Akathisia; help!
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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.
Jose….your sister is not some “experiment” with death and dying. I strongly urge you to involve a health care professional. I find the situation inhumane. Sorry for being so harsh with my comments.
Hugs,
MarionI 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.
Hugs
JoseJose, I may be way off base but I don’t believe your Sister can help what she is doing either which is why it is even more important that someone else just has to tell her this is the way it is going to be. Let me ask you, what do you think is the worst that would happen if she was forced to go to the hospital? What can happen that would be worse than all this. One can only imagine how her thoughts are tormenting her. Nothing else has worked which leads me to think “force” might. Again, I am not a doctor I just try to use common sense and reasoning. I hope a miracle happens and you all have an easier day and night.
Thank 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.
Hugs
JoseJose, simply put, someone in your family needs to step up right now and be the hero. From all that you write this is not going to get better until someone becomes the strongest advocate over all the others and makes some decisions. Write all you want, I know it is good to get it out and writing is good BUT nothing is going to change. Your Sister, as sick as she is, is is harming herself and everyone around her because, she can. Sorry but I think its time for the big intervention and to stop allowing her to to do this. Proponol is heavy duty stuff but I would seek out a Doctor quickly who knows a little more of what they are doing.
My 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.
Jose….There is no right way or wrong to come to terms with death. We have to understand that our loved one may never accept that he/she is going to die therefore, it is important to recognize that your sister has the right to face death in her own way. And, that dear Jose, is a process. It will take as long as it needs to; you can’t control that.
What is in your control though, is finding the appropriate help to guide and comfort everyone through this difficult time. If your sister is not able to deal with hospice, then this might be a good time for your family members to get in touch with the organization. You also will need support, as does everyone else in your family. Stay closely in touch with the treating physician and consider an alternate plan (such as taking her to a hospital) if her anxiety reaches the level experienced within the last few days.
Be prepared that things may change from moment to moment and remember that we are never guaranteed tomorrow.
I wish for strengths.
Hugs,
MarionThanks 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.
Hugs
JoseJose…..Thanks for taking the time to explain the situation. The point though is that your sister’s anxiety has to be controlled; may it be via palliative care or in a hospital setting. Given the fact that your sister is in the state she is in while in under the care of a palliative physician then I would say he/she is not accomplishing the goal and another medical professional has to be involved.
This “fire” needs to be put out before the next step can put into action therefore, all of you, who love your sister need to rally together and do what is right in this situation.
Hugs are heading your way,
Marion
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