The Secret Society of Mental Health Caregivers
"I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear." -- Nelson Mandela
When I first began researching information on parents caring for adult children with a mental illness it was difficult finding the Family Caregivers perspective. When you think about it not wanting to speak openly about having your life “spun around”, and on any given day not knowing what your next “hill” will be, especially when in the beginning stages of the diagnosis of your loved one; speaking openly about what you fear is your last choice.
Reading the psychology research and pouring over the library for information, googling, and asking questions on blogs never really gave me the answers or prepared me for what we encountered. My husband and I held on to one another and rode the waves. We experienced the relapses after thinking we’d made progress. We learned to accept days without incident and celebrate them. We learned to use those days to get us through the tough ones.
There are days when you recognize your loved one and other days where you don’t know who’s in your home. You will want to hug them so tight one day and another day choke the “living daylights” out of them! Lot’s of prayer and lots of prayer, and again lots of prayer got us through.
What I learned most was speaking openly about your fears as a MH Family Caregiver was very un-nerving. I didn’t want to seem like a parent who was complaining, I didn’t want to admit I was out of control and didn’t know how to gain it back again, I didn’t want to admit I needed more help.
You start to realize not all medical staff has you and your loved ones interest at heart. So much for them has become “mechanical” because they see it every day. Please don’t hesitate to call upon a patient advocate should you find a rude and insensitive medical “person” because it is a traumatic enough situation to deal with than to have someone “antagonizing” your loved one.
I learned talking with other MH Family Caregivers helped me to see it was a normal series of events that was occurring and not our own personal hell. We talked about our fears, our heartbreaks, our hopes, and the wishing for a few hours of sleep. There were the candid discussions about wanting to just walk away and leave them to their own devices and the guilt that came with that.
When dealing with a loved one with Schizoaffective Disorder and Bipolar Disorder there are challenges you face that are difficult to talk about to people who are not living in your world. You become the master at knowing when to “rationalize” with your loved one and when to “not make a huge deal” out of a fact that’s not a fact but they think it is and are willing to argue until sundown about it…if you entertain them. You learn when your loved one needs a hug and when to be firm. You learn what requires a trip to the hospital and what does not. You learn to be okay with making the mistake of going to the hospital when it seems urgent but it wasn’t.
I want to reassure you as a MH Family Caregiver you will make it through. In the beginning it is very scary because you don’t know how to make it better. You see the fear and the suffering and you want to protect them from the “boogey man” and you don’t know how. You will learn.
I evolved so much as a person when I officially became a MH Family Caregiver. You can no longer “pretend” everything is fine. You learn not to care so much what others think and then you get to a point of “who cares what they think!” You understand your loved ones illness as its unique characteristics for them. You learn the material you read is a “guideline” not the playbook. You are stronger than you think and wise beyond what you believe. Your intuition will guide you many days and you will see as your loved one makes the progress that it was and is all worth it. I hope you stay encouraged and know that there will be days from “hell” but there will be days you dance on the moon. Remember your moon days during your “hell days”.
Praying for us all.