In today’s Caregivers in the Spotlight guest post, Brandi Gowan, author of the blog mydaughtersmind.com which chronicles her journey as a caregiver of a young daughter with mental illness, shares some of the challenges of caregiving in her own words. I recently met Brandi through a mutual social media contact and am grateful for the work that she is doing to bring awareness to these challenges. Her blog is a beautiful, raw and real look into how much it takes to give our children what they need when mental health disorders are present in their lives.
Photo via istockphoto
Reading Brandi’s About page on her blog, you immediately get the sense of the challenging journey that this family of six has gone through “Dealing with mental health disorders is not easy. It is not easy for the person who has a mental illness and it is not easy for the people surrounding them, the people that love them, the people that live with them. It is especially not easy when you don’t understand their illness and cannot fathom what their mind is thinking at any given time.” She describes her blog as “the view of a mother who has always known something was wrong with her child and yet couldn’t understand it. It is about seeking help, avoiding the stigma of mental health disorders in children, on protecting your family and learning to help and understand your child.”
I asked Brandi to share her thoughts about some big caregiver challenges; here is what she had to say:
Stigma:
There are so many times throughout our journey that I have felt judged, labeled or put down. First of all, I am a young mom. Sometimes when I walk through the door to places (hospitals, mental health agencies etc.), they see a young mom with tattoos and 4 kids and automatically assume that my daughter’s issues are due to bad parenting. They don’t realize that I am a university educated, intelligent mother who comes from a family filled with social workers, mental health care workers, nurses and support workers. I know my way around the mental health care system, I have supports who know all about mental illness and I have done my research.
I always like to tell the story of the time a nurse gave me a website address to a parenting site after my daughter (10 years old at the time) had arrived at the hospital in crisis mode. She implied that my daughter was spoiled and that she is taking advantage of us and threatening self-harm because she didn’t get her way at home. My daughter is paranoid of doctors, the last place she wanted to be was at a hospital. Her episode was a panic attack, not a temper tantrum.
I don’t think this nurse realized that because of that statement, I was worried to bring my daughter back to the hospital. Did everyone feel this way? Was my daughter just spoiled and manipulative? Was I just a bad parent who didn’t know how to set boundaries for my child? My husband and I had a hard enough time reaching out to get help for our daughter, now we were questioning everything, from our daughter to our parenting skills. This actually hindered my daughter’s progress in treatment, we were less likely to take her to the hospital, and worried about how others would think of us as parents. It also made us less likely to speak out about our daughter and her illness.
I have learned that children with mental illness are many times labeled spoiled, manipulative, disruptive, uncontrollable, hyper, bossy, stubborn, etc. It is my thinking that children never act this way on their own, either they are reaching out for help or honestly, can’t control their behaviour
Blame:
Although there are many reasons that lead me to believe that genetics play a huge factor in my daughters illness, I still blame myself sometimes. Am I a good enough mother? Have I gave one child more attention over another? Did I let her watch too much tv when she was younger? Did I let her eat too much junk food? I think these are all typical worries for any mother, but they are compounded as soon as your child is diagnosed with a mental illness, you automatically feel as if you are to blame because there is no simple answer or physical reason why they are the way they are.
Regret:
My biggest regret is easy- not getting help sooner. My husband and I knew something was wrong with my daughter early on in her life, however, because she normally was so well-behaved, did extremely well in school and always seemed perfectly fine outside of the house, we didn’t take her in for help. My daughter was holding in all her fears, anxieties and intrusive thoughts while she was out in public and literally crashing as soon as she got home. Many times, we were the only ones that saw this behaviour.
There were times when she was 5 and 6 years old where we had literally drove into the hospital parking lot and then drove back out again because she had finally calmed down. We also didn’t think anyone would believe us or that we would be judged. We didn’t realize that even at that young age that she was dealing with catastrophic intrusive thoughts from OCD and we had no idea how to help her because she wouldn’t talk about them
Self Care:
Self-care has been an important lesson for me to learn throughout my journey. I have found that dealing with my daughter’s illness can feel all-encompassing sometimes. At one point, after my daughter had been back and forth to the hospital with self-harm threats, I had suffered a panic attack and ended up in the hospital myself. I realized that to provide the best possible care for my daughter, I had to take care of my own mental health as well. After that, I consciously made the effort to practice self-care and to ask for help or respite when I need it.
With 4 kids and a husband who works long hours, it’s not always easy to find time for myself. Thankfully, I have a very supportive extended family. Some of my self-care practices are working out a few times a week, reading, walking my dog, journaling and meditation. I have found that just taking the time to grab a coffee and meet up with a friend can do more for my own mental health than anything else. I cherish those moments.
Support:
I think the biggest thing that needs to be addressed is that caregivers of children with mental health issues need more support. I have had to give up my career, my social life and, (at some points) my own mental health to get my daughter the help she needed. If you have a child that deals with horrible intrusive thoughts, does not want to leave her room, sometimes won’t eat or sleep for days and many times threatens self-harm, how can you hold a job or expect to have any sort of social life?
Everyone will tell you to put away all the sharp objects in your house, monitor them and not to ever leave them alone and yet, many caregivers need to hold down a job for financial reasons. How is this possible? Even with a flexible job, understanding employer and the ability to work from home or remotely, I had to give it all up to take proper care of my daughter. I was lucky enough to financially be able to do this, many other parents out there are not as fortunate.
I think the caregivers deserve as much support as the child. I think by supporting the caregiver, the child will have a better chance at treatment, recovery and stability. It takes a lot of strength to look after someone with a mental illness, I commend all the mothers, fathers and caregivers out there.
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I am a 33-year-old mom of 4 kids (aged 14, 12, 10 & 6) from Ontario, Canada. Currently, I am a stay-at-home mom raising a daughter with mental illness having left my job in public relations and marketing communications to care for her. My 12 year old daughter has been diagnosed with Pure OCD, Generalized Anxiety Disorder, Social Anxiety, Panic Disorder and Depressive Disorder. My goal is to bring awareness to the lack support and resources for children’s mental health as well as the lack of support for parents raising a child with mental health issues.
My blog, www.mydaughtersmind.com, chronicles our journey into getting help and a diagnosis for our daughter. I started my blog mainly as a journal for my own therapeutic reasons and it has now become a way to raise awareness and support for parents raising children with mental illness. You can also find me on twitter @mydaughtersmind
Great post!