Adivice/Help for New Caregiver

[mayse]

My sister has been an epileptic since 1972. Her husband has terminal cancer and so I will be her primary care giver in a few months. She has been on Dilantin since she was diagnosed (1972) and her doctors say her brain is deteriorating due to the medication (shrinking).

I have read through posts and find symptoms i.e. her short term memory is all but gone. She has great difficulty walking as if her legs are very heavy. Her seizures have drastically increased over the last year or so. I need some advice; what to expect etc as I assume her care; what kind of help should I get her. Doctors are not sharing much as I am not a guardian but I will be soon and am moving her across the country and would like to get services/help now.

Any help would be appreciated.

May

 

[epileric]

Welcome mayse

First, how old is your sister & is there any reason she can't look out for herself? If she's had seizures for such a long time she might know exactly what needs to be done. Have you asked her what type of help she needs?

Once you are officially her guardian I would find out if the dilantin was prescribed by her GP or a neurologist. If it was the the GP I would ask for a referral to a neurologist so that a specialist can deal with the problems at hand.

I would also suggest asking whoever prescribed the dilantin to try new medications as this one is having a bad effect on your sister & not controlling the seizures as it should.

Also, I have to say that it is good the doctors aren't giving you any info. It shows they're responsible to the clients privacy.

 

[Endless]

Hi, May. Welcome to CWE!

I second what Eric said. It was all excellent advice. I'd add getting a power of attorney for your sister now, just in case. If you wait until it is needed it may be too late to get one. It will also allow her doctors to talk to you and give you information, even if she is not able to clearly give permission. For my mom, I put a copy of it in her medical file at each of her doctors' offices.

Eric's advice of seeing a neurologist and possibly changing her medication is important. There are many anti-seizure meds on the market now. Back in the 70's there were only a few. The newer drugs also tend to have fewer side effects.

Hang in there. Please let us know how you and your sister are doing.

 

[mayse]

Thank you for the suggestions. I will definitely get a power of attorney; I have one for her husband so that should not be an issue. She does see a neurologist. He is the one who told us her brain is deteriorating. In regards to taking care of herself, that is impossible. She is schizophrenic in addition to the epilpsey. She can take care of her day to day activities but needs someone to drive her to appointments as she is not allowed to drive, make important decisions, pay bills etc. She is 47 and I know a discussion was had at one time to change her medication; not sure why they chose not to.