Most readers know Robert is my little brother who, at 46 years old, has lived with uncontrolled seizures his entire life. He is physically and cognitively disabled and seems to lose a little bit more of something all the time.
Everyone also knows he’s a card shark and delights in beating me at his favorite card game, Kings Corners. If that ever changes, I know we’ve got serious problems.It’s been extremely difficult for me to reconcile the Robert that I know now with the Robert I remember as a child.
Robert started having seizures when he was five or six. He recalls the experience as either being able to watch cartoons in his head or seeing the colors “red, blue and green.” Either I have a terrible memory or I’m an inattentive big sister but what is so remarkable about Robert’s childhood is that he was so normal. Sure, he struggled in school. He was even held back in either 4th or 5th grade because of absences. He had seizures but he ran around like any other young boy. He got into mischief and was “a handful” as we parents like to say about high energy kids. Robert was diagnosed as hyperactive and was put on Ritalin for a while. I don’t really remember that helping. Having a brother with epilepsy didn’t seem all that unusual to me. He was kind of a pest but isn’t that the job of the little brother?
Robert tried a variety of anti-seizure medications. Tegretol, Phenobarbitol, Dilantin – loads more. The side effects were brutal when he was a teenager. Rob would spend hours in the darkened closet of his room, refusing to come out. Mom had a tough time handling him and he lived with our dad for a while once our parents divorced. Rob was aggressive and surly and depressed. He threw a punch at our mother at one point and was aggressive toward me as well. I thought I knew everything about this period until we were at his recent neuropsychology appointment. Rob told the doctor he tried to kill himself when he was ten years old.
I’ve never heard this story before and the first time I learn of it is sitting next to him jotting down notes during his appointment. All through the appointment the doctors would look at me to clarify dates or events and when Rob started telling this story I was speechless and just blankly stared at the doctors.
Robert said that at the time, he wanted to kill himself and so got a kitchen knife and was going to cut his wrists. He said our brother “calmed him down” so nothing happened and says he was fine after that.
After talking with Other Brother to confirm this story, Robert was wrong about a few details (it happened during his troubled teen years and it happened at a party he was attending). I don’t know what got him out of this depression (I’m the inattentive big sister, remember?). Maybe it was another change in medication. Maybe he snapped out of it after his drowning incident when God spoke to him and told him He wasn’t done with him.
By this time, I was out of the house and saw Rob at family gatherings, called him to say hi but mom and dad were overseeing his care (mainly dad) and I was pretty far removed from it. Rob still appeared “normal” (normal in my house included depression so the only thing out of the ordinary were the seizures). He wasn’t wearing a helmet at this point although he definitely should have been. In his early twenties, Robert managed to marry a girl who turned out to be a drug addict. This girl stole what she could from Rob when they returned from their Hawaii honeymoon (paid for by our dad) and left him. The marriage was annulled, I believe, and our dad was told to keep better watch over him.
Shortly after that experience, Robert met Judy. She was several years older than him (she actually had daughters Robert’s age) but she had epilepsy and they shared a bond. They were together for close to twenty years and probably would have still been together if Robert hadn’t declined so much that I needed to step in to manage his care. Within those years, Robert had two brain surgeries, was in a clinical study for the Deep Brain Stimulator and Robert’s memory declined terribly. Physically, he and Judy walked or took the bus everywhere but around the time I intervened, he was starting to fall a lot more than usual (by this time, he had long been wearing a helmet).
What finally got my attention (and that of Other Brother) is when our dad brought Robert and Judy for Thanksgiving Dinner in 2008. Robert had a black eye and after much investigation, we figured out that Robert and Judy had invited a homeless woman to live with them and while Robert was tending to Judy during one of her seizures, this woman punched Robert. Shortly after this incident (oh, we involved the police and tried to remove this woman from their home but, in the end, it took Other Brother paying her off to get her to get out of Robert’s home), Robert started having recurring infections and his motor and cognitive functions were declining. Since then, he lived in a Skilled Nursing Facility for a short while to get rid of the infection and then lived in an Assisted Living Facility and now lives at a Board and Care home and attends a wonderful Day Program.
Four or five seizures a week is still pretty typical. His seizure characteristics changed from Tonic Clonic while in high school to Complex Partial Seizures now. He still has the occasional fall and some involuntary twitching or tugging at clothes, but no convulsions. Robert wears a helmet at all times and uses a walker to get around. His balance is terribly unsteady and he makes some pretty poor safety choices (maybe because the field of vision on his right side is significantly compromised). He can’t usually remember what he had for lunch but he’ll tell you about his seizures as a young boy.
Robert has a very positive attitude and educates people about epilepsy every chance he gets. He can’t communicate as well as he might like so I consider myself his “PR person” and am working on his behalf to spread awareness about epilepsy. Robert is very committed to his faith and never ceases to amaze me with his nightly prayer for his seizures to stop. Robert’s sense of humor keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).
When people tell me what a wonderful sister I am for taking care of Robert, I cringe a little because I know how inattentive I was for so many years. I take care of him now but, please, I’ll have to pass on that Sister of the Year award (and if there isn’t such a thing, there should be!). I’m happy to help Robert and it makes me happy to know he is content to work on his word search puzzles or beat me at a game of cards.
That is our normal now. 
19 comments:
I think what you call "inattentiveness" was normal, Trish. It was an attempt to bring normalcy into your life and you have nothing - nothing! - to cringe over. If we all had a sibling like you, the world would be so much better. You certainly get my personal Sister Of The Year Award.
Hi Trish:
I had this nice response and something happened and it didn't post :(.
What struck me was how is your "inattentiveness" any different than mine with Nicole. I saw issues and I brought them up but they were brushed aside and I didn't pursue it.
Robert sounds like such a nice man. I admire his faith in God. I pray every night that God will heal Nicole. I have to believe and have faith that this can be done.
Leslie is right... not many siblings would do what you do. You have no obligation (other than to yourself) to do this.
I also agree that you should have the sister of the year award.
Hugs:)
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
"If you don't like something change it, if you can't change it, change the way you think about it."
Jane, Thank you so much. It's funny how when I write about Robert, I learn something about me too. :-) You would like Robert -- he has very strong faith in spite of everything which is the part that amazes me. He really believes that one day he will be without seizures. I hope he's right. (Sorry about the original comment - that happens to me sometimes and so I've gotten in the habit of copying my reply before hitting submit. That way I don't have to recreate it.)
Thanks, Leslie. I just wanted all the cards on the table (so to speak! :-)) because I feel any sister would do what I do and don't want people to think I've done this his entire life. That's what I mean when I cringe because I don't want people thinking I'm 100% awesome (although, don't tell my hubby that). :-)
My older sister had issues all her life. As siblings we were never close and when she died 13 yrs ago, I used to feel guilty for not trying to reach out to her. But then I realized as kids, there wasn't anything I could have done. As adults we did have a relationship but we were living in different countries. She was also good at hiding things.
You are doing a great job with Robert. Many siblings would have just left him in the care home and gone on with their own lives. You go to appts with Robert and you fight to make sure he gets what he needs. You blog about your experiences, which can help other caregivers, like me. You work hard to bring awareness to epilepsy. So yes, you are a wonderful sister.
Trish...I smiled and had tears in my eyes, when I read this latest blog. It instantly brought to two memories of Jason's siblings to mind.
One day I was folding laundry and my second son, who was 17 at the time and who was born 3 weeks after Jason had his first seizure at 2&1/2, walked into the room with tears in his eyes. Greg was my "wild child" and rebelled pretty much every chance he got, so my first thought was what kind of trouble was he in now!!! He started crying and said he was so sorry for resenting and feeling embarrassed by Jason for so long. He had just come from looking out the kitchen window and watching Jason sitting on a swing in the back yard. He said Jason was just sitting there, head down and looked so lonely and sad. At that moment he realized just what life for Jason was like. He said he had been jealous of the attention Jason got from us and the time we spent with him on trips to Dr.,and he was embarrassed by Jason's horrible behavior at home and at school. But for some reason, it finally hit home seeing Jason on that swing, that his perception of Jason and how he felt towards his Dad and I for the attention that was required in caring for Jason, had changed and he wanted to apologize for thinking the things he had over the years. It was a turning point in his relationship with Jason, I think. Of course, he still was my wild child thru college, too, but he has now grown into a wonderful young adult, has a fantastic job as an Technical Specialist with an oil company, a great husband and Dad himself. A few weeks ago, when I told my kids to donate to my Project on Crowdrise in leiu of my Christmas gift, he and his family made a very generous donation. I called and Thanked him and said he really didn't have to donate that much. He told me, since he never got the chance to rent a Tux for Jason's wedding or buy baby gifts for Jason, it was the least he could do. He feels deep compassion for his brother and the fact that he has the kind of life he wishes Jason could have experienced still causes him some feelings of guilt, I think.
TBC...
Ryan, Jason's other brother who is 8 years younger than Jason, came home from college one weekend depressed, undecided on his future and just not sure where he wanted to be at this time in his life. Jason sat quietly listening to many conversations that weekend that Ryan had with me and his Dad. On the day, Ryan was leaving to go back to school, he went in to say Good Bye to Jason. Jason looked at him and said " Well, Ryan, you can pick Happy or Sad"..." You should pick Happy" Ryan was taken aback I think, that Jason had picked up on what this weekend had been about and he turned to me and told me that was the best advise he had gotten from anyone. He went back to college, packed his things, and moved to Missoula, MT. Something he had thought about doing, but wasn't sure if it was really the right thing to do. But he did. He went to work part time, went back to school full time and got his Doctorate Degree as a Pharmacist. He met his future wife there and he is now a great husband and father as well.
So, you see Trish, you led the life you were meant to when you were growing up with Robert, so that someday you could become the terrific caregiver to him you are now. When we can no longer care for Jason ourselves, I have no doubt that Jason's 2 brothers will oversee Jason's care with compassion and understanding the same as you are doing for Robert now at this time in your life.
No More Cringing, OK!
Linda
June, There is nothing you can do to help someone who hides things or who doesn't want help. Different countries? I don't see how you could have done anything for your sister under those circumstances so, please, don't beat yourself up. I know what a caring, loving mom you are to your boys. One of the best things about blogging is sharing stories with one another and I'm happy you've shared here too.
Linda, I so appreciate you sharing here too. Your boys (and I am talking about all three of them) sound like they've grown up to be pretty wonderful men. Your perspective on the childhood years really helps me. My mom died several years ago and although I know you're too young to be my mom's age, it's nice to get the mom perspective. It means more to me than you know and I appreciate you sharing it here.
Trish,
you definitely deserve the Sister of the Year Award!
I don't think you could have known everything about your brother even if you'd lived together all the time. There's so many things I missed about my siblings and sometimes I am even surprised about their perspective. My sister is three years older and my brother two years younger and especially during puberty, I didn't share my life with them -I had my own things to deal with and my sister tattle taled to my parents all the time..
My Mom lost her sister a few years ago who committed suicide. We were all very close, she was my godmother. Later, I found out it was her third attempt.
I left a man who is schizophrenic and suicidal. Was I responsible for him? Did I have the right to leave? If I had known back then that it was schizophrenia and if I had known what the right steps are, I would have gone with him to a doctor and supported him. Today, I know I did the right thing for the knowledge I had back then.
We can't be responsible for everyone all the time but we are responsible for ourselves and our own lives. And especially when you're a kid, you just can't be responsible for your siblings!
I know you do the things that seem right to you at the given time and now, you decided to take care of him. Back then, did you walk away from something where you knew you are doing a mean thing? For sure not, you did the things that were right back then. I can only imagine how you felt when you found out that he was thinking about suicide back then.
And don't you ever feel bad or guilty, you are doing as much as you can and I nominate you to the Sister Award 2011, place 1 (I am place 2 because I am an awesome sister, too, hahaha!!).
Much love to you and hugs,
Franziska
Franziska, I've said this before but I'll say it again: you do make me smile! I'm sure you're an awesome sister (we could tie for #1). :-) You are right that we can only do what we can with the tools we have at the time. It must have been very difficult for your family to lose your aunt to suicide. My mom tried suicide a few times, too, which maybe is why it surprised me to learn that Rob did and I didn't know about it. Anyway, I truly appreciate your support and your sharing your own stories. You're such a delight and I'm grateful to have you as a friend.
This is such a beautiful post, Trish. I think we tend to forget that people with disabilities have rich, complex stories that interweave with but are not solely about disability. Perhaps you were "inattentive" early on by some standards, but that, too, is part of being a normal sibling. And creating normalcy is a gift for a child with developmental challenges.
Many of us seem to have stories in our own lives about inattentiveness and the guilt we now carry. My sister did not have developmental problems but she had emotional troubles that got worse as she matured. When she died of a massive stroke at age 51, I learned (by seeing her home, finding her diaries, and just surveying the chaos of her life) how many struggles there were and how deep they ran. I felt very guilty for not having probed more, for having avoided some of what was unpleasant about her life, for not working harder to reach out to her.
Your caring now and the life you are helping Robert have come at exactly the time Robert needs you the most. How wonderful you have the resources on all levels to be there for him.
Judy Stone-Goldman
The Reflective Writer
http://www.thereflectivewriter.com
Personal-Professional Balance Through Writing
Hi Trish--I'm so grateful you share both Robert's story and yours. As Maya Angelou says, when we know better, we do better. And, that's what you did. I think you and Robert both found each other as adults when you really needed each other. The timing, I believe, was really quite perfect. :)
Denise, What a wonderful quote to share. Maya Angelou has such wisdom! Thanks for hosting the Progressive Blog Party this week. It was lots of fun and I look forward to it again next year.
Judy, I'm really honored that so many people have shared their own stories about siblings here. With your sister, you couldn't know she needed help unless she had reached out. Even then, we have no way of knowing just how much help is needed (or wanted). You've written some beautiful posts about your sister and your love of her is evident. You have nothing to feel guilty over. Take care.
Wow that is a fascinating story. What a life. Regardless of how you feel about not being there before, you're there now and that's what matters. You'd get that award!
Trish, Thanks for sharing Robert's story with us. I'm grateful for being able to learn more about his struggles with epilepsy. You have fostered a wonderful environment for people to share their stories too.
Sherryl, I appreciate you following and am pleased you've learned more about epilepsy & Robert (I have too, to be quite honest!). I love when people share here and hope that continues. Everyone has a story to tell.
Dennis, Thanks for the award! :-) Let's just concentrate on the now (even if I have to remind myself of that every now and then).
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