Becoming an Advocate

ALAN
Thanks for coming in again, Cullen.

CULLEN
Of course.

ALAN
I want to ask you, now that it’s been a few years since Evan was injured, what was the hardest part, or something you found especially challenging when you knew you had to become Evan’s caregiver?

CULLEN
Wow, how do I choose? All of it was hard. But I guess the thing that surprised me, the thing I didn’t know was going to be as hard as it was… was becoming Evan’s advocate.

ALAN
Interesting. Now tell me about that experience.

CULLEN
Well, going into it, as soon as I found out my brother had been so badly injured, the first thing I thought of was how much, physically, I would have to do for him. Like helping him walk or cooking for him or whatever. But what I didn’t think about was how I was going to have to be Evan’s voice while he was sort of incapacitated. How I had to become the expert on Evan’s needs, understand new medical terminology so I could know his treatment plan better than anyone and ask the right questions. I had to weigh the impact of every procedure and make sure everything was being followed through. There are just so many moving pieces, so many different specialists and doctors and nurses and therapists, and I had to be able to communicate with all of them to make sure Evan was getting what he needed and when.

ALAN
Being an advocate is a huge responsibility, and one that a lot of people aren’t comfortable with. Were you ever uncomfortable speaking up for Evan, or was it just more being overwhelmed with the amount of time and energy and brainpower that it takes?

CULLEN
Oh, there were definitely uncomfortable moments. Like I said, with so many moving parts, there were times when communication between a doctor and nurse or between one specialist and another just wasn’t quite there. And they’re all professionals, all experts at their job, so it can be really uncomfortable when you feel like you’re telling them they’re doing it wrong or something. But it’s not that they didn’t know how to do their jobs. They just didn’t have all the same information that I did. And I’m not naturally a very confrontational guy, but when it comes to fighting for my brother to get the best care possible, of course I’m going to do it.

ALAN
Was it hard to be diplomatic in those situations?

CULLEN
Definitely. Obviously, because Evan is my brother, I had a different level of emotional investment in his well being than the healthcare team. So yeah, sometimes it was hard to keep my cool when I felt like something wasn’t right. In fact, to my utter shame and remorse, there was one time I completely lost it and made the nurses cry. And when you make the nurses cry, you make the doctor angry. I figured out after that, that diplomacy, being calm and respectful, is a much better approach. And diplomacy and asking a lot of questions. Instead of telling them how to do their jobs – because nobody likes that – asking questions to find out where the communication breakdown is or just to make sure everybody’s on the same page.

ALAN
Now that’s a great insight. Some people who have difficulty resolving some of those issues talk to a Patient Advocate or Ombudsman. Did you ever feel the need to pull someone else like that into the conversation?

CULLEN
I did after my outburst with the nurses. And hearing the Patient Advocate speak with the healthcare team, that was sort of my “aha” moment when I realized there was a better way to advocate for Evan, and that screaming at people helps nobody.

ALAN
That’s great. Thanks so much for sharing that.

CULLEN
Sure.