Greetings from Sedona! It’s been raining and giving us some gorgeous skies and cool breezes. A welcome respite from the 110 plus degrees down in Phoenix.
I spoke with John a couple of times today as well as his case manager twice. He sounded much better to me and his CM said he did much better in the program today…whew! We are all hoping his new meds are kicking in. The good thing is that he has many people caring about him and working with him toward his improvement/ stabilization now. Far more than he had a year ago when he fell straight through the cracks.
I received a concerned note today about John’s “right to privacy” and my writing about him on my blog so thought I’d address it here.
John and my father know I’m blogging about him and our family. My Dad reads the blog daily and is proud of the writing I’m doing. I’ve read various submissions out loud to John and we’ve had meaningful talks about many things through this process.
John’s case manager also reads here and has praised me for writing and helping educate others about mental illness and advocacy. I’m hoping this blog has far reaching effects for others in our same predicaments who will find solace and less isolation through these sharings. I believe my intentions are to find connection and support as well as some kind of global education on these complex issues.
I also don’t share every single gritty detail of what goes on with John. I just write from my heart and my heart is always right there with him. I will never abandon my brother and I strive every single day to help pull him in to life and I hope that comes across clearly. It’s an act of bravery I think for anyone to tell their story and his story is entwined with mine since I’ve become his primary support person for over a year now.
It was also expressed a concern that John may be “losing his rights”. Yes I am meeting with a mental health attorney to guide me in ways to best PROTECT my dear brother.
For example my father is always concerned with him having his car keys and access when he is in an acute episode as hes been these last weeks. John has disappeared twice in his car for weeks on end in a state of acute psychosis. You can only imagine what that did to all of us. Police were involved and Missing Persons reports filed. He is lucky to be alive from these incidents. The last one was the impetus for me to intervene and move him to AZ to be close to me. I knew that decision would change my life forever but it was my only option and I’ve never regretted it. One day I will write that miracle filled story. It will lift you up as it did me.
Our family unfortunately knows all too well the tragedy that can lie at the end of a Missing Persons Report so I’m sure we are more sensitive than most. John can be a serious danger to himself at times.
I’ve never had other than his best interests at the forefront of my mind. I think most readers can see and feel that. I know everyone close to us knows this.
As his illness has exacerbated recently his case manager started talking to me about things like court ordered hospitalizations for John’s own SAFETY. He encouraged me to get legal advice as did our family’s financial planner to draw up wills for both of us.
He said to me just yesterday “if you should pre-decease John there needs to be a plan for his care and money distributed to him and who will manage that”. These are gritty realities of dealing with disabled people which need to be addressed.
I intend to seek this professional advice to find out exactly what we need in this complex situation and to protect John as best I can from his illness which has in the past steered him in very unsafe situations. I can’t be monitoring him every minute so we need to explore all options.
I’m just here to tell my story primarily. I walk this path right along side my brother. It has consumed me for over a year and we are just getting started together. Thank God we have each other.
I know my love and concern for my dear brother shines from every pore of my being and if that’s not seen then that just isn’t my concern. Lord knows the relief I’ve gotten from writing and the support and encouragement from the vast majority of readers commenting here and privately has been worth it’s weight in platinum.
I’m going to keep writing and sharing our stories, all the ups and downs as best I can and hope to be some kind of lighthouse in the dark not only for myself but for anyone else who may need it.
And that’s the best I can do.
two innocents 
It is sad to think of the human wreckage that feel they have a right to comment.
If asked, they would never want to have to deal with the issues and loss you have endured.
No time to waste on bored,bitter souls.
You are a shining beacon of hope, Ms KCL.
Thank you KCL for sharing the struggle you go through as you are not alone. Many families out there deal with children, siblings, parents with mental health issues. As always you enlighten us. HIPAA is not even a question here. Your plight mirrors so many of our own on different levels. Thank you for sharing. It really makes a difference. Far more than you know.
I have never had to deal with mental health, I had no idea just how it is for families. I applaud you in all you have done and continue to do for your brother. I do know this much, family is heart, no matter what they are heart.. love to you and your family Kathy..
I hope you keep writing. I believe that these writings, these stories, these “confessions”, are an integral part of you maintaining your strength and ability to care for your brother. Writing is therapeutic. This is YOUR therapy. You have a gift, and you are gift. Never doubt that.
Kathy, your love for your brother and your honesty about your life are refreshing and shine through every post. You are educating me about the struggles of mental illness and although I have not had that particular issue, I am beginning to struggle with dementia and his deafness adds another dimension to the equation. I hope I can travel my path as gracefully as you. Thanks for the inspiration!
It is an act of bravery, Kathy, to share these life stories. I absolutely appreciate your openness, and have always felt in your posts that concern for John has always been of the highest priority. Thank you for sharing, it has helped me view things in different ways previously not considered in our own situation. xo
I am often reminded of the words and wisdom of two of the most cherished people in my life, my mother and Swami Vishnudevananda, which are “Mind your own business.” Plain and simple. These are harsh words, and many times I have to remind myself of their wisdom. I don’t know what it is about our current state of affairs that sometimes makes us feel entitled and in a superior position to tell other people what is right for them or what they should or shouldn’t be doing. I pray for guidance in this absolute wisdom.
I think that sharing your thoughts and feelings is therapeutic for you and helpful for anyone who might be going through something similiar with their loved one; a child, spouse, sibling, parent, best friend, etc. You speak from the heart with a refreshing candor and your love and dedication to the well-being of your brother is very apparent in all of your posts.
Kathy, if you choose not to post this comment, I won’t feel bad or upset at all. Anyone who reads this blog must surely know that you have your brother’s best interests at heart. The only people who may not understand why you write about this, may be people who have never been personally exposed to a mentally ill relative…and probably never had the extreme responsibility of being a caregiver/interceder/security & safety advisor, etc., etc. It was my experience that when my mother was at her most troubled, NO ONE in her family, my dad’s family, or anyone who might have acted as an advocate for us three children, ever came anywhere near us or our collective problems…never once. My mother could be kind and loving sometimes, but was violent with us children and my father on a regular basis. We lived under her total domination and control. I never understood why my father stayed with her…why he didn’t just leave her and take us children with him…until I became an adult and realized that my mother’s rights would have, in all probability (in that day & time), superseded his rights. Somehow, we all managed to come through the almost daily ordeals of coping with her illness, but not without some very deep and lasting scars. It’s not that we didn’t all love my mom, but she was extremely unpredictable and dangerous when she had one of her episodes. My mother lived out her days living under my roof, and sometimes that of my sister, until she passed away. We never put her in a hospital or treatment facility…not because we didn’t want to, but because we didn’t give ourselves permission to do that. My life, the lives of my children, my husband…and my siblings…all of us have suffered additional trauma because we believed our mother needed to be protected, more than we needed peace and even safety.
My point in saying all of this is to try to help people who have never walked a mile in your shoes to understand that you are a devoted family member & caregiver, doing your absolute personal best to tackle this unbelievably difficult problem. Truly, there are no magic techniques, no tried & true rules, no special drug formulas that are guaranteed to procure success for the treatment (forget about a cure) of severe mental illness. It takes so much courage to even face the fact that mental illness is a problem in one’s family, let alone to accept that fact and have it become a real part of one’s personal and daily life. It takes inner strength and an abundance of perseverance to try to find ways to help your loved one…but not let the illness destroy your own life and stability. You have my respect and admiration… my prayers…and positive thoughts sent your way.
“It takes inner strength and an abundance of perseverance to try to find ways to help your loved one…but not let the illness destroy your own life and stability.”
Powerful words from someone who has walked in your shoes. You can do this Kathy, but be careful that you don’t lose yourself as you try to help your brother, you have needs too, don’t forget that.
Dear Kathy,
You wouldn’t be normal in the sense of being a ‘blog’ owner if you didn’t have critics. I am so sorry that you do have them as I love reading and praying through the rough spots. One simply can NOT please everyone. Not to seem melodramatic but it’s so obvious that you carry God in your Heart right alongside your protection of John’s beautiful Heart. I think you are doing His work along with help from His holy Angels.
I have many posts that I still need to read. I left off as you arrived back from ‘LA PUERTO’ and shared your beautiful experiences. Unfortunately, I will be reading backwards because I don’t want to miss the relevancy of your newest posts. Our son arrived homefrom a 2 week business trip to ND so my time was spent mostly catching up. Turning 60 was put off for a bit so he could help his dad sing Happy Birthday to me LOLLLLLLLL. They both sound as bad as I when I sing. It must be in the genes.
God Bless You Sweet Kathy
♥ ♥ ♥ Paula