Not Losing Heart

AdVOca*CY . . . What you should know

2012-01-31T18:22:00.000-08:00

When your roller coaster of emotions settle, when you'vemoved from pulling your hair out, throwing your hands in the air, and cryingthrough the night there is a point in which you make a paradigm shift and movetoward advocacy.

Advocacy is simply offering support and championing alongwith your loved one for recovery. The way a family will advocate fortheir relative will look different. This is because each family's dynamics areunique. Why? Because not all brain disorders act a like and nor are theconsumers who are coping with the brain imbalance.

The National Alliance on Mental Illness (NAMI) presentsthree Stages of Emotional Responses in their 12-week classes. Briefly I wantto share these three stages with you.

Stage one feels like chaos and shock, it's the crying,pulling your hair out stage. What the heck is wrong with my son? Why are they behaving that way? That's not the person I know.

During this time family members need support,empathy, a prognosis, resources, and perhaps crisis intervention. We call stageone: Dealing with Catastrophic events.

Stage two feels like you've rolled into an ocean of grief,anger, guilt and resentment. Whose fault is it? How did this happen? Why us?

Duringthis stage family members need to keep hope alive, become educated, focus onself-care and so on. We call stage two: Learning to Cope.

Stage three, which I am talking about in this post is wherewe begin to understand, accept, and move into action. What can I do to make a change? How can I help with my wife's recovery?

This "dosomething" stage is when we move into advocacy. During this time thefamily seeks to restore balance to their chaos, and become a more activeparticipant in the journey to the family member's recovery.

Several Issues to Consider as an Advocate

As an advocate you will have some things to consider the first is, what are your resources, short term and long term? Meaning:

Finances—We were told our pockets will never be deep enough whenit comes to helping our loved one. Sobefore you go cash in your home equity, find other community resources, whichcan help them, and also help you feel as though you do not have to carrythe financial burden. Applying for SSI, Section 8, work programs etc. can assist youimmensely, even though you have to jump through some hoops and play the waitinggame.

Living arrangements—Making this decision depends on whetheryou feel safe and comfortable with your loved one living with you. Some choosenot and some do. Often we felt like a Jerry Springer home, but years later whenour son called crying and said, "Mom, I just wanted you to know I'm verygrateful that you and dad stuck it out with me. I wouldn't have made itotherwise," makes the heartache worth it.

Family and friend support—Not all family members and friendsunderstand the illness your loved one is struggling with. It's so important forall involved to be educated. Pick andchoose who will be the most supportive and understanding.It will takeeffort on your part to educate them, but having family and friends acknowledgeyour hardship, in a supportive way because they now understand, is encouraging.

Then you will want to evaluate what shape is your health is in?

Is your health poor, good, or excellent. This is soimportant, that is why our Family-to-Family support group advocates self-care.It is so easy to take care of others that we lose sight of our health and well-being.

Do you take care of yourself? Take a look at what you do for self-care. I wish I had donethis as I've developed issues like fibromyalgia and adrenal fatigue due tostress.

Once we've determined what shape our health is in, and whatwe can afford, we then need to decide what we are willing to do, and putboundaries in place.

Is your family willing to:

Pay for an apartment (or half if needed)
Have them live on the streets, via homeless shelters
Provide food and clothing
Go to doctor appointments
Pay for their health care
Drive them to doctor appointments
Help with attaining SSI and other community services
Being a payee representative or conservator
Managing their medications
Help with caring for children if needed
House cleaning

We might find hearing what an awesome job others are doing, causes us to feel guilty as we are unable toprovide the same care. Or we hear that a family refuses to allow their loved one to livewith them during their recovery because it is unsafe and stressful. Guilt sets inperhaps because we do not have the stomach to put our son/daughter or otherfamily member on the streets.

Remember every one handles a crisis differently. Some havegreat coping skills and others don't for whatever reason. What is right for onefamily may not be right for someone else. We have to soberly evaluate what wecan do or not do, and be comfortable with our choice as a family. And it cannot go without saying that has there is improvement or change in the person's behaviors, a family can always reconsider their rules or boundaries.

Therefore, entering into advocacy depends on a few issues

What involvement does your family member want from you?
How willing are they to allow you to be involved with healthcare issues?
How involved do you want to be?

We cannot advocate (be involved) with our loved ones care,if they do not want us to. However, being an advocate does not mean only theabove. We can also be advocates by:

Educating ourselves on mental illnesses and their causes.
Educating others concerning mental illness and theirtreatments (This helps to fight the stigma).
Volunteering for organizations, which help those coping withan illness, recover and find independence.
Provide finances for organizations, which are non-profit.
Blog your journey/experiences.
Show your family member you are trying to understand.

With the onset of our son's illness, before he fullyaccepted he was not well, I'd tell him bipolar is not his fault but hisresponsibility. I repeated this whenever the opportunity allowed me to. This, Ifelt, gave me an open door to advocate in a small way in that I would sharesmall snippets of what I was learning through my research on the Internetand in the NAMI Family-to-Family twelve week classes. If you haven't yet, Ihighly recommend you attend the nearest 12-week class as soon as possible. Youwill be glad you did. You can find more information at http://www.nami.org.

Our loved one needs us to be there in whatever possible waywe can. They will let us know what they need, or not; however, we can alwaysask. But nonetheless, making ourselves available, as we are able, as an advocate speaks volumesof care, support, and love.

Just a side note: sometimes our loved one does not want tohear what we have to say. I used to say to my son, hey Jason I have somethingimportant to discuss with you, let me know when you are ready to hear it. Thisalways peaked his curiosity, and he opted to listen right then and there.

Quoting from my July's 2011 blog, Don't Fix Me, Be My Friend,"Those with mental illness, no matter how severe, need someone or at leasthave the knowledge that there is a person concerned for their well being. Thatmight be a simple, I'm here for you or moving toward advocacy—navigating theroad to recovery. This all requires resoluteness and respect for theindividual, and I admit it's not always easy . . .."

Ad*VO*ca*CYequals offering support and championing along with your loved one for the recoveryof their mental disorder. Try to focus on what can be, rather then what isoccurring . . . the goal of advocacy is always toward the well being of ourloved one's mental health.

As you advocate understand that your loved one as to reshape their world, refine who they are and what their purpose is. That is not an easy task to do.

So roll up your sleeves, but on your hard hat, take a deepbreath, and remember—as we state in our support group meetings, "We willsee the individual first, not the illness." Now get in there and advocate to the best of your ability.

Please share how this post encouraged you . . .

Fourteen Fabulous Non-engagement Ideas to Incorporate when Your Buttons are Pushed

2011-12-02T11:58:00.001-08:00


I've had it with you!

What do you do when your buttons pushed? Do you engage,challenge, or lash out at the person pushing your buttons? Do you becomereactionary rather than thinking about what your response should be? Or are youlike me, you jump right into the bloody mess before you consider theconsequences. Most often, even with good reasons and intentions in mind, everytime I’ve engaged the outcome has been less than charming and only somewhat productive.

ENGAGING LEADS TO . . .

I find my “engagement” comes from my need to get my pointacross . . . and or to incur a resolution about an issue I see. But doing the same thing overand over and expecting my results to be different, as they say, is insanity.This creates a circle of frustration, which can spin out of control. This insanity is like a speeding locomotive on the wrongtrack, heading toward an oncoming train.

After our son, who is diagnosed Bipolar Mix, which means helives with depression and mania simultaneously—separated from his wife, hemoved back home. We had some ground rules; however once his illness was at itsworst those boundaries became a challenge.

A person with bipolar can become easily agitated, especiallyduring overwhelming stress. Unfortunately our son’s agitated states resulted inseveral holes in our walls, broken plants and pots, glassware and a few otheritems. I became disconcerted, disjointed, and discombobulated one day that our son put yet another hole in thewall during one of his episodes. My motherly instinct of “I’ll teach you alesson” blew up like a firecracker and I engaged.

That’s enough. I shouted. How would you like it if I brokeyour stuff? I then proceeded to grab one of his beloved CD recording he hadmade and broke one for every hole in the wall, which was about three. You canimagine what happened next. He became furious. He then knocked a very largehole in the wall with the nightstand next to the bed in which I wasconfiscating his beloved CD. This only created more irritation.

That’s not exactly what I had in mind. I wanted him to say,oh mom I see how that feels, that really sucks! Why certainly I will not putanother hole in the wall. Right? Wrong!

We laugh now, though it was disturbing at the time. Our wayof coping was to joke that we were keeping the drywall guy in business. Humoris good.

BRAIN CHEMICALS HAVE A MIND OF THEIR OWN

Never make a statement to an angry person, I read. Theysimply will not hear you. When we become angry, the chemicals released in ourbrains can be overpowering: the fight or flight response takes over. People cando crazy things (no pun intended) but also say stuff that they would not sayotherwise.

This learning curve of non-engagement puzzles me as itseems there are issues, which must be discussed or challenged. However, when wereact emotionally to the issues that push our buttons, nothing is accomplished.I am certain that when I finally learn notto react, I’ll be dead.

I find it difficult to ignore actions, choices, anddownright refusal to join in with resolving issues that work for the better ofmy loved one and our sanity. Yet I have to remember that the mental illnesslends itself to these types of behaviors. And some illnesses, like borderlinepersonality disorder, are exceptionally difficult to work with. And if you thecaretaker, mother, father, sister, brother struggle with depression like I do,it’s more difficult.

WHAT PUSHES MY BUTTONS

My button pushers usually are:

1. The use of profanity as a normalpart of speech, especially in the company of children

2. Not complying or respecting ourwishes for living in our home (simple courtesy)

3. Cigarettebutts littering the front door, deck, and yard

4. Extremeimpatience withtheir own children

5. Disrespectand rudeness

6. Unwillingnessto listen to reason

7. Questionablefriends who do more harm than good

I’m certain you will agree that there is something aboutyour children, grown or otherwise telling you to shut the f… up? Swearing isfrequent from those having an episode—I’m guilty but it’s not a normal part ofmy speech. There are moments when I can say to myself that is the illnesstalking and other times where I’ve reached my threshold of patience.

On one day I was trying to talk some sense into my youngest (she suffers with anxiety disorder)about the unnecessary use of my time to drive her somewhere, a simple phonecall would do, to solve her issue. Of course the advice I was giving upset her.In her rage she called me a f-b- (that does not stand for Facebook by the way)my knee jerk response was to slap the mouth in which those words flowed from—as my upbringing says you don't talk to a parent that way.And then I retort with I’m not the f-b- you are. You are rude and disrespectful . . . I’m not proud, just human andhonest. What came back at me was a Dr. Pepper bottle (half full), which hit mesmack-dab between the eyes along with more profanity. Those chemicals I toldyou about—the flight or fight—will the fight exploded in me like Mt. Saint Helen’s. My body reacted before my mind gavethought to how I was reacting. Before I knew it, I had a handful of hair (notmine of course). All the while I’m thinking stop Diane retaliation is not the best solution(feels good but very bad). We were both out of control. It was a very bad no good day!

I hate days like that as there is no undoing them. But wecan certainly learn from them and can set new boundaries and mindsets.

WHAT ENGAGING LOOKS LIKE AND SOME IDEAS TO CHANGE

What I’ve discovered about engaging or reacting emotionally is:

1. My anger explodes and I do what I oughtnot to do

2. Engagingonly multiplies anger on both sides

3. Engagingis a no-win situation

4. Engagingis not healthy for my body

Engaging might run the gamut of:

1. Remindingthem what they need to do

2. Telling them what not to do

3. Retaliatingin their frame of mind

4. Telling them how crazy they are

What do we do then? We get on the next rocket to the moon. But you and I know there is nosuch outlet. Therefore we’re stuck here in our little corner of the world, tofigure out how to appropriately resolve issues, and get results that lead toeveryone’s benefit.

Here are 14 ideas I am trying to implement in order not toengage:

1. Use my big girl words by incorporating I feel _______ when you________ because . . . messages

2. Ignore inappropriate gestures, door slamming, and/or swearingwhen possible

3. Walk away or go to a coffee shop, say a prayer

4. Give up the need to get my point across in that moment

5. Put on my “clinical white coat” in order to remove myselfemotionally as mother

6. Call a friend and vent (someone who understands mentalillness, preferably)

7. Be aware of my body cues such has headaches, irritable bowelsymptoms, and muscle tension

8. Be calm and firm in saying what I will do or not do and stickto it

9. See a counselor, regularly

10. Choose the fights that are worthy and need intervention

11. Cry a river or an ocean, whichever one brings relief

12. If they live with me, create space, for as long as I need (goaway for a night, weekend, or longer if I can)

13. Or if they do not live with me tell them they cannot visituntil they show respect

14. Don’t answer their phone calls until I feel I am ready to havea conversation

Truly not engaging with our loved one, when tensions arehigh, is easier to verbalize then to do. Within the writing of this blog post, Ifound myself doing all the things I really didn’t want to do when a situationemerged. When we love someone dearly, it’s hard to ignore those inappropriatebehaviors, the constant disrespect, or non-desire to take responsibility fortheir own stuff, or even when they are putting themselves in harms way. Yetengaging sets us up for failure rather than success in our relationships where tensions are high. I’mworking on non-engagement . . . but it will be a work in progress! I hope to find ways to get my point across without the challenge of engagement, and that will be a whole other blog and life lesson.

What strategies do you use to avoid out of control argumentsor frustrations that are mounting and pushing your buttons?

When is Enabling, Enabling a Loved One With a Dual Diagnosis?

2011-10-03T18:00:00.000-07:00

One of thequestions, which comes up often in our Family-to-Family Support Group is, whenis helping enabling our loved one, especially if substance abuse is evident?

We often findourselves in a catch twenty-two with the above question. The reason our lovedone uses drugs or alcohol is because they have an untreated mental illness,they don’t take their medications correctly, or go untreated because they donot have medical insurance.

Each person isdifferent in how the mental illness affects him or her—the degree of theillness, and the length of the illness all play a role in treatment, choices,and behaviors. So is our frustration level, our coping skills, and our desiredsanity, is also diverse. Often there is no easy answer to our question, when ishelping enabling?

As we ask, whichdo we treat first the drug addiction or mental illness, we feel exasperated asboth are harmful to our loved one. If we help are we enabling the drug/alcoholabuse? If we don’t help are we ignoring our loved ones sickness?

WHATSHOULD BE TREATED FIRST?

In CodependentNo More by Melody Beattie she states, “Detachment is based on the premisesthat each person is responsible for himself, that we can’t solve problems thataren’t ours to solve, and that worrying doesn’t help.”

While it is truethat “each person is responsible for himself,” the decision is not always easyor that cut and dry. And although it’s true “each person is responsible forhimself” when there is severe mental illness they often are not capable ofhelping themselves. When a loved one suffers with mental illness, particularlywith a dual diagnose, it’s a catch twenty-two, deciding what to treated first?

NAMI in theirarticle Dual Diagnosis and Integrated Treatment of Mental Illness and SubstanceAbuse Disorder says, “Research has strongly indicated that to recover fully, aconsumer with co-occurring disorder needs treatment for both problems—focusingon one does not ensure the other will go away.”

WEWILL ONLY HELP YOU IF . . .

We were nevermore frustrated at our county mental health when our son decided he neededhelp. At the time he was using cannabis. After questioning him and hearing hisgenuine desire for help they turned him down because he had smoked marijuanawithin that week. This led to greater depression as he felt hopeless, and sodid we. It is a shame when someone seeks out help only to be turned down.

Talking toparents of an adult child, dealing with this same issue, stated that theirson’s doctor would not prescribe medication because he uses marijuana, andanother street drug. This leaves the family frustrated while they try to figureout what is best—do they treat the addiction using guidelines from AA or NA ordo they seek to help their son get medical treatment for his mental illness. Itis a vicious cycle.

Quoting NAMI’sarticle again they stated, “An estimated 50 percent of homeless adults withserious mental illnesses have a co-occurring substance abuse disorder.Meanwhile, 16% of jail and prison inmates are estimated to have severe mentaland substance abuse disorders. Among detainees with mental disorders, 72percent also have a co-occurring substance abuse disorder.”

When consideringhow to help your loved one who has a dual-diagnosis, it seems difficult knowingif helping is enabling the addiction. That’s like saying we are going to treatyour over-weight condition before we treat your diabetes.

Some believe ifthe mental illness is drug induced one must treat the addiction(s) first, thisway one can know is the behaviors due to drugs or mental illness; however,stress will trigger someone’s predisposition toward mental illness too. Do wesay we have to treat the stress first before the illness? It shouldn’t matterwhat aggravated the illness but that there is a brain disorder, which needspsychiatric intervention and medical care.

We not onlydemand, it seems, “get your addiction under control or we won’t help,” also weexpect the sick person to make him or herself well. It’s kind of like telling acancer patient if you can’t get your cancer under control we will not help youanymore. No wonder we feel hopeless and helpless.

SELF-MEDICATINGIS AN INHERENT SYMPTOM OF MENTAL ILLNESS

There are timesthat we have to step aside and let others help our loved one, but someone mustget the ball rolling so to speak.

Most people withmental illness do not understand the seriousness of their brain disorder aswell tend to be in denial about their addiction issues. Self-medicating anddenial are inherent symptoms for some with mental illness—no I’m not sickeveryone else is, is a common exclamation. NAMI suggests though, “Abstinencemay be a goal of the program [AA or NA], it should not be a precondition forentering treatment.”

What a wearisomecycle—stop using drugs or we won’t help—no help means the sick person stayssick and will self-medicate for relief. There has to be a higher standardwithin our mental health communities.

According to theNAMI article, Dual Diagnosis and Integrated Treatment of MentalIllness and Substance Abuse Disorder,

“The ECA Surveyfound that individuals with severe mental disorders were at significant riskfor developing a substance use disorder in their lifetime. • 47 percent ofindividuals with schizophrenia also had a substance abuse disorder (more thanfour times as likely as the general population).• 61 percent ofindividuals with bipolar disorder also had a substance abuse disorder (morethan five times as likely as the general population). Continuingstudies support these findings, that these disorders do appear to occur muchmore frequently then previously realized, and that appropriate integratedtreatments must be developed.”

CHANGINGMINDSETS

A differentmindset needs to be adopted when it comes to mental health issues. Familiesneed more guidance in dealing with such topics. Families should not vacillatewhether they are enabling the mental illness or drug addiction. Mental illnessis a chemical imbalance of the brain, no more could we enable cancer thenenable one’s brain chemical imbalance. The use of drugs is the loved ones wayof treating their untreated illness.

Of course, itcannot go without saying our family member with mental illness has to want helpand we should always keep boundaries for our own sanity. But sometimesintervention is needed to get our loved one on the road to recovery from boththe illness and the addiction whatever that may be.

To answer ourquestion when is helping enabling, for us we decided that we would not do forour son what he could do for himself. We also choose to see the drug use onlyas a symptom of the illness; and therefore, focused on getting help for hisillness. Through the years of recovery we’ve had to learn when to help and whento back off—it was and is trial by error for sure. We are still learning.

Whenis helping enabling our loved one, especially if substance abuse isevident?

To evaluate ourchoices or decisions we ask:

1. Are we beyondtired, worn out from helping

2. Are wefeeling manipulated

3. Is there noprogress toward change in our loved one

4. Is our lovedone not cooperating with his or hers recovery

5. Are we doingthe same thing expecting different results

6. Are we goingdown a financial rabbit hole

What do we do inthose situations: We suggest:

1. Reevaluatewhat we are doing

2. Take time tocare for our self

3. Seek asupport group

4. Do only whatyou can stomach doing

Helping ourloved one depends on what we can do or not do physically and emotionally. Butwe also believe it comes with educating ourselves with what a dual diagnosisis, what mental illness is and how it affects an individual’s life. We havefound that though many people work within the mental health field, some do notunderstand the dynamics of mental illness the way we do—as we live with itevery day. We are the experts as it comes to our loved one. We must follow ourheart and mind as we deal and seek the best for our loved one so that recoveryis possible.

Will it be easy?No! We will be challenged and our emotions will be tossed around like a ragdoll. We will cry, complain, and wish for something different, wanting it allto go away. But that is where we find inner strength to not give up on the onewe love whether we are directly or indirectly involved in our loved onesrecovery.

"We recognize mental illnesses are brain disorders," (NAMI Support Group Principles).

Don't Fix Me, Be my Friend . . .

2011-07-12T18:09:00.000-07:00

If you've not watched The Soloist, based on a true story, it is a movie to see. An LA Times journalist, Steven Lopez, befriended a man with schizophrenia, Nathaniel Anthony Ayers. As Mr. Lopez discovers more about Mr. Ayers, he wants what we all want for our loved one, an improved life and one with opportunities. Mr. Lopez's enthusiasm is challenged. And I wonder how many of us as parents with adult children need the same.

Watch . . .

"Nathaniel has one thing going for him right now, a friend."

Sometimes in our efforts to "get them well" we forget that being supportive, and offering compassionate friendship or understanding if the consumer is a family member, is just as important to recovery as therapy and medications.

The uncertainties, the worry, the desire for our consumer to have a better life, the inability to be involved with their medical care, where and how to get help, the frustration when they won't get treatment; are all issues families face; therefore, forgetting that they need non-judgemental people to connect with is easy to forget. From my experience, we forget that they are having to redefine who they are.

Those with mental illness, no matter how severe, need someone or at least have the knowledge that there is a person concerned for their well being. That might be a simple I'm here for you or moving toward advocacy—navigating the road to recovery. This all requires resoluteness and respect for the individual. And I admit it's not always easy, especially when it is a son or daughter who acts out with disrespect or anger. Again, it's keeping in mind it's the illness not the person.

Though we would like to force our loved one to the doctors, to take their medications, and conform to what we feel is "normal." It just won't happen unless they want it or believe they have a problem. I submit though, with severe illness where someone is homicidal or suicidal intervention is imperative. However, we also must have realistic goals for them. Most likely your son will not be a doctor, but I bet his brain is always inventing something.

As a family member we must keep our good intentions in check or they can backfire on us like in this scene.

Watch . . .

What this clip does not show, is how Mr. Ayers becomes aggressive toward Mr. Lopez. The reality is our loved one—untreated, treated, or undiagnosed mental illnesses—may not want help or help the way with think they need it. They may see us as the bad guy if we push our force our ideas. In the rest of this scene Mr. Ayers tells Mr. Lopez he wants nothing to do with him; he's not his friends anymore. When our support is rejected we can feel paralyzed.
We think if only we could . . . I'm just trying to help . . .

Unfortunately, like Nathaniel, our loved one might be in denial, they're not ill, everyone else is crazy. For instance, Mr. Ayers becomes upset at the knowledge of his illness—being labeled as one with a "schizophrenic mind." That word meant stigma, a label, an abnormality and possibly a life in an institution. He could not rationalize that Mr. Lopez's intervention was to give him a chance where recovery meant the possibility for a healthier life. To Mr. Ayers, his life was already rich with his music, the streets, and the people who smiled.

Consumers do not need us to "fix" them—though we would like to. So determining ways we can assist them in recovery involves building a relationship, providing a sense of safety, and understanding their illness and the resources available. Also learning how to communicate our desire to be there for them as well our love toward them.

Each mental illness has its own set of dynamics and every person is different. Yet every individual has a right and a greater chance of recovery if there is someone in their life who supports them in the recovery process without judgement. But in order to do so, we must offer encouragement and our perspective has to change, again this comes from understanding the person and the illness.

And I might add, we must not feel guilty if our loved one refuses our help. Our heart may break but all we can do is the best we can and wait on the sidelines for the time our loved one is ready to receive medical treatment and other resources, which will enhance their life.

"We will see the individual first, not the illness," NAMI Support Group.

Parents and Siblings with Mental Illness, An Interview with a Friend

2011-06-02T07:30:00.000-07:00

What was your first memory of your mother’s mental illness?

My first memory began when I was around three years old. Along with my 2 siblings we were placed in a foster care home. My mom was hospitalized with a “nervous breakdown.” Although I did not understand what that was at the time. In the early sixties that is what they called these situations. I don’t think Schizophrenia and Bipolar (then called Manic Depressive) were labels common to the general population.

What is your mother’s diagnose?

My mother is diagnosed with Schizo-Affective Disorder, which means she has schizophrenia with bipolar.

Were you aware that there was something different about your mom at such a young age?

I’m sure I had no idea that things should be any different. All I remember is the feeling of missing my mom terribly. I turned to my older sister to be my anchor and to give me a sense of security. My sister was only 2 years older than me. Through it, I remember feeling a connection and relationship to God, even at three. I remember my sister and I saying our prayers together each night for my mom.

How long did you stay in foster care?

Just before I started kindergarten we returned home from foster care, so about a year. I remember going home as a time of happiness and security being with my mom. That’s a good memory.

At 7 years old my mom remarried and had a baby, which triggered postpartum depression, which caused my mom to be hospitalized with another “nervous breakdown.” That’s not such a good memory. We did not have to go back to foster care as we now had a stepfather to care for us.

At age seven, how did you feel about your mom’s hospitalization?

This time my mom’s breakdown was confusing as we had a new stepfather who was trying to care for us. I remember my step dad telling us that we needed to be good when my mom came home, and not naughty. To me this meant that my mom had a nervous breakdown because we were bad. That was short lived; however, because my mom was a great mother in many other ways. She reassured us when she got home that her illness was not our fault. As a family we began to see mom’s breakdowns as a result of stress.

What was your perception of your mother then?

I always had this underlying feeling that my mom was fragile. I never wanted to upset her or worry her. I recall that she was constantly referred to as “the overprotective mother” or the “worrier.” I now see that those symptoms were paranoia associated with her illness.

Did you and your family deal with the stigma associated with mental illness?

Yes, we did. Even as a child, it was clear to me that people treated my mother poorly because she was different. She was treated with condescending attitudes by other adults. My mom was so sensitive about the stigma and how people treated her. She not only was reactive about what people thought of her but her family as well. Even as a child, I could see why she felt that way.

When did you come to terms with your mother’s illness?

As an adult. My mom was always who she was, and her illness was manifest even before my earliest memories. I didn’t realize the impact of her illness until I was about 45 years old that is when I took the NAMI Family to Family classes, which were free. This 12-week course taught me, and other families, all about the varying types of mental illnesses. Only then, did I begin to understand what we dealt with were symptoms and the affects of mental illness.

How is your mother doing now?

My mom’s illness was stabilized and managed with medication for 20 years. When I was 32 she was hospitalized again. Today, she lives one day at a time and is doing well.

Do you have other family members with mental illness?

My sister also has Schizo-Affective Disorder. Also I discovered that my maternal grandmother had a brain disorder.

Of the family members you mentioned, which seemed to upset you most?

For me, my real sense of trauma and devastation came when my younger sister had her first psychotic break in her early twenties, hers was also triggered by postpartum hormonal changes.

How come this was more devastating to you then your mother’s?

My sister’s psychotic break was more devastating to me and my entire family because we literally lost the person we always knew, only to be replaced by this completely different personality who was facing some serious challenges. My mom was always like she was, I did not know anything different.

Not only was I grieving what my sister was going through, but I felt extreme fear, worry, and concern for my parents as I could see them experiencing distress and helplessness. I still worry that my sister’s ups and downs will trigger a relapse in my mother. The grief my parents experienced has been hard to watch.

What would you say are the main feelings you have, which are associated with your mom’s and sister’s Schizo-Affective Disorder?

I have felt plenty of shame and embarrassment. However, my number one concern has always been the struggle and necessity to get help, find resources, and answers as well to remember self-care. Mental illness can be full of frustration and grief when trying to get help. Although these struggles have always taken precedence over the shame and embarrassment.

Mostly I feel helpless, sadness, and overwhelming grief about how much of life mental illnesses has robbed from my mom and sister. Because of my mom’s illness, I often felt that I had to take up roles in my family that were not customary.

What do you mean?

At times, I had to be more like a parent to my adult sister because she needed the kind of support that might ordinarily come from a mother—my mom was not capable. This sometimes caused resentment from my sister because it isn’t natural for the older sister to parent the younger sister. She felt we should be more like peers, and we should have been. That has been hard.

Have you gone to counseling to help you manage self care, and if so, what did you learn?

I have gone to counseling. I recommend therapy to everyone who has a family member with mental illness. It can be very helpful. I learned through counseling that one of the issues I struggled with was the feeling of neglect. I know my mom had every intention of being a good mother, and in many ways she was. Her illness robbed her of the ability to participate in much more than just the necessities of keeping her children fed, dressed, and in school. It was like it took every ounce of her being to accomplish this while trying to live with her illness.

I had to mourn and let go of the notion that my mom was capable of having an interest in my school work and education; and the typical mother-daughter traditions, like planning my wedding. Besides the constant feeling of sadness and loss, I think the most affect having family members with mental illness has had on me was and is living with the continuous sense of “always waiting for the other shoe to drop.”

Waiting for the other shoe to drop certainly is something we all can identify with. Waiting for the next big stress that sends our loved one into an episode.

Have you ever worried about your own mental health?

As an adult, especially after my sister became ill, I started to worry that I too would soon be struck with a psychotic illness. That is one of the reasons that I am convinced brain disorders are biological disorders that can be triggered by stresses in one’s environment. I certainly had my own share, as we all do, of tragedies. Yet, none of it triggered a mental illness in me. I feel fortunate not to have been one of the statistics. This brings me to another huge aspect that mental illness has had on my life, which is the idea of “survivor’s guilt.” I often struggle to enjoy my blessings because my mother and sister have such difficult lives.

I’ve not thought of that before “survivor’s guilt” but I bet a majority of siblings might deal with that issue without even knowing it. I’m going to have to explore that.

What thoughts would you like to leave with our readers?

With all the pains and heartaches brought on by the illnesses themselves, one of the most important things that I would share is the treatment of, and services—or lack of services by the medical and social service systems—is more painful and distressing than the actual illness. I also believe, that is something we as a society, can and should do something about.

There is yet no cure for mental illness, but people do recover. The treatments are far from satisfactory, but we can all fight the stigma and shame against these individuals who were unfortunate to have an illness that struck their brain rather than some other organ. We can all advocate for better research and more assistance, and humane living conditions for this disabled population in our communities.

I want to thank my interviewee, who remains anonymous, for her vulnerability. I know that many will benefit from her story.
If this story touched you, please let us know how . . . We want to know we are making a difference.

Schizophrenia

2011-04-05T08:00:00.000-07:00

How much do you know about Schizophrenia? Take a short quiz to test your knowledge, you will find it interesting and educational click here: Test Your Schizophrenia Knowledge.

Since December of last year, I’ve been thinking about the illness of Schizophrenia, especially because a local man, in his twenties—tormented by this illness, shot and killed two women who were house sitting for some friends in a neighboring town not far from where James and I live.

My heartbreaks for these ladies whose life's were cut short and for the pain their families have endured. Even so, I am saddened for this young man trapped by a devastating brain disorder and feel empathy for his parents, whom I am sure have spent many sleepless nights, with tears that have drenched their pillows.

Like most parents, with children of any age with a mental illness, dealing with people who do not understand how devastating this illness can be, is distressing enough. Add it all together, the misconception of the illness, highlighted crimes in the news commit by those with Schizophrenia, and the stigma associated with mental illness equals a life in the midst of a volcano ready to erupt but never does.

And of course I must mention the man from Arizona who made national news, also with Schizophrenia, who shot into a crowd listening to a congresswoman; who as you know was shot too. He killed several people along with a young girl. What a horrific scene. He also is trapped in a brain less typical from the rest of us. Tormented by delusions and hallucinations which afflicted his mind that led to the death and harm others. I can't imagine the horror his parents must feel. There is no happy ending for anyone in these stories.

When we hear these types of reports it is easy to conclude that mental illness always equals violence, especially with Schizophrenia. From the NIMH Science Update, dated July 18, 2006, their article on New Factors Identified for Predicting Violence in Schizophrenia Overall, stated:

“The amount of violence committed by people with schizophrenia is small, and only 1 percent of the U.S. population has schizophrenia. Of the 1,140 participants in this analysis, 80.9 percent reported no violence, while 3.6 percent reported engaging in serious violence in the past six months. Serious violence was defined as assault resulting in injury, use of a lethal weapon, or sexual assault. During the same period, 15.5 percent of participants reported engaging in minor violence, such as simple assault without injury or weapon. By comparison, about 2 percent of the general population without psychiatric disorder engages in any violent behavior in a one-year period, according to the NIMH-funded Epidemiologic Catchments Area Study,” (For the full article go to: New Factors Identified for Predicting Violence in Schizophrenia Overall).

Remembering Susan

Looking back on my life, mental illness has crossed my path more then once—several of those with Schizophrenia. Deep in my memory is a day in 1983, when a neighborhood friend, Susan Weber, stood in front of a train and killed her self—she was 25 years old. I used to play with Susan and her sister when we were kids. I remember her family being a little quirky (but whose isn't?) and the younger sister telling me about the illnesses that ran in her family—like she was apologizing for them. Susan’s mom, and brother, both were diagnosed with Schizophrenia. Her brother was institutionalized in his early twenties. But as for Susan, I cannot say for sure if she was Bipolar or Schizophrenia or a mix of both, which is called *schizoaffective disorder (See definition below). I do know that suicide is a real threat for those who are affected by Schizophrenia or Bipolar disorder.

What I can say about Susan is she always had a glowing face. She was quiet and sweet. As far as I can remember there never was an ill word spoken from her toward others.

I blocked out this horrible event. But the more I’ve taught classes and encouraged others, this day sweeps across my mind and my heart sinks with grief. And it does so, because on that day Susan allowed a train to take her life, I was sitting in the front yard of my parent's home . . . the street that we both grew up on—the street that defined our childhood. As she was walking toward me—unbeknown to me to the train tracks several miles from where we lived, I said hi and talked with her.

I cannot recall what we talked about, although I recall that I noticed her downheartedness. I think that is why I invited her to come talk with me. Her memory haunts me with questions such as . . . if only I knew . . . could I have intervened? Why didn’t I see the signs, or say more? Why didn't I become more of a friend to her? Where were the other people in her life? Didn’t anyone see the signs?

My heart grieves at her loss. Of course, it is not my fault or anyone’s that she committed suicide, I know that. Yet I wonder what we are doing as communities or in our neighborhoods to reach out to those who are afflicted with brain disorders? Or to reach out to the families who have to live in the aftermath of the violence their sons or daughters commit. Or to those who deal with a sibling, cousin, parent, friend, spouse, or child with Schizophrenia. Does the stigma of mental illness keep us from treating them and their families less than our own?

Our son has a friend with Schizophrenia and I've watched how this friend has managed his illness over the years—he is a friendly person. He is well these days and involved with a support system that keeps him on track and he takes his medications. I've also interacted with a client through a company I worked for who has Schizophrenia. Durng stressful times, and when her medications lapsed, she struggled to keep her voices in her head silent, she actually would say out loud, "Just shut up. I don't want to hear you." I felt helpless for her. She enjoyed our lunches and shopping days together, where typical could invade the disorder of her inner world. What an awful way to live.

I do not know what was in Susan's mind that dreadful day she committed suicide; nonetheless, I remember her and I want to give her a voice, because back in 1983, people did not talk about mental illness or depression. Susan's short lived life should remind us, and others like her, that all life has meaning and purpose. It is unfortunate that some cannot find the strength to forge one more step.

Overview of Schizophrenia

Schizophrenia is characterized as a “chronic brain disorder marked by delusions and hallucinations.”

In our NAMI Basics class it says, “Childhood-onset schizophrenia is rarely observed before the age of 5 and can be differentiated from autism by this later age of onset.” NAMI Basics also says that “ . . . the childhood form of this illness is rare, affecting 1 in 40,000 children under the age of 15.” “The average age of onset of the adult form of schizophrenia is 18 for young men and 25 for young women.”

It is reported that the onset for both genders can begin the “latter years of high school . . . this illness is far more common than childhood schizophrenia; it strikes 1 out of 100 people,” writes NAMI.

Statistics show that:

If there is no genetic relationship the risk of Schizophrenia is 1%, that's a 99% chance of not getting the illness.
If a first degree relative as this disorder your chances are 10%, that’s a 90% chance of not getting it.
If a parent as Schizophrenia there is a 13% chance of getting it, with a 87% chance of not getting Schizophrenia.
If both parents have Schizophrenia the chances are between 37-46%, which is a 63-54% chance of not getting this disorder.

(The source of the information is from e. Fuller Torrey, M.D., Surviving Schizophrenia, 4^th

Edition. NY: Harper Collins, 2001).

Some early warning signs of the onset of Schizophrenia might be:

Hearing voices
Staring at something that is not there
Showing no interest is relationship with peers/becomes withdrawn and isolates him/herself
Delays answering questions or has a “blank” look all the time
Confusion about reality
Having odd rituals
A sense of falling a part
Feels panicked and fearful
Paranoid

For more documented information go to: Symptoms, Causes and Diagnosis

Of course, if you suspect your child, spouse, or family member is experiencing any of these symptoms, seek medical help as soon as possible. I can’t say it enough: Become educated on mental illnesses. Know how these disorders affect the brain and you well understand why a person you have contact with behaves the way they do.

In my humble opinion, I believe that mental illness is just not a "family thing" but a "community responsibility" to offer support, encouragement, and non-judgment to families living through the almost erupting volcano of mental illness.

Did you take the quiz at the beginning of this blog? If so, how did you do? Sorry to say I got 4 out of 7 right. There is a lot of misconceptions about this illness. The above NAMI sight: Symptoms, Causes and Diagnosis is a great place for each of us to become better acquainted with Schizophrenia so that we can become better neighbors and family members to those coping with this illness.

Do you have an experience to share about this illness? A positive note that well bring hope to others, if so I do hope you will share.

* “In order to diagnose schizoaffective disorder, a person needs to have primary symptoms of schizophrenia (such as delusions, hallucinations, disorganized speech, disorganized behavior) along with a period of time when he or she also has symptoms of major depression or a manic episode.”

** NAMI: Schizoaffective Disorder

Mental Illness and Walking through Grief

2011-03-02T23:15:00.000-08:00

When our son’s mental illness began to change his character, the hopelessness and despair I felt was like walking through a dark passageway, without a glimpse of light to navigate me to the other end.

Parent’s, more than anyone, have hopes, dreams, and expectations for their child’s future. When mental illness strikes, all those prospects seem to be siphoned into a powerful whirlpool. Aspirations of regaining a typical life, where those hopes and dreams are realized, are sucked into an unknown place. Our biggest question is what does this mean for their future? And if they’re already adults, the feeling of complete helplessness weighs upon our heart. We have no control over navigating their health care.

The same would go for a spouse. When one marries, the future is unknown anyway, but add mental illness into the mix, and this can be rather taxing on the relationship.

In our expectations, the “what ifs” develop a sense of events that might never be a part of our child’s life: finishing school, college, marriage, children, a successful career and so on.

For a spouse, perhaps holding down a job, handling finances, dealing with the mood swings, and questioning if one should stay in such a marriage.

All this creates grief.

Grief, as you may know, has many phases. Mostly we think of grief as having to do with the death of someone we love. But as we look at it in the contents of a family member being diagnosed with a brain disorder, grief is the same. As I mentioned it’s the loss of what might never happen for our child or the uncertainty we might feel toward our spouse’s wellness.

Grief is about loss—and that loss is different for each person and each family member will travel through his or her pain at different speeds. I feel well acquainted with grief and hate the course in which it takes me; however, taking the journey through grief brings us to a place of coping.

Grief shows up at times and places when we least expect it. It catches us off guard. We might think we are managing our crisis well but a situation occurs, which dashes our hopes to reaching the light at the end of the tunnel. Our loved one enters into a program that seems to be the answer to their wellness but we find it only exacerbates it rather then helps improve it. Or we think we’ve found the right doctor but one session tells us we made the wrong choice. Always feeling like we've taken three steps forward and two steps back, grieves us.

Below is a chart of Kübler-Ross Grief Cycle.

Shock and Denial—We either can’t believe this is happening or refuse to consider that there is a problem. For the most part a mother well sense her child is different—not their usual self before a father well. Father’s tend to, especially if we are talking about a son, see their child as being lazy, or just needing to get it together and work a little harder.

Denial that our child has something askew is devastating because we don’t know what that means or what to expect and how it will impact the rest of their life. The same holds true for a spouse.

Anger—I heard it said that depression is anger turned inward. If we are feeling depression, maybe we should explore what we are angry about. Anger indicates something is wrong and needs to be dealt with. I remember a time when our son would not follow our rules, I was so angry with him and although I could not toss him out on the street—knowing he was sick, I had to do something. So I decided to make his world not so comfortable; therefore I took the room he was staying in and turned it into my office. He was moved to the loft were he had less privacy.

Anger also arises when we are navigating the mental health system, interacting with school administrations, teachers, IEPs (Individualized Education Program) and police officers; and those who are not trained fully in what mental illnesses are, yet are allowed to oversee our loved ones care—not every person who copes with mental illness is the same, what works for one might not work for another.

Depression and Detachment—I knew that I always struggled with depression, it runs in my family but it was not until our son’s crisis that I realized I too needed help. I met several parents, mostly moms who struggle with the onset of depression while dealing with their child’s illness. The stress of watching your spouse or child’s mood swings, behaviors, and coping with others who do not understand the dynamics of brain disorders is frustrating. Sometimes it is easier just to detach. It’s natural to want to not hear one more word about mental illness.

Detachment is different from denial, in that in denial we pretend everything is well, while with detachment we build a brick wall, essentially refusing to cope or deal with the purple poka-dotted alligator in the bathtub.

Dialogue and Bargaining—This is the time we not only realize “we” need help too but we seek it out. NAMI places a big emphasis on self-care. We cannot help our loved one unless we are also taking care of our self. We can liken that to being on an airplane and the Stewardess tells the parent to put the oxygen mask on first before they put in on their child.

As we bargain, we want answers—why did this happen, who in the family passed along this illness, what caused this? Am I to blame—a question parents ask of themselves.

Acceptance—Eventually we come to a place of acceptance toward the losses overtaken by brain dysfunctions. In acceptance we learn to become our child’s advocate, even if they are adults. I believe that open communication with our loved one is essential—difficult yes, but essential. We need to understand them and they need to know we understand and are supportive of what they are going through.

The cycle of grief can bounce like a ping-pong ball. We move from shock or denial then to anger and rewind to fear and needing someone to blame. Eventually though, as we work through our grief, we come to a place of acceptance—and acceptance comes by educating ourselves and understanding the process, which we are in—this becomes the other side of grief, because we’ve worked through and let go of our “what ifs.”

When we lay aside shame, guilt, and blame, we can move forward. Our grief can turn from what could have been to what can be. It’s making a new way, forging a new road. It’s learning creative thinking and problem solving and most importantly taking one day at a time and rejoicing in the little progress that is made by our loved one—no matter how slow it feels.

Grief is unavoidable and remember if we feel loss, so does our loved one, no matter their age. I remember when our son was on the road to recovery, he realized he had lost five years of living: movies, social gatherings, maturing, or learning a new skill—Parts of his life stolen that he will not get back.

I encourage you to embrace your grief, and know that grief has a mind of its own. The more we understand its cycle, get help to work through our grief; we can be all the more prepared to handle the next shoe that drops, because with mental illness, the shoe does drop more than once.

In our NAMI family-to-family Support Group, we have eleven principles of support, number ten on our list says, “We expect a better future in a realistic way.” For us to believe this we have to travel through that grief cycle, which is a part of our own healing and acceptance of what faces our loved one and us.

If you are feeling overwhelmed by grief, be assured that you are on a normal course. Use your grief to get the answers you need. And after you’ve reached a point of accepting your loved ones illness, and your life is showing some signs of normalcy, (and I say that with great humor) reach out to help others, as this well help give you support in riding the grief cycle rollercoaster—you will find you are not alone.

Becoming Your Child's Advocate

2011-02-04T10:33:00.000-08:00

As a parent, have you noticed a sudden change in your child’s behavior? Perhaps felt your child was different from birth? These are common thoughts of parents with children with mental illness.

I believe most parents have an innate sense about their child, or at least should. The thought that their child is less than normal, pains the heart. I remember when our son was first diagnosed with Attention Deficit Hyperactive Disorder and OCD (He was already in Jr. High), upon learning this; I wept tears of guilt and failure—it really felt like someone died—that was how deep my pain was. My thought process was if only I knew . . .. Later we learned that bipolar can sometimes be mistaken for ADHD.

Mental illnesses are biological disorders that prevent children from moving from one stage of development to the next and should be taken seriously. In our NAMI Basics class, instead of trying to answer the question what is normal, which is subjective at best, we refer to what is typical or atypical. Just for clarification, atypical is, “Not representative of a type, group, or class.”

At times we might think our child’s behavior is a stage they are going through, and that can be confusing for parents—especially if the change is sudden. In our situation, even though Jason was more creative than other kids, we figured that’s just how he was. He was extremely active, social, and inventive beyond his years. There were no shades of gray in his thinking and he had to be busy every waking hour—to which later I learned he was not sleeping . . . if only I knew.

Through elementary school, Jason was singled out as the culprit for most misdeeds. Of course he wasn’t always innocent, but a majority of the time, he seemed to be the go-to-boy. Many times he was blamed—unfortunately his being vocal about the seemly injustice set off his agitation; drawing attention to him. Many parents deal with this type of issue.

One year, he cried for weeks at bedtime because he felt his teacher didn’t like him—he was in the fourth grade. It was sad to watch and yes I talked with the teacher.

Again, these situations brought more tears, guilt, shame, and a sense of failure to me as a mother.

We want our children to be typical, and why—because if they are not “typical” we question, where did we go wrong? We wonder what the future holds if they aren’t “typical.” We develop judgments that our children’s behaviors are our fault, and we’re bad parents—as a couple in our class were told by their psychiatrist. This couple’s daughter already had been diagnosed with bipolar from a reputable doctor, and had to switch to this new psychiatrist because of insurance. This new doctor told the parents that the child’s behaviors were related to their parenting skills. If they would improve their parenting, their child would change her behavior.

Certainly, children can become products of their upbringing and environment, but in this case this was not the issue.

The last thing any parent needs to hear is it’s your fault your child has a biological brain disorder because of your parenting skills. You can be the most loving parent but if there is a mental illness, all your good parenting skills fade into the abyss of “Well, that didn’t work, what’s next?” This is why NAMI stresses, “It’s Nobody’s Fault.” A parent does not have control over the biochemicals of their child’s brain—nor does the child. Although, they can learn what mental illness are and act accordingly.

There are many wonderful books to read for parents.

As we learn more about mental illness, we can better discern as NAMI Basics says, “What typical looks like and be able to recognize where your child is different. We don’t want to “see” the atypical behavior as a symptom of something more serious.”

Unfortunately, if our child goes undiagnosed, the illness can develop and become more agitated, aggressive, or even more depressed—as the case with our son in Jr. High school. At that time his diagnosed turned to "Clinical Depression."

The behaviors of children with biological brain disorders are atypical. We look at them and ask where did my child go? That sweet loving spirit, their thirst for life fades into the land of anger, self-harming, moods swings, and depression.

Jason’s son is also bipolar. Something I’ve learned, while assisting with our grandson’s mental health issues is, we are the experts. We know our family member better than any teacher, doctor, psychiatrist, or therapist. We live with them twenty-four seven.

The importance of educating ourselves and seeking the right care for our child is a long and bumpy road. I’ve found that most teachers in the field of working with kids, with behavioral issues, usually don’t understand mental illness or the stresses, which trigger out-of-control behavior. They lack training and don't understand that they cannot fix biological disorders by modifying their behavior with rewards and such. Rewards might work for a time, but for a bi-polar child, they can careless after awhile.

When our grandson first began kindergarten, he was removed from "typical" school and put into a special day program. The reason was because he ran out of class and cussed at a teacher. This particular teacher was also frightened by him because he said something threatening—it’s sad that an adult can fear a five-year-old. Our grandson ran when he was stressed, could not understand something, or felt threatened. Instead of trying to figure out the “why” to his running, he was put in “a program.” Although it felt right at the moment, time told a different story.

On one particular day, I decided to wait for my grandson in the parking lot—as his day was shorten. Within a half-hour, I witnessed my grandson running toward me. He jumped on my car. I was a bit perplexed. I learned, that though he was a kindergartner, the teacher was not allowed to touch him or stop him from leaving the classroom; therefore, my kindergarten grandson was able to control the situation and be in harms way. I was ever so thankful I was there. After the jump on my car, he hurried into a nearby bush.

Within minutes several school officials had gathered around doing nothing but watching. Other people were picking up their kids staring as they went by. I finally was able to get him down from the bush and into the backseat of my car. He was an angry five-year-old—not understanding their fear for his safety, he was embarrassed they were all “watching him.” How do I know? From the backseat, as he watched the onlookers, these words screamed from his mouth, “What the f*** are you looking at.” Although I don't advocate children using profanity, I could sense his frustration and embarrassment—as I too, was irritated and uncomfortable. I was glad that I had him in the car before the police arrived!

I was livid over the whole situation, not just for the lack of understanding of these well-meaning people, doing their job, but that they had no regard to protect this young boys dignity. He wasn’t some bad kid . . . he responded to his internal stresses and acted upon them through his stage of development and the way his brain interpreted the situation. A caring adult should have stopped him before he left the classroom. He needed gentle but firm guidance.

I share my stories to reinforce that, we as parents are the experts of our children, which means we are their greatest advocates, as we know them best. In the most respectful way we must stand up and contest for their welfare and not let those who do not understand mental illness do what they think is best—as it can do more harm then good. Boy, do I have stories to tell, but that will be another post.

Educating the teacher and others can help fight the stigma our children will face throughout their life. Don’t get me wrong, there are some wonderful people working with children like ours—we, personally, haven’t met them yet! I commend teachers who take the time to learn about mental illnesses in children.

Our children with mental illness are atypical but they are our children, grandchildren, nieces and nephews. These children want the same things other children want—they are no different, just needing extra help in areas they find difficult and frustrating. And I might add lots of patience, which is easy to run out of!

Parenting a child with mental illness is a difficult, trying, and exhausting job but if we don’t persevere, advocate, and intervene for them, who well?

Quoting from NAMI Basics, “The brain disorders that our children live with are not visible. All the public sees is their behavior-which is often disruptive, and our response to that behavior-which is often judged wrongly.”

Mental Illness is no ones fault. When you can, instruct others about your child when needed and don’t allow others to make decisions, which you feel in your heart will harm your child emotionally or physically—like having your child in a facility were proning (restraint) is used to often. Sometimes our desperation leads us to accept any help we can get. A program may seem like a cure all, only to be a disappointed. Take a breath, become educated on your child’s illness—you are the expert—and then teach others. Do not give up hope as you jump through the hoops of navigating your child’s education.

To advocate you must be educated—

Be pleasantly firm when advocating for your child-you are the expert!
Scroll to the end of blog page to see books for children to read.

An Interview with Jason Ramirez on being Bipolar

2011-01-05T17:00:00.000-08:00

“Hey, son,” I said, shivering in our doorway to the front yard deck as the cold drifted by me. “I want to interview you for our Not Losing Heart blog. What do you think?”

Jason flicked his cigarette ashes onto the deck and turned his head toward me. “What kind of questions?”

“Questions about what it’s like to be bipolar. Perhaps something you say can help other family members.”

“How long will it take?”

“Not long.”

He held up his hand. “Okay, give me five to finish this cigarette.”

A few minutes later, Jason joined me in my office, pulling up a chair beside me. “Alright here I am?”

“Good. Can you remember when you first recognized you had a mental illness?”

“I knew I was different but didn’t consider it a mental illness until someone told me. That was you and Dad. I think I was twenty-one. It was the crisis in my marriage that made me go into a deep depression and very high manic episodes.” Jason paused a moment.

I clicked away on my keyboard, trying to capture his words.

“I don’t like saying mental illness,” he blurted, “that’s stigmatizing. I think of a bipolar as having a different brain function then others. To this day, I feel like I’m not mentally ill like others call it, just different. I think others have the illness,” he said, pointing to nowhere in particular.

I snickered as I turned from my computer and faced him, “Funny Jason. You have to agree, though, that depression is a serious condition, right?”

“Serious, yes.”

“I agree with you about stigmatizing. As your mom, I too knew you were a little more eccentric then other children; even your grandpa, felt you were different as a toddler." I turned back toward my computer screen and wondered if I should tell him my next thought. I decided if I was asking him to put himself out there to be read, I’d be candid too. I spun my chair back around and faced him. “You never knew this, but when you would talk to people—when you were younger and in your teens—and shared your wild inventions or theories—sometimes I'd feel embarrassed, and I wondered what others were thinking about you. Of course, this was pre-diagnosis. I don't feel that way anymore, now that I understand those inventions and theories are all part of how you click. I had to work through that.” I took a cleansing breath and glimpsed out the window. “It wasn't until you had your major crisis that I began to learn about what it means to be bipolar. I'm grateful for the woman you worked with, who saw the signs, and told me to get you help—mainly because she had two sons who committed suicide. That was scary for me.”

Jason stood up.

“Where are you going?”

“I need a smoke.”

“Jason, we’ll never get this done,” I pressed.

“I’ll talk to you through the window,” he smiled as he slid open the window and ran outside through the front door.

“Okay, so tell me,” I said as he stood near the window. “You said you felt different from others, do you remember when that was?”

Jason paused to light his cigarette, inhaled deeply and exhaled. “When I was a small child. I was always making something. I felt like I could never settle down. It also annoyed me that I had to go out the same door I went in at school. The cafeteria lady wouldn’t let me go out the back door either. Or I had to count so many steps around the flagpole and do it the opposite direction.”
“Ah yes, the OCD. So did feeling different make you feel odd as a child?” I coughed slightly as the smoke filtered into my office.

“I never felt like I fit in. What I did learn was to find my own interests though. I was always creating something.”

“I know--like Ninja stars,” I said laughing, “Let’s speed up to now. How would you describe bipolar mood swings to the average person?”

Jason put his face up to the screen speaking in low tones, “You can never know when to expect them, but being prepared when they do happen.”

“What do you mean by prepared?”

“By understanding yourself or understanding the condition of the person who has bipolar.” He pulled his humming phone from his pocket and pushed a button, silencing the ring.

“If you could paint me a picture of what your mood swing feels like, what would it be?

“I need to think about it. Can I have a break?”

“Only if you promise we’ll finish later.”

“I promise. We’ll get it done.”

I reluctantly gave in.

A couple of hours later, Jason and I restarted our conversation where we left off. He stood on the steps and leaned against the wall by the entryway. Perhaps looking for the quickest escape route.

“So how would you describe your mood swings?”

“My mood swings are atomic,” he said, moving his fingers like he was performing a piano scale. His voice grew intense. “What I don't like, when having a mood swing, is others who say something negative or try to help, and to the bipolar . . . ” His voice grew weighty and he bounced back and forth on the steps. “That’s like shoveling coals onto an already burning fire,” he said, making shoveling motions with his arms. “We might need to hear what you have to say, but the timing is all off. Sometimes, even when it's hard, we need someone to just listen to our rants. We’re not going to do all those things we say we’re gong to do—at least I’m not.”

I smiled. “That took me some time to learn. I had to learn to retrain the part of me that wanted to solve your crisis or tell you what the consequences would be if you blew up the world or drove your car off the cliff. I struggled to just listen. Every fiber in me tied into knots. I remember finally asking what you expected me to do and you said, ‘Just listen. I don't need you to do anything.’ Understanding that elevated the stress to fix, especially when I couldn’t do a thing about it. I have to ask, when you say ‘atomic’ do you mean like a big explosion?”

A saw the familiar twinkle in my son’s eyes, as a smile expanded on his face. He let out a laugh. “No, like a bunch of atoms thrown together, multiplying a trillion times over. You don't have any control over it; it has a motion all to itself.”

“Oh, I see,” I said, acting like I understood fully. I followed Jason into the kitchen. “What is the worst aspect of living with bipolar?”

He opened the refrigerator and pulled out a beer. “When I have an atomic moment, because of high stress, it’s hard to control it. Then if you have done something or said something you wouldn't have done otherwise,” his voice went softer, “you feel real bad and guilty—’cause you really didn’t want to do those things. It’s like you're outside your body and something else is in control.” He closed the refrigerator door. He put his beer down and washed his hands, turning to look me in the eyes. “I find that hard, knowing I did something I really didn't want to do. Like the times I punched holes in walls, or broke your glass cups, or ripped off the cabinet door. Or the things I said to you and Dad.”

“Or the time you threw the box of zucchini all over the house?”

“Yeah, but I cleaned that mess up before you got home.”

“Yes you did. I appreciated that; however, I still find little evidences of that zucchini in the strangest places,” I replied, pointing to a picture on the wall. “Jason, how did you come to terms with your bipolar?”

“I know what my triggers are and the power to control them—most times. Some people like to stay in denial. But learning to have control, well that came through maturing and understanding about my self and my bipolar. I feel like bipolar is a gift . . .”

I rolled my eyes. “I’ve heard that before.”

“So, some might disagree with me. But we think way out of the box and are able to see life through a different angle. What you might see is only one angle of light, but a person like me, we see several angles of that same light.” He placed his bottle of beer on my office desk as we sat back down. “Some people concentrate on only what they see in front of them and don’t necessarily imagine what is on the other side of the object,” he said, “like this bottle.” He took hold of the beer. “You see the front but we see front and back at the same time. Do you know what I mean?”

I stared at him with a glazed glare.

“I see beyond what’s in front—like having a sixth sense, which helps me not to doubt what I imagine or dream. Though it might take bipolars many roads to get where we want to go, we can eventually get there; and it helps when we have support.” He took a swallow and stood, his voice rose slightly. “You have to know that many people from our history changed and shifted the world, and they were people with bipolar.” His voice became dramatic like a lawyer trying to win his case. “God made them and me like this, and I see it as a gift. Some of these people were artists, writers, and inventors. They were movers and shakers. That's how I see it.”

I applauded him. “Can you name a few of those people?”

“Okay, people like Van Gogh, Albert Einstein, and Virginia Wolf, the novelist. There's a whole bunch of us. We've always been around . . . people just didn't know it.”

“I think you have a valid point. How can others help to fight the stigma that follows those with brain disorders? Can I use that word “disorders”?

“What I think stigma is—is another person’s opinion of what they think it is. When someone stigmatizes you with labels, it makes one feel as though they are not human. Like they are a different class of people. But people who cope with different brain functions are like other people who also have some type of imperfection, which makes us all human.” He took a quick breath, “We might function differently, but we’re still kind, probably overly generous, and creative—besides being moody and emotional at times . . .” Jason and I shared a chuckle.

“We do have a lot to give to those around us,” he continued. “We’re inventive and creative; yeah we can have grandiose ideas, but having people around us to help make the picture not so big is important. Other people like me should fight the stigma by being who they are, and not listening to the labels. It’s hard for those who have not walked in our shoes to really know what it is like in our brains. I think people without bipolar should be involved in their community, learning and understanding how the brain works differently for us.” He stood and slapped his forehead. “It’s frustrating to talk to someone or do things with people who do not understand.”

I watched as he pulled another cigarette from the pack. I knew my time with him was getting short.

He continued. “You can think of bipolar as two different operating systems. Not all programs that run on a Mac will work on a PC. We're the same but different in how we process our information.”

“I like that analogy,” I said. “Do you think that medications are important for keeping the brain more balanced?”

Jason put his cigarette behind his ear and sat back down in the suede recliner. “Define medication, because medication is not just the medications the doctor gives you. It’s also how you care for yourself—like your diet and physical exercise for your well-being. But yes, some meds are important. I need one to help me sleep; otherwise, I’d be up all night, as my brain never shuts down.”

“I don’t know if I could deal with that day in and day out. Tell me, what do you need from others when you are more manic or depressed?”

“Time to be creative, like writing or mixing a song, singing, or walking. Others need to be supportive and not make negative comments. If you don't understand what is going on, then don't say anything. Give us room. It's best to wait until the episode has passed to offer help, especially when manic. When depressed, I need someone to help motivate me.”

“Those are some really good pointers. I wonder, Jason, did you ever feel like you would get past your dark days?”

“They are all dark days. Some are just darker. Yeah, there were times I thought I’d never make it because of the choices I was making—due to my bipolar depression. Although there was a part of me that had a sense that one day I would look back and be at a different place. I knew my darkest days would not last forever.”

“Jason I really appreciate you answering my questions. I think it will be good for others to hear thoughts from the mind of a bipolar.”

“Yeah, you know, Mom, I think there will be lots of people who will benefit from this.”

“I hope so, son.”

*Jason is 32 and a father of two children—a boy and girl. Since the onset of his first bipolar episode, he has been a stay-at-home dad. He has many interests such as mixing beats, recording, writing hip-hop lyrics, singing, and recently working on opening his own mobile gymnastics business for preschoolers, Hip-Hop Tumblers, with a long time friend. Jason lives in Northern California.

A Father's Perspective

2010-12-13T19:54:00.000-08:00

I, James, am the father, and grandfather, to a bi-polar son and grandson. Approximately 10 years ago, we had our first episode with mental illness and it altered our lives. Prior to our son’s first occurrence, my knowledge in regards to mental illness, the various types, medications, and their potential repercussions, was lacking. That was until an opportunity came along for me to gain knowledge about illnesses that can affect the brain.

My son had undergone some emotional events in his life just after he turned 21. I believe that these events were instrumental in triggering his first episode. I remember all the dreams I had for him. My son was very active, athletic, intellectual, creative, energetic and busy. I remember those dreams of him attending college, being successful, getting married, and having children. I did not consider myself to be the type of parent that mandated a specific outcome for him, instead we allowed and encouraged him to try a multitude of activities, and then to choose the one he felt good about; although, college and his successfulness in his life was always a priority. But in a moment, my dreams, my plans, my script for my son changed, and I was grasping to find logical answers.

I can recall one afternoon when this metaphor filled my mind, the Etch-A-Sketch. I pictured the Etch-A-Sketch as a description showing my life’s changes. You see, we draw these pictures, with lines, circles, boxes, curves and triangles and then we connect them and they become these elaborate pictures with detail and depth of what we think our life should be and the life of our children. This picture shows some of the past, the present and the future to come.

For me, I put plans in place, established a course for my life, and moved with energy and direction to where I thought I was going. Then all of a sudden those plans stopped. I was met with a dilemma as my plans, the present and the future all began to change. My picture was in chaos. Straight lines were curved, squares became contorted figures—none of my image was recognizable—a total mess. What do we do when life turns upside down? And what we think we know, no longer works?

Even though my Etch-A-Sketch picture was twisted and plans changed, it did not change the love I had for my son. I love my son today more than ever. I love him for who he is as a human being, as a living individual, a creative mind, as my flesh and blood. However, understanding the change in his behaviors took time for me to empathize with him. In the beginning, I was extremely mad and confused—and I admit, at times filled with shame. I even remember asking myself—what had I done wrong and how could my wife and I have done things differently to prevent this?

I had always believed that there were certain ways to do things and how to do them right. I had grown up knowing certain patterns and processes that worked for disciplining and directing my children. I knew how to work with others through coaching, listening skills, facilitating, skillfully utilizing my influence and so on. Yet, I found, I was not prepared for the on-set of mental illness nor did I fully understand how a brain disorder could affect one’s well-being and behaviors. My entire “how to” knowledge was useless. I felt completely powerless.

Looking back, I praise my wife, who was a bit more empathic and versed on what was taking place. She seemed to have a different understanding than I at first. Our beliefs were at odds and it was putting a wedge between us. I believed that if my son would do this or that, or do things my way, he would get it right. He needed to pull himself up by his bootstraps and get on with it. When my wife challenged by thinking, I became angrier inside. I felt she was coddling this boy, who was a man now.

I remember when she began to look for information and searched the Internet, the library and any resource she could find, and then shared that information with me, something clicked inside. To our good, we eventually found NAMI (The National Alliance on Mental Illness) it was as though someone had thrown me a lifeline and given me the tools to make a difference in the life of our son, my marriage, and others. My wife and I needed to be on the same page as it came to giving compassion and finding empathy for what our son was going through. She needed my support and I needed hers. We desired to know when help was help and when it was not.

Today, my son is a stay at home father. He has provided a fantastic support to his children and loves them dearly. He takes medication, sees counselors and doctors from time-to-time and stays in regular, sometimes daily communication with us. He has redefined his aspirations and is able to see what is attainable in his life. We have let go of the “what should have been” to accepting what is and working within that means.

Now, after more than 10 years, if you ask me what I have learned, I would tell you that I have learned to comprehend how much I do not know about mental illness and how important it is for me to continue to teach others so I will not forget; so I will not lose my empathy for those who struggle with mental illness. I would tell you how much I truly love my son no matter how twisted my Etch-A-Sketch plans from him became. I would tell you, what changed the most was my attitude. The more I began to understand the reality of mental illness, and understand the disorder through his eyes, the easier it was for me to let go of my ideas of how things ought to be done.

I recommend every family member take the 12-week family-to-family course, provided free by NAMI. NAMI is a grass root organization that has helped thousands and thousands of families understand how to work with mental illness, including me. I cannot say enough about the life saving work they do and support they provide, and how they rescued me from my staunch thinking about what my son needed to do to fix him self. I am powerless to repair what is broken or change the past; however, I’ve the power to change the future by changing my perspective of mental illness and fighting the stigma, which accompanies it.

I encourage you to become educated about mental illness—the more you know the more you will be able to see the illness through your loved ones eyes, most of all helping your self to accept what you cannot change but grow in your compassion for your loved one.

10 Ways to Cope with Stresses Associated with Mental Illness

2010-11-15T12:50:00.000-08:00

If you’re alive, stress is unavoidable. The stress of mental illness; however, can resemble being tied to a rocket ship blasting into an unknown dark universe, without oxygen. Even if a doctor identifies the type of mental illness—bringing some relief—a whole new set of stresses penetrates the mind.

What will our loved one's life be like?
What if my loved one is in denial?
What do I do when my child turns eighteen?
What if they don't take their medications?
What does this mean to our marriage?

I learned my rocket flights were intermittent and I had to learn to cope through those stressful moments and the questions I could not answer. That didn’t mean I poured a martini and sat in front of a virtual picture of paradise to escape my reality (though maybe at times I should have).

We might think we don’t know what to do. Yet as we travel through the dark universe of mental illness, we discover ways to cope. At the time; however, we are unaware that our survival skills have thrust into gear because we feel so overwhelmed and out-of-control on that blasting rocket.

Here are tens ways I coped through my out-of-control rocket flight days:

I Obtained Information

My husband and I were at odds as we watched our son change. I had more time to spend reading and searching the Internet; therefore, I had knowledge to filter through what was happening to my son. This gave me more compassion and steadfastness.

Finally, when my husband and I went to NAMI Family-to-Family educational classes, the information united us instead of dividing us. We had a difference of opinion that was wedging a gap between us, which added to our already stressful stituation.

The more you know the more you can comprehend why your loved one is behaving the way they are. You are able to see the illness through their eyes and develop compassion.

I Remembered the Person

I had to constantly recall who I knew my son to be. I had to dig deep into my mother’s heart because there were times when my son said things I knew he would not otherwise say, unless he was, well—mentally ill.

When we focus only on the illness, and the destructive debris left in its wake, it’s hard to see your loved one who is struggling with a debilitating disease. If you can try to keep in mind your loved one is not an illness, it relieves some of that tension.

I Found a Support System

I visited a counselor and had friends who could offer me support without giving advice or passing judgment. I found wonderful comfort from a pastor’s wife who listened and prayed for my son and us. But even then I felt I had to be guarded to some degree. Not everyone understands the dynamics of mental illness, and that is okay. Later, as you learn more, you can educate these people on the dynamics of mental disorders—that's what we call fighting the stigma of mental illness.

Be careful whom you share with, not just for your self because it could add further stress, but also for the dignity and respect of your loved one.

Try not to take on the opinions of others, unless they know what they are talking about. The same suggestion is also important if you visit with your clergy or pastor. Most pastors are not up to speed with mental illness and can offer counsel that only elicits guilt. If they listen, provide comfort and prayer, then that’s wonderful. At the beginning of a mental illness, when you do not understand what is going on, you need to feel safe in your sharing. Seek those who know something about mental illness first.

I Laughed

I, by nature, try to find the funny in something. And finding ways to be humorous through our ordeal, even though it was not laughable at the time, alleviated some stress.

Humor is healthy and aids in releasing positive chemicals in the body. Although my husband and I hated the holes our son would punch into our walls now and again, we decided we were keeping someone else in business, we became friends with our sheetrock guy. Finding humor is important in the midst of stress associated with any crisis, including mental illness. Humor can be like a valve you open to release pressure. We found ways to even laugh with our son, after an episode or in remembering some rough times.

I Held on to Hope

I had to hope there was a better tomorrow for my son—that the initial journey through his illness would not last forever. And although it was a long five years to recovery, and seemed like a never-ending road. Although here we are today and life is better, the crisis wasn't forever.

Tomorrow is another day, and the day after that is another day. Every day you make progress toward healing. Most times there is nothing you can do, and hope is all you have. Hope is not giving up for a better tomorrow. Hope is believing “this to will pass.” Your loved one’s life might not be the same as before the illness; nonetheless, there is recovery, there is hope. At least that is what we hope for.

I Cried as Needed

I did a lot of this. When I could not cope at home, I’d drive to the town’s cemetery and sit in my car and wail and weep. I figured no one would bother me, as they’d think I was grieving someone who died.

Grief is a large part of accepting mental illness. We grieve what our loved one will miss, or might never have or be able to do. It’s hard as dreams are dashed. Crying is also healthy. So have a good cry if you haven’t already. Be man enough to cry.

I Refused to Blame Myself

As a parent with a child with mental illness, it’s easy to say where did I go wrong. We can rehearse our moments in our mind to understand how this happened—what caused this illness to strike our family. The truth of the matter is mental illness is no one’s fault. There are particular stresses, which can trigger an episode in a person who is already predisposed to mental illness—it does run in families. Mental illness can have many causes. You cannot know what no one has told you, I learned that in NAMI; therefore, let go of blame, it only causes more stress. Mental illness is what it is.

I Practiced Closet Screams

Really. When I didn’t feel like crying but felt as if I would explode if I didn’t do something, I went to my closet with pillow in hand. I closed the door and screamed as loud as I could into my pillow—and boy did it feel good.

Screaming facilitated the release of negative energy. All the stuff that was building up, the stuff I had no answers for, the stuff I could not fix—screaming in my closet seemed to be like the teakettle boiling on the stove. Imagine the teakettle not having a hole to release the steam. So try a scream or two; it just might work for you too. Really. If that seems too strange for you, take a fast walk around the block—that works too.

I Prayed, prayed, prayed

I consider myself a praying person. Sometimes, though, when I felt I was sinking in deep water and my heart was heavy, all I could pray was Lord we need help.

I know God hears all prayers. If you are not custom to praying, find a book of prayers at the bookstore. Prayer can bring peace, especially when we know there is a God who hears our pleas. Simply pray, “Help us God!” That mixed with faith and trust, soothes the heavy heart.

I Did Only What I Could Stomach

I heard someone say this, "Do only what you can stomach doing," and it gave me such relief. We had well meaning people give us all sorts of advice. “Just get him out.” I wondered are they right? Should we toss his butt on the street? This caused confusion and stress. Except for us, throwing our sick son on the streets didn’t seem appropriate for us (though I did threaten it a zillion times). If he had cancer we wouldn’t kick him out, we’d find a doctor.

I must mention, in some circumstances when there is fear of harm to you or to their self, it might be necessary to make other living arrangements for your loved one. And if that’s the case, you’ll have the ability to do what’s needed—and it will be hard. Do only what you can stomach doing. You can still be a lifeline and a person who advocates for your loved one’s health needs.

There you have it, ten distresses. Pick and choose what's right for you. Or maybe you can add to this list.

1. Become educated

2. See the person not the illness

3. Find a support system

4. Embrace humor

5. Hold on to hope

6. Cry

7. Don’t blame

8. Closet scream

9. Pray if you are so inclined

10. Do only what you can stomach doing

What Families Need When a Loved One is Diagnosed with Mental Illness

2010-11-05T20:16:00.000-07:00

True or false: All people with mental illness are murders.
True or false: All people with mental illnesses never recovery.
True or false: Mental illness is considered a casserole illness.

The answer to all the above questions is false. Unlike other diseases—cancer, diabetes, lupus or other life threatening illness—generally gain the support of family and friends. Family and friends rally assistance to those suffering with life threatening health issues. They are not accused of being crazy, lunatics, or insane.

Unfortunately, when the brain becomes ill, people shy away from sharing their news.

What will people think if they know my son, daughter, husband, wife, or that I have a mental illness?
Will they think it’s my fault?
Will they think my loved one is defective, I'm defective?
Will they continue to be our friends, my friend?

When a family member is diagnosed with a mental illness, most families are reluctant to tell their faith community, friends, or extended family members. Mental illness then becomes a family secret, leaving people to suffer and navigate the bumpy road to wellness, alone. Or if they do tell, they are met with resistance. Even other members of the family struggle to believe or accept that it’s a mental disorder, which causes the mayhem in their loved one’s life.

People with mental illness are accused of being laziness, they just need to “snap out of it” or they need to pull themselves “up by their boot straps.” Family members believe like this until they become educated what mental illness is. Once they discover how mental illness affects the brain, they are able to let go of some of the notions they have.

The reason mental illness is not a casserole sickness, in my humble opinion, is mental illness creates changes in the person’s behavior. For instances, lets take a look at bi-polar disorder, which used to be called manic-depressive disorder.

Quoting from the National Alliance on Mental Illness (NAMI) informational web page, they state, “ . . . most scientists believe that bipolar disorder is likely caused by multiple factors that interact with each other to produce a chemical imbalance affecting certain parts of the brain . . .” NAMI gives a good definition below:

MANIA

· Either an elated, happy mood or an irritable, angry, unpleasant mood

· Increased physical and mental activity and energy

· Racing thoughts and flight of ideas

· Increased talking, more rapid speech than normal

· Ambitious, often grandiose plans

· Risk taking

· Impulsive activity such as spending sprees, sexual indiscretion, and alcohol abuse

DEPRESSION

· Decreased sleep without experiencing fatigue

· Loss of energy

· Prolonged sadness

· Decreased activity and energy

· Restlessness and irritability

· Inability to concentrate or make decisions

· Increased feelings of worry and anxiety

· Less interest or participation in, and less enjoyment of activities normally enjoyed

· Feelings of guilt and hopelessness

· Thoughts of suicide

· Change in appetite (either eating more or eating less)

· Change in sleep patterns (either sleeping more or sleeping less)

Just from the above symptoms, we can understand that a person’s mood changes, they enter into risky behavior, which can lead to impulsive and harmful activities. Suicide enters their thoughts. Life turns upside down. Hopes and aspiration are lashed against jagged rocks.

The aspect observed mostly, in the illness, is the behavior of the person. People with bi-polar disorder look normal; therefore, because someone does not see the evidence of the illness—like one losing their hair from chemotherapy therapy—they do not comprehend why their loved one has conflicting behaviors. The symptoms deal with a change in conduct. The person you know is changing into a different individual—one that is opposite of who you know them to be. And, after all, when it comes to behaviors, behaviors are something to be modified. But if someone’s brain is not functioning the way it should—where chemical imbalance is off the chart, control over these impulses is impossible without therapy and medications—as well having a support system.

When our son was diagnosed with mixed Bi-polar disorder, which means he experiences mania and depression at the same time, it was a relief. We had a name to the outburst, the days he could not get out of bed, and choices he was making.

Through the NAMI family-to-family classes we learned that seeing the person first, and not the illness, is valuable in coping with a loved one's brain disorder. We must pose the question, if cancer does not define an individual or any other health issue, why do we allow mental illness to define who a person is. That person is not their sickness.

I used to tell my son, in the early days of his illness, “Bi-polar is not your fault but your responsibility to get help and let others help you.” Mental illness is no one’s fault. The brain is an internal organ in the body, and like any other internal organ, it's prone to illnesses too.

As a community and society, we must change our mindset and fight the stigma of mental illness. People can and do recover. Supporting families and loved ones in the throws of an illness is important for recovery and coping through such a difficult time. No family should feel shame, embarrassment, or have to make excuses for their loved one.

Essential to helping families cope, is being a safe person with whom they can share with. Educating yourself is imperative. Families need support, encouragement, and non-judgmental friends to be there, if needed, at a moment notice. Mental illness is a “casserole illness.” It requires as much sensitivity as any other disease of our humanness. Stigma depersonalizes. Viewing the mentally ill person, and their family with respect and dignity, helps to change attitudes and provides needed support without judgment.

Visit NAMI's web page for further education on mental illness, such as Bi-polar

Loving Big is Essential to Coping with Mental Illnesses

2010-10-29T22:34:00.000-07:00

Recently, I (Diane) saw a car with “LOVE BIG” plastered on its trunk in big red colors. As I reflected on this , I resolved that loving big is imperative for all family members who experience mental illness. This loving big helps us to live in the now, while hoping against hope for an improved well-being for our family member.

On the other side of loving big we desire to make life healthier or reverse time to change whatever triggered the illness. I know we did. But we could not. And it hurts watching a family member swing in a pendulum of chaos, sometimes unaware.

With the onset of a mental illness, we witness:

A change in our loved one’s personality and behaviors
They seem to transform into someone we don't know
Behaviors or emotions cloud their perceptions and choices
Depression, anger, violence, drug use (self-medicating)
Mood swings, agitation, and denial of having an illness

In order to help our son we had to help ourselves. We needed to learn about his illness and understand that guilt helps no one as we “can’t know what no one has told us,” (NAMI Family to Family course). Mental illness is no one’s fault. Nor does mental illness need to stigmatize a person or family. Loving big, then, puts a family on a course to finding answers and sticking together through thick and thin when all possible.

Besides individual counseling, we also attended a 12-week family-to-family class, sponsored by NAMI. These classes aided my husband (James) and I to be of one mind and understanding. This strengthened our marriage, which was becoming strained by the stress.

Often I would ask myself, what if our son never recovers? We needed to learn to take care of "us" so that we will not drown in the sea of discouragement or become over taken by waves of never-ending sorrow or stress. Finding refuge, educating ourselves, and having empathy gave us our coping skills to endure the “what ifs” of mental illnesses.

When mental illness strikes, as with any life threatening illness, life is turned up side down. This is when our loved ones need us the most. Therefore, LOVING BIG is essential. In doing so we can hope, pray, and seek the right path to aid in their recovery. Recovery can and does happen.