lot of confusion/agitation toward the end from high ammonia levels. I know this decline is devestating to watch as a care giver. You are doing a wonderful job. I would make sure she is as comfortable as possible and give her medication around the clock. She is at a high risk of falling if she is able to get out of bed so watch her closely. I’m praying for strength for your family.Please Pam, could you tell me how long was this period of agitation before the end comes up? How many days?
It might that she is suffering a hyperactive delirium. What this paper says seems to resembles very well her symtoms.
http://annonc.oxfordjournals.org/content/15/suppl_4/iv199.full.pdf
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”.
Dear Julia,
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.
Hugs
JoseI 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.
Fortunately she slept very well yesterday; 10 hours non-stop. In the morning her skin looked much better, her eyes had more life, her mind was clearer, her swollen abdomen was smaller. When I left her, though, she was behaving again with this strange akathisia going to shops, going for a walk, spending energy, etc. We should find the cause for this akathisia. It might be as a result of the medication.
Thank you… another thing is: could you please explain what do you mean with “discontinued her salt intake”? If she did not take chemo, how did you control the growth of tumors?
Hugs
Jose
