Monday, December 27, 2010

Proceed as the Way Opens

Proceed as the way opens.  It's an old Quaker saying.  People in the mental health community, particularly caregivers, tend to spend a lot of time banging their heads against stone walls.  Recently, this old Quaker proverb has come at me again and again.  This kind of synchronicity is always a sign to me that God is trying to send a message.  So I am trying to force results a little less and follow an emerging path much more. 

Reflection is necessary to attain the discernment to do this, often accompanied by journaling.  Running your thoughts past a wise friend and Biblical guidance also are needed, especially when it looks as if you are about to make major life changes.

A while back,  I wrote down a list of five questions to ask myself daily to see how the way is unfolding.  Unfortunately, I didn't write down the source. This is not original to me, and, if you recognize it, let me know who came up with it. The five questions are:

  1. Where in this day did I feel the presence of God working in my life and in the world?
  2. What in this day seemed like it was a part of my leading?
  3. What made me believe that?
  4. How does that leading fit into my personal and spiritual life?
  5. What did I do today to feed my spirit or move me ahead on my spiritual journey? 
 See you on the way!

Friday, December 24, 2010

Are we there yet? Not hardly

So where are we in dealing with mental health and brain-based illnesses as we enter the 11th year of the 21st century? Pretty far from good, in my opinion.

The best single summary from 2010 is "Within Our Reach: Ending the Mental Health Crisis" by Rosalynn Carter, who has been a blessing to those with mental illnesses for 35 years. After giving some chilling facts about the number of mentally ill people in prison (40 percent of people with serious mental illness end up in contact with law enforcement and the justice system at some point) and what happened to the stabilized mentally ill after Katrina when they could not get their medicine (can you even imagine?), she ends with hope: research and recovery. Here's Rosalynn Carter talking more about this.

The National Institute of Mental Health reports that 95% of what we know about the brain was discovered in the past 20 years. Hopes for a single-shot cure for some of the illnesses have deteriorated in recent years, but the research is pointing the way, especially toward early discovery and intervention to prevent the most severe brain damage.

In that light, the journal Biological Psychiatry has reported that simple brain scans can help to predict the onset of schizophrenia in people ages 16 to 25 who have no symptoms but do have a family history of the disease. Schizophrenia, which affects 1 of every 100 people, is associated with a dramatic reduction in brain tissue. Everyone has brain tissue shrinkage beginning in early adulthood. (Surprise!) But the people who will eventually get schizophrenia have this shrinkage at an accelerated rate, concentrated in the parts of the brain that control personality, decision-making and social behavior.  More about this is found here.

So, if you or your children are at risk of schizophrenia, you apparently can now find out whether it is en route. (Frankly, I'm not real sure that I'd want to know.)  On the positive side, early knowledge can lead to early intervention . Young people who are treated immediately during their first psychotic episode generally respond and some never become ill again.  The longer it goes, the worse it gets, evidently. So, on that cheery note ...

Rosalynn Carter closes her book by talking about the true needs of the mentally ill: a home, a job, a friend and the respect due them as human beings who have, through no fault of their own, a serious illness. These things bring, to borrow a phrase, the audacity of hope. With this, people with mental illness can participate in their own recovery. Hopefully we won't have to wait until the 22nd century to see it happen.

Sunday, December 12, 2010

Advent Reflections: Learning Patience

Leaping into the Christmas spirit ... sometimes even before the Thanksgiving meal ... robs the soul of Advent, the season of waiting. This is a particularly appropriate time for those of us who take care of people with schizophrenia and other disabilities. We are learning patience the hard way.

Wikipedia says patience is studied as a "decision-making problem," both in evolutionary psychology and cognitive neuroscience.  Do you get your small reward in a short time or hold on to get your bigger reward after a longer time? To me, patience is what you develop when there may not be any  reward at all. At least in this lifetime.

If you believe, as I do, that the purpose of suffering is to make you more like Christ ... then you look at the lessons of waiting in this Advent for signposts of how to grow. Clearly my tendencies to sarcasm and snarky remarks are not part of the improvement plan. I am not at my best in Advent.

One of my Advent books is "Living in Joyful Hope" by Suzanne M. Lewis. She remind us early on in her wonderful meditations that Advent began when God was "not confined by limited possibility" and sent an angel to speak with an impoverished young woman in backwoods town.  The angel's message was of a miracle that would involve, in the end, terrible suffering.

We don't know why things happen. We don't know why some people get well, sometimes miraculously, and others do not.  We do know, as I am frequently reminded in my prayers, that not one single prayer, not one act of love, goes wasted. This Advent, again, we are waiting.

And the miracles do come. We were nearly killed last night when my husband pulled out of the church parking lot in front of an oncoming car. I'm still not sure how the car missed us. And a message that a healing would take place turned out to be for my husband and me, rather than for our children. Much appreciated, but I still want the children healed.

So we are waiting.  In joyful hope, as much as possible.

Sunday, December 5, 2010

Dialectical Behavior Therapy: One Earth-Shattering Crisis at a Time

"Just take it one gigantic earth-shattering crisis at a time."

- A plaque in our bedroom

As we recover from yet another crisis at our house, my husband and I are practicing mindfulness. You know: Stay in the moment. You are OK right now. Breathe in, breathe out, move on, as Jimmy Buffett suggests in one of my favorite songs. Adding mindfulness to our toolbox of coping skills has been a blessing, and it's certainly been supported by our centering prayer practice and the gifts of recovery.

What I didn't realize until now is that mindfulness is also a very important component in a useful new therapy for people with bipolar disorder, borderline personality disorder and other conditions that result in dealing with very intense emotions. The therapy is called Dialectical Behavior Therapy. I'm reading a workbook about it ... basically because I bought it for someone else who doesn't want to read it. (Yes, I am caregiver in recovery for co-dependency. Why do you ask?)

"Don't Let Your Emotions Run Your Life: How Dialectical Behavior Therapy Can Put You in Control" by Scott E. Spradlin is a solid self-help workbook. My friends who are psychiatrists and therapists would be sure to point out that a workbook does not therapy make. But it's still interesting to me that observing and describing emotions in a nonjudgmental (i.e. without self-loathing) manner can help people who are predisposed to be overwhelmed by them.

The workbook urges us to let go of worry thoughts and "shoulds/musts/have tos." Just notice the thoughts and the feelings. Then focus on one activity, thought and feeling at a time. It says, "Do you best to handle the things that come your way, using your skills wisely and giving each activity your best shot."

That's good advice not only for people whose strong emotions tend to envelope them in crises, but for those who find themselves repeatedly cleaning up after them. 

Sunday, November 28, 2010

Keep Calm and Carry On This Holiday

Keep calm and carry on. That phrase apparently appeared on a rarely used poster that the British government developed in 1939 as it faced the real possibility of invasion from Nazi Germany. Now it's slapped on everything from t-shirts to necklaces. Why is it popular again now? Maybe we all feel like we're on high alert all the time. That's certainly true when you are a caregiver. 

You can't be calm when you are rushing about multi-tasking for all you're worth. The slogan, to me, is an invitation to be a little more sane than that.  To slow down, be more conscious and get more done.

The call to slow down appears many places ... everywhere from Christopher Richards' site  to Bill Hybel's great book, "Too Busy Not to Pray: Slowing down to be with God."

As the year winds to its conclusion, we may find the forces that want us to speed up, speed up, speed up pushing even harder that usual.  So how do we stay slow enough to stay calm?

Richards urges us not to try to slow down quickly.  Even finding one special hour a day ... a slow hour ... can be a start. He notes that this was originally what a lunch hour was for, but all of us who eat over a keyboard know that this has changed.  Maybe slowing down will improve the quality of our thought and our work. Maybe this could be an early Christmas present to ourselves: actually taking a slow hour every day.

For Christians, slowing down has become more of a clarion call over the years as pastors point out the devastating impact of excessive work on families and lives. And then there's this: You can't have a strong relationship with God if you don't spend any concentrated time with Him.

Hybels begins by pointing out the importance of acceptance that an authentic Christian needs to protect his or her time to do God's will.  He suggests taking the time to begin a three-step process:  journaling, writing down your prayers and listening to God. This, too, can be an early gift. 

Slowing down brings calm and teaches patience. Caregivers of people with mental illness need that in abundance. The wonderful book, "Change Your Brain, Change Your Life" by Daniel G. Amen, M.D., also suggested that slowing down, doing breathing exercises and having minute vacations with visualizations, will help the parts of the brain, such as the basal ganglia, where fear and anxiety are sparked. 

So take a step to keep calm and carry on.  You may find a source of strength that you didn't expect.

Friday, November 19, 2010

Holidays When the Relatives Really Are Crazy

The holidays are just about here. For a caregiver of a mentally ill person ... especially the female type ... this means creating an atmosphere of joy and delight in an environment of darkness and despair. It means creating a complicated, great meal while dealing with the impact of additional stress on the family. It means making the best of things, even when the best is painful indeed.

In his post "Family Caregivers: The Silent Safety Net" on Huffington Post, Joseph Nowinski, PhD, notes that families today are overextended even without the issue of caregiving. "As lifestyles become progressively more squeezed by the need to shoulder added responsibilities, families can begin to fray around the edges," he writes.  And how.

Lots of us are in that position.  In fact, Nowinski begins his article by quoting that great mental health advocate Rosalyn Carter:  "There are only four kinds of people in the world - those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."

So how to deal with the holidays? Just realize that the unrealistic expectations of Joy, Joy, Joy can make things a lot worse for you and your loved one.  The stress can make your loved one have more symptoms, and that can make you even more anxious. I've only found one source of tips: a good book called "When Someone You Love Has a Mental Illness" by Rebecca Woolis. Here are some of her ideas, mingled with mine:

  1. Accept this ain't gonna be pretty.  If you can get rid of your unrealistic expectations and be honest with your loved one and all the other family members, it will go better.
  2. Hey, it's a good excuse to keep the unofficially crazy family members away.  You want a small gathering of your own family.  Period. Otherwise it's too stressful for your loved one.
  3. Keep it short. Keep it informal.  If you have to do the Big Family Thing, let your loved one stay home. Big groups are too much for your loved one, especially when you have to Put On a Happy Face. And do your own celebration. 
  4. If any of your extended family members really want to see your loved one, they know your phone number and where you live. Something private is better.  And try not to be bitter if no one asks. (There's a reason God chose you to be this person's lifeline. Not everyone can deal with this.)
  5. The best answer I've found to the question ... How is he? ... is "About the same." That's tough enough for you to answer.  So please don't put your loved one in a situation where he or she has to answer the question.
  6. If you are having an event at your house, discuss it in advance with your loved one so he or she knows what to expect. Accept his limits.  Accept her choices. Acknowledge his feelings. 
  7. If the person wants to be more visible during the holiday, brainstorm some things in advance.  What will he say when asked how he is? What will she do during the gathering? Is there a quiet place to retreat if needed?
  8. Tell the person whose home you are visiting what you may need in advance.  Please don't put yourself in a position ... helping cook at someone else's home, for example ... where you can't leave with little notice. If you are stuck, have someone ... a sibling or spouse ... available to get the person home if needed. 
  9. All your great preparation may result in your loved one refusing to participate at the last minute. And that's OK. 
If any of you have any other ideas, I'd love to hear them.  Good luck.  God appreciates you, and so do I.

Sunday, November 14, 2010

Helping the Hopeless

Let there be hope.  It's one of the essential elements for mental health.

And so it's reasonable that hopelessness and helplessness are a struggle for people who are mentally ill.  When you are working or living with a person who is hopeless and helpless ... who can see nothing beyond the current pain of their lives and who thinks that he or she has no power whatsoever to change things ... it is very difficult and painful for you as well.

I recently attended a training by my church, Vineyard Columbus, on providing support to people in pain.  The first step in helping the hopeless is making sure that the person is not at immediate risk of suicide. If you have any doubts, ask: Are you thinking about killing yourself? Do you have a plan? If the answers to both are yes, assess whether they have the means to do so.  If that answer is yes, call the Suicide Prevention Hotline or 911. Or get someone to help you get the person to the hospital emergency room.

To help someone who is hopeless but not at risk of suicide, attitude is essential. Taking a superior tone (offering real or implied criticism or acting holier than thou) just makes things worse.  Instead kindness is the path. You may not agree with what the person says but you can feel for them.  Vineyard also suggested determining whether the hopelessness is situational ... due to an event that must be grieved, for example ... or a long-term habit of mind. Helping the person toward counseling in either event is good.

When the helpless person is a family member or friend standing in front of you,  these ideas may help:
  • Make a plan of something to do today.  It can be very simple. Getting out of bed and taking a shower is a start.
  • Help them come up with a safety plan that includes who to call when they feel terrible.
  • Help them get to a support network and/or grief counseling.
  • Pray for them.  If they have faith, help them to pray appropriate Psalms that deal with hopeless feelings. 
Above all, keep your own hope. Remember: When the car runs out of gas, it stops. You must fuel yourself with hope by keeping yourself healthy and exercising your faith. Stay close to God. Helping a loved one who is hopeless is incredibly draining and scary, too. You need to stay plugged into God as the Source of all hope. 

Monday, November 8, 2010

Practicing the Breath Prayer

The breath prayer -- one way to follow the practice of praying without ceasing -- is also a way I've maintained some semblance of sanity and faith in the bad times.  It's so simple, but so profound.

The first person who actually suggested developing a breath prayer to me was a Hindu. He called it a mantrum.  It worked so beautifully for me that I was pleased to later find out that it is an ancient Christian tradition as well. It is basically a short prayer sentence that you mentally recite as you breathe in and out.

It's so easy to do.  You pick out a short prayer, and soon using it in your daily life becomes pretty natural and routine.  When I wake up at night, the breath prayer is the first thing that comes to mind.

Perhaps the most famous version is the Jesus prayer, which can be traced back to the sixth century: Lord Jesus Christ,  have mercy.

Some people feel that you can "discover" your own breath prayer by ... amazingly enough ... getting quiet and praying about it. Others develop their prayer by imagining a conversation with God, asking for what they really want, and combining that request with their favorite name for God (as in "Jesus give me peace" or "Father show me your love.") You can create a breath prayer out of a favorite piece of Scripture, or just pick a classic like "Come, Lord Jesus."

My breath prayer  is "Come, Holy Spirit," which invites the Holy Spirit to control my mind (such as it is these days.) It's four syllables, and I think it would be tough to go beyond six to eight.

Once you've picked it, practice it.  Say it as you breathe while you are walking or waiting in line. Try it when you are agitated and when you are enjoying the beauty of nature.  And say it as you are going to sleep, after you've figured out five things you are grateful for.  It is truly restorative. A breath of fresh air, no less.

Friday, November 5, 2010

Are you all right?

Staying sane when those in your house are not ... literally ... can be one of the biggest challenges of taking care of people with mental illness. Yes, it's possible.  But you also can end up with the old drop-the-frog-in-cold-water-and-turn-up-the-heat syndrome.  So it doesn't hurt to ask: Are you all right? 

Are you literally feeling sick to your stomach when you have to deal with your loved one with mental illness?

Are you lying about what's going on in your house? I know that many, if not most, people choose to conceal the severity of what they go through.  But if you are lying to cover up scary behavior or conceal violence that is taking place, you need to talk to someone whose judgment you trust about the situation. I also become very concerned when I hear that someone has not told an accountability group ... like a small group ... about the situation at home.

Are you getting isolated?

Are you making decisions from a place of fear or guilt? 

Are you showing symptoms of depression? (This could be sleep issues, gaining or losing weight, losing interest in your favorite activities or even having your own suicidal thoughts.)

We all know that we can't change the person with mental illness.  But we do have the power to change the situation we are in by changing ourselves: taking care of our health, taking much of our own lives back and getting off the roller coaster. So keep an eye on yourself.  If only because you know your own mental health is critical to your loved one's life.

Sunday, October 31, 2010

10 Ways to Deal With Anxiety

Dealing with fear comes with the territory when you are a caregiver of a person with schizophrenia, bipolar disorder and other severe mental illness. Last night, my husband and I were at our church, Vineyard Columbus, listening to Pastor Rich Nathan's teaching on "wrestling with God," As my husband said, Rich's words, in effect, hit him over the head with a two-by-four. And he wasn't the only one.

It's easy to be anxious and scared when dealing every day with a loved one stricken with these awful diseases. I put together this list of 10 ways to deal with anxiety several years ago, after another two-by-four experience during a teaching by Lee Campbell at Xenos. I refer to it often, and I altered Item No. 1 last night.

1.  The huge problems in your life are not problems with people. They are problems with your relationship with God. Ask for the gift and grace of enough faith to hand it over and feel peace.

2. Accept the circumstances God allows in your life.

3. Don't think more of yourself than you should.

4. Don't demean people, even when they seem to be making your life miserable.

5. You really can't control anything except yourself.  (And even that can be iffy.) Worrying is not a productive activity.  Let it go.

6. Take every concern to God specifically.

7. Practice the presence of God in your everyday life.

8. Practice gratitude and thanksgiving. Dwell on your blessings.

9.  Focus your thoughts on whatever is true, honorable, pure, lovely, of good repute, excellent and worthy of praise, including the people in your life.

10.  Have confidence in God and encourage others to feel the same way.

Tuesday, October 26, 2010

Time to Get Loud

Sunday's multi-story report in the Columbus Dispatch, an Illusion of Treatment, demonstrated how broken Ohio's mental health system is and how it has destroyed lives.  My family is among those on an 8-month waiting list to get a psychiatrist who accepts Medicaid.  We've lived the horror story of trying to get care before the Medicaid, so I'm just grateful that a) we now have it and b) we have the money to pay a psychiatrist who does not accept insurance to get the prescriptions while we stay on the waiting list.

Ohio, home to 418,000 citizens with serious mental illness, is among the 10 worst states for mental-health budget cuts. And it is obvious everywhere. In a letter sent to its known advocates, NAMI Ohio points out:  "Ohioans would never tolerate this sort of heartless disregard of individuals with other serious debilitating brain illnesses such as Parkinson's or Alzheimer's. We at NAMI Ohio believe that the only reason we allow individuals with severe and persistent mental illness to be treated in this fashion is because voters are not aware of what's happening." 

Well, that, and the fact a lot of people don't care.

NAMI has asked us to do something:  Write a letter to the editor. Ask people running for office what they plan to do to fix this. Email the article. In short, "keep the issue alive." Because people are dying here.

I'm reminded of the early days of AIDS when Larry Kramer and others in New York insisted that people needed to get angry and ACT UP to get the attention the problem needed. And, frankly, advocates seeking funding for other illnesses are doing a better job at drawing attention to themselves.  (Pink ribbons, anyone?)  It is time to get more organized, time to get louder. Because we're running out of time. Again: People are dying here. 


Wednesday, October 13, 2010

Mental Health Secrets and Statistics

It costs billions of dollars every year and claims a life every 30 seconds.  It is more common than cancer, diabetes or heart disease.  But mental illness still leads a secret life because so many people keep the problem to themselves.

Because I've always been open about my family's struggles with mental illness ... frankly that's one way I keep my mental health in shape ... I know how secretive others can be. After talking about our family's situation in a meeting or at a party, I'm routinely pulled aside later or emailed the next day by someone who is facing the same situation.  How common is mental illness?  Here are some statistics from the World Health Organization and National Institute of Mental Health:

  • An estimated 26.2 percent of Americans age 18 and older have a diagnosable mental disorder every year. 
  • About 6 percent of Americans have a severe mental illness, including 5.7 million with bipolar disorder and 2.4 million with schizophrenia. (Worldwide, 154 million people have some form of depression and 25 million have schizophrenia.)
  • Mental disorders are the leading cause of disability in the United States and Canada.
  • More than 90 percent of people who commit suicide have a diagnosable mental disorder. Worldwide 3,000 people commit suicide every day.
  • As many as two-thirds of people with mental illnesses do not seek treatment.
  • The cost of mental illness to the U.S. government is estimated at $150 billion a year for the costs of social services, disability payments, lost productivity and premature mortality.
  • In the United States, fewer than 55,000 people are getting treatment in psychiatric hospitals. Meanwhile nearly 500,000 men and women serving time in prison have diagnosable mental illnesses.
  • About 40 percent of the homeless are mentally ill. 
Sounds like something we should be talking about, doesn't it? 

Sunday, October 10, 2010

When You've Had It

The suicide of a Rutgers student who was incredibly abused online by a heartless roommate has reopened many conversations about bullying and despair. One hundred percent of the children and teenagers I know who have struggled with mental illness have been bullied ... and each one has dealt with despair. Most every caregiver of someone with mental illness also has had many long nights of anguish and despair.

One powerful response to recent suicides from the Gay and Lesbian community is a program called "It Gets Better." Tim Gunn of "Project Runway" recently posted a very powerful message about his own attempted suicide at age 17. You can watch it here

In the message he mentioned that people in despair cannot overcome it alone. That prompted me to think about God's reaction to despair, particularly the story of the day that Elijah got fed up with the strain of his life and decided that he wanted to die. That story is told in 1 Kings 19. After a day of literally running for his life, Elijah sat down under a juniper tree and prayed, "It is enough. Now, O Lord, take my life."

The reaction of God is telling because it shows that he is not harsh or judgmental, but merciful, to those in despair. As Elijah slept, an angel arrived with food and water.  After Elijah had eaten and slept, he took a long journey to have a face-to-face with God. And in that famous passage, Elijah waits in a cave through a windstorm that broke off rocks on the mountain (for God was not in the wind), an earthquake (for God was not in the earthquake), and a fire (for God was not in the fire.) Finally, he heard a gentle breeze, wrapped his face in a cloth and went out to talk to God.

This story is one of the accounts of God's mercy to those in despair recounted in a good book called "Why Do Christians Shoot Their Wounded?: Helping (Not Hurting) Those with Emotional Difficulties" by Dwight L. Carlson, M.D.

The main point: God is always on the support team for those in despair. He wants us to take physical and emotional care of ourselves. And he is there like a gentle breeze when we need to talk. He loves us all: gay and straight, ill and healthy. 

Sunday, October 3, 2010

Life Support: Stop Walking on Eggshells

Need to take your life back? One of the best books of practical advice I've found is "Stop Walking on Eggshells" by Paul T. Mason and Randi Kreger. The authors focus on Borderline Personality Disorder, but the advice is good for ANYONE who is feeling overwhelmed by another person's behavior.

You start by asking yourself:  Are you being a sponge (soaking up the other person's pain) or a mirror (reflecting reality back to the person)?  The advice about improving communication is particularly good.

You must not spiral into another person's distorted world, but you still can listen carefully to detect what the person is really upset about. It's hard to be verbally attacked for a delusion, but the pain and fear underneath that attack are real.

While the person's feelings may not make any sense to you, they make sense to them. Don't judge. Don't trivalize. Don't be condescending. Use active listening skills to validate the feelings.

Still you must know your boundaries ... what you will and will not tolerate.  Stay consistent, no matter what. Research shows that inconsistent response to a behavior actually makes that behavior more persistent than even rewarding the behavior every time does.

When things need to change, make specific requests in simple language, as in: "I want you to stop hanging up on me and then immediately calling me back when we are talking on the phone" rather than "Stop being so disrespectful."

If you feel helpless, get some help yourself from a counselor.  Together you can work out responses to difficult situations. When my daughter was very ill with juvenile bipolar disorder, I had my own therapist. She was a great gift in my life because she understood that my daughter's illness and could see difficult situations with a compassionate outsider's viewpoint.  That gave me insights and ideas I would not have had otherwise.

In effect, you are learning to love the person while still being loving to yourself.  It will make both of you better. 

Sunday, September 26, 2010

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.  

Tuesday, September 21, 2010

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

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.  

Sunday, September 19, 2010

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. 

Tuesday, September 14, 2010

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. 

Sunday, September 12, 2010

"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. 

Sunday, September 5, 2010

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.

Sunday, August 29, 2010

Life Support: "A Balanced Life"

Life Support will be a recurrent feature of this blog offering ideas for resources ... good books, movies, anything to help. 

Tom Smith's book, "A Balanced Life:  9 Strategies for Copying with the Mental Health Problems of a Loved One," is a good place to start. Since I have been dealing with children with mental illness for a couple of decades, the strategies seem pretty sound.  They are:

1. Help them get and stay on medication.  (Sound easy, but it's not.)
2. Urge them to maintain a supportive relationship with a counselor or therapist.
3. Learn as much as you can about the illness.
4. Help them to develop healthy self-esteem.
5. Accept mental illness as a fact of love for your loved one, even if it is not their entire lives.
6. Take care of yourself.  (Eat right. Exercise. Deal with your emotions. Make sure you have a life that you return to before and after the inevitable crises occur.)
7. Get a network of support ... family, friends or a formal group.
8. Identity the early warning signs of a crisis and act before it becomes an emergency.
9. Acknowledge your dependence on God ... he says Higher Power, I say God ... and seek His guidance.

Tom's advice comes from pain.  His daughter did not survive her bipolar disorder.  In her honor, her family established the Karla Smith Foundation.

Tuesday, August 24, 2010

Welcome to All God's Caregivers

The only people who understand caregiving are those who are caregivers. This is particularly true when you are a caregiver to one of your children, parents, siblings or others who have a mental illness. 

I know.  My son has schizophrenia, and my daughter suffered as a child with juvenile bipolar disorder. I'm here to share my journey with you ...  so no one has to travel alone.