Below is a copy of a recent email to my husband's neuroimmunology and his psychiatric doctor. My husband was diagnosed with an acquired Brain Injury as a result of Rasmussens Encephalitis in 2010. He was diagnosed with associated dementia in December 2018. Any comments or suggestions gratefully received.
"Today I am having a lot of trouble getting hubby to take his seizure medication. He has had nothing today. Even having (psychiatric nurse) trying to get him to take them didn't really work.
Unfortunately he doesn't really remember having seizures as long as he had or even those recently.
In his words "seizure medication is b******s. I don't need them".
Things when he is home have become more difficult. He has had another weeks respite last week but was mostly out of it on regular diazepam 2x2mg BD.
I suppose I need to ask if he comes off of all of his medication, seeing as we can't make him take it, can we see how he goes. Life becomes difficult the more agitated he becomes when being forced to take it. He has not had any more or less seizures since dropping quickly to 500mg. He does not understand it's pointless taking them again as soon as he's had a sz. And he gets frightened after a complex partial enough to want me to call Addenbrookes.
This is awful to have to be like this, for him and for me and especially my son (who hubby regularly wakes up while sleeping from a night shift).
Psychiatric doctor has indicated at last meeting that he should be on 4mg (2x2mg) diazepam BD.
I asked at his respite to give only 2mg BD. He had at least 2 falls while there, staff finding him on the floor, not a seizure as he was quite ok after. He has had 4 falls since being home the last 3 days. He is aching and bruised.
I don't know if it's the diazepam or the reduction in meds causing his feet/legs not to work.
He is more stimulated at home which I like, but having said that we have had to lock him in now. He wanders, not far but enough for strangers to brink him back. He is more awake and talks more being at home.
Ideally a stimulating Day service would be good but not had any luck so far.
Regards"
"Today I am having a lot of trouble getting hubby to take his seizure medication. He has had nothing today. Even having (psychiatric nurse) trying to get him to take them didn't really work.
Unfortunately he doesn't really remember having seizures as long as he had or even those recently.
In his words "seizure medication is b******s. I don't need them".
Things when he is home have become more difficult. He has had another weeks respite last week but was mostly out of it on regular diazepam 2x2mg BD.
I suppose I need to ask if he comes off of all of his medication, seeing as we can't make him take it, can we see how he goes. Life becomes difficult the more agitated he becomes when being forced to take it. He has not had any more or less seizures since dropping quickly to 500mg. He does not understand it's pointless taking them again as soon as he's had a sz. And he gets frightened after a complex partial enough to want me to call Addenbrookes.
This is awful to have to be like this, for him and for me and especially my son (who hubby regularly wakes up while sleeping from a night shift).
Psychiatric doctor has indicated at last meeting that he should be on 4mg (2x2mg) diazepam BD.
I asked at his respite to give only 2mg BD. He had at least 2 falls while there, staff finding him on the floor, not a seizure as he was quite ok after. He has had 4 falls since being home the last 3 days. He is aching and bruised.
I don't know if it's the diazepam or the reduction in meds causing his feet/legs not to work.
He is more stimulated at home which I like, but having said that we have had to lock him in now. He wanders, not far but enough for strangers to brink him back. He is more awake and talks more being at home.
Ideally a stimulating Day service would be good but not had any luck so far.
Regards"
