Caregivers for the mentally ill don’t always choose that role. Spouses, especially, often fall into that category. The person they married may have been healthy and then, without warning, everything can change. Stress, trauma, grief, disappointment, and many other factors can result in the emergence of an underlying mental illness. Abruptly the healthy spouse may find themselves caring for their partner in ways they never anticipated, or at an age much younger than they expected. This happened to my husband and I, and it has been quite a journey.
Before diving into my story, I’d like to share some statistics. While critical and often unavoidable, caregiving comes at a significant cost. According to Caregiver.org, 52 million adults, or about 25% of the U.S. population, provide unpaid care to another adult who is disabled or ill. The average caregiver spends 20 hours per week providing care, though that number jumps to almost 40 hours per week if they live with that person. About 66% of the caregivers are women, and around half work full-time in addition to their caregiving responsibilities. Of the caregivers that work, 70% report work-related difficulties such as having to rearrange their schedule, reduce their hours, take unpaid leave, turn down a promotion, or even quit their jobs in order to provide care. It’s not easy to be a caregiver.
This is my caregiver story. It’s a love story, and a tale of dedication, service, and sacrifice. I tell it now as a way of expressing my gratitude to my caregiver. He could have chosen a different path for his life, but instead, he chose me. And he keeps choosing me, even in the face of my mental illness.
I met my now-husband Peter via an online personal ad 12 years ago, which was several years before internet dating was fashionable. We had so much in common that the relationship developed quickly. It was quickly obvious to both of us that we had found “the one.” I was overjoyed.
Peter was and still is a unique and special man. He’s 6’5”, muscular, and built like a tight end. But on the inside, he’s a sentimental, romantic teddy bear. I like to write, so I’ve given him many greeting cards over the years. And he’s kept every single one of them. He has a shoebox under the bed where he keeps all his “Sweetie Cards,” as he calls them. I was feeling nostalgic recently and decided to flip through them. What I found surprised me, humbled me, and persuaded me to write this post. Peter, and caregivers like him, deserve recognition and credit for their unconditional love.
In the beginning of our relationship, everything seemed perfect. I wrote him this note after we’d been together about three months:
I was so in love, and we were so happy. But there was a rocky road ahead.
I distinctly recall the first time Peter witnessed my depression. We had been together for about six months and were already planning our wedding. At the time, I was only 25 years old. I had struggled with migraines and battled depression off and on since I was a twelve. I took an antidepressant daily, but I didn’t consider myself mentally ill. But then… my plans for graduate school fell apart unexpectedly, and I slipped down into a dark hole.
Peter was beside himself. He tried everything he could think of to cheer me up. He cooked me my favorite meals, bought me thoughtful gifts, and tried to motivate me to do the things I had previously enjoyed. But the meals went uneaten, the gifts untouched, and he could hardly get me out of bed.
Devastated, at last he told me, “if you’re unhappy, it means I must be doing something wrong.” He blamed himself, which shocked me. Nothing could have been further from the truth. In fact, he was the light in my darkness.
Peter had never encountered depression before, and it challenged his preconceived notions of mental illness. I did my best to educate him about depression. In my case, the cause was likely genetic. My mom, sister, and many other members of my family also suffered from the same illness. It wasn’t “all in my head,” and I couldn’t “snap out of it.” He finally grasped the concept of a chemical imbalance in my brain. He was forced into the role of caregiver, although neither of us recognized it at the time. Little did we know that this experience was going to be repeated often.
Peter could easily have abandoned me then – we weren’t even engaged yet – but he didn’t. These are from the notes he wrote me around that time:
Instead of abandoning me, he constantly reassured me of his love. He came with me to see the doctor and stood by me while I switched to a new antidepressant. My depression eased. A few months later he proposed, and we were married in May of 2005.
Over the next couple years, I suffered from repetitive bouts of depression. Nothing too extreme and nothing that lasted longer than a couple months, but enough to disrupt our lives. I was on antidepressants constantly. Peter became a pro at recognizing the early signs of a depressive event and encouraging me to see the doctor. I’d make an appointment and we’d either adjust my dosage or switch to a new medication, slowly working through all the SSRIs and then the SNRIs. I was also experiencing brief hypomanic phases, triggered by those same antidepressants, but didn’t understand it yet. Once again, instead of leaving me, Peter embraced his role as my caregiver.
After two years of marriage, we decided it was time to start a family. In April of 2007, we found out we were pregnant with our daughter, and in February of 2009, with our son. Considering my personal history, and my family’s history of postpartum depression, my doctor kept me on Zoloft through both of my pregnancies and the postpartum period. Zoloft doesn’t work well for me, but it did keep my moods from becoming severe. Even so, my pregnancies were difficult. I experienced terrible migraines, extreme irritability, and rapidly fluctuating moods (somewhat normal for pregnancy though, huh?). I was on bedrest for 6 weeks with my first and 2 weeks with my second child. Both babies were born a little early but healthy.
Peter had it rough while I was pregnant, especially the second time. He was often caring for both our one-and-a-half year old daughter and me simultaneously. My migraines often incapacitated me for days, leaving him to deal with a toddler, piles of laundry, dishes, bills, and housecleaning. When I didn’t have a migraine, I was often depressed, lethargic, and unable to contribute very much. But Peter was a trooper. He stepped up and took care of everything. He even tolerated my Mom coming to stay with us for a couple months to help. That’s a lot to ask from any husband, and I was incredibly grateful.
I wrote him this note after our first child was born, and a similar note after our second:
It’s tough having two kids less than two years apart, and even tougher when you have a mental illness as well. After I finished nursing our second child in February of 2010, I went back to my doctor. Zoloft had never been an effective treatment, so I wanted to find something else. Over the next four years, we cycled through everything we hadn’t tried yet, including the older tricyclic antidepressants. Nothing worked for long, and most exacerbated my migraines. I finally accepted that I had a mental illness.
Instead of complaining, Peter responded by buckling down and becoming Super Dad. Our kids adore him and loved the special “Daddy Time” they received when Mom wasn’t well, which was often. They have had all sorts of “adventures” without me, ranging from going to movies, the Zoo, theme parks, swimming, bicycling, fishing, birthday parties, and of course running household errands like shopping for groceries. I’ve missed so many family activities that it’s painful to even think about it.
These are excerpts from cards I wrote to Peter between 2010 and 2014.
I’m sorry. I’m sorry. I’m sorry. I lost track of how many times I wrote that to him. Those are the cards I’d prefer to throw away, not keep. But they’re part of our history now. And Peter’s response has been beautiful. He’s told me he’s never going to divorce me or leave me. Mental illness, migraines and all, he chose to marry ME. And he’s going to stand by me through sickness and health, like he promised to do when we exchanged marriage vows.
In July of 2014, his resolve was put to the test. I had become severely depressed over the previous eight months, and I had slowly withdrawn from him. Every day I put on a show, pretending that I was OK. But on the inside, I was tired of the struggle, tired of the repeating cycle of medication frustrations. I hated myself and felt like a complete failure as a wife and mother. I was so overwhelmed by feelings of worthlessness and guilt that I was actively planning to kill myself. I had started cutting, and lying about how it had happened. When my daughter suddenly asked me if I was going to die, I realized I didn’t want to. I finally broke down and told Peter the truth.
Peter was shocked. It was hard for him, both that he hadn’t noticed and that I had successfully kept it all hidden. He was deeply hurt that I hadn’t shared with him sooner. He insisted that I see my psychiatrist that very day, no excuses. I did, and predictably, my doctor insisted that I enter a psychiatric hospital immediately. She spoke to Peter on the phone and made him promise to bring me there as soon as possible.
I was hospitalized for 8 days. It was a life-changing experience. I was able to share my struggle with others who understood and didn’t judge. I started learning cognitive behavioral therapy techniques to combat my negative thinking. I made some new friends, people with similar backgrounds and challenges. And I realized just how lucky I was to have a caregiver like Peter.
This is the card he gave me on visitation day, about halfway through my hospitalization. It made me cry.
The majority of the women at the hospital were also fighting depression. And unfortunately, many of them did not have a reliable caretaker. Most were separated, divorced, or had been abandoned by their loved ones because of their mental illness. They were fighting their battle by themselves. I’d always known that Peter was special, but it was even more obvious now. Instead of blaming me, he was forgiving me. Instead of being angry with me, he was praying for me and supporting me. How could I give up, when I had someone who loved me that much? I needed to try harder.
After I was released from the hospital, I completed three months of group therapy and then switched to seeing a private therapist once a week. I heavily modified my diet and started Botox injections to improve my migraines. (They have improved overall, but are still triggered every time I go on or off any psychiatric medication, which is far too often). I also added more exercise, made sure to get enough sleep, and started keeping a journal and tracking my mood. Even with those positive changes, my depression was severe enough to warrant Electroconvulsive Therapy last November. It helped, but only temporarily, and now I have to deal with short-term memory deficits.
After extensive discussion and analysis of my history, in January of this year my psychiatrist switched my diagnosis from Major Depressive Disorder to Bipolar Disorder. She was convinced that my repetitive medication failures were due to misdiagnosis and treatment with the wrong type of medication. I have Bipolar Type II, so my mania is much more subtle and harder to recognize. Looking back, I can identify hypomanic episodes, but I never suspected I might have Bipolar. It would explain a lot.
While many people might be dismayed, the new diagnosis gave me hope. Maybe a different type of treatment would be the key to finding stability. I wish I could say that was the case but unfortunately, it still hasn’t been smooth sailing. Since January, I’ve tried and failed around 7 different medications and medication combinations. I just switched meds again a couple days ago after yet another failure. But I have hope… there are many more possibilities to try, and I believe the right combination is out there.
At the moment, I’m doing better than last summer, but I’m not yet doing well. I have good days, bad days, and migraine days. But I press on, for the sake of my husband and my children. My one-on-one therapy has helped me tremendously. I still rely heavily on Peter, but now I try harder to express my appreciation rather than my frustration.
My cards to Peter over the last year and a half have focused on gratitude and thankfulness. Every day, I try to make sure he knows how thankful I am for his love and support.
I’m glad he kept all those cards for so many reasons. They remind me, on the bad days, of why he and I fell in love. His name “Peter” literally translates to “rock,” and that’s what he is for me. My rock, my foundation, my safe place. Together, we can continue to navigate this new Bipolar diagnosis. And one day soon, I pray that I am stable, so we can thrive rather than just survive.
That’s my caregiver story thus far. It isn’t over yet, but hopefully the hardest part is behind us. On behalf of care recipients like myself, I want to say thank you to all the Caregivers. Your loved one may not say it often, but you are valued, and your work is greatly appreciated. Please keep caring, because you are making a difference. Thank you.
Sarah Emmerling is a scientist, wife, mother, and writer. She’s been happily married for 10 years and keeps busy with two children and an aging black lab. She maintains a colorful flower garden, loves to fish, hates to cook, and plays the trumpet in her spare time. Sarah is an avid sci-fi reader and has an uncanny knack for repairing children’s toys. She has worked in cancer research for the last 12 years, and has a passion for interpreting science to make it understandable and relatable to the average person. Sarah has also struggled with treatment-resistant depression since she was 12, and is now diagnosed with Bipolar Disorder, Anxiety, and Attention-Deficit Disorder. She writes both as a therapeutic outlet and to raise awareness about Bipolar Disorder and mental illness.
You can follow Sarah on Facebook, Twitter, Pinterest and her personal blog.