A Good Case Manager Is Hard to Find

The quest to find good professionals to work with your loved one with mental illness may ... frankly ... drive you crazy.  We've paid good money to:

• A therapist who thought my son had a bad case of "failure to launch" and completely missed the fact that my son was developing schizophrenia. (My hand to God ... it's true.) Even better, when my son had to be taken to the emergency room and the psych ward, we were unable to reach him because his office phone had been cut off for nonpayment.  Thanks, Cigna.
• A therapist who talked my son with schizophrenia into not taking his medicine.  (Surprise! His ideas about the illness being the remnants of drug use were wrong.)
• A psychiatrist whose wife/office assistant got me mixed up with another patient's caregiver, yelled at me, realized her mistake and said, "Please don't tell my husband." 

I now realize that we were incredibly blessed with my daughter's psychiatrist, who spent several hours with her every month for a 11-year period from 1989 to 2000. Today psychiatrists dispense medicine, period. You see them for 15-minute appointments once a quarter, and you work hard to convince your loved one to at least tell them the truth about their symptoms.  It's relatively easy to lie to someone who hardly ever sees you.

Nonetheless, it's important to partner with your loved one's social worker, case manager, therapist and/or psychiatrist. I've found there's a natural period where they assume that you are part of the problem, but it can change over time. And, even if the therapist is unable to tell you things, you have every right to call the therapist with important information. 

We've been working for 3-1/2 years to get my son moved to a good counseling center where he soon will have a case manager who I personally know from many months in a support group where he is the social worker.  He's heard me bitch so much about the other social workers and therapists that I think he's a little worried about working with me.  I got that from this direct quote: "You're going to be mad at me now."

Probably not.  The issue with schizophernia is that the illness begins at about age 20, when the young person is trying to get away from Mom.  That makes trying to get the person to do what you know they need to do all the more trying.  I do look forward to having a strong thoughtful social worker take on the role of my son's advocate.

The biggest issue is keeping a good relationship with a case manager or therapist in place.  Lots of people change jobs, and, when that person is your loved one's link to sanity, it can have a serious impact.  Like I said, I know appreciate that my daughter's psychiatrist worked with her for 14 years.  I think that had a major impact in helping her grow into better mental health.  

Things to Do When the Worst Happens

Rich Nathan, senior pastor at Vineyard Columbus, taught a remarkable sermon this weekend called "When You Can't Get Pregnant." Although it addressed those who can't get pregnant, it also spoke to people like me who did get pregnant.  And then the trouble started.

No pregnant woman dreams of a future for her child that includes schizophrenia. Rich quotes from a sermon by Dr. Martin Luther King about shattered dreams and "staggering winds of disappointment." Been there.

At the top of my sermon outline, I wrote: "We don't know why bad things happen to good people. It's not helpful to spend much effort trying to figure out why."  (Still, I expect to have a meeting with Jesus after I die to get an explanation.)

Rich noted in the sermon that shattered dreams can result in bitterness, fatalism or a feeling that God is punishing us. For me, it's resulted in an absolute determination to make this dreadful experience benefit someone else. Sometimes I wonder if I am still bargaining with God.  (As in, if I'm really, really helpful, maybe my son will be healed.) But I don't think that's it.

I have seen so many other mothers buckle and collapse under the strain of having a mentally ill child that I must help. I know that it's really hard to believe that God is sovereign and loving when your grown child is lost in the streets of a strange city or tearing apart the plumbing of your house at night to find the source of the voices he hears.  But He is. Many times I have been asked, "Why are you all right?"  And the answer is that God ... who is good and loves my son more than I do ... is with me.

So I'm in training at Vineyard's Support and Recovery ministry and hope to co-lead a support group to help those who love people with mental illness.  Details on that will follow as it gets closer.


How can you keep the faith when the worst happens? Rich mentioned some ideas: Find a way to turn this liability into an asset. Write down all the things that are right in your life. Focus on who God is. (And by the way, schizophrenia was never God's idea for anybody. This disease, like all others, was the brainchild of Satan who hates us and wishes us harm.) For me, listening to worship music on my iPod in the middle of the night,  practicing centering prayer, and surrounding myself with reminders of God up to and including following Virtual Abbey on Twitter to pray during the day helps as well.

You can watch the sermon at www.vineyardcolumbus.org

As often happens, after I heard the teaching, I got a reinforcement message in the form of a podcast sermon from Willow Creek ... my husband's old church in Chicago ... that went over many of the same things about dealing with serious disappointments.  And it ended with a thought:  God's not finished with me yet.  I may have hope deferred, but that doesn't mean there is no hope.  

So Now We're in Danger: The Impact of Destroying Mental Health Services

Everyone agrees that our mental health system is broken. But is it now putting the community in danger?

Last week I attended an excellent forum at the Columbus Metropolitan Club on Ohio's budget, which, as the forum title noted, is now mostly composed of  bubblegum and duct tape.  The Center for Community Solutions handed out a booklet titled "Thinking the Unthinkable: Finding Common Group for Resolving Ohio's Fiscal Crisis." 

Page 28 attracted my attention, as it was the first time I've seen anyone admit on paper that our mental health system is not only broken, but that, as a result, our situation is "dangerous."

The Center writes, "A combination of historical factors, together with the impact of economic decline on demand for mental health and alcohol and drug addiction services, have brought (the behavorial health) system to the brink of failure and collapse."  The factors listed include:

• Common restrictions on mental health benefits in private insurance.
• Impact of the major deinstitutionalization during the late 20th century.
• Growth in incarceration and the high rates of mental illness among prisoners.
• Federal policies that exclude adults below age 65 from coverage for services in state hospitals.

(Another factor could be the tendency to balance budgets on the backs of the mentally ill.  I'm just saying.)

The Center called for stabilizing Ohio's mental health treatment by relieving Ohio's local Mental Health and Alcohol and Drug Addiction Service Boards from providing Medicaid matching funds for community-based behavioral health services, saying that will "stabilize precarious, if not dangerous, situations in communities across Ohio."

Ohio is flat broke, and it will take more than reading Suze Orman to get the state back on track. Still the cuts to mental health have actually given the state a greater financial burden if only because so many of the mentally ill end up without medicine and in prison. It makes financial sense to keep people stable and out of jail, even if you never measure the humanitarian aspect of this.

The Center called for immediate action to stabilize public behavioral health services as well as a thorough assessment of the system's future role in light of health care reform.

While it is hard to read that the situation has become dangerous, it is good to know that someone is paying attention to the damage that the cuts to mental health have caused. 

How Bad Is It? It's This Bad

I found this survey conducted by the Consumer Health Service and the National Mental Health Association about the impact of caring for a family member with a mental illness.  Given that the medical community and our political "leaders" have allowed the burden of care to fall to victim's families, here are some of the facts:

• Nearly one-third of the caregivers of people with severe mental illness said the situation has caused them severe hardship.
• More than half of the caregivers said their most pressing concerns are: drug abuse, the threat of suicide and violent behavior. 
• 77 percent of caregivers say they play an extremely important role in the care of the person they love with mental illness.
• 78 percent said the medical community does not understand the problem they face in caring for a person with mental illness. 

All true. 

"You'd Feel Fine If You Only Took Your Medicine"

I take my medicine.  Do you?  Probably.  So why is it so hard for our loved ones with mental illness to take their meds? You probably have heard all the reasons:

1. They hate the side effects.
2. They feel good now so they hope that the illness is over.
3. It's too hard to get the medicine. 
4. The medicine takes aways the "highs," leaving them flat and uncreative.
5. They just don't like the idea of taking drugs for mental illness, athough they often medicate it themselves with alcohol and street drugs.
6. The medicine is too expensive. (That's certainly true.)

The No. 1 responsibility that we have as caregivers is to make sure that our loved ones get and take their medication. That's difficult, to say the least. I have had a variety of experiences.  I've had loved ones actively refuse to take the medicine, spitting it out into the glass of water.  I've had loved ones pretend to take the medicine and later throw it into the toilet.  And I've had loved ones faithfully take the medicine.

This last came as a result of refusing to provide any money to the loved one and then offering to trade compliance for cigarettes.  Yes, I know the American Lung Association would be proud of me. But it worked.  And, since up to 80 percent of people with schizophrenia smoke, it is an option. Once he had been on the medicine for a while, he became faithful about taking it because, he said, "I remember what it's like when I don't take my medicine."

Frankly that's what we all wish for.  Of course, the classic strategies to encourage compliance include:

• Talking up the benefits of taking the medicine, including pointing out that it will help them to stay out of the hospital. A locked psych ward isn't a pleasant memory for anyone.  Pointing out that the medicine will help them move forward to better days is also important. 
• Building the medicine into a routine that's as simple as possible.  We do a weekly pill box.  I fill it each Sunday and check it intermittently. My loved one also takes all the medicine once a day, even though he is supposed to take it in 12-hour periods.  He was never able to remember taking it in the morning, but could remember to take it before bed. Better all at once than not at all.  
• Using incentives, like money, movie tickets, keys to the car and other things.

If they still won't take the medicine, you need to maintain as positive and pleasant a relationship as you can so the tension of the medicine doesn't destroy your rapport.  At the same time, you need to allow the loved one to experience the consequences of not taking the medicine. And that can be the most difficult step of all. 

Good Thinking: From Francis de Sales

Do not look forward to the changes and chances of this life in fear; rather look to them with hope that, as they arise, God, whose you are, will deliver you out of them ... the same everlasting God who cares for you today, will take care of you tomorrow, and every day, either by shielding you from suffering, or by giving you strength to bear it. Be at peace, then, and put aside all anxious thoughts.

I don't think I've ever met anyone who has achieved this advice from Francis de Sales.  But it is a goal for me, like it is for many who love people with mental illness.

First, falling apart under a burden of worrying and anxiety will not help your loved one.  Your stability is a bedrock for them, and you need to try to keep yourself at peace as best you can.

So how? Only with God's grace is any of this possible.  The best way to open myself up to that grace is to realize that I need to ask for forgiveness for the sin of worry ... yes, it actually is a sin ... and ask for grace.  I certainly can't do it by myself.

I was listening to a sermon from Tim Keller of Redeemer Presbyterian Church, a great church in New York. He pointed out that worry actually comes out of pride and even arrogance.  We think we know what SHOULD be happening and are distraught that it's not. So we worry.

Has God allowed something to get past Him? No. God is sovereign, and He can make even the suffering that comes from the illness ... and ultimately from the fallen world ... and make good come out of it for those who love Him. If we repent and reach out for grace, step by step the peace will come.