Relapse: The Monster Under the Bed

…and it has come out once again. After six years of progress, Ben is back in the hospital again. Insert four-letter words here.

I knew it.  Involved families always know it.

Wednesday, after a voice-over session- late in the afternoon – I retrieve two messages from Ben’s caseworker. First message: “Ben
forgot to show up for meds this morning. ” (and why did he wait until 4 PM to tell me?) Second message: “I just spoke to Ben. He says he forgot and he will come early for his evening meds.”

Sure he will. I finish my job and drive over to Ben’s neighborhood and the office of his agency. I check all his favorite hangouts – diners, mostly. No sign of Ben.  I drive past his apartment – bathroom light on, no changes an hour later.  I go and wait at the agency. No Ben. I call my husband and we wait together. 11:30 PM. No Ben. I have called his cell phone about 100 times today. Straight to voice mail.

This is not good.

They tell me:  “There’s nothing we can do until tomorrow.”

My husband offers to drive around the streets in case Ben is wandering somewhere. That’s what happened last time he went off his meds, six years ago. Six years since we last went through this, and it suddenly feels like only last week.

“No”,  I tell him. “Let’s go home. There is no point. We need sleep.”

The next morning, I call Ben and he – unbelievably -answers the phone at last.  Says he’s on his way to take his meds and go to work. He sounds OK, for the few moments we speak. Maybe we caught it in time, I think.  I do not hear from his agency so assume Ben did arrive for for meds, did go to work.

At lunchtime, I am scheduled to speak at an event celebrating those with disabilities (including mental illness) who are succeeding at their jobs.  Perhaps next year, some year, Ben will be among these honorees, I dare to hope. I deliver my speech, acknowledging that we’d come close to a relapse the previous night but that I think that the responsibility of having a job had actually saved Ben from disaster.  This gets lots of applause. Little did I know that while I was on stage, Ben was still in his apartment, refusing to allow his caseworkers – and then the police – to enter. He is saying he lost his keys and is afraid to leave the apartment because he won’t be able to get back in.  He is starting to break down. The relapse monster is peeking out from under the bed.

Several hours later, Ben has been brought to the hospital by ambulance and is admitted into the psych unit he swore he’d never see again.  He is refusing the only meds that help him.  Here we go again.

Two days without treatment – sparked by a transition from group living to independent living sloppily made and with no insight and little thought (don’t get me started. heads will roll.) – and it’s as if the last six years  have disappeared. College courses, dean’s list grades, full family participation, and finally employment -erased? Never. Threatened? Oh yes.

Independent living must be introduced slowly.  Community cannot be torn away full-force, the way this transition was handled. I am livid. And sad. And ready to advocate.  I hope it works again this time. I pray Ben can keep his job – which will only happen if he goes back to Clozaril, the only treatment that works for him. I know it’s not his fault, this lack of insight into his illness, but I can still be angry at the unfairness of it all. At least for awhile.  Relapse always calls for a small pity party – acknowledge the feelings so I can let go – and then a move back to action.

There is always this threat looming: Ben may not bounce back.  But I will fight like hell to bring him back to life.  I have to believe it will work, somehow, again. And know that, ultimately, our only choice may be acceptance. But not yet.

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23 thoughts on “Relapse: The Monster Under the Bed

  1. I have been following your blog. I have a daughter, 21, who is diagnosed with Schizoaffective Disorder. We have gone through the ups and downs of progress and then relapse. We are so lucky that she does take her medicine, goes to therapy and recognizes that she has this disorder. It is always so heartbreaking to see them do so well, pursue their dreams and then have this brain disorder reach out and pull the rug from under them. I admire your strength and I appreciate you sharing your feelings. If we as parents are not there for them as advocates and supporters then they will have no one. My daughter is finally back in college and doing pretty well. She is aiming for an associates degree first. I know she will make it but it may take her a bit longer than the norm.She even had to go into the hospital briefly this summer but thanks to some med changes is back out and working.
    It is amazing how we as parents can see the setbacks creeping in but I think sometimes we push the thought away in hopes that it is not true.
    You and your family are in my prayers.

    1. Dear Neitcha,
      Thank you SO much for writing. When I speak about this topic I spell out what families need when mental illness strikes, and that word is SEARCH (for Support, Education, Acceptance, Resilience, Communication Skills, and Hope/Humor). Your comment this morning has given me the first item on the list: support. My hope is that this blog (and the book) will do the same for others. Thank you so much!
      Randye

  2. I’m very sorry to hear that Ben is back in the hospital. My son “Chris” had a relapse over two years ago, and while it wasn’t at all fun, especially the six months leading up to it, it was a learning experience for us all. If you are interested in the gory details (LOL), they are painstakingly detailed on my blog archives beginning July 1st, 2009. We had been pushing him to go back to college, and it coincided with the same time that our youngest left home for college. Loneliness is a huge factor in relapse, I am convinced, even though I discounted what Chris was telling me at the time. He’s been living with us since he had his breakdown seven years ago, and it is only within the last two years that I have learned to enjoy having him home. We kept trying to push him out of the nest, and he just wasn’t ready. But, relapse is complex, and it is hard to know exactly what is going on. Courage. It’s a learning experience that leads to greater growth.

  3. Rossa, thank you so much for sharing here – and your blog is wonderful! Have just become a follower. Your words , “Loneliness is a huge factor in relapse” ring so true for this latest episode. “Ben” does much better in a community – just not here at home(where he feels like he’s 12 years old, and our relationship suffers). He says he “hated” his group home – but when they transitioned him out so abruptly he lost his surrogate community of the past seven years- like family, flawed but constant and caring – and there was absolutely no attention paid to the social aspect of his loss, or needed transitions. He used to spend most weekends here at home, but once in his own place he chose to hole up there instead. Lonely. Yes. Definitely not good. Yes, indeed: courage. Thank you.

  4. ~~~~ wow~~~~~
    I have known you only through our association with the theatre group, Randye. And while I knew that you had a son with schizophrenia, I had no idea what that meant until reading your blog. Your strength is astonishing. And this pulling back of the curtain is part of the heroism you are presenting to the world and your family. I am so moved by this. Thank you for sharing it, and I hope that this episode resolves itself soon for Ben, and for you.

    love,
    Sean

    1. Sean, thank you so much for your kind words, and for taking the time to read this blog in the first place. It means a lot to me. I hope that others, especially those in similar situations or treating those with an illness like Ben’s, will read it as well. That’s why I wrote the book, too. I hope it helps someone else – and, ideally, sparks some changes.
      love, Randye

  5. Dearest Randye and Ben and family,

    First, I love you. Second, it is so frustrating that with so many strides forward, the life of a person with mental illness is so darned fragile. And of course with our loved one’s fragile mental state is our own emotional upheaval. Third, I cannot offer any words that will make it go away. However, without doubt, I know it sucks. I am sending big, huge hugs, boxes of tissue and smiles.

    Dee

    1. Thank you so much, Dee. And if this blog post moves you, please encourage others to read and follow it. Maybe some providers will even want to see the family point of view, and will think twice about instant transitions. That would be nice, yes?
      love, Randye

  6. I am so very sorry Randye. Ben is very lucky to have you and your husband on his side advocating for him. Do not give up. Ever. Every voice we can get to hear our pleas for help for the ones we love who have to struggle every day is worth the time, the effort, the emotional roller coaster. I am so very lucky to have the opportunity to read your posts that you share. It gives me insight into my own situation with my son. Thank you.

    1. Vaunda, thank you. I promise to never give up. We’ll make a pact, yes? Will keep you posted with, hopefully, news of Ben’s coming out of this relapse. And I wish you courage, insight, and love with your son. best, Randye

  7. Dear Randye,

    As my eyes were crossing from the final days of final edits for my book, I just took a moment out to read today’s e-mails. I’m left feeling your pain, your frustration, and your disappointment in a system that failed Ben once again. Ben did not fail. The system failed Ben and all the brilliant, loving Bens of our world.

    I will pray – as will George – for a quick recovery so that he and you and you and Geoff can move forward advocating in all the right ways and being a voice for families who haven’t yet found their voice or the resources that you have worked so hard to find since Ben’s earliest days of suffering and your earliest days of knowing that life would never again be as it had been for you and your beautiful boy. But have faith, dear friend. If a miracle or two is possible, I know that you will make it happen. Your courage is beyond admirable.

    We send you love and warm hugs and our faith in you and Ben and his sister and Geoff and all your family and friends who in person or in prayer are all rooting for all of you.

    Linda & George

  8. randye,
    i am crying …ifeel for you my dear friend and wish i could give you a physical all encompassing hug.please know trhat i am thinking of you with love.

  9. Hi Randye
    My son was in the psych ward earlier this year, so I feel for you. I always hope each episode will be the last, but I don’t necessarily expect it. Sometimes it’s just one foot in front of the other. I’ll tweet this blog & Facebook it. It may help others, too.

    1. Thank you so much, Gabi. Sometimes, when so much is beyond our control, the only thing we can do is to try and help others with our stories. I really appreciate your spreading the word, and your story. Warmly, Randye

  10. Your bravery and honesty are a beacon of light, Randye. I have my own parenting challenges, from different sources, but they pale in comparison to those you have encountered, and continue to battle daily. I’ll be following you on facebook, and sharing with friends. Your words do have power!

    1. Thank you, Joan. Together, maybe we can all help each other. And our loved ones whose challenges make their lives so hard, and whose courage is so often thoughtlessly tested. Fighting the good fight, on so many fronts.

  11. Hi Randye,So sorry to hear about Ben’s relapse. My heart aches for you, I know personally that feeling of starting over after you feel like you’ve fought(and Ben)so hard to get where you are. I appreciate so much that you are sharing your story, I look forward to reading your post and find great comfort in them. You have been fighting this battle a few more years than we have and I know by reading them that you have survived and I know now that I will as well. That means more than I can say…
    Take care

    1. Thanks, Dale. It means a lot to me to know that others like you are getting some comfort and insight from reading these posts. My hope is that in a few weeks this latest setback will have turned around, and I’ll be sure to share what helped that to happen. Each person is different, so what works for us isn’t necessarily universal, but hope is. thanks

  12. Randye,

    Thank you for your courage in sharing your struggles with managing Ben’s relapses. As an adult who’s battled my own mental illness for the past quarter of a century, my heart goes out to you as I know firsthand how terrifyingly unpredictable and painful every day during a relapse can be.

    Mental illness is so much more common than most people realize, and it is only by bringing it to light with honest discussion and finding support in each other that we can ever make true progress. Please let me know if there is anything I can possibly do to help you through this as both a fellow voice talent and friend.

    My prayers are with you & Ben. Wishing you peace and healing, always.

    Best,
    -Mara

    1. Hi Mara – and thank you so much for sharing your story too. The more we all learn about each others’ experiences, the more the door of frank discussion can remain open and hopefully lead to empathy, research, respect, and finally solutions. I am so grateful for your input.
      warmly,
      Randye

  13. Hello Mine –

    Sorry it took so long for my reply. I am not always at the computer to approve comments right away, so it can take a day or two sometimes for this to happen. I really do appreciate your taking the time to write, and share your point of view – thank you. However, I just couldn’t approve this comment, as it seemed confusing and not that helpful for my readers. There were some excellent points you made (Ben need emotional support; we should fix the leaks in our roofs) but the side comments into “what is norm-al” and “disaster victims” made the post difficult to follow and understand. Most of the comments that are helpful are shorter, and make one or two points. Thanks again for commenting, and I assure you I read every comment thoroughly, and really appreciate your thoughts and prayers.
    Randye

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