The Mental Health Project is a Seattle Times initiative focused on covering mental and behavioral health issues. It is funded by Ballmer Group, a national organization focused on economic mobility for children and families. The Seattle Times maintains editorial control over work produced by this team.
Eight years into his career as a sales representative, my husband began saying people were following him. When I asked him questions about it, he didn't reply or changed the subject, so I assumed he was just having a bad day. His comments were occasional at first, but as time went on, he said he was watched constantly. He believed someone was staking out our home and our phone line was bugged.
I didn't notice anything unusual happening around us, except for my husband's changing behavior. I continued asking him questions, but he began blaming me for knowing who the conspirators were. I didn't understand why he was acting this way because I hadn't done anything to cause him to lose his trust in me.
Then his employer laid him off. We talked about what he wanted to do next, and he chose to make a career change. We moved across the country so he could be closer to networking and job opportunities. After six months of rejections, he gave up on finding a job and his paranoia worsened.
I struggled to understand what was happening and tried to find help for him. When I talked to him about seeing a counselor, he angrily responded, "I don't have a problem. You do."
Eventually, my husband lost interest in everything. Our relationship transformed into two roommates who rarely talked to each other. When my husband initiated a conversation, he only spoke about the people he believed were following him and interfering with his daily activities.
As a caregiver, I felt guilty. Throughout my life, I was the person who could get things done, and others, like my husband, relied on me. I struggled with understanding what was happening and my physical and mental health suffered.
My adrenaline was high constantly, as if I was running a marathon with no finish line. When I was at the office, I dreaded going home because I didn't know what my husband's mood would be like when I arrived. At home, I avoided talking to him because I was afraid he would accuse me of something I didn't do. When he asked questions, I paused to think about the right words to say before answering, which made him think I was hiding something from him. I was tired constantly. No matter how much I slept, I never felt rested.
We were living far away from our friends and family, and I was afraid to talk to anyone. Would they believe my bizarre stories? Even I struggled to believe them, so why should they?
On a work trip to a conference in the Pacific Northwest, I met my two closest friends for lunch. They asked about my husband and I avoided their questions. Finally, one friend was blunt: She knew something was wrong, and she insisted I tell them. When I did, their reactions were shock and concern. They encouraged me to talk to my primary care doctor.
My doctor referred me to counseling. At first I didn't understand why, but quickly I discovered talking to someone helped me. I learned that my husband's lack of trust was not my fault.
My confidence returned and I began setting boundaries with him. I didn't allow him to drive our car anymore after he almost caused an accident at a dangerous intersection during one of his delusions. I blocked his access to the pay-per-view cable channels after he started watching shows when I was at work.
He didn't like these boundaries, but accepted them when he realized I wouldn't back down. Despite this, the stress from our deteriorating relationship became unbearable and I moved out.
Less than three months later, calls started coming from creditors about past-due bills my husband had that I didn't know about. Soon I had more expenses than income and moved into my car. I started working a second job, and eventually with the extra income and an emergency withdrawal from my 401(k), I paid off the bills. In the meantime, I filed for divorce to protect myself financially.
After I moved out, an organization referred me to the National Alliance on Mental Illness. A volunteer there recommended the Family to Family class, designed for caregivers and others who have a loved one struggling with a mental health condition. The class, which is taught by volunteer facilitators who have loved ones with a mental health condition, covers common conditions, their symptoms, treatment options, and ways to communicate and advocate for their loved ones.
The facilitators also stressed that as caregivers, we should not feel guilty because our loved ones' struggles are not our fault. They stressed the importance of taking care of ourselves because if we didn't, we couldn't be there to support ourselves and our loved ones.
During this class, I learned about a condition called anosognosia, which prevents someone from recognizing health problems or other conditions they have. It often occurs with mental health conditions like schizophrenia, bipolar disorder, Alzheimer's disease, and dementia.
According to the Cleveland Clinic, anosognosia affects from 50% to 98% of people with schizophrenia, about 40% of people with bipolar disorder, and more than 80% of people with Alzheimer's disease.
My husband was never diagnosed because he refused to seek counseling, but his extreme paranoia and his inability to understand he needed help led me to believe he suffered from schizophrenia and anosognosia. He became homeless six months after I moved out and died on the streets 11 years later.
Although it has been almost nine years since my husband died, I sometimes wonder what would have happened if he'd sought help. There are still times I feel guilty that I couldn't do more to help him, and that's when I remind myself I did everything possible under the circumstances. When I finally gained the courage to share my story, I discovered there are others who will listen and provide the encouragement I needed for my own recovery. Talking with them comforts me, assures me that we are not alone, and there is hope.
A lot of the burden of caregiving falls on women. While many women were growing up, like me, we were taught to take care of others first and make our needs a lower priority. But it's important to focus on our needs to ensure we remain healthy, physically and mentally. We must be confident in our abilities and trust our instincts when we need to make critical decisions, no matter how tough they are.
When I've looked back at my experiences as a caregiver, I've wondered if there was anything I could have done to be better prepared, but it's impossible to prepare for the unpredictable. Even if I knew what lay ahead, I wouldn't have known how to respond.
As caregivers, we're doing the best we can in the circumstances we're facing. We are not failures.
Cheryl Landes is a technical communications consultant, award-winning author, photographer, and mental health advocate. Her latest book, The Best I Can Do, recounts her experiences as a caregiver for her husband, She co-hosts a weekly creative writing for wellness group and facilitates classes for caregivers through the Southwest Washington affiliate of the National Alliance on Mental Illness.