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Back to Blogging

It has been a while since I posted to this blog.  I have been a frazzled senior in college, working to complete dual degrees.  I can happily say, I have graduated.  Now I can dedicate more time to the things I am passionate about.  This includes writing about caregiving, writing my books, and getting into a rewarding career.

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The past few months have been filled projects, papers, reading, and senior seminar classes.  I now have a Bachelor of Arts in English, a Bachelor of Science in Business Administration, and a Human Resource Management  Certificate.  It took me six years to achieve these degrees, all while caring for a mentally ill child, and a child with a severe heart defect.  Thankfully, my husband and I make a great team.

I know the difficulties involved in caregiving as I live them each day.  There isn’t a day that goes by where I do not struggle with my son, having to work closely with him, encourage him, repeat myself for the thousandth time, and address his behavior in some way.  He is more work than a typical full-time job at times.  But, he is also rewarding.  When he works hard or accomplishes something, it is that much more impressive, and I am proud.  I am not sure how I managed to work on dual degrees, succeed in leadership roles, and care for my family at the same time, I just know I did it because they are all important elements of my life.

I truly believe that I can use my skills to address the growing concerns that affect caregivers.  I know there are various types of caregivers, from the people like my parents who care for aging parents and my aunt who is battling cancer, to those who care for sick children and the mentally ill.  The battles with personal freedom and care for caregivers, respite care, insurance conflicts, and family dynamics are merely a few of the problems that arise.  With an aging population, the need for families to step up as caregivers is elevated.  In the coming years, more and more issues will arise until people begin to address the conflicts of caregiving.  While it is rewarding for many, that does not erase the challenges that must be faced daily, and the toll this can take on families.  It does not change the lack of resources and need for advocacy when a family is thrown into a serious situation they do not know how to handle.

Now that I have graduated, I fully intend to utilize more of my time to explore these challenges.  I will look at angles from personal stories, to in-depth looks at various forms of advocacy and the agencies involved.  It is time to face the elephant in the caregiving room!

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Why are Sufferers of Mental Illness Still Marginalized in Society?

I have grown up around mental illness as a reality in my life.  My mother is mentally ill, and as a child/teen, I had to grow up fast and learn to accept the responsibilities of a child with a mentally ill mom.  Granted, my perceptions were still young, and I thought faking being sick so I could stay home with my mom would keep her from attempting suicide.  This is not rational because it also meant I believed if she did attempt suicide and I was not home with her, it would be my fault.  This is how I, as a child viewed the struggle, until I fell apart myself.  Then I realized that no one could necessarily have an affect on a truly suicidal or heavily depressed individual.  The care these individuals require goes beyond what can be provided at home.

I went through my own bouts of depression, and now, my son is mentally ill.  He has many illnesses, and it is very difficult to care for him sometimes.  What surprises me is the way in which society still marginalizes mental illness sufferers as though this minority group’s needs are not important.  People with mental illness are still treated differently and others make wild assumptions about them.  Last I checked, this group of individuals is actually pretty large.  According to the National Institute of Mental Health, 18.6% of U.S. adults have some form of mental illness.  This is nearly 1/5 of U.S. Adults.  How can individuals continue to judge the mentally ill when they take various faces and are all around you.  These people are homeless, wealthy, middle class, poor, black, white, Asian, Hispanic, young, old, and any other descriptive word you can throw in there.  They are teachers, doctors, police officers, cashiers, taxi drivers, friends, co-workers, family, and acquaintances.

On many occasions when I have had to relay my sons story for the millionth time to a new doctor or facility, I have had to deal with the judgmental insinuations that our family must be messed up.  Our family is broken at times, but it is because we struggle to handle the mental illness while living our lives.  The mental illness came first.  Even if we did have family problems, why should others judge us?  What should be more common is empathy.  Our family hurts, we struggle, we fear the future for our son, and we care for one another.  We are a family who needs help because mental illness has intruded on our lives.  We deserve to have treatment without judgement.

The college student who is cutting herself to erase her pain, the high school girl who starves herself to have control, the men and women who struggle to survive from growing up in abusive homes, the soldiers who come home with PTSD, the people who develop schizophrenia, the people with chemical imbalances, the woman on the bridge jumping to forget the rape she endured.  These are all people who are suffering, and they should not be treated as less than human or with a lack of dignity.  Why is mental illness scrutinized so gravely, and why are others so quick to judge?  Why is it so difficult to find help?  Why is insurance for mental illness so limited?  Why can’t we, as a collective group of people, demand change?  Why, as a leading industrialized country, can we not care for the people who need help with the compassion they deserve?

Obviously, things need to change.  I find that caring for a mentally ill child is a caregiving role that is exhaustive.  It is a 24/7 job that requires a lot of work, patience, appointments, medications, and vigilance.  I am tired of the prejudice, the assumptions, and the lack of resources.  I also know many who need help go without it because of shame, lack of understanding, lack of insurance, and fear.  We need to change the perception of mental illness now, and become advocates for the mentally ill.  We should never allow people to suffer in silence.  Mental illness is real and it is prevalent.  It is time to wake up America!

Resources:

http://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml

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Mental Illness Maelstrom

For many people, caregiving means caring for those with mental illness, or children and/or teens who fall under the autism umbrella.  In fact, this is one of the areas in which I fall.  I grew up with a mentally ill mom, so I was not a stranger to the challenges of a home life with the mentally ill.  However, parenting a mentally ill child who also falls under the autism umbrella is one of the most difficult jobs I have faced in my life.  Now, I have been challenged, but as I sit here in my home, which has become a maelstrom of emotions from my son’s inability to handle social situations properly, or to control his anger, I find this challenge to be overwhelming.

The elephant in the room right now is that I do not like my son.  I love him with the entirety of my being.  In fact, I would sacrifice anything if it would help him.  Unfortunately, despite all of the therapy, the medicine, the struggles, the fights, the love, the counseling, etc.. I have concluded I do not like my son.  I feel like his turbulence is toxic to the entire family as we all become angry, sad, and unsure of how to act.  I feel like I am walking on eggshells sometimes.  I feel like my daughter will be scarred forever because of the tides of chaos that rise and nearly drown us.

This is a problem that many families go through and it can be devastating.  It leaves us uncertain, and the divide in the home can cause serious stress, and I am feeling it now.  I know this happens to many people, but as I am suffocating in the middle of it, I feel utterly alone.  How could anyone understand the way I feel?  How could anyone know how this feeling of failure as a parent cloaks me, and it makes me feel inadequate?  Then I realize that this moment will pass and I will have a bright moment or two before it falls apart again.  It is like a repeat tsunami, rolling in, crushing everyone, then receding before it rolls back in again.

This elephant in my room is not the only one.  The bigger problem is the whole field of mental illness.  No one wants to discuss it.  Many people cannot get help, and even when help is provided by insurance, it is difficult to find a decent therapist.  We have struggled with this for a long time, always seeking someone who could truly understand or connect to our son, yet his mix of conditions makes him that much harder to treat.  The elephant in the room of mental illness has grown so big with the silence, shame, and fear people have about talking about it, that the room is about to burst.

Why are people so afraid to discuss it?  Because they will carry around a stigma and people will judge them, that is why.  However, unless more people start talking about this problem in its many forms, there cannot be change.  The world will never realize the immensity of the problem, the number of people affected, or the needs for change if those affected are afraid to raise their voice.  This is why we need to open our eyes and see what is really going on, and we need to listen without judgement.  There are too many people suffering in silence, and they need people to be open to discussion. I would love to hear others’ stories.  Raise your voice!