Tuesday, November 27, 2012

What Epilepsy Means to Me: Carol and her sister, Martha

Carol Kreis has been on both ends of caregiving.  She cared for her mom and her sister, Martha.  She also needed some care herself when she suffered a stroke and had a litany of heart and lung problems the past couple of years (we’re on an upswing with her health, though!).

She’s also my delightful mother-in-law or, as I think of her, my “bonus” mom.

Carol has always had a special connection with Robert which I never fully appreciated until this past weekend.  At our Thanksgiving gathering, after we had polished off the mashed potatoes, stuffing and cranberries (and Robert was dreaming of Rocky Road Ice Cream), we relaxed, chatted and watched football.

(And some of us planned our Black Friday shopping.)

Because of her connection with Robert, I asked Carol if she would be interested in being interviewed about epilepsy. 

“You haven’t known anyone besides Robert with epilepsy, have you Carol?”

“Oh, no!  No, I haven’t.”  Pause.  “Well, except Martha.”

“Martha?  As in, your sister?”

From the expressions on people’s faces, I don’t think anyone in the room knew Martha had epilepsy.  I certainly didn’t remember knowing that about one of Carol’s sisters.  Hearing new stories and hanging out with family after a fantastic meal (if I do say so myself), are what I love about Thanksgiving. 

Well, that and those darn pies!

It was so wonderful hearing Carol talk about her sister because it was clear how much she loved her and how much she misses her.  I loved getting to know more about Martha and her experience with epilepsy.

Robert’s Sister:  When was Martha first diagnosed?  Tell us about the process of getting the diagnosis. 

Martha was first diagnosed about five or six years before she died, at about 55 years old.  She was having Petit Mal seizures and had a couple of those and I don’t think she was telling the doctor about it.  Then she had a car accident and it scared her to death because  the grandkids were in the car. They were blessed that no one was hurt but she kept saying “I could have killed them.”  She finally faced it and admitted she had a problem. It was hard to do because she knew it meant she was going to lose her license. 

Robert’s Sister:  How did you feel when Martha was first diagnosed with epilepsy?

I was just glad she finally had been diagnosed but felt so bad for her because she was a very independent person.  To have to lose her license was making her lose her independence. I was glad she was diagnosed, though, because then it helped everyone deal with it.

Robert’s Sister:  Did your family treat Martha differently after the diagnosis?  If so, how?   

Martha also had a lot of problems with diabetes and she wasn’t good about caring for herself as far as that went. Everyone was worried about the diabetes and then more because of the seizures. It was like a double whammy.  She wasn’t one to do what the doctor wanted her to do which made a lot of stress on the family. 

Robert’s Sister:  What treatments did Martha try?  What worked?  What didn’t work? 

Martha was on medication which helped decrease the number of seizures but they weren’t eliminated completely.  She never had the Grand Mal seizures but she had fewer seizures on the meds.  The family feared she would escalate into Grand Mal seizures, not being educated about epilepsy.  We thought it would steadily get worse until we talked to the doctor about it.

Robert’s Sister:  Do you think the medications affected how Martha felt?

She slept more but she always slept a lot anyway.  I don’t think it changed her very much.

Robert’s Sister:   How has epilepsy affected your life?

My main thing was if she had it, can someone else get it in the family?  The doctor assured us it wouldn’t run in families like I thought.

Robert’s Sister:  What is your favorite memory of Martha? 

There’s so many of them.  One of my favorites is when Martha and I dressed up as Mr. and Mrs. Santa Claus and no one knew we were doing it. We snuck out of a family gathering and changed and came in the back door.  Everyone in the family was surprised.  We still had little ones then and we had so much fun getting ready to do it which dragged out two weeks before Christmas. We were like little kids. She was Santa and I was Mrs. Claus. 

There are a lot of great memories from when we were kids.  Another great memory is when we went to Marine World and took a picture like we were riding on a whale and the whole day was so much fun! It was just me and Martha and it was such a nice, nice day.  

Robert’s Sister:  Did you ever wish Martha didn’t have epilepsy?

Sure.  It took so much away from her since she was so independent.  It did change her personality, though, because she became so much more dependent on other people.

Robert’s Sister:  What do you want people to know about epilepsy?

If you know someone who has it or even someone that you don’t know and they have a seizure, don’t be afraid of it.  Most people are afraid because they don’t understand it and you just have to realize that it’s just the brain doing a little jig for a minute. You just have to let it dance and know it’s not going to hurt you.  And nine times out of ten it won’t hurt the person having the seizure either.  Try to be as supportive as you can.  Don’t panic, just be compassionate.

Robert’s Sister:  Is there anything else you want to say?

I loved Martha a lot and having the epilepsy taught me to be more compassionate and more thankful.  I just wish one day epilepsy would be a thing of the past like Polio.   

Robert’s Sister:  Many thanks to Carol for answering my questions!  It’s obvious you loved Martha very much and took good care of her, no matter her diagnosis.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.


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