Advocating for an Adolescent with a Mental Health Diagnosis

Hebrews 13:5

…continued from Saturday.

{For those who have been following our story from October, we want to assure you that we plan on finishing it in November.  When we took up this challenge, we had no idea that the telling would stretch over more than 31 days.  Thank you for your interest and encouragment.  We hope that by sharing our journey, you will find hope and a blessing for whatever challenging circumstances might be staring you in the face or lurking around the corner. God is good.  All the time.}

St. Helena Hospital Center for Behavioral Health—Day 5

No matter what
I do, its wrong.
It will get me in deeper
trouble
Deeper in a hole that they
are digging for me
Will I ever get out?
Escape this hell?
Leave me alone…
Go away…
Please.

***

Unlike with a cancer diagnosis, where the doctors sit you down and explain the course of treatment, how many visits one must make to the clinic for which procedures, and which activities one should and should not engage in whilst recovering, the mental health systems leaves a patient’s treatment largely up to him or herself.

The #mentalhealth system leaves a patient on his own to negotiate and advocate for treatment and… Click To Tweet

The insurance standards for cancer coverage include empirical data—the patient has either gone into remission or lost the battle. The insurance standards for mental health coverage vary widely with only anecdotal data—does the patient appear to respond to treatment? Yes? Time to send the patient home. No? Keep the patient another day or two.

On Monday, the hospital finally assigned a caseworker to Sarah. I felt as if they had finally dropped a pair of water wings into our ocean of grief with the assumption that the five of us would find the water wings and that the flimsy inflatables would somehow support our combined confusion.

Pedro and I both spoke to the caseworker and tried to explain that while they may think that Sarah had responded to the treatment, we could hear little difference in her speech patterns and conversational topics. Pedro’s brother and sister-in-law had visited Sarah, and reported that she had changed very little since admission.

Art in the psych ward
Therein lies one of the fatal flaws of the mental healthcare system. No one routinely gathers empirical or even anecdotal evidence from the family members—the ones who know the patient best.

The #mentalhealth system in the US is fatally flawed. #stopthestigma Click To Tweet

When Pedro suffered through his darkest hours of his cancer journey, I or another family member stayed with him 24-hours a day. If something seemed off—his speech became less logical or his breathing different, we would alert the medical staff and they would check his vitals and chart the changes. The clues that we provided presaged a worsening in his condition each and every time.

While not every intern (Pedro received most of his treatment at a large teaching hospital) welcomed our input, most of them appreciated receiving further insight into their patient’s progress and condition. After Pedro’s last treatment in San Francisco, we returned home to Bozeman, MT where he would receive monthly chemo injections into his head via an Ommaya reservoir. The local oncologist had never seen one of these before, and invited me into the room to make sure she used it correctly because I had watched countless interns perform the same procedure.

Throughout his treatment and recovery, family members played an important part of the treatment and recovery. We were part of the team. With Sarah, it seemed as if many of the mental health professionals viewed us as part of the problem rather than part of the cure—especially once she turned 18.

Admittedly, Pedro and I wouldn’t qualify for “Perfect Parent of the Year Awards”—but we do love our children unconditionally and have always tried to provide a loving home environment where they felt safe to discuss whatever topics they wanted to, explore their dreams and grow into adulthood with the tools necessary to help them succeed.

I realize that many times the family of origin IS the problem for children and young adults suffering from mental health problems. Alcoholism, incest, verbal abuse, physical abuse, neglect, lack of boundaries, outrageous expectations, and religious fanaticism—all of these things can contribute to a messed-up child. Although we were strict and spanked our girls a handful of times during their toddler years, we also did everything possible to build good relationships with them and keep the lines of communication open.

The mental health world seems shockingly unconcerned about enlisting one’s family into the treatment and recovery program, though. For example, no one at any time offered Pedro and I support as parents back when Sarah struggled with anorexia. No one ever invited us to a support group for parents with anorexic children. No one offered us reading material or even websites where we could find out more about the disease.

When Sarah struggled with binge eating, she went to see a school counselor, and eventually a private practice counselor (who helped more than the school counselor did), but no one recommended books we could read to help her out nor asked for a complete family history that may have unveiled key information that would have made treatment more effective.

Before Alta Bates admitted Sarah to their program, the intake counselor listened politely to my pleas and explanations, but reiterated that Sarah would need to make the phone call and the arrangements. When Sarah abruptly quit the program, no one from Alta Bates called either Sarah or me to inquire about her absence. She could have been dead.

When she spent time in the crisis center in Flagstaff, a psychiatrist did sit down and chat with both of us the third day of her stay when I went to visit her on the weekend. I don’t know that our chat made any difference. Upon discharge, they gave Sarah a list of psychiatrists, and after contacting one of them, she had a few appointments to mostly discuss medication in the months after her discharge.

I knew how to fight #cancer--but no one told me how to fight #mentalillness. #caregiver Click To Tweet

I longed for guidance in exactly what to DO. I understood how to fight cancer, and I wanted to know how to fight mental illness (or at least some guidelines on how I could be more supportive!). Finally, after snot-sobbing into the phone when a nurse broke the news that Sarah would probably get released the following day, someone gave me a resource. The kind nurse on the other end of the line suggested that I read the book An Unquiet Mind by Dr. Kay Redfield Jamison.

As soon as we hung up, I logged on to Amazon, purchased the ebook and started reading. As I devoured the book the pieces of the puzzle started falling into place. Dr. Jamison’s memoir didn’t give dry, clinical explanations of bi-polar disorder—it told her story: a psychiatrist who suffered from it. It’s one thing to write about one’s observations of how to handle a person with bi-polar disorder and something completely different to invite the reader inside one’s mind.

The book would shape my thoughts and directions as I cobbled together the discharge plan that the mental health care system failed to provide.

…to be continued.

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Anita currently teaches English to 7th-12th graders. She describes herself as a ‘recovering cancer caregiver’ who gives thanks daily that her husband has been cancer-free for ten years.

Please note: We reserve the right to delete comments that are offensive or off-topic.

  • Tara

    Oh so much THIS: “Therein lies one of the fatal flaws of the mental healthcare system. No one routinely gathers empirical or even anecdotal evidence from the family members—the ones who know the patient best.”

  • “An Unquiet Mind” is a great resource; I had to deal with someone close to me who was severely bipolar, and the book gave a lot of insight into a rough situation.

    You’re in my prayers, Anita.
    Andrew Budek-Schmeisser recently posted…Your Dying Spouse 77 – En BreraMy Profile

  • Thanks for this, Anita. I’ve discovered this truth as a counselor … families are absolutely central to a client’s story … and their appropriate involvement is central to her healing.
    Linda Stoll recently posted…Her Autumn Mini-AlbumMy Profile

  • this comparison was particularly telling. it is almost as if mental health treatment is designed for treating those in dysfunctional families and situations. it is almost as if they assume that rather than consider that there are actually families who love their children/family members and want the best for them. sad isn’t it?

    my experience working in the mental health system in psychiatric hospitals, though limited, was that many of the people working there seemed to have so many issues themselves that I wasn’t sure they were the best ones to be helping these patients recover.
    martha brady recently posted…AND NOW, BACK TO GRITTYGRACE…I’VE MISSED YOU!…My Profile

  • It’s astounding how mental illness is handled – or not handled or mishandled — by those who are supposed to know best. I’m glad one good nurse gave you some additional resources.
    Barbara H. recently posted…Book Review: Come Rain or Come ShineMy Profile

  • I love that one lifeline you were finally handed in the form of a resource. God knew what you needed that day as you were sobbing and it came in the form of a nurse telling you about the book, The Unquiet Mind. What a blessing!
    Mary Geisen recently posted…How God Taught Me In 31 Days… RecapMy Profile

  • Donne

    I remember the last emergency room visit we had (3 days and nights) where I sat with him, listening to what he was saying to the mental health ‘professionals’ who came in every 8-10 hours. He (who is not stupid by any means) listened very carefully to the questions they asked him and then, when the next person came in, tailored his answers to fit. I pointed this out to several of them, but they didn’t seem to give my words much credence. He never saw the same person more than once in the whole 3 days we were there. There ended up being no beds available unless we wanted to drive to Tacoma, so we went home with a safety plan.

    • Aargh! I hate that you had to go through that! They give potential patients intake interviews–where’s the mandatory intake interview for the family members? It’s like they only want to see ONE part of the puzzle and figure out what the picture is all by themselves. Just think how much easier it would be if they said, “Can I buy a vowel?”
      Anita Ojeda recently posted…Recap, Regroup and Relearn: Lessons from OctoberMy Profile

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  • Bobbie

    I found the same thing with the boys’ diabetic dad. He had a low blood sugar in the middle of the night but refused to let the ambulance take him to the hospital. Even though he was clearly not in his right mind, there was nothing I could do! He answered all of their cognitive questions wrong and even looked at me and asked where his other wife Bobbie was. Hours later I had to trick him into crawling into the car to go to get “pizza” and he was admitted to the hospital where he spent three weeks in and out and never recovered fully after that. I wish they would’ve listened when I told them this was not normal for him.

    • I’m so sorry that you had to go through that, Bobbie. I think the pendulum has swung too far in the ‘hands off’ direction–we’ve come a long way from the days when we could admit someone to a mental health institution because we got angry at them or didn’t like them–but now it seems like no one listens when caring, loving family members try to explain what’s going on!
      Anita Ojeda recently posted…Don’t Dwell, Become the DwellMy Profile

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