Where is the easy button?

I recently asked my husband, who is also my caregiver, what he would say to others in regards to living with schizophrenic disorders.

His response? “There is no easy button.”

My husband and I have been together for twenty years. He has witnessed and lived the tumultuous journey of mental illness with me. Even though when we met he did not know I was ill, he often states he knew something was “off.” And as our relationship progressed, he has traveled the road next to me through various treatments, hospitalizations, medication regimens, social and work challenges, personal turmoil, a suicide attempt, and the countless challenging days of living this life. So, I have to agree with his assessment; there is no easy button, magic wand, or a way to snap your finger and progress through this disorder. It is work. Daily, hourly, and sometimes minute by minute work.

As my husband and I have traveled the past twenty years, he has had to develop a true expertise in psychiatric treatments. When a new medication is introduced, he not only researches that medication, but also how it interacts with my current cocktail. Of course, he keeps himself prepared for the side effects that will join in on the journey. For example, with Clozaril he accepted that I had to sleep with towels because of the excessive drool. He also had to research when the diagnosis of tardive dyskinesia arose in my twenties while on Haldol and how we could lessen its impact. The side effects from the medications are numerous and are not easy… medication is not a magic bullet. But, the secret is finding the right medication where the benefit outweighs the side effects.

What also is not a magic bullet and is never easy is to be hospitalized. My husband has been beside me through twelve inpatient hospitalizations. He has dealt with difficult doctors, the overhaul of medications, and the aftermath of when the hospital staff has stated I was not ready to be discharged, but the insurance will not cover any more nights. Of course, there is also the financial challenges of hospitalizations. It is not easy.

He also been there when I faced discrimination due to my illness and lost countless friends along the way. He helped me pick up the pieces after losing a job after an inpatient hospital stay and he also helped me find another route to my masters degree when my first choice school said no due to my diagnosis. He knows how lonely it can be with my illness and how friends often disappear; but, he has stayed. There were never any easy options, but we worked through them.

More than anything, the daily life of living with schizoaffective disorder is challenging. My stability can change with varying degrees from moment to moment. Everything from human interactions to sleep is impacted. And my husband is right, there is no easy button. There is no magic pill… or cure.

But, it is that way with life, in general. We often wish that an easy button would appear to ease us through a situation. But, it doesn’t exist and there truly are no shortcuts. So, at the end of the day, you focus on the blessings, the good moments, and the days that went just a little easier than the one before. And because I have my husband, that is easier to do.

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One of my greatest blessings…

As I venture on my mommahood journey at diagnostic code 295.7, there is a partner that helps make it possible. He is my caregiver, the father to my baby boy, and the love of my life. He is my husband.

For many years I would not consider motherhood. Then late one Summer, I had an epiphany. My husband was not my father. He was the complete opposite of the man I grew up fearing. Also, my husband had cared for me over the many challenging years. He managed my medications, accompanied me to doctor appointments, brought me supplies when inpatient, and looked out for my well-being in every way possible. Furthermore, my husband was loyal. He had demonstrated that quality by remarrying me several years ago when I had divorced him during a whirlwind of mania. This was a man I loved and could raise a child with safely. The only thing stopping me, was me.

So, I took a leap of faith and received an amazing baby boy in return.

But, I have something here that so many others facing severe mental illness do not have. That is a caregiver that works with me as a partner in my journey. Too many are expected to manage this illness on their own… fighting a battle where your brain is working against you. It not only works against you, it tricks you.

One of my greatest blessings lies in my husband. He monitors my medications, checks in on my symptoms daily, supports my needs, and often knows what I may be needing before I am ready to admit it. He has been there through twelve in-patient hospitalizations, eleven treatments of electroconvulsive therapy, one month of partial hospitalization, a suicide attempt, and the past eighteen years of treatment. I am blessed. No other word.

As a society and as a medical establishment, I wish we could learn the power of support and caregiving. I wish we would allocate funds and personnel to such endeavors. I wish we would reach out and help each other, not just place everyone on an assembly line of “care”.

Bottom line, no matter who we are, we need support… we need a caregiver.