• La Shawn Wilburn


Image credit: MariaShriver.com

One of the most difficult things to do on this journey as a family caregiver is to keep the faith when you have more challenging days than good days. I stress a spiritual foundation to stand and operate from because we need somewhere that will cause us to believe when everything around us is contridicting what faith is.

On any given day we must be able to decifer between what is a problem and what is not. What is a sign our loved one is going in the right direction and what is not. Fatigue can set in through the form of physical, mental and emotional. If you don't have a spirtual basis to operate from you will fill like a top spinning round and round in a wind storm. It's much easier to draw an image for you of what being a family caregiver is offline because I am able to share the true essence of the challenges one faces with being a mental health family caregiver without the worry of it being misinterpreted or taken out of context. I'm always mindful of what stigmas are looming about mental health and how I frame what the true experience is. I still haven't figured out how to communicate that without creating fear and causing people outside of the community to shun away from individuals who are battling their brains everyday. This journey of family caregiving is a difficult one, and when I stopped to think about how complex it is I understood the reason why there was never really a good resource that openly address the many challenges that a family caregiver experiences. We can go from one extreme to another within moment depending on the severity of our loved ones symptoms and/or challenges. Speaking openly about it creates tension and anxiety because on the one hand you understand your loved one cannot help that this is the life they have and that they must fight dutifully to just stay on track. Addiction itself is complicated but to have that accompany the challenges that come with having a mental illness on top of the addiction is a whole other level of challenge. As a Family Caregiver and as an Advocate I am posed with the daunting task of advocating for the family caregiver who is in a very difficult and emotionally, physically, and mentally taxing position in being responsible for our loved one who is ill and at the same time fighting for the rights of our loved ones to be treated fairly and not to be discriminated against because of who they are. This is a very difficult position to be in because one sometimes cancels out the other if I'm not careful. My challenge has been how do we as an organization communicate the difficulties of the journey of the mental health family caregiver without villanizing our loved ones. Stigma is such a powerful word and act. It creates these grey lines for advocates because everything we as humans base our lives on is tangible, everything we attach to our brain is in "thought" and we still have difficulty formulating terms to describe emotions. Describing the inner workings of the brain may come easy for those in the area of medicine for the brain but to everyday people we still struggle with why we get upset about not being able to remember where we left our keys last, or how not to beat ourselves up for making a mistake. Having a loved one who is unable to distinguish the difference between reality and psychosis is a challenge for us as a caregiver because if we are not careful we too can begin to question what is and what isn't. When you look up the mental illnesses that are diagnosable and you pull up shares symptoms of multiple mental health conditions.Schizoaffective disorder Bipolar Type you see how complex of a disorder it is. NAMI calls it, "... a chronic mental health condition characterized primarily by symptoms of schizophrenia, such as hallucinations or delusions, and symptoms of a mood disorder, such as mania and depression.

As a family caregiver my challenge has been in finding a mental health doctor, psychiatrist, psychologist and therapist who specializes in the disorder has been a great challenge. Schizoaffective disorder is what NAMI calls "less well - studied" of the two disorders. When I would approach a psychiatrist with my sons diagnosis I would get, "not much is know about the disorder" which was disturbing because what more confusion and a sense of overwhelming energy can you give to a caregiver, not to mention to tell someone who is diagnosed as Schizoaffective disorder that "we just know what it's called" we are not yet sure how to treat it?

Schizoaffective disorder "shares symptoms of multiple mental health conditions." The loved one battling this disease is in constant chaos, I don't advocate self medicating at all, however knowing what I know as a parent of an adult child who struggles with this illness I understand what he is trying to do and it breaks my heart that his battle is so intense. Because of the failed treatment programs it becomes a challenge to get our loved ones into a treatment program to stick with it. This poses great challenges for them because it delays them getting better and we as the family caregiver must attempt to trouble shoot and assist in navigating unfamiliar roads and very little guidance.

The challenge and the reason I understand why so many people have chosen to forgo treatment and wind up on the street is because they don't feel well and many of the medications make them feel worse. That same reason is what makes treating loved ones with the disorder a challenge because they will not go into the treatment willingly.

It requires a great deal of strength to live everyday with such a challenging illness especially being untreated and battling addictions on top of it. Family Caregivers of loved ones with this disorder are some of the most challeged family caregivers. You battle with not just the peaks and valleys with your loved one but those of your own as you try to decifer what is fact and what is fiction. Did they really experience what they are telling you has happened or is it psychosis and how do you ask that question or get enough information to determine if that is so.

I love my son so very much I understand how strong he is and what he is going through on a daily basis just to get up and keep going. I understand the importance of advocating for him and for other individuals battling this complex illness, however I am also advocating for the family caregiver to get more support, to remember to take care of themselves and to not shut down or lose touch with what is and what isn't, that is a battle in and of itself. In order to help our loved ones or to make informed decisions we have to be able to use discernment and when you are fatigued and worn out that sometimes becomes your greatest challenge.

I understand family Caregivers of mental health and the challenges we face and that is why I am so passionate about what I do and about helping caregivers stay aware they are not alone and to encourage them to stay focused and spiritually anchored so that they don't get lost in all that they are facing. Our loved ones need us and it's important for us to help ourselves so that we can help them. I hope this gives clarity to our purpose as an organization to you the family caregiver and to you out there who support and advocate for us.

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