Twelve Lessons I’ve Learned from Being My Brother’s Guardian

After my parents died, I became my brother’s legal guardian. My brother is five years younger than me and has a dual diagnosis of intellectual disabilities and mental health issues. My mom died almost fourteen years ago, and the learning curve has been steep. In the beginning, I was a very reluctant guardian, merely going through the motions out of a sense of obligation. About a year into my role, an epiphany hit me. My brother and I were in this together until one of us died. I could continue with my crummy attitude, or I could step up to the plate and be the best sister and guardian I could be. I had so much to learn, big things and small things. Although far from an exhaustive list, here are some things I have learned from being my brother’s guardian for the last 14 years.

1. Life isn’t fair

I’ve spent too much time wondering why my brother’s life has to be so difficult. I’ve allowed myself to drift into the dangerous land of “What if” too many times. I will never be one of those people who say they wouldn’t change a thing about their loved one with special needs. I’d change things in an instant if it made my brother’s life easier, but wishing and wondering doesn’t help anyone. Reality isn’t always pretty, but it’s where I have to stay to be an advocate for my brother.

2. Family bathrooms

It might seem trivial if you don’t need one, but when you’re with someone with disabilities, you understand how critical the need is for family bathrooms. Bathrooms with adult-size changing tables are also scarce in Oklahoma. Don’t be alarmed if you see a woman lurking outside a men’s bathroom, occasionally opening the door to yell instructions about hand washing and zipping up; it’s just me checking on my brother.

3. Stranger’s opinions

I used to be embarrassed about my brother’s slightly strange appearance and erratic behaviors. One day, he was under the table picking up trash at a Braum’s restaurant (because picking up trash is one of his obsessive-compulsive behaviors) when I made the decision to let other people’s opinions go. Why is it anyone else’s business why my brother has one eye and wears two cowboy hats? He is who he is, and that is OK.

4. A sibling is different than a parent

As the years go by, I feel my role with my brother blurring the lines between mother and sister. However, I am also fully aware that I will never fully grasp what it’s like to be the mother of a child with multiple disabilities. Similarly, a parent will never completely understand what it’s like to be a sibling. Siblings feel the impact of a brother or sister’s disability more than most people realize. If you’re not aware of the term “glass child,” check out this TED talk.

5. Rules

I have different rules and boundaries than my parents had. When we’re together, I expect David to do what he’s capable of doing. He can get a drink of water, he can carry his bag, he can take out the trash, and he can have limits imposed on food and drinks. He feels good about himself for completing tasks independently, and I feel less resentful if I’m not waiting on him and cleaning up all his messes. I’m not blaming my mother. I understand she was operating with a mother’s love and an overdose of misplaced guilt. I inherited that unproductive penchant for guilt, but I temper it with the desire for my brother to have healthy limits at my house.

6. A small bar of soap

Yes, this is a thing I had to discover the hard way. My brother loves to take long hot baths and always asks for a bar of soap. The first time, I gave him a freshly unwrapped bar of Ivory, and he used the entire bar in one bath! He was one clean guy, and the bathroom smelled terrific! Now, I save those tiny hotel bars because no matter how big the bar is, he will use every last bit. This is one small example of the dozens of little things that seem insignificant, but they add up. I could probably list a dozen small lessons I’ve had to learn, most of them the hard way!

7. Most people are kind

There are people who still use the “R” word and give us strange looks, but most people are kind. Sometimes, this feels like a lonely journey, but I’m lucky I have friends who walk with me occasionally. People ask me about him, and some are willing to go to the trouble of sending him mail. The servers at his favorite restaurant greet him by name and ensure he feels special every time we eat there. The staff at his facility have transformed it into a real home. They enable me to be a sister and not a caregiver. I sincerely appreciate every kindness that comes our way.

8. Don’t borrow trouble

I worry about his future. As we age, my worries have increased. I know all that worrying isn’t helping, yet it somehow still creeps into my brain as an uninvited guest. I now understand my mother’s journal entries when she wrote about her fears of who would love David after she was gone. As we age, I worry about who will love him after I’m gone.

9. Realistic expectations

While I want my brother to do his best, it’s also important to remember his limitations. It may not be politically correct to admit that he has limitations, but that’s our reality. It would only lead to my frustration and my brother’s if I expected him to function at a level beyond his ability. I walk a fine line between being respectful of his abilities while also aware of his limitations.

A good example was his Christmas money. He insisted on having it in the pocket of his overalls. It went against my better judgment because David’s obsessive-compulsive disorder often manifests in him picking up trash and stuffing it in his pockets. Yes, he lost it. It would be wrong for me to get angry at him for a behavior he can’t control. I was angry at myself for not trusting my instincts. As it turned out, I found it in a pile of trash he emptied from his pockets.

10. Marry someone who is all in for better or worse

My husband knew he was getting a package deal when he married me, but he thought two daughters and three cats were the entire deal. My parents were healthy, and we never considered my brother might someday become our responsibility. Although my husband barely understands anything my brother says, he is a true partner. He has slept on miserable hospital couches to take care of my brother. He has clipped David’s toenails (which I don’t want to do!) and driven him back and forth to his home too many times to count. Steve has even developed a hobby of pushing my brother in a racing wheelchair in local races. He’s the answer to my question: “Who will love my brother after I die?” I have no doubt my husband will.

11. My mom was a rockstar

My mother was a strong advocate and caregiver for my brother. She had to figure things out in an era before the internet and when almost all doctors were male and didn’t listen to mothers. It wasn’t until I became my brother’s guardian and wrote a book about being a sibling that I appreciated my mother’s strength. I wish I could go back and give her the validation she so richly deserved.

12. I’m stronger than I thought

I didn’t want to be my brother’s guardian. I had distanced myself from my brother for many reasons, and we had a complicated relationship. The responsibility was too much. I dreaded every visit, and I often cried on the way home. I’ve come a long way since those early years. I won’t lie and tell you it’s all unicorns and rainbows, but my brother and I have forged a new, strong bond as siblings and also as friends.

David is not so different from anyone else. David has diagnoses of intellectual disabilities and mental illness, but those are just medical labels. He wants what most of us want. He wants to be heard, he wants to be accepted, and he wants to be loved. Sometimes, those are easy needs to fulfill. Other times, it stretches my limit, but I think I’ve become less selfish and stronger. That has to be a good thing.

As we celebrate my brother’s birthday this week, I reflect on our journey together. It’s been full of ups and downs, hard times and good times. I’ve learned a lot, but I don’t allow myself to forget there is still so much more to learn. When I get confident and think I know what I’m doing, fate has a way of stepping in and reminding me how fallible I am.

The most important lesson I’ve learned from being his guardian is that our life is better if we care about other people. Love, patience, kindness, and giving even when there’s no chance of reciprocity may sound a bit “Pollyanna,” but it’s what we’re on earth to do. David has taught me that. Happy 61^st birthday to my baby brother!