Sunday, January 30, 2011

When Your Child or Teen Has Mental Illness Part 2

It's easy to forget how hard it is. When a mother (and it's always the mother) who has a child with a mental health issue appears at my support group, it all comes flooding back: the desperate search for ideas and answers, helplessness, determination, fear and hope in the face of constant criticism. 

Luckily, I wrote a lot down.  Here are more lessons learned from raising a child with a diagnosed mental illness:
  1. Let her do as much for herself as she can. At the same time, watch carefully to step in quickly when needed.
  2. Establish a stable structure with a few simple rules in writing. Set up the consequences for violating the rules before the violation takes place, if possible. When your child is well enough, use negotiation and ask for input into the rules.
  3. When what you are doing isn't working, change it. This is particularly true regarding arguments and confrontations.
  4. Think before you speak.
  5. Choose your battles carefully.  Depressed children and teens can only work on one improvement at a time. If you insist on getting your own way all the time, your home will be a battlefield. 
  6. Keep your marriage as stable as possible or make the divorce as civil as possible so you can talk things out to always present a united front. 
  7. Don't take hateful words personally.
  8. Recognize agitation and allow the child or teen to exit from the conversation when it is occurring. 
  9. Ask her if she wants your advice before you give it.  Try not to talk too much because she stops listening if you do.  (By the way, this also is a good rule with all young adult children.)
  10. Make your requests in a positive manner with a pleasant expression on your face.  Accent positive feelings, and be specific, as in "I would feel much better if you would ..."

Sunday, January 23, 2011

When Your Child or Teen Has Mental Illness Part 1

For my own mental health, I kept a list of things I learned as the mother of a young girl with juvenile bipolar disorder, skewing toward depression. She was one of the first children in the world diagnosed with this mental illness, and thus, an experiment much too often for my peace of mind. I had no peers that I was aware of, anyway.

Many, many children  today deal with depression, and many, many people, including a lot in the school system, still have no clue how to deal with it. I forgive people relatively easily. But I still honestly hate a handful of teachers and principals from that period for what they did to my child. 

Here are some of the truths I discovered:

1.  Separate the child from the symptoms. Your child would like nothing better than to be a happy, fulfilled person. Learn the symptomatic behaviors, and don't take them personally.  Try to view the situation just as you would if your child had a stomach virus. You will have to clean up the vomit sometimes. At the same time, love your child as she is, not as she used to be or as you hope she will be.

2. Take it one day at a time. When the day is done, reflect on what you and your child did right. Practice gratitude.

3. Treat your child with respect. Remember: Many people will let your child know that they think that she is a failure every day.

4.  Be realistic.  A depressed teenager will not get straight As or do chores with a smile.

5.  When you speak in an angry manner, a depressed person will only hear your anger. He or she seldom gets the point you want to make.

6.  Make sure that there is fun in your relationship with your child. (This is why I have a huge collection of seasonal decorations. We celebrated everything.) 

7.  Take breaks away from your child when you are upset. Pace yourself. This is a marathon. You can only offer long-term support if you protect your relationship with your child and take care of your own health ... mental and physical.

8. Look for and comment on even small signs of improvement. One symptom of depression is not being able to remember the positive, so stress it.

9. Develop realistic goals, but don't trash her big dreams. Try to help her understand that small steps every day are important to working toward big goals.

10. Acknowledge the strength, courage and perseverance you see in your child every day. Your child's life is much more painful and difficult that most children's and teenagers' lives.

Sunday, January 16, 2011

Arizona Aftermath: With Eyes Wide Open

For caregivers of people with schizophrenia and other mental illness, the shootings in Tucson last week were just another reminder of how bad things can get. We know little of Jared Loughner and less about his parents, who lived with him. We do know this: Nearly three million Americans have schizophrenia, and surveys vary in what their actual rate of violence is.

The May 2009 issue of the Journal of the American Medical Association reports the latest I could find: The increased risk for violent crime associated with schizophrenia is largely due to the subgroup of patients who are substance abusers. People who had schizophrenia and substance abuse problems were four times as likely as the general population to have a violent-crime conviction.

Whatever problems there are usually happen at home.  A 1986 NAMI study found that 38 percent of families reported that their ill relative had been assaultive or destructive in the home at least once. How often the police were called, the study does not say.

Let's be honest here. A lot of people with schizophrenia who are not in treatment are self-medicating and have substance abuse problems.  Getting help for them is terribly difficult, even when you are trying very hard, because our mental health system is broken.

We also know that Pima Community College told Jared Loughner's parents in September that he could not return to school until he had a letter from a psychologist stating that he posed no danger. The New York Times reported Friday: "No record of Mr. Loughner seeking or receiving mental health care has surfaced."

That really doesn't mean that his parents did nothing because of the waiting lists involved in getting psychiatric help.  For example, when my son's psychiatrist suddenly closed his practice, the waiting list to see the psychiatrist at the community mental health center was eight months long. We were able to get medicine only by going to a psychiatrist who does not accept insurance of any kind.  For some, that's no option. The list to get a psychiatric evaluation may be just as long in Tucson.

Nonetheless, I feel strongly about three things. 
1.  When you are asked by an outsider ... a school, a workplace ... to get your loved one a psychiatric evaluation, move heaven and earth to do so. Go to a NAMI or Mental Health America support group to find out the tricks for getting it done in your area.

2. Become the Gladys Kravitz of your family. Snoop. Set up a Google alert in the person's name. Search YouTube. Search periodically for alcohol, for drugs, for weapons, for bizarre writing.

3. Fight to change the privacy laws to require colleges and universities to notify parents about troubling behavior by young adults. Schizophrenia and serious bipolar issues often begin in the late teens and early 20s. I continue to believe that the Virginia Tech shooting would not have happened if someone had called Cho Seung-Hui's parents to tell them how he was acting. Because Virginia Tech had Cho institutionalized briefly, it's clear that his parents had some idea that he was sick. And they seemed like responsible people in the aftermath.

That said, I feel very sorry for Jared Loughner's parents. Parents of 22-year-olds who are acting oddly often think it is a phase or a drug issue. And it's hard for a person developing paranoid schizophrenia to tell parents and others what is happening to them because ... surprise ... they are paranoid. Still, violence is not a common symptom.  The person getting ill is much more likely to hurt himself than to hurt anyone else. We need an accessible system of care. And we need it now.

Sunday, January 9, 2011

What Ohio's Mental Health System Needs Now

It's been a week in which a homeless man in Columbus with a dream voice turned into an instant celebrity. A week in which a person who appears to be psychotic took Sarah Palin at her word. A week in which Ohio welcomes a new governor who has a brother with a serious mental illness. 

The mental health system is this country is broken. Recognizing that Ohio is beyond broke, NAMI Ohio has called on Gov.-elect Kasich to provide sufficient funding for community-based care for Ohioans with severe and persistent mental illness.

"Not only is this the compassionate thing to do, it will save money by reducing the use of expensive and inappropriate institutionalization such as hospitals, nursing homes, prisons and jails," NAMI writes. The budget platform that NAMI endorses has five components:

  1. Ohio's Medicaid program discriminates against people with mental illnesses because it doesn't pay for mental health services the same way it pays for physical health services. SOLUTION: Move the responsibility for paying Medicaid to the state so local communities can concentrate resources on people with the greatest need. 
  2. Ohio is in violation of the Mental Health Act of 1988 because it does not use the dollars saved by moving people out of state hospitals to support them with community services. SOLUTION (well, sorta): Keep the current level of funding in the state fund for community mental health services. 
  3. Psychotic people don't get well when they are homeless, hungry and alone. SOLUTION:  Include language in the state statute directing local board to provide critical services to adults and children with chronic mental illness before they can spend state or local dollars on less critical services.
  4. Access to medication means the difference between sanity and insanity, life and death. SOLUTION: Prohibit limited on access to mental health medications for people with severe, persistent mental illness.
  5. Because there are not enough beds in Ohio for psychiatric hospitalization, patients are released before they are stable and not linked to community services. SOLUTION: Provide incentives to hospitals that accept Medicaid to provide more psychiatric beds. Prohibit state hospitals from releasing unstable patients and for them to link patients to community services before release.
Ohio dealt devastating cuts to mental health services last time. Gov. Strickland says he lost sleep over it; others lost family members over it. Let's hope Gov. Kasich, who should know better, does better.

Sunday, January 2, 2011

It Takes a Competent Village

The greatest blessing of 2010 was the end of my son's association with the overworked, exasperated (and exasperating) staff at a large community mental health center. He was finally able to transfer to a smaller, more effective center. Instead of a revolving door of case managers with wide variations in competence, he now has a case manager that I trust. That alone is a small miracle these days.

It takes a team to treat mental illness. The Canadian Psychiatic Association has this excellent article on who should do what in your Treatment and Support Team. Different health care system, though, so good luck trying to get all that support in the U.S. 

Our role as caregivers is to find the right people to be part of team (and then to pray that they don't change jobs every six months, which has been about our average.) Family members and good friends are also expected to:
  1. Pay when needed.
  2. Help the loved one keep appointments.
  3. Monitor medication.
  4. Provide information to the health care team that the loved one may not provide. The doctors may not be able to talk to you, unless you get a release, but you can always talk to them. Informing them about changes in behavior and medication compliance is essential for smart medical decisions. 
How you behave is also important. You are likely to get more help if you are pleasant and realistic. So be nice, be honest and be respectful of the team member's time.  Even more important, be informed. If you understand the illness and the system, what is and is not possible for the case manager, etc., to do, you'll be a better advocate.

Finally, family members  and good friends provide love that is unconditional and, if you can manage it, nonpossessive. This is tough for moms, as my repeated failures have proven. The rest of the planet will view your adult child with mental illness as an adult. You, as mom, will see him as your sick child, and it's a struggle to stop the mama bear within. Not only do you want to lash out at anyone standing between your child and proper care, you also want God to abandon the principle of free will just this once so you can manage your child's life yourself.

Nonpossessive love means accepting, respecting and supporting another person in a noncontrolling, nonpatronizing way. It means listening, even when things don't make perfect sense.  It means learning to communicate better. Above all, it means avoiding criticizing, diagnosing, advising and moralizing. It also means that you don't allow anyone to name-call, order, threaten or discount your child's problem.

Being part of the team does give you something to do if you are more of a Human Doing than a Human Being. But it's not easy.