You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' - Eleanor Roosevelt
I would never have understood the code of silence had I not become a mental health family caregiver myself. Before I found other mental health family caregivers I’d already begin to tuck away my experiences with my caregiving journey out of fear people would think ill of my son. We know who our loved ones were before the diagnosis and we just don’t want people making judgments based on the negative symptoms of the illness. Even when we caregivers meet one another in a waiting room or by act of God and find out someone else is going through the very same thing and are not openly speaking about what they are experiencing. It's okay to love and still be afraid it's normal. your loved one is afraid as well most times. On rare occassions are there loved ones who are not intimidated or afraid of what negative symptoms can do in their life and those are very extreme cases as in psychopaths and most times it results in being committed indifinitely if there is violence.
There is a unspoken “Code of Silence” that is automatic with caregivers and many times that is not the best action to take. Knowing the actions of our loved ones would be received as bizarre and could cause fear and alienate them further is sometimes the reasoning. As a Christian my concern was people would judge our situation and attach a spiritual origin to it, namely there were demons in my son. Until I’d done research and found there were actual brain scans that confirm mental illness as a physical illness I too was struggling with whether it was rooted in wicked spirits.
I find it necessary to have this conversation openly and as much as possible because I believe if we are able to speak candidly about the stuggles of someone living with a long term illness such as mental illness that many people afraid to come forward and seek help, and those who are living with them to be liberated as well.
The Effects Of Keeping Silent
A loved one who can go from one extreme emotion to the next and have those symptoms be so extreme that there is a fear for the safety of the caregiver can be disturbing to the caregiver. Sometimes locking ourselves in our rooms unsure if our lives are in danger, or leaving our homes out of fear for our safety for some of us is a struggle full of conflict. Do we call the ambulance or police? Will the paramedics or officers come to help or will they harm our loved one?
So many caregivers have lost their lives not because they were caught off guard always but because they were afraid of what would happen to their loved ones if authorities got involved. It’s a very difficult situation to be in as our loved one is out of control of their mind and posing a danger to themselves or others.
Sometimes caregivers cam experience bouts of rage with a loved one and many times fell the need to act and themselves. Sometimes there are other factors at play like addictions and our standing in the way of their access or confronting them about drug us that will cause reactions. Many of nights in the beginning of his diagnosis I sat holding my son praying over him, talking to him, reading to him or watching nature movies to keep him from being overwhelmed by the negative symptoms. I would watch him become terrified as he could feel a bout of mania coming on and knowing the possiblity of being out of control was there.
Medications work but then there is the time periods in between when they are no longer effective or our loved one can no longer hold up under the oppression of the physical side effects of the medication like dry mouths, insomnia, extreme nausea; excessive weight gain or worse yet increased thoughts of self-harm and suicide.
Educating ourselves as mental health family caregivers about the disorder is a great way to know what to expect when the negative symptom shows up. Watching videos of people who share candidly what experiencing a negative symptom is like and better yet asking a loved one what happens that makes them afraid or when they are out of control what are they feeling. It gives our loved ones support and a listening ear and allows us to have a more intimate understanding of how we can help them.
Your Safety Should Always Be A Priority
That struggle between heart and mind during the loved one experiencing negative symptoms of their illness is a very difficult one and not an easy decision to make. Through trial and error we learn what is a reason to go to the hospital and what we can buckle up and ride the storm out with our loved one for instead. Every caregivers journey and experience is as unique as their loved one and their illness. Because we know our loved ones characteristics we are sometimes more likely to know when they are going to be a danger for themselves or for others. However there have been caregivers who have lost their lives violently because a loved one had an extreme reaction to the negative symptoms. I’ve read articles about such instances and a common factor is no one thought the family had any troubles or they would hear the family fighting all of the time. Whatever the case it’s good to have an open line of communication with someone else about your concerns about your loved ones symptoms especially if it’s psychosis or paranoia.
As I mentioned many caregivers are afraid sometimes to tell the psych professional about concerns about the negative symptoms of the illness getting progressively worse, or they are under the impression they can handle it on their lonesome. Our concern for our loved one is their safety of course but we have an obligation to ensure the safety of ourselves and that of others. Speaking to a psych professional about the negative symptoms can sometimes cause retaliation from the loved one especially in the instance of domestic violence. In hindsight domestic abuse I experienced at the hands of a mate priviously and the retaliatory abuse made sense later once I learned what a mental disorder was and what the negative symptoms were. I would later wind up with a restraining order and moving to a safer community to be safe. I could see he was trying to get better at times but the times when he was on drugs it was a very difficult choice to make to distance myself from him and to protect myself and the children. We have to make the tough decisions sometimes.
Being a good support cannot over rule the safety and well-being of you and your family. Always know you must always choose safety first.
If you are in a domestic abuse situation it is imperative for yourself and others that you speak to someone about what you are experiencing. You may be able to help your loved one get the help they deserve and to save suffering for yourself and your family or others.
Don’t feel guilty about being afraid of the negative symptom times with your loved one, what is happening is frightening to them and to us and sometimes intervention helps them to get better. There are ways to go to court and have a loved one to get help and stay compliant however there is still the factor of them showing up for the help after being released.
We have to make difficult decisions sometimes, especially when a loved one is refusing help and can be a danger to themselves and others, we need to let people know when the symptoms become extreme and violent. It is our duty.
I hope something here has benefitted you. May today bless you with whatever makes you
successful and may God bless us real good.