Akathisia; help!
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Hang in there, Jose, I am thinking about you so much, be strong! I guess what angers me the most is, is it not enugh to have CC without all the extras that happen to some of our patients? This is for both of us:
You never know how strong you are until “strong” is the only choice you have!Tough times never last, tough people do!
Thank 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.
Hugs
JoseJose…to add to Percy’s comments, there comes a time when patients are not in the position to make decisions best for them. Therefore, as Percy mentioned, it is up to the next of kin to make decisions on their behalf.
This is a delicate situation, dear Jose, but it is one that needs to be addressed immediately. Your sister is suffering and she needs help.
And, as Lainy has mentioned, the reason for your sister to be tended to by qualified, medical, staff is to control her symptoms of the extreme anxiety she is experiencing. And, for that a hospital setting is appropriate.
My heart goes out to you, Jose. You are in a delicate position, but you have proven all along to be your sister’s best advocate and I am positive that you will do what is right for her.
Please, keep us posted. We are with you – all the way.
Hugs and love,
Marionhi,
I agree with Marion(100%) that it is time for hospital to get the appropriate medical treatment that she deserved.
One of the most important things in caregivers responsibility is to know when to seek professional help;when to use the knowledge you have to better the care that the patient received .
In your case, Haldol,Xanax, etc are good drugs for patients if the dose is right and titrated to the best optimal level to control symptoms. and this can only be done by medical professional in the hospital setting at this time for your sister’s current medical condition. They either can give the patient the same medicine(ie:by iv route) to increase the comfort for the patient.;or use other medications to help the patients and provide the comfort that your sister needs.
I am not a doctor, but in this case ,if I am her brother,for the skae of the patient; IT IS TIME to bring for hospital visit for proper medical care instead of helping her by her caregivers unless you are a doctor with the practical knowledge of this cancer.
God bless.Jose, what about using the approach that she is not going to Hospice to die but they can help her with her sleep problem and make her more comfortable and when she is better she can go back home. A lot of people go for Palliative care after surgery and other illnesses. A lot of them do go back home. You know I am wishing you the best.
Thank 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.
Jose, I am so very sorry to hear this. It is truly out of my realm but I hope someone can come up with some advise for you. Only one suggestion, is it possible to call in a Psychiatrist? Or will that not help. Also do you have Hospice facilities there? I am thinking she really needs to be in a more Palliative situation than at home. If she went somewhere like that it does not mean you are all giving up on her, it simply means you want the best for her!
I would like to add that she is taking: Alprazolam, Haloperidol and Mirtazapine in different dosages.
Hugs
I post a new topic now because I have realized that one of the main symptoms of my sister is akathisia. That is “a syndrome characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless” (wiki). She cannot sit down and is standing up or walking all the time. During night time is even worse. Drugs are not working at this stage. Nothing makes her calm. It’s a sort of engagement with life. She does not want to die and thinks that moving all the time is a way of engagement with life. Drugs are not helping. Any advice? This is dramatic. She did not sleep yesterday and she is moving like a zombie. Even a healthy person would be worn out after so many hours standing up. Nothing is working here.
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