1

(5 replies, posted in In Remembrance)

Just exactly one year ago my sister Carmen passed away after losing her battle against CC. I wanted to remember her also in this forum where I always found support from so nice people. I lighted a candle for her soul and I joined my prayers to all of you in the hope that you get over this illness. My best wishes for all if you.
Hugs,
Jose

2

(19 replies, posted in General Discussion)

I just wanted to thank everyone here, all this lovely people that have helped me during this battle, bringing me hope and kind words, giving me information and support everytime I needed. I would like to thank specially the moderators always ready for reply my posts and help me with any question. I think there are many good people here and I'd like to support this community as well. I would like to write a post with some conclusions in the future, after a time for getting over this terrible tragedy. I think the only consolation for me is that, certainly, she is not suffering. We have lost her and we miss her a lot but I am keeping her in my heart for ever. Thank again my dear friends you are doing a great job here.

Hugs
Jose

3

(19 replies, posted in General Discussion)

I cant stop crying. Thank you all for these words.

4

(19 replies, posted in General Discussion)

SENSITIVE

My sister passed away on June 13, at 13.13. She was totally unconscious and, according to doctors she did not suffer. Most of us were holding her hands around her in the hospital, giving her love and sweet words.

5

(19 replies, posted in General Discussion)

She loved my dad so much and perhaps for that reason she passed away in the same month of June, 13 years later. She protected me since childhood, carrying my little body despite the fact that I was almost as heavy as she was at that age; as a teenager she used to take me with her on  her first dates despite complaints from her boyfriends; She  always worried  about us all and  spent time sorting out everybody's problems;  breakups, divorce, pain or illness. Always caring and full of love. She  loved her family so much, every brother and sister, with this passion and humour that she always had. She was strong and generous, always ready to give everything to us. She loved life so much and that is why she was horrified at the thought of dying so young from this horrible illness  and leaving behind her only-child, aged  15.  The thought of  dying and the panic it created was unbearable and she went through this hell for six months… she wanted to be rescued but we couldn’t do it. She needed help and we couldn’t help her.

During her time on Earth she was an angel to us all and if there is life after death, I have no doubt that she is now a true angel.
With love to my sister from her heartbroken and inconsolable brother

xxxx
Jose

6

(55 replies, posted in General Discussion)

thank you. Im crying

7

(55 replies, posted in General Discussion)

She recives now  midezolem iv 100 ml/h. Unconcious.

8

(55 replies, posted in General Discussion)

Sensitive

We have had many doctors so far. Now we are in a small clinic for palliative care in the North of Spain. I am flying tomorrow so I will assess the situation. I think she is taking haloperidol and other drugs that I mentionted before, IV.

The point here, the terrible truth here is that tumors have not grown beyond the limits of the last CAT. Comparing CAT of last two weeks and CAT that we had before there is no progress of tumors. Neither there are track of encephalopaties, etc. However her lungs are suffering. She has pleural effusion. We suspect that her neurological problems, anxiety, suffering and hypoxia and even her pleural effusion are the result of the cocktail of drugs that she has been taken during these six months. We suspect that is not cancer which is killing her but the horrible palliative treatment.

Hugs
Jose

9

(55 replies, posted in General Discussion)

Yes, all of them. And palliative doctors insisted to provide high dosage no matter what we say, no matter what MC wants. Their role is clear: kill the patient.

10

(55 replies, posted in General Discussion)

We have checked ammonia levels in Carmen and these are only slightly over the normal. There is not encephalopaties and her brain is cleaned of tumors. Therefore we believe that the high dosages of anti-anxiety medication are killing her, are destroying her and producing opposite results. My sister insisted yesterday to stand up despite the high levels of morphine, diazepam, etc in blood. I think everything is doing wrongly here. We agree with a painless treatment but we think the anxiety treatment is misslead.

My brother in law now thinks that their anti-cancer treatment (aside from chemo) is the cause for this situation. This cocktail of drugs would kill even the most healthy person.

11

(55 replies, posted in General Discussion)

SENSITIVE

Thanks to everybody. I feel strange, uneasy, guilty, devastated, etc. And she cries. She cries. She knows and she is scared. It's horrible.

12

(55 replies, posted in General Discussion)

Sensitive

I don't know if they have checked ammonia levels. I have to ask. I will pass this information. She had a severe anguish attack yesterday. Doctor said that there is not a proper treatment to prevent anguish for death. How can a person accepts his own death?. This severe attack of agitation and aguish makes doctors to provide a higher dosage of sedative to her so she finally fell slept  deeply sleeping. We fear that this was a sort of involuntary euthanasia (her will is to live at all cost) and we asked doctors to reduce this dosage. Fortunately she woke up, went to toilet, etc. but I am afraid she went through a stage of semi unconsciousness and her breath, during sleeping was really really worrying, like stopping sleeping and then a sudden breath out. OMG. This is horrible. It looks like she is approaching to the end and I am abroad now. I am arriving on Sunday night.

13

(55 replies, posted in General Discussion)

Cherbourg wrote:

Jose,

Diazapam was the drug my mother couldn't handle.  Please ask if by chance there is something else.

Mom was seeing things, insisting my sister had been in a horrible car accident and was totally unable to sleep or be calm.  I finally had to throw a fit, demand a pharmacist, the heart doctor, and the cancer specialists sit down and talk to our family and each other.  I pointed out the problems started with the drug.  I'm in the medical field so I had no problem throwing my fit.  They changed her meds and it was amazing to see her return back to herself.

It's worth a shot.

Pam

Pam, could you please tell me which drug did she take instead of Diapezam?
Thank you to everybody that is supporting me and to all these kind words
Hugs
Jose

14

(55 replies, posted in General Discussion)

Sensitive

Thank you to everyone who is supporting me. Doctors mentioned this amonia levels but I ignore what is the procedure to check it out and how to treat it. They insist to provide IV diazepam and alprazolam and the result is that she can barely talk and she cannot sleep during nights keeping her agitation and akathisia. That is: doctors insist with a line of treatment that is not working with her ignoring the real conditions of the patient and her confort. She is in pain, despite of whatever dosage of morphine, she is crying and full of angusih despite alprazolam and all these useless drugs, she cannot sleep despite diapezam. It seems that they have learnt an ABC of treatment and they apply these standards to everyone.

This is hell for her. There is no peace, there is pain, anguish, fear, crying and horror. She confuses my sister with another sister, her daugther with another one. With a high dosage of IV diapzepam she sleeps for 30 minutes and awakes. Really really bad doctors, unable to pay attention to her neurological problems and provide a proper treatment.

Besides, life expectancy differs in a incredible wide range. Doctor A says months, doctor B says from 4 days to 15.
Hugs
Jose

15

(55 replies, posted in General Discussion)

Sensitive

She is in a hospice now. Suffering. She only sleeps for half an hour in the nights and get good sleep in the mornings. During night she confuses my sister with another sister. This is horrible.

16

(55 replies, posted in General Discussion)

Thank you Julia. I understand everything. I know there are no rules and the issue of "sensitive" is logic (or logical?). Things are getting really really bad. Now the question is hospice or home?

xx
Jose

17

(55 replies, posted in General Discussion)

Gavin wrote:

Jose,

Julia and others may put the word "sensitive" in front of a post or thread that they reply to or start for the simple reason that they feel that it contains sensitive information. This could be information of a sensitive nature that some people may not wish to read or hear about, such as details about the passing of a loved one, what they went through and information that some people may not want to know about. By putting "Sensitive" in the thread/post header, then the reader has the choice whether or not they want to read the post knowing that it contains sensitive information that may offend or hurt them by reading it. Some people want to know certain information or read about experiences and some people don't want to. By putting Sensitive in posts or threads then the reader can make the choice whether he/she wants to read that post/thread or not. I hope that helps.

My best wishes to you,

Gavin

I understand. I thought about this issue before when I was writing about this sensitive matter of end of life. When I read it, this comes to my mind and I just want to confirm it. I did not cumply this rule before since I ignored it but I will consider it now.
All the best
Jose

18

(55 replies, posted in General Discussion)

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?

19

(55 replies, posted in General Discussion)

Thank you. Was it just few days before the end?
Jose

20

(55 replies, posted in General Discussion)

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.

21

(55 replies, posted in General Discussion)

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?

22

(55 replies, posted in General Discussion)

It might that she is suffering a hyperactive delirium. What this paper says seems to resembles very well her symtoms.

http://annonc.oxfordjournals.org/conten … 9.full.pdf

23

(55 replies, posted in General Discussion)

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".

24

(55 replies, posted in General Discussion)

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
Jose

25

(55 replies, posted in General Discussion)

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.