jmgrisolia
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I think option B which is what we already have: a doctor coming every day, etc. She is terrified of hospitals. However I think a hospital is good at this stage, not because of hospice treatment but because she needs a neurological checking, paracentesis and better sedatives so she can have a good rest, at least for a couple of days. But its she who is against it, strongly. I am afraid it will be unavoidable to go shortly.
Doctor visites us every day in the morning, check her vital signals and monitores her treatment of medicines etc. She is checking if Carmen has a hypotiroides problem which, according to her, might explain this odd behaviour. She is awaiting analysis from blood test and things like that. Since tomorrow is bank holiday here, results will be on Monday and she is suggesting that my sister might be hospitalized on Monday. However, having said that I have to add that we are split into two groups. Palliative doctor, along with my elder sister and others think that the best for her is a hospice as soon as possible. But my sister, my bro in law, my brother and me think that we have to respect my sister desires of living as much as she can, no matter the cost so there is uncertainty about what to do next.
We are also in permanent contact with a team of doctors from another clinic, calling them etc. Palliative doctor considered that this akathisia problem is just psychological and just wanted her to take sedatives. We are following strictly her medication and advice so everything is under controlled.
Marions, this is fine. She is under control of a palliative doctor. This doctor wanted to hospitalized her but she was OK if my sister stays at home until Monday.
I mean that she would collapse and she could eventually die. It’s incredible: she keeps standing up. I am surprised. This might be a neurological pathology.
Yes, I know that she cannot make a decision. If she is forced to go to the hospital she would screem out of her mind, she would use all her energy, put on her knees, crying, etc. It would be very violent and they would need to use violence and strong sedatives. Unfortunately something similar happened before. As time passing and she is worsening her mind is more confused and her whims are growing and growing. This is dramatic and crazy to she her standing up and walking slowly all the way, after virtually 72 with no sleeping and in her stage. One curious note: for some reason she become relaxed when she water the unexisting plants of the terrace. I think the sound of water makes her feel calm. Also she talks to my dad, who died 12 years before in these occasions. There is, undobtedly, a therapeutic effect in the water.
We are hoping this night she sleeps. If she does not sleeps she will collapse totally.
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JoseThank you Lainy. Palliative doctor turned up and prescribed proponol along with other drugs already mentioned before. Doctor is advising to bring her to hospital-hospice so she takes the proper sedation and can at last have one night sleeping under the proper caring. The problem is that she is panic about the idea of entering in the hospital. We are going to try one night more with this proponol and other drugs. She is out of her mind, with cravings all the time, like a little kid but I do not support the idea stressed by the doctor that she is being spoiled and if she cannot sit is because she doesn’t want to be still. I think my sister is crying for help. I pay attention to everything she does and says. There is something here that is not working. We are hoping that she finally sleeps tonight and we’ll think what to do tomorrow but sleeping is the priority because she is about to collapse and I am fearing that something big might happen.
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JoseMy sister has a severe akathisia within a framework of general agitation but akathisia is very severe: she cannot be still. As a result she is putting her body to her limits. I am afraid the palliative doctor does not know how to deal with this. I have found that propranolol is the first line used for this problem.
Thanks again. I keep updating although I am not sure if this story is interested to the others but it helps me to organize my thoughts. After four hours of sleeping and despite so much drugs in her blood, she woke up and snaked from her room, again, like a zombie, left her house and walked five minutes to my elder sister house looking for someone in the house to talk to her, to satisfy her cravings (water, a candy, this or that), again unable to sit or lying down and again with weird thoughts. Now she is saying that she is not sick that she does not want to say the word “cancer” that in avoiding mentioning this word she will not have it. There have been tension and conflicts between us about the way to treat her. My sister is also moving from one to another, using some sort of compassion triggers, to satisfy her cravings which are usually an excuse to move (“I want to walk in the balcony”. “I want to go to toilet”…). Tension, conflicts and my sister out of her mind. Yes, indeed, we need a doctor. We’ll find the doctor during the morning but we are divided about what to do. It is incredible that she has energy to keep moving and talking and walking. Her agitation is absolute and her mind totally blurred.
Thanks again. Let me update you about this. Most of you advice me to talk to the physisian. We did talk with the palliative doctor and we explained to her about the akathisia. Firstly she did not know that such a thing exist. I believe that it’s a neurological problem might be the result of a combination of drugs along with her illness. Reported about her insomnia, the doctor prescribed Midazolam 7.5 mg. She was extremely exhausted after being the whole day standing up or walking and after a complete insomnia last night. So imagine something like 48 hours with sleep deprivation and standing up in her situation… she was confused, worn out, moving like a zombie and insisting to move and stand up no matter what we say. Midazolam did not work so, following doctor instructions, we insisted with half dosage. She had a deep talking to my brother in law. She directly asked if she was going to die. She had been denying this during the day. Crying and saying that she did not want to die. This time, half sleeping and totally devastated, she asked it calmly. My bro in law did not admit her real situation but did not deny totally. She does not need confirmation. She really feels it but she cannot accept it. I wonder how is possible to reach this acceptance stage. Then, they had a deep chat. He asked her to protect them (him and their little daughter)… after a while, after some sort of confusing questions she finally fall asleep (hopefully for many hours). Is this a process of fighting and acceptance? Perhaps, following the Kübler-Ross model. Perhaps. For all of us this is horrible but it’s nothing compared with her hell. Absolute hell. What to do next?. Since she is sleeping now, this is what I will do next. Thanks for your support that really helps.
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JoseThank you for your advices. Everything is complicated here. She lives in the north, in the middle of the countryside. When this happened, we first get a complete diagnosis in the main NHS hospital at the nearest city. Then we moved in one of the most reputed Spanish clinics, which is located 3 hours driving from her place. She started having chemo in that place and back to her home, etc. Then she decided to move into my elder sister who is like a second mom and the perfect caregiver. She developed a sort of dependence on her so we all moved near Madrid. There is a very reputed public hospital for liver cancer in Madrid so we went for treatment there but every doctor told us the same story: operation is impossible and they just provide the same standard chemo. Then, something magic happened: her swollen abdomen reduced dramatically, her strength improved, her appetite grew, her engagement in life as well (reading newspapers, watching TV, talking, etc) and also her mental fit. Everything, of course, within the seriousness of her illness. However, from certain point and without any reason everything worsened rapidly and dramatically: swollen abdomen grew up to the highest volume, confusion all the time, paranoid, agitation, extremely slim and doctors saying that this is the end. And worse: she has a feeling of being in a no-home place. She has switched from this-is-the-best-place-for-me (my elder sister’s home) to I-want-to-go-home. But going home means driving for 6 hours which is something beyond her resistance. Once in the north, in the middle of nowhere she will feel isolated again. Her husband does not know what to do to please her: renting her own place here, bringing her again to the north, etc.
We have palliative doctors visiting home and we are not against bringing her to a hospice. We will make a move shortly since she is having a new check tomorrow aiming to decide whether or not to take another chemo cycle.
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JoseThank you Lainy. Yes, indeed, there are hospices and we are willing to bring her the best in terms of painless, etc but she is against anything that remotedly sound like dying. She prefers remains at home but, certainly, she needs a particular treatment but we have not found who could help her in this specific symtom that I find so hard.
I would like to add that she is taking: Alprazolam, Haloperidol and Mirtazapine in different dosages.
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Yes, this has sense. I did not know an end life stage could bring such agitation. I remember my dad dying of cancer, as well but it was, altough horrible, somehow peaceful… Perhaps a priest might help but we are not in a hospital now but at home. We might find the way to find a priest. I don’t know, I feel also guilty for being unable to help her. I know this is part of the process and also there are so much tension here…
Lalupes wrote:Jose, there are very strong similarities between your sister’s behaviour and my sister’s. My sister is very much calmer now. I hope the professionals, whether medical or spiritual (or both) can ease your sister’s distress, too. I know how heart-wrenching it is to watch but not to be able to help.Julia XX
Thank you Julia. Could you please tell me how did you get over this problem? Was it through medication?
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