If you had a child who needed round-the-clock supervision and medical attention, what would you do? What if this was your brother and you might eventually be in charge of his well-being? Today, Katie shares the story of her brother Johnny, his epilepsy, and how her family has dealt with it.
Tell us a bit about yourself!
I’m a 28 year old financial underwriter currently living in St. Paul, I was raised in a small town “up north”. For fun I am either walking around Grand avenue, or driving up north to relax for the weekend. I am in the process of getting my MBA and have no idea what I will do with that.
Tell us about your brother Johnny.
Johnny is my 25 year old little brother. His legal name is John, but he prefers Johnny, and refers to me as “Sister.” He also requires my parents to call me “Sister”; it’s like living in a Berestain Bears book.
Cognitively, Johnny is about 4 years old. He loves Disney, Barney, and Sesame Street. Our house is full of old school VHS tapes, and we scour Ebay, Etsy, and Amazon for adult sized t-shirts of his favorite things.
For those of us who are unfamiliar with it, what is epilepsy?
Johnny’s seizures have always been Grand Mal. He has approximately 1-3 Grand Mal seizures every 10-15 days. Despite trying almost every medication on the market, there has never been a clear cause of his seizures, or a specific dose of medication that prevents a seizure.
Johnny had his first seizure before he even turned 1; the first few years of his life included many helicopters to Children’s Hospital in Minneapolis. I don’t remember the exact timing since I was 3 years old but I was amazed by the McDonalds in the basement of the hospital.
In addition to the epilepsy, Johnny has Crohns Disease which resulted in his colon being removed two years ago. As Johnny gets older he has become less mobile, so if we are taking him to Target, he sits in his wheelchair. If we are going out to dinner, he can usually walk.
Your brother requires round the clock care. Where does he live now and who handles his care?
Johnny is lucky enough to live with my parents, he goes to an adult day center (which we call “work”) twice a week, and someone comes to my parents’ house for a few hours once a week. Should my parents want to go out for dinner we have family friends who will watch Johnny for a few hours. If my parents plan to be gone for a weekend, a few of my aunts are able to help overnight.
Is there a family member with him 24/7? Or do you parents get help?
We are lucky to have amazing family and friends who are willing to care for Johnny when needed. There are some amazing women who babysat us when they were teenagers that continue to spend time with Johnny even though they are now mothers!
Has your family ever considered putting Johnny in a group home full-time?
Johnny loves being with family and family friends so at this point it doesn’t make sense to have him live somewhere else. He needs someone to prepare meals, rewind movies, administer medication, and assist in the bathroom. A good example of his care level is that he isn’t able to blow his nose on his own. If you hold the Kleenex for him then he will blow, but you have to realize that it needs blowing, he won’t ask you.
How does Johnny feel about living at home?
I assume he loves it! He doesn’t share feelings, other than us singing “if you’re happy and you know it” or us leading him in fake crying. If you remember the movie Charlotte’s Web, there’s a portion where Fern the main character cries, that will prompt us to fake cry and say “Fern is sad” but he has never said “I am sad”.
You and your family have talked about Johnny moving in with you when your parents are no longer able to care for him.
That is not a permanent decision at this point. There have been ebbs and flows of Johnny’s health. As a single person with a full time job I wouldn’t be able to manage his care alone. However should something happen to my parents, there aren’t other siblings to share the responsibility with.
Does this affect the way you think about your future – professionally, personally, financially?
Johnny has always shaped my life. I love Minnesota, but I especially cannot fathom living out of state, I like having the ability to visit over a weekend. I currently work a standard 8-5 schedule. I would love to have my own business someday, but haven’t found the right idea that would support myself.
Do the people in your life know that eventually Johnny will be moving in with you? How have they reacted to that?
Most people do not realize the amount of care required until they spend more than a few days with us. When I’ve been in serious relationships, the men I’ve dated understood that Johnny’s approval is most important. I currently live in a studio apartment, so I would definitely have to move to a handicap accessible apartment/house.
Do you ever worry about what your life will be like when Johnny moves in?
At this point I don’t worry too much. Thankfully both my parents are fairly healthy, so it isn’t an immediate concern. We take things as they come and find what works best for us. I have no memories of life before Johnny, so I am more worried of what a life without him would be like.
If we know anyone who has a family member with special needs, how can we best be helpful and supportive?
Unfortunately I have more experience with ‘what not to do.’ Saying “I don’t know how your parents do it” is not helpful. They do it every day, so somehow it gets done.
I’m not really interested in discussing medical marijuana or special surgeries. I trust Johnny’s health team to do the research and provide us with options. The most helpful and supportive action is just to ask “How is Johnny?” since we Facetime once a day I always have some update to share.
Thanks so much for sharing your family’s story, Katie. Do any of you have family members with special needs? Do you have any questions for her?