How I Helped My Son Through His Treatment-Resistant Depression Diagnosis
My name is Allison, and I’m a mother to five children, including two stepchildren. My son Austin is 21 years old, in the middle of my five kids, and lives with treatment-resistant depression (TRD). He loves to cook, garden and compost and is planning to go to chef school, once the coronavirus calms down. Austin’s always been a skilled learner, getting straight As throughout school. He even taught himself all about horticulture and how to cook. He’s just a curious kid and loves to learn about anything that he can get his hands on.
During Austin’s senior year of high school in 2017, we began noticing some changes in his behavior – he and his girlfriend just broke up and he was experiencing his first heartbreak. It was traumatic for him. He slept a lot – like 12-14 hours a day – his hygiene became less important and he didn’t have the same zest for school anymore. He was headed to the University of Kentucky in the fall on an academic scholarship – but suddenly there was a truancy officer at our door because he stopped going to school.
I have a background in psychology, so when things got worse, I started to notice some troubling red flags. He was angry a lot and would destroy his room. I quickly got in touch with a psychologist to help. But we live in a really rural area, so she was two hours away. I’d drive Austin back and forth, and she did help for a little bit. Fortunately, he started attending class again and was able to graduate from high school. For a small period of time, Austin seemed back to his old self. We hoped that the upcoming change of scenery at college would be helpful, especially since he would also be geographically closer to his therapist while in college.
Unfortunately, things got worse when Austin went to college. Austin knew something wasn’t right with himself too, but it was hard for him to verbalize exactly what it was. We tried to have those tough conversations about what was on his mind, but it was too hard for him to express his emotions. Sometimes anger would take over. We’d try to talk during his therapy sessions, and his therapist would serve as a mediator between the two of us. I was constantly making the four-hour drive back and forth between where we lived and where Austin was at school. I needed to be there for him, no matter what, but it was hard trying to balance Austin’s mental health needs, my job, and being there for my other children, too.
When we started talking about treatment options, one of the solutions was medication, both for depression and anxiety. And that worked for a little bit, but after a couple of months, the medication stopped working. So, we’d try a new combination, and he’d call me and tell me the thoughts were coming back. We’d try the same process again, over and over. We’d feel like we were making headway, then suddenly we’d be back at square one. His psychologist and psychiatrist team would work together to find the right balances, but there was just an endless back and forth between treatment. This back and forth lasted for approximately one and a half to two years before Austin was finally diagnosed with Treatment-Resistant Depression (TRD). It was difficult to understand how to proceed with his diagnosis. But as hard as it was for me to watch Austin struggle with his depressive symptoms, it was almost unbearable for him.
During this trial and error period leading up to his TRD diagnosis, Austin ended up having to drop out of college during his first semester, and he went to a really dark place as a result. I will never forget when his psychologist called me and said she was really worried about him, and not soon after that, he attempted suicide. I still get emotional thinking about it; no mother wants to get that phone call. Ever. He went into his first inpatient facility, and I’m really grateful for the treatment he got there. But that time just felt like a blur. It was no longer just about finding the right medication; it was about keeping Austin alive. We were all in survival mode, to the point where my other children felt neglected at times. Depression is tough, because whether it’s you living with it or a loved one, it demands all your time and attention just to try and manage the disease, often taking away from other people and activities. This was especially true for me as a working mother of five. My other children had life changing events of their own. My second eldest son, Ashton, wanted to come out to me during this time, but he knew that my focus was on Austin and held back from telling me that he was gay. My family and I just wanted Austin to feel better and make sure he knew we would always be there to support him no matter what. I know I have a lot of making up to do for the time I missed with my other kids, and I’m glad I have the ability to make up for that time now.
Things finally got better when Austin started on SPRAVATO® (esketamine) CIII nasal spray in 2019. After so many misses with other medications, we heard about this one, at the suggestion of a friend and did our own research about the medication before consulting with Austin’s psychiatrist, who recommended that Austin try the medication. At first, it was scary to try another new treatment, especially when so many hadn’t worked before. Everything about the process was new. Austin had to go to a facility to get it, which was also new and different from the typical trips we would make to the pharmacy to pick up his medication. Throughout the entire journey, we worked as a team of three — my husband, him, and me – making sure Austin felt motivated and supported to continue treatment and helping him research new treatment options when one didn’t work. If one of us didn’t agree on a course of treatment, it would not happen. But we agreed on SPRAVATO®, and I’m glad we did.
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Since Austin wasn’t allowed to drive or operate machinery until the day after treatment following a good night’s sleep, I drove Austin to and from his treatments initially. I waited while he received the treatment and his doctor monitored him for potential side effects including high blood pressure and dissociation (Please see below for a list of side effects of SPRAVATO®). I became more comfortable with the treatment process, and my parents started taking him since they lived in the same town that Austin was living in. After a few weeks, we started noticing small, positive changes. Austin would call me just to catch up. Then he’d share progress he was noticing, like getting up before noon. As time went on, he started expressing interests in activities again, like going out socially, which was a huge step for him. He even wanted to eventually go back and finish college. He started exercising, gardening and cooking again. He’s really at peace when he has his hands in the earth. That’s his meditation. That’s what really works for Austin as part of a holistic approach to treatment. He even has a full garden in the backyard! He’s grown kale, pumpkins, zucchini, squash — so many different vegetables. I think that this combined with the rest of his treatment plan is really what keeps him centered. I remember thinking, I am getting the old Austin back. It’s the best feeling in the world.
This didn’t happen overnight for us; it took a lot of persistence. I liken it to starting a new exercise routine. At first, you feel like you’re running through mud. It’s hard. Then one day, it feels like sand. After a while, it feels like pavement and before you know it, you’ve hit the ground running and suddenly there is light at the end of the tunnel.
People who are struggling with serious illnesses such as TRD sometimes aren’t able to advocate for themselves. My message to other caretakers to someone living with TRD is to be your loved one’s best advocate. If one thing doesn’t work, change something. Ask questions and don’t give up. It’s hard to see your loved ones struggling every day. Especially as a mother, the last thing you want to see is your child suffer, but over time, things can get better. And don’t forget that caretakers need to take care of themselves, too. For me, that means biking and having a solid support system. But whatever that means for you, just make sure you make the time to do it!
This story was shared with Austin’s permission.
Allison is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program, made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
If a Janssen treatment has made a difference in your life or the life of a loved one, we hope you will consider joining the SHARE Network.
Every story is unique. If you are an adult living with treatment-resistant depression, talk to your doctor to figure out a treatment plan that’s right for you.