Two things that I find to be true when supporting family members with mental illness at any time are these – you cannot pour from an empty cup, and oftentimes just being there is the most important thing. Here is how these truths have manifested themselves in our family’s life during COVID-19.
Mental Health Village of Providers
Caregiver guilt has been something that has featured heavily for me since my brother, Josh,* was diagnosed with anxiety and depression. For me, this caregiver guilt is a very uncomfortable emotion that I struggle to talk about -- and I want to pick it apart a little bit in this post.
Over the past few weeks, there has been a lot of media coverage about the suicide of television and radio presenter Caroline Flack. I didn’t know Caroline beyond seeing her on TV, but hearing about her death affected me deeply for some reason. I had a panicked sleepless night, and couldn’t shake the feeling of tearfulness that started as soon as I’d been told about the suicide. (Note: This post contains a trigger warning.)
Speaking openly about mental illness helps, but one thing I know for certain is that ''talking about your feelings'' cannot cure a diagnosable mental illness. To purport this idea is reductive and shows a deep-rooted misunderstanding of the complex physiological roots of psychiatric conditions. However, through supporting my brother in his experiences with anxiety and depression, I have come to appreciate that talking openly about emotions does play an extremely important role in a family where mental illness is present.
Learning to recognize caregiver stress at its early stages is important. Supporting my brother through his anxiety and depression has made me keenly aware of the importance of managing my own stress. For me, the first step of this process was learning to recognize the early signs of caregiver stress in my body.
Apologies to my readers, new and old, for not having blogged for a few weeks. I was in London last month participating in an international conference on schizophrenia recovery, and lots of energy went into that experience. The conference organizers had read Ben Behind His Voices, and so I was asked to share my experience as family caregiver (or, in UK_speak, "carer"). As you might imagine, I learned a lot more than I shared. The main lesson, reinforced: When a loved one develops schizophrenia, feelings have no country borders. We do not stop loving when mental illness moves in. We do share feelings of grief, anger, confusion, determination, resentment, loss, helplessness, and more. I connected first with Georgina Wakefield, my UK counterpart in many ways.
My son, Ben, who lives with paranoid schizophrenia, is in the process of rebuilding his life. After years of feeling buried under symptoms, distracted by hospitalizations, rejected from opportunities, and feeling left behind by friends whose lives had followed more predictable paths unfettered by mental illness, he is also (dare I say it? Yes!) reclaiming his future. So far, so good. Living with Mental Illness. Steps toward Recovering Life. Reclaiming his future. How delicious. How marvelously hopeful. And it's a phrase I heard echoed this week at a breakfast briefing of the International Center for Clubhouse Development (ICCD) in New York City. I love this phrase, because it's not only full of hope, it is full of truth - for those who manage to find their way to a Clubhouse, embrace its community, and take advantage of its opportunities.
Is living independently the right goal for everyone? Whether or not you live with mental illness, I think the answer is: no. For some? Sure. For others? Disaster - or at least not the ultimate goal. Dangers of Sudden Independence One year ago my son Ben "graduated" rather suddenly - too suddenly - from his place in a group home with 24-hour supervision to his very own apartment. Within one month, we needed police intervention to remove him from that same apartment, where he had isolated himself in confusion and fear after missing his meds for a couple of days - and most likely cheeking them whenever he wasn't closely watched before that. Why? Certainly the rug was pulled out from under him way too fast - whoosh! You now are expected to function without structure, community, or purpose. Good luck with that - but also, for Ben (who is a very social person, even with his schizophrenia), he was, well, lonely.
When my son, Ben, was in the first stages of recurring psychosis from schizophrenia, we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this). During that period, we had many encounters with our local police officers while Ben, and the rest of the family, were in crisis. I am so happy that these officers were trained in mental health crisis intervention. I am thankful for their kindness and empathy toward Ben, Ali and me which made our traumatic situation more bearable. Even more importantly, their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.
"Ben is so lucky to have you." I hear that a lot, from healthcare providers who often don't even know the families of those they treat and from PAMIs (People Affected by Mental Illness) who usually add one of three things: their family has given up on them - and they grieve the loss their family has somehow made their recovery more difficult and they are glad to have broken free from them, or their family has been a major part of their desire to stabilize, and they are so grateful for the love and support. One of the most validating things I heard at the NAMI National Convention was this, from the producer of a photo collection called 99Faces Project: that a UCLA psychiatrist was quoted as saying that the most important common link among those in successful recovery was this: someone who loved them anyway, and walked alongside them on the journey. I plan to be that for my son, carefully balancing, as much as possible, the letting go with the support when needed. That is a tough balance to achieve, but the success is in the desire to do so. This is Ben's journey, not mine, but I do always want him to feel our love.