Looking for Support Networks for Caregivers

[Carlos]

Hello,

I am currently looking for support networks for caregivers of spouses with epilepsy in the Boston, MA area. I have already contacted the Epilepsy Foundation without much luck.

Just to give a bit of background about why I am looking for these networks:

I am the husband of a person with generalized epilepsy. My wife and I have been married for 11 years. Up until the summer of 2009, her seizures had been mostly under control. During that summer, the frequency of her seizures increase from 1 a year to 1 a week. Since then she has been under several antiepileptics and these testings finally ended this past summer 2011. She is now in monotherapy with Depakote. During these two years I have been so concentrated in working with her to ensure her recovery, that I did not realize that I have totally neglected myself. Now that the hard part has passed (knock on wood) I feel needing the support of other folks that are going through the same thing in order to gather some advice, information, etc. I also need to be able to accept the fact that something like what happened two years ago may happen again and learn how to deal with the uncertainty.

If you happen to know any information regarding network of caregivers, that meet in person, please let me know.

Thanks in advance,

Carlos

 

[valeriedl]

I know there are alot of people on this web site who are in the same situation as you and understand what you are going through. Everyone here will give you as much advice and support that we can.

As far as meeting with someone in person I hope that someone will beable to recomend someone.

 

[Nakamova]

Hi Carlos,

You might consider asking your wife's doctor (or at her hospital if she is treated at one). Often there are support groups affiliated with treatment centers, and/or social workers and therapists who can point you in the right direction.

This site http://old.epilepsyfoundation.org/local/massri/groups.cfm lists Parent and Family Support Networks (PFSNs) in the New England area. There aren't any right in Cambridge, but there are ones that meet in Melrose and Medfield.

 

[Carlos]

Hello Nakamova,

I took your advice and talked to my wife about this and she did mention of a social worker at the hospital we usually go to that may have some useful information about this support networks. I have contacted him and will wait for a positive response.

I also looked at the hospitals around the area here: MGH, B&W, etc and they all seem to have networks for support for the folks who have the condition but not too much for caregivers. I think I am going to try to start a support network myself.

Thanks again,

Carlos