As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?
Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category “How is Ben Doing Now?”), but here is the current picture, about which I am so grateful:
- Ben continues to take college courses, 6 credits at a time.
- He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)
- He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it. He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.
- Although he had a roommate here for awhile, that ended badly (with the roommate’s addiction and connected behaviors) – but Ben has managed to salvage the start of an actual social life now. One step at a time.
Still. All of this progress can go away in record time – and often has, in the past – if something interferes with the meds he takes.
Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a “neural difference.” And we cannot do it alone. So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.
1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.
2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.
3. Had to wait until Monday for further action. (No one works on weekends). Didn’t think it would be an issue.
4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben’s face and confirmed he had been there recently for bloodwork, this visit somehow was “not in their system”. So we did the blood work again, just in case. Thank goodness we did.
5. Meanwhile, we are now dangerously low on Med A. If Ben doesn’t have a full dose of it, he will exhibit a serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.
6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn’t been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben’s, but that she is out to lunch. But I can leave a voice mail message.
7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.
8. I wait three hours. No call-back. So I call the main number again. “Oh, didn’t they tell you? She’s on vacation.” No they did not.
9. I call the nurse again. He spends ten minutes telling me why he can’t do anything to help me because the NEW paperwork (from this morning’s blood test) is “Pending”, and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere – and yet the one or two things I ask his “case management team” to help with – keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to “manage” his case?
10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day.
Crisis averted. But – if not for an empathetic pharmacist – Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.
So – case managers – if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) – PLEASE, at the very least:
- Let us know if you are going on vacation, and who is covering our case
- Have the front desk be aware of days off and what else a family can do
- Notice if paperwork is late. Call the family, and your client.
- Hey – please don’t wait for a crisis. Call your client once in a while and find out how they are or if they need anything.
We may seem like the “easy case” because families do a lot of the work – but believe me, we need your support.
Do we have to be a squeaky wheel to get it?
Does there have to be a crisis to get some help? Some answers?
Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I’ll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us – not just our family, but any others dealing with a family member with special needs: What would happen if we couldn’t be here? What will happen when we are gone?
Families cannot do it alone. The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don’t let us slip through to the end of our ropes.
Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.
4 thoughts on “How Families Slip to the End of the Rope: Mental Health System Cracks”
this post really resonated with me! I too have fallen on the mercy of our neighborhood pharmacist when in a prescription refill nightmare.
That said, glad to hear that Ben is taking courses and has a job! Goals “we” are still reaching towards.
(Who grew up in Fairfield, Conn)
Thanks, Nancy! We are over ten years into the “Recovery journey” and baby steps are starting to add up…tho slowly, and with setbacks. Every “normal-ish” day is a miracle, and these new achievements are especially amazing. We try to stay grateful for each good day, for as you know tomorrow is always a mystery.
I sent a copy of what I wrote to the case managers involved, because I don’t think they understand how it is for the families. I know they are overworked and overwhelmed, but this was a situation where better organization, communication, and empathy could have made a huge difference. (now let’s see if they talk to me next time we have an appointment!)
Randye, I too am the “managing mother” of a 35 yr old son who struggles with schizophrenia. I am always blown away at how the mental health system has failed for so many with a mental illness. If not for family support, there would be more mentally ill in hospitals, jails and homeless. It is difficult enough to watch your adult child travel this uncertain and often scary journey, but to imagine them without family support would be devastating, as it is for many. My son has not been able to continue with college and is not employed. He has recently been taking monthly injections to stabilize his disease, but the maintenance injection proved to be too low and we are now in the ever familiar holding pattern of medication adjustment. Our family has private insurance and my son is on Medi-Cal, but resources, facilities and programs are limited and inaccessible until a crisis surfaces, a big crisis, like an arrest. Fortunately he has not been arrested or hospitalized, but in maintaining a safety new, I often wonder if that is helping or hurting his journey. My heart aches for all those who have been afflicted by a brain disease. In the richest country in the world, we marginalized those who need our compassion, support and encouragement. Your book resonated with me, similar experiences and highs and lows. My son’s disease has given me a true respect for the little things in life and remind me to practice gratitude daily. From mother to mother, much respect sent your way.
Hi Debra, and thanks so much for writing. I nodded my head in agreement throughout your whole comment, and I’m so glad you found the book to have done sat least some justice to what we families go through every day. Respect right back at you. Thanks, and I hope your son responds to the next med adjustment positively. Baby steps…how I know it. College and employment for Ben seemed impossible for so long.
My best to you, with hope and respect,