New Year, New Challenges, Transition

Sometimes I wonder if I am helping, enabling, or standing in the way.

My son is now 21. He is compliant with treatment, but I do not see him making progress in a way that will lead to a productive and independent life. Sometimes we go along with situations because it is easier to after years of struggle and attention. I’m working on forgiving myself that as I learn the toll to my own health of years of caring first for his father and then both of them while working and launching the sister.

I keep the fact that I cannot work on his wellness at any greater pace than he is willing to work on his wellness tucked away to remind myself to back off, gather and let go of what I cannot control.

On Trying to “Fix” Our Loved Ones

There are many layers to healing from the fallout that mental illness can cause. There many layers of acceptance involved in that as well. I catch myself thinking “if we can just get to 21, if we can just get through this semester,” then what miracle will happen if we can just get through the next steps? I’m not really sure what I expect. I think I’ve fooled myself into thinking that is hope, I think it may not be hope, instead it may be another layer of denial about what is possible.

My son’s disorder is complicated. Sleep disorder, learning disabilities, asthma, seasonal allergies, and now he smokes as so many with bipolar disorder do. It’s hard to wade through the possibilities for treatment and so for about six months, he’s had little aggressive treatment. He’s maintained his meds and visits his doc, but he’s not seen a therapist. In the next couple of months I must work with him to find a replacement for his current doctor who no longer sees anyone under 18. My son is 20.

My laundry list never seems to get back to zero:

1. New psychiatrist

2. New therapist

3. Dental work

4. Disability papers for college disability office

5. FAFSA

Just whining.

I remind myself that there are many families out there who have little to no insurance coverage, no warm place to live. This does not keep me from wanting my son to have a normal life.

 

 

Bazelon: Advocacy Group for Mental Health Consumers

I dislike feeling helpless. Because there is an organization like Bazelon I feel less helpless and that if I needed to speak with someone about a legal problem I could contact them and or visit their website to get information I need.

Here is a recent publication on health care reform. It’s short and to the point. I hope you’ll read it.

Again, The Broken Safety Net

I read that Jared Loughner’s parents cannot stop crying. Of course they can’t. The unfathomable has happened. My heart goes out to them. My heart goes out to all of us as we try to sort through what happened in Arizona and how we failed this young man, the victims on this Saturday morning attack, and others who suffer and for whom there is no relief and no treatment available. My heart goes out to those who knew this young man was extremely ill and did not know what they could do to help. My heart is broken because we do not work to build safety nets and because we do not educate. Instead we allow disinformation and prejudice to be the order of the day. We allow the word crazy to be used dismissively – “oh, they’re just crazy.” What does that even mean? There is no diagnosis called “crazy.”

The numbers of people dropped from mental health care in Rep. Gifford’s district were phenomenal.  Over 50 percent of those with mental health disorders were dropped from the rolls and denied access to the doctors, therapists, and caseworkers with whom they’d been working to get well and try to stay well. What this means, for the uninitiated, is yet another layer of treatment access stripped away to some of the most vulnerable members of our society. I can assure you that it wasn’t easy before this terrible cut.  People wait months for an appointment, must jump through incredible layers of bureaucracy and gatekeepers  (because of course one would come to the local mental health care clinic for help to fleece the local government of health care dollars), and then once they are seen they may or may not have access to the best and latest mental health technology in terms of medications that are known to work well in certain kinds of mental health disorders, the latest in therapy techniques, etc. because the counties and state governments cannot and will not find the money to help those who need help. But we lack the compassion and political will to make this a priority with our tax dollars. Because this population is so vulnerable, we get away with it. But, you know what? We don’t get away with it. We have tragedy after tragedy. Not all of them are in the news. Most are not violent. Most are silent tragedies lived out in lives of quiet desperation.



Stigma: A Lack of Understanding and Knowledge

I think this article, by Elyn Saks, says much about stigma and about how we as a culture and nation have done little to educate ourselves about mental illness. Many of our opinions about mental illness are rooted in superstition and prejudice. NAMI has an email campaign called Stigma Busters, information on that and on becoming a stigma buster can be found here: http://www.nami.org/template.cfm?section=fight_stigma.

Here, Melody Moezzi talks about the need for community based mental health centers from her own perspective and need. I think she says it eloquently. http://www.huffingtonpost.com/melody-moezzi/enough-with-insane-mental_b_807084.html

Jared Loughner showed himself to be in need of help. Many around him knew he needed help. Knowledge and resources that work and could have averted this tragedy, were not made available, nor do the institutions that surrounded him and so many others have a real plan to help someone in his condition. College and universities may have a plan to move people who struggle off their campuses, but they do not have a true plan for getting help for those individuals. I would challenge them to work with policy makers to come up with a reasonable and compassionate plan to help, not just a plan to pawn them off on someone else or to dust their hands off once they’ve been shown the door.

His parents will be blamed I’m sure.  When we are first met with a family member who needs help, if we’ve not encountered mental health issues before, we do not have the slightest idea what to do. Even then, our neighbors, friends, and family tell us what they would do if it were their child, spouse, or parent. Oh, yes, it’s the parent’s fault.

I wish wish wish, that in those baby books they hand out and in those books written about developmental stages for children and teenagers, there was information about what to look for and where to go for help. But then, if we did that, we’d have to have real resources for families to access. Instead, as in the case of Arizona, services have been reduced and the safety net has been torn and many people suffer quietly. Now, because of our willingness to stick our collective heads in the sand, the suffering is not so quiet and is so sad and tragic. From what we’ve learned about Mr. Loughner before his break, I will go out on a limb and say that if he is indeed treated at some point in this journey and regains his mental health, he will be horrified to learn of what has happened.

Again I say, shame on us.

 

The Future: Transitioning to Adulthood

Much of my son’s middle school and high school years were filled with trials of medications AND drug and alcohol abuse. Wish I’d known just how much alcohol and drug abuse had been going on. So many issues that he faces now are a direct result of him being stoned when he should have been learning life skills. He already struggles with ADHD (the spacey kind) and many things escape him like details on assignments but then he can turn around and navigate systems within an organization (such as his community college) to get where he needs to be. It’s difficult for me to wrap my head around this and while I try to not get frustrated with him, I do.

I have been thinking that I would like to engage a social worker who could act as his case manager and help move him forward at this time when he should be separating from mom. If someone other than me could talk with him as the young adult that he is and teach him those things that are missing and help him develop some strategies for dealing with life and frustrations, I would be beyond grateful.

Certainly I tried, and he did learn some of those things. He is usually quite mannerly, polite. He is also unflinchingly honest (not always a good thing). Details are the stuff life is made of though: how to get a bank account, how to apply for a job, how to contact your professor about questions that one might have about assignments. All of these kinds of things that he does not want to discuss with me are incredibly important.

Sigh.

The Safety Net

Years ago I worked in one of the clinics at the local county hospital, the one paid for with tax dollars and teaching schools, etc. Eventually I had to leave. I couldn’t take it anymore having grown up on the edge of poverty and having gone through watching my mother navigate the local health system. At the time I worked there, potential patients had to go to “investigations.” This was the area where an intimidating gatekeeper asked many many questions and did everything possible to catch you in a lie, trying to get health services that you didn’t deserve. This pissed me off. Who would go in there and subject themselves to day long waits, bureaucrats, and a day off work just to gyp the system. Few, few and far between.

About a month ago, I wound up taking my son there and leaving him at the emergency room. It was one of the hardest things I’ve ever had to do. He was in pain. All the providers we used in the past said the same thing. You have to take him there. He navigated the patient finance system (as it is now called) just fine, but waited for 8 hours in the emergency room. He was given a pain reliever and a referral to a local clinic.

He must take public transportation to get there while I am at work (I’ve taken off so much during this time that I can’t take off anymore) and fortunately he was met with a reasonable doctor who wasn’t burned out with the multitudes of patients coming in the door.

Finally he has been referred to a neurologist but he continues to be given vicodin for pain. Ridiculous. But he is moving through the system, as broken as it may be, he seems to be getting decent enough care, it’s just not moving fast enough.

Time will tell about this diagnosis. I worry about all sorts of possibilities. Was it his accident on the skateboard? Does he have the beginning of fibromyalgia? Have his psychiatric meds caused some neurological damage? The answers, if there are any, will come slow.

We were talking today about this set-up. How do the working poor do it? They are the least likely to have sick days at work and yet, it would take an entire day to see a doctor who might then refer you to someone else? This is one definition of insanity.

Grieving the Young Man Killed at the Pentagon

I feel John Patrick Bedell’s parent’s pain. I know that with a small genetic fluke any one of us who have children with mental health disorders could be in their shoes. (By this I mean that the trajectory of the illness could take us anywhere).

Bedell was stopped by a highway patrolman out west after he left home recently. He was so agitated that the officer called his parents from John’s cell phone. They begged the officer to take him to the hospital. John refused and the officer let him go. Whatever happened to a danger to one’s self or others?

Georgia has a graveyard in Milledgeville near the state hospital. Many nameless souls are there because they were warehoused by their families and by their communities. No one spoke for them. I understand that. I understand being afraid of committing a loved one to a “hospital.” On more than one occasion we had to do this with my mother when she stopped taking her meds. It was awful, as it should be. But, this one small act of letting the authorities know that someone is a danger to themselves or others, is the one safety valve we have to keep our loved ones safe and potentially others as well. Too frequently when we call, we are ignored. (Also make yourself familiar with Crisis Intervention Teams in your community). What in God’s name do you do then? This is a long drawn out panic that only those who have been there can possibly know.

We know that the vast majority of those who have mental health disorders are not violent, but for the few who are, we are constantly being reminded that true safety nets do not exist and many have families who wait on the sidelines, rushing to make phone calls and begging – literally begging for help. Too frequently they are dismissed.

I don’t know the answer to this. Surely there are many discussions in psychiatric research groups at major universities. These discussions need to reach consumers so we can participate and give real life meaning to the research.

In the meantime, please look at programs such as WRAP and documents that incorporate advanced directives into your loved ones treatment plans so they are not caught in the damaged safety net. Be sure, be sure, to have HIPPA statements notarized and included in every legal/medical treatment facility that has the potential for coming in contact with your child before they reach 18.  That is when the nightmare begins for so many.

For the Bedells and others, these things are merely paper at this juncture in their lives. While they know they did everything possible to help their son, they will always carry the doubt that maybe there was something else they could have done. They will live with the knowledge that the system and our society did not offer them humane tools that their son needed and that is a tragedy that is beyond our meager ability to understand these things that are unfathomable.

To the Bedells, I offer my deep heartfelt sadness and sympathy.

More on Health Care, Insurance, Stigma – Don’t Have Bipolar Disorder and Another Medical Condition

Recently, through a debacle at my workplace my son lost his health insurance just as we were on the verge of having things move on up to the next level of him transitioning into adulthood by beginning community college.  As it turned out he couldn’t then register for college because I had to use the tuition money I had set aside for his medications – a classic catch 22. Had he been able to register and begin, the health insurance would have kicked back in and we could have moved on with our lives.

The old phrase penny wise and pound foolish comes to mind with regard to these matters of health insurance coverage. We have since been working through the county and city medical safety net to have him seen about a purely physical problem that he has. So far, he has been to the emergency room, had two doctor visits, had an incredible amount of blood work done, and still has not been referred to a specialist. Why? Because they really believe that his pain is related to bipolar disorder. I’m astonished to discover how much of one’s humanity can be ignored by simply having a diagnosis. As I’ve written before, I do remember the problems my mother had in getting treatment (because she was a woman and had bipolar disorder) but I am the first to admit that I live in a special place. I am surrounded by well-educated people who generally have moderate to liberal ideas about how people should be treated and how our society should respond to those with disabilities. The prejudice about mental health disorders runs deeper than a cursory college education could possibly erase and I have been stunned to silence on occasion when talking about these matters with my “well-educated” neighbors and co-workers.  The amount of stigma, even within the medical community, is beyond my ability to comprehend.

Finally, I made a few phone calls to social workers I know who work with or in “the system” to see if we could get things moving along to have him seen by a specialist. An orthopedist would be the first logical step in this, no pun intended, to help him with the pain in his leg. So far, no luck.

It is possible that his insurance through my work place will be retroactive and things will get back on track, but this gives me little comfort when I know that there are many other families out there with no insurance for their children, teenagers, and young adults with disabilities. But no family should have to worry about whether their children are covered. Things change in the blink of an eye and we can easily find ourselves in a terrible and dark place in trying to take care of our loved ones or ourselves.

Should profit really be a part of health care? Why should someone be making a profit off of my child’s disability or another person’s cancer or another person’s unfortunate automobile accident? I find this morally repugnant and a violation of all that could possibly be ethical. Unfathomable. Totally and completely unfathomable.

Just to add, I do not have a problem with healthcare workers (doctors, nurses, medical receptionists, etc.) making a living doing what they are trained to do – I DO have a problem with insurance companies making huge profits and by so doing run community health care into the ground and by so doing actually kill people. Denying coverage kills people. Denying the opinions of doctors and trained professionals kill people. It is murder from all that I am able to see. I welcome any discussion on these and other matters, if those reading have an interest in such a discussion.

Stigma Affects Medical Care

Oh yes it does. I watched my mother try to get help for herself on several occasions, but she was not believed. She could have bled to death until her psychiatrist sent her to a friend of his who was a Gyn. He scheduled her for surgery the following week after meeting her because her hematocrit was getting dangerously low. What did they find when they did the hysterectomy? A uterus filled with fibroids. I guess those were “in her head” too.

My son is presently without health insurance (yes, I’m petrified) and having some unusual body aches. I took him to the doctor. Before she even touched him, she made the pronouncement that this was common with psychiatric disorders and that she didn’t really see or hear anything that would lead her to believe otherwise. I have to wonder how many folks with bipolar disorder have died because a doctor couldn’t see past their diagnosis.

I told her that I had never gone wrong trusting him when he tells me he is unwell. They do not see him in this office displaying hysterics, he is only there when he is very ill. I don’t remember the last time I was this angry. When we do get to the bottom of whatever is ailing him, rest assured, I will be writing this doctor a letter.