If I’d Only Known

Like most Americans, I’m saddened by the tragedy in Arizona this past weekend. I’m praying for families who have lost a loved one, and for those who are injured and healing. Also, I’m specifically praying for the parents of the shooter, Jared Loughner.

My husband and I heard the news about the shooting later than most because weekends are a news-free zone. After reading some of the details, I told my husband, “This is a young man with schizophrenia.” I was later proven correct.

After these kind of events, there is an inevitable questions, “What about the parents?” or “Why didn’t the parents do something?” If the Loughner’s experience is the same as mine, they did try. Let me tell you about what happened in our family.

Our son was in his early teens when his behavior began to change. We sought help from our pastor, a child psychologists, and psychiatrist. Brains scans were done, along with complete physicals. We were told everything from we were bad parents to he was just a bad kid. Professionals told us that he had a brain anomaly or maybe mild seizures. But no one–NO ONE–mentioned a serious mental illness.

When our son turned eighteen, we could no longer compel him to doctors or therapy. Even though he was still living in our home and still on our medical insurance, we had no input. I couldn’t even call to find out when his therapy appointments were. It wasn’t until he attempted suicide when he was twenty that a diagnosis, a name for the bizarre behavior, was given. After his 72-hour hold at a psychiatric facility, he was released with a note to seek professional help. Period. End of story.

From the scant news reports it appears that Mr. and Mrs. Loughner were in the same situation. They were told of their son’s problems but were helpless to do anything about it. They may be saying, “If only we had known when he was a minor. If only we could have gotten him the treatment he so desperately needed.”

Burdensome medical health privacy laws prevent parents from helping their adult child get the treatment they need. Even though the college informed Mr. and Mrs. Loughner of their son’s problems, they could do nothing without his cooperation. Arizona, like other states, does have a law that allows the court to declare a person mentally incompetent, but winding through the system can take months. Law enforcement’s hands are tied unless the person proves to be a danger to self or others. Often by the time the danger is exhibited, it is too late.

Jared Loughner’s parents are devastated and hurting. Hurting every bit as much as those who lost a loved one. The Loughners have lost their son to a grave brain illness. He may never again be the little boy they raised. Blaming them serves no useful purpose. Changing the system might.

I don’t have any easy answers. It would be helpful if parents, or other close family members, had a fast track to the courts when their loved is in desperate need of help. Mental health professionals should be allowed to accept assistance from family members to provide necessary treatment.

Do you have any suggestions?

CBS News – parents “hurting real bad”

USA Today – parents devastated

Blue Christmas

The World Health Organization reports indicates that depression can be brought on by the change of season. It has been postulated that decrease sunlight may be one cause for seasonal depression, sometimes called Seasonal Affective Disorder (SAD). These seasonal patterns are also present in those with bi-polar disorder. More manic episodes occur in the summer during the days of longer daylight.

The Mayo Clinic and other health organizations also report depression during the holiday season (Thanksgiving through New Years Day) that has links to the stresses of the holiday. Expectations, financial pressure, and lack of rest are all contributors of the “holiday blues.”

If you have a loved with a serious mental illness, you probably deal with these stresses throughout the year. Trying to put on a happy face for an old-fashioned family holiday can add to your difficulties. You find yourself sad and angry during a time that we’re told is suppose to happy and fun for all.

Helping our loved ones cope with the holidays is one way to relieve the stress that can lead to holiday depression.  Self-care is important any time of the year. During the stressful holidays, it is especially important. You need to pamper yourself a little more.

Plan time for yourself. Put it on the calendar in ink, so you’re not tempted to erase it for yet another holiday event. It can be as simple as 30 minutes to walk through the park, go to a coffee shop with a good book, or have lunch with a friend.

Maintain your normal schedule. I know that is easier said than done. Do you normally go to church on Sunday then have lunch with your spouse? Put a big X on Sundays on your calendar. Don’t change that routine without consulting your spouse.  If your usual bedtime is 10 p.m., don’t be afraid to leave the party early. Let the hosts know how much you appreciated and enjoyed their event, but you need your rest to continue enjoying the holidays.

Go ahead and indulge . . . a little. While you want to maintain a healthy diet during the holidays, don’t let indulgences of the holidays cause you further stress. Have a piece of Aunt Rose’s mince-meat pie with whipped cream. It will delight her and make you feel better.

Remember the reason. Christmas is not about parties, presents, or pie. The word “Christmas” has its origins in Christ mass, meaning a celebration and worship of Christ. Remember also, the word “holiday” is taken from holy day, a day set aside for worship. When you put that together you have a day set aside to worship and celebrate Christ.

It may take a little extra thought, and go against what we’ve been taught about the holiday season, but taking care of yourself will help you enjoy this time of year. And you will be better able to help your loved one during the stressful times.

Other resources:

Mental Health America: Holiday Depression and Stress

WebMD: Coping with Depression During the Holidays

Related blog post:

Holiday Resources

Anosognosia – Not Home for the Holidays

A Phone Call Away

My son had been without medication for about a year. Despite that worrisome situation, he at least appeared to be stable.  Then the decline started.

This time it’s a slow setback, like lava moving down the side of a volcano. I know that at any moment it can burst into flames. So far, it hasn’t. I wait for the crisis phone call.

For some families, the crisis comes suddenly and maybe unexpectedly. Like it did for my friend, I’ll call Stephanie.

Stephanie’s daughter, Rosa (not real name), suffers with bi-polar disorder. After several years of trying to balance her medications, Rosa seemed to have found the right combination. She was living on her own, had a part-time job, and taking college classes. Rose was also active in the local NAMI chapter.

I saw Stephanie at the grocery store one day and commented how well Rosa had looked when I saw her at a meeting the night before. I told her that Rosa had asked me to go to a specific event with  her next week, and Stephanie countenance changed dramatically.

“What is it?” I asked.

“That’s not a good sign,” Stephanie told me. “When she wants to go there, she’s decompensating.”

I could tell from the look on her face and the concern in her voice that I hadn’t given Stephanie good news. Just like that, this family was heading to a crisis. Sure enough, two days later Stephanie called to tell me that Rosa was in the hospital. It had been two years since the last hospitalization.

I often warn family members that a crisis is only a phone call away. I’m not trying to be negative, just realistic. For some of our loved ones, stability with the right medication combination and support seems to last. For others, it does not. We never know what column our loved one will line up in.

Don’t be discouraged. Be prepared. Just like earthquake or hurricane preparation, you can better ride out the crisis when you know what to expect and how to handle it.

See “Stages of Coping.”

Recovery – New Research

As I read the National Institute of Mental Health’s (NIMH) recent research, I sighed, “It’s about time.” It’s about time to look at mental illness from a recovery standpoint. It’s about time to recognize that treatment needs to begin with the first symptom episodes. It’s about time . . . family members seemed to intuitively know this.

NIMH’s research project Recovery after an Initial Schizophrenia Episode (RAISE) is exploring the effectiveness of of early and aggressive treatment. RAISE examines an aggressive approach to early treatment at the first onset of symptoms. The researchers are looking at two different approaches that have the same goal: To lessen long-term lose of functional abilities. They are also seeking to disseminate the learned information quickly into community settings to make a transition from research to practice. (A summary of RAISE)

Just what is it that family members seemed to know that researchers are just learning?

First, early diagnosis and early treatment. It is still standard practice not to diagnosis any mental illness in early teens, even though symptoms may be pronounced and clear. For some mental illness, such as Borderline Personality Disorder, it is recommended not to give a diagnosis to a teen unless the symptoms have been present for a year or more.

In our family’s situation, by the time a diagnosis was given, the destruction caused by the mental illness had set in. Our son had also turned 18, and we were prevented by law from making appointments for him. He was too ill to decide for himself, but intervention wasn’t an option. How often we have said, “If we’d only known sooner.”

The reasoning is to not “stigmatize” a young person with a mental illness diagnosis. Too often the person is stigmatized by anti-social behavior and criminal record before a diagnosis is given and treatment started. Early intervention can help prevent destructive behaviors later on.

Second, families have known that recovery is possible. Sometimes that recovery requires more than a handful of pills and a once-a-month, 30-minute appointment. Recovery is person oriented; not method oriented. Recovery occur more often when it begins early and aggressively. The goal of getting this researched model into the community quickly will help get boots on the ground toward real recovery that leads to independent living.

Third, research needs to focus on a recovery model. Yes, it’s important to know why the brain operates the way it does. Yes, it’s important to know what medications may help. But, more needs to be done to promote recovery, not maintenance, as the goal for those suffering with mental illness. We family members want our loved ones well, not just medicated.

I applaud NIMH and the researchers (John M. Kane, M. D. and Jeffrey A. Lieberman, M. D.) for taking this bold and important step to promote recovery from mental illnesses.

Start Fresh

January is over, so it doesn’t seem like the beginning of the year any longer. Why would I even be talking about a fresh start? It’s never too late; you can start fresh, make new resolutions any time.

For many of us our resolutions have come, and gone. Each year on January 1, many of us decide to start fresh; we’re going to do things differently. We may have put on our list such things as less stress, more happy time, not get angry as much. That’s not to mention the more traditional lose weight, read more, or go to the gym.

Each year many of us hope and pray that our loved one will have a better year. Some of us may even resolve to do more to help—be more supportive or facilitate recovery. Maybe we even resolve to “help” our loved get treatment and medication, and “help” our loved one be well.

Jeremiah 29:11 begins with “I know the plans I have for you …” God has a plan for me and my loved one. I’m looking forward to the plan he has for me; but am I looking forward to the plan he has for my son? I don’t know.

Right now, I can see the plans God has for me–at least for the next few weeks. I don’t know what he has planned for my son, and that’s probably good. I can’t make my son change. I can’t make him be in treatment. I can’t make him do what is necessary to get his meds. He has so many wild ideas in his delusional mind. I can’t even make him hear or understand God’s plan for him.

So, what can I do? First, I can remember that God said he has a plan for me. That doesn’t mean there’s no plan for my son. It means my son’s plan isn’t mine. My focus needs to be on what God wants me to do. Sometimes that means just waiting for my son to take the next step.

Second, I can support my son in his positive efforts, while remembering I can’t change him. I can’t make him start fresh. Only my son can choose to make that fresh start.

Third, I can be there when my son has a full-blown relapse, and needs love and support. I can be there when his delusional mind has strange ideas. I can just be there.

My fresh start for the year? Do less, so I can do more. The fewer things I have on my to-do list, the better I’ll do each item. I will also take a fresh look at how I support my son. Ill or well, he will know he is loved—by me and by God.

It’s About You

One of the hardest steps for a family is accepting that a loved one has a mental illness. The next hardest is accepting that you are also a “victim” of the illness.

I don’t like using the word “victim;” it is such an overused word. Mental illness, like so many other biological illnesses, affects family members. As is often expressed, you are now heading to a new normal.

It’s not necessary, or desirable, to just “accept” the diagnosis. Surely you must come to terms with it by realizing there is a problem. Family members must move beyond acceptance to coping.

It is easy to focus on your ill loved one because it is new and your natural tendency, especially for parents, is fix the problem. Eventually the fixing will destroy you if you don’t take time for yourself.

Coping begins with self-care. Just because you become a victim of your loved one’s illness, doesn’t mean you have to be a hostage. You may have become a hostage if you feel as though you’ve lost control of your life. Now is the time to take back control.

Make time for yourself.

One of my first questions when our son was returning home after a suicide attempt was, “How do we ‘watch’’ him?” I didn’t get the answer I wanted, “You don’t.”

I was preparing to have a 24-hour watch, and doing it myself if I had to. That was neither possible nor practical. In the emotion of the moment, I wasn’t thinking; I was reacting. I didn’t, couldn’t, think about myself.

I later learned that I needed to get away. For the sake of our marriage, my husband and I needed time alone. For the sake of faith, I had to learn to trust God completely. After all it is only he who is in complete control of anything.

No matter how diligent you are, you will not be able to control your loved one or the symptoms of the illness. You can only control yourself. If you’re tired and emotionally drained, you’ll lose control.

Don’t focus your energy, or your life, on the mental illness

When my son was diagnosed my first reaction was to learn all I could about mental illness, and his diagnosis. Not just because I didn’t know what the diagnosis meant, but because I somehow believed if I had the facts, I had control of the situation.

My quest for information became an obsession. Each new tidbit led me on another rabbit trail. I let my work fall behind. I talked continually about mental illness to anyone who would listen. I spent hours on the phone trying to find the best treatment for my son. And, I formulated a plan for my son.

I really hadn’t gained any control over the situation. Further, I was drained. I was feeling pressure from an ever-growing to-do list. The focus of my life became mental illness as I kept looking for the one thing that fix the problem.

Maintain your normal routine.

Routine is stability for your ill loved one, especially after a psychotic break. It helps return to normal, albeit that new normal. If your routine is to get up early for a run, go. If your routine is dinner at 6 p.m, do it. If your routine includes coffee with your neighbor, have it.

If you adjust your routine to match the new normal of your loved one, you’ll soon be tired, depressed, and resentful. None of which will help you when you may be needed.

Find support.

There are many support groups, both in person and online, that are just for you. People who understand both the nature of mental illness and what you are going through.

We Christian have been taught that we aren’t suppose to put ourselves first. It is selfish and, well, un-Christian. After all, aren’t we suppose to put others first? Especially when someone is need. I don’t think Jesus taught us to neglect our basic needs.

Jesus knew the importance of taking care of himself—physical, mentally, and spiritually. How many times did Jesus go off alone, or with the three close friends? At Gethsemane he lamented that his friends couldn’t stay awake with him. (Matthew 26).

He was God incarnate, but still his human body needed time away to refresh and recharge to continue helping others. Jesus knew and demonstrated that he couldn’t take care of the many needs around him if he didn’t take some time for himself.

Having a loved one with a serious and persistent mental illness is a roller coaster at best. Even if your loved one is doing well, in recovery, and stable, crisis is at any moment. Crisis is only a phone call away.

We never know when our loved one will relapse. Sometimes, we can see some signs. Often we cannot. There is little preparation. If we haven’t taken care of our own needs, we won’t be prepared to take care of the emergency.

Anosognosia – Not Home for the Holidays

My son attended our family Thanksgiving gathering. It was good to see him; but that’s about all that happened.

He didn’t interact much, only responding when asked questions. Kept away from the crowd of people. Ate little. He was here, but he wasn’t.

It’s not uncommon for our ill loved ones to be mentally and emotionally separated. James Pavle, Executive Director of Treatment Advocacy Center, put it this way,

“There are many barriers to keeping in touch for those with severe mental illness.  . . . in these severe instances the term has a double sense: 1) physically separated from family and friends and/or (2) cognitively separated from reality by virtue of the condition anosognosia, or lack of awareness that they are even ill.”

Anosognosia is what separated my son from the family this year. He knows he has been diagnosed with a mental illness, but he lacks awareness that it is affecting his life and his relationships.

Xavier Amador describes this condition as “lack of insight” in his book I am not sick I don’t need help A book I highly recommend if your loved one doesn’t accept or seek help.

This type of separation is hard for families. We see the poor condition our loved ones are in, and there is nothing we can do. Sadly one of two things often happens.

First, we push; we badger relentlessly for them to do something, anything. We explain how their life would be better. We may even talk in glowing terms of another person who is in recovery.

Second, we ignore, or even reject, our loved one. More often the rejection is from family members who don’t understand the situation.

Neither of these is helpful. With the first approach, our loved one may avoid the badgering by cutting off contact. The second, well, no one wants to be around others who ignore or reject us. Our ill loved ones don’t either.

What can we do?

Accept that our loved ones cannot fully understand they are ill or recognize the symptoms. Think about it: If you don’t think you’re sick, you don’t think you need treatment.

Encourage any step toward recovery your loved one may take. Sometimes that won’t look like what we think recovery might be. But, any positive step is important.

Talk with other family members. Many of them who are not seeing the effects of the mental illness just don’t get it. They may not even after a chat, but it can lead to a little more sympathy with the situation.

Accept your loved one. No matter the illness, God has great plans for each person. Your loving acceptance can be the stepping-stone for your loved one to reach for those plans.

Pray. Not just for your ill loved one, but also for other family members to understand. Pray for God’s plan to be fulfilled.

Holiday Resources

How often do you enter November with vision of an old-fashioned, family holiday? “This year will be different,” you say to yourself and any family members who will listen.

I’ve given up this fantasy, and choose instead to be content with a Griswold Christmas. (If you haven’t seen National Lampoon’s Christmas Vacation, rent it now and enjoy the reality of the holidays. WARNING: Sexual innuendo and one instance of X-rated language.) The lowered expectations on my part have improved the season for me and my ill son.

But, what about other family members? Those who only come when invited for a family event. Those who expect everyone, including our ill loved one, to behave in a manner befitting a Curry & Ives scene.

Most of these family members just need to be educated on what the holiday social gatherings do to you and your ill loved one. They need to understand why expectations need to be lowered so all can enjoy the family time on their own terms.

I came across two resources that may help you with the holidays. These are resources you can share with other family members and friends, to help them understand that Mr. Curry, Mr. Ives, and Mr. Hallmark were presenting only a vision of holiday celebrations, not fact.

Mental Illness: Coping with the Holidays is from Mental Health Ministries. This downloadable pdf brochure tells why the holidays may not be holly-jolly and how to cope with it.

10 Tips for Surviving Thanksgiving with the Dysfunctional Family is a featured article in PsychCentral’s November newsletter. This newsletter also has an article of holiday blues. Both provide good and readable information and ideas.

It’s The Holidays, Again

(This is the beginning of a series about helping our loved ones and ourselves through the stresses of the holidays.)

It’s that time of year again: The Holidays.

The time from Thanksgiving until New Year’s Day is probably the most stressful period in America. Expectations are high; reality is low. The pressure to perform has become so great that many people are opting out.

Probably most stressful are the expected family gatherings. These events can be hard. Let’s be honest, do we really know all those cousins that we only see once a year? And, again being honest, do we sometimes just want to skip the whole affair?

If it’s tough for us, imagine for a moment what it must be like for our ill loved one. Strangers milling around, hugs and kisses from those strangers, and noise everywhere. Some of our loved ones just can’t handle so much input at once.

Then there’s the lack of understanding. Distant relatives often don’t understand what mental illness is. A holiday party is usually not the place to try and explain what it means for our son, daughter, brother, or sister to hear voices or to have unusual fears of people. Even the famous Monk has a hard time explaining to those closest to him why he must touch every parking meter.

One way you can help your loved one is by not forcing attendance at these events.  At the last minute, our son decided not to attend the family Thanksgiving dinner at his brother’s house. He said that he just couldn’t “deal with it.” So be it. He was more comfortable, and there was no holiday incident.

Allow your loved one to leave anytime during the party. Maybe a short visit with everyone will be o.k., but to sit down at the table with 20 strangers may be just too much to ask for.

Sometimes our loved one wants to be part of the preparation, but not part of the main event.  This is a good way to be a part of the celebration without having the stress of the family gathering or high expectations of the day.

Remember your loved one’s mental well-being is more important than a possible offense to a third cousin.