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"We are twice armed if we fight with faith." - Plato
We live next door to them, we work with them, attend church with them, and maybe standing or sitting next to one right now. Mental health family caregivers are all over the world and are one of the main reasons a loved one is not left in an institution or convalescent home.
According to Caregiver.Org, “…About 44 million Americans provide 37 billion hours of unpaid, "informal" care each year for adult family members and friends with chronic illnesses or conditions that prevent them from handling daily activities such as bathing, managing medications or preparing meals on their own. Family caregivers, particularly women, provide over 75% of caregiving support in the United States. In 2007, the estimated economic value of family caregivers' unpaid contributions was at least $375 billion, which is how much it would cost to replace that care with paid services.1…”
The amount of savings caregivers provide is only the financial side of it, from the support side of the caregiving given by family and friends is the comfort brought to the loved one who is battling the illness or disorder. Many times caregivers are the only beacon of light a loved one may have during what can be very traumatic times for them as they navigate the world of psychosis, paranoia, mania, stemming, ticking, self harming and other negative symptoms of their illnesses and disorders. A loved one who has to be cared for by a stranger one could imagine adds additional stress and suffering of the suffering from the symptoms.
Mental health family caregivers provide moral and emotional support to loved ones who under the circumstances may find it hard to have a stranger in their company or home. Ultimately real healthcare is about the patient, the patients safety and comfort.
When our loved ones are suffering what we want most is to bring them comfort and sometimes we can do that at the expense of our own comfort, that is to be expected sometimes because there is a level of sacrifice that must go into caring for another individual who has a mental health disorder or illness and may not be responding well to care or treatment. With the beginning stages of your journey with your loved one there is lots of trial and error so the times when you would need to take a break it may be very difficult to truly take one because you cannot truly rest while worrying too. There is a learning curve and for some of us caregivers that is contingent upon the stability of our loved ones and can change from hour to hour sometimes leaving much room for anxiety and grief over the “failure to be consistent” with what we think the “best care we can give” is.
Caregivers struggle with our abilities and feelings of inadequacy as we fumble our way through learning and implementing care processes that fit the care demands of our love one, and during that process we forget the fact we are just as new to this process as our loved one. With the exception of being the one battling the disorder directly we take the journey with our loved one and can feel helpless under the burden of being able to attach meanings and words to things neither one of us have experiences or mastered the experience of.
Patience is the key to getting through this road with our loved one in addition to love and compassion for them and ourselves. If we remember nothing else that will make what we face with them on a daily basis a little less intimidating.
Wielding The Sword Against Mental Illness
Mental health family caregivers cannot openly talk about what is going on in their homes unless it’s with a mate, therapist, or another caregiver out of fear of painting a bad label on our loved one. We understand just how easy it is to misunderstand the symptom as our loved one choosing to behave in a certain manner.
We fight off shadows, talk to our loved one and calm them down during psychotic episodes, and we are responsible to figuring out when too far is too far and if it warrants a trip to the emergency room or calling the paramedics, which for some of us raises another level of anxiety because not all emergency response personnel are trained in the “de-escalation” of someone having a psychotic breakdown or hallucinating. What we face is very difficult and many times we are left fighting the formidable enemy mental illness right alongside our loved one in the middle of a crisis.
At times if we are not careful we can find ourselves panicked by what our loved one is experiencing and ultimately began to suffer “secondary patient” symptoms ourselves, believing the hallucinations our loved ones are suffering from. Not many caregivers will speak openly and honestly about this out of fear of what people may think of them and sometimes just out of fear of buying into the fear that we have lost touch with reality as well. It is so important to have time away from the home with our loved one so that we can have time to “ground ourselves” and be aware of the things we once loved or enjoyed. A family can suffer great emotional and mental harm if they are not careful to arrange activities outside the home for other family members who are not battling a disorder and if necessary have therapy for the other family members as well.
As the caregiver we are responsible for so much outside of caring for our loved one, especially if there are other children involved. Explaining to minor children about a parent who may experience psychotic episodes or bouts of mania and exhibit behavior that can be confusing to a child is difficult, and if that parent is non-compliant and hostile it can cause the child feel conflicted about a parent they love but are also intimidated by. The caregiver has a responsibility for educating the children and seeing that they receive therapy as well to process their emotions. Overall children raised with a loved one with a mental illness who are nurtured by the caregiver and informed fair better in being compassionate individuals and empathetic to those who suffer from disorders like mental illness.
Mental health family caregivers are also mediators between a loved one who may have tarnished a relationship or relationships with other family members and can at times face scrutiny from other family members for “taking up for” a loved one, or “excusing their behavior”. It is important that the caregiver seek the assistance of a therapist to help navigate the feelings of alienation that can sometimes result from other family members who have exhausted their emotional bank accounts and have chosen not to interact with the loved one and may cause added pressure on the caregiver by pressuring the caregiver to abandon the loved one due to non-compliance. A therapist or counselor can help us to ensure we are being a help mate and not a hindrance while also keeping our own self-interest at the front of our minds.
Don’t Forget About You
What I find is a common affliction amongst us mental health family caregivers is guilt and neglect. Because so much of what our loved one faces or battles is with the mind, especially those of our loved ones who don’t have physical attributes of the illness they are battling and therefore to others can appear “normal”, is invisible and happening behind the closed doors of our homes and our loved ones privacy is of our greatest concern we hold back discussing some of what we may experience on a day to day basis; caring for an adult with a mental health disorder means keeping those secrets to protect our loved one from being judged. Although not discussing too much about what we go through with our loved ones ensures we don’t scare family and friends away and not wanting to be around our loved one, it can at time put us in a position to suffer in silence. We become a place of refuge for our loved one but we ourselves lose a place of refuge sometimes.
Building a place to go is important for us caregivers, I can still remember the comfort I felt when I met other mental health family caregivers who understood what I faced, feared, and celebrated. Until you go through something you don’t fully understand it. When a mental health caregiver speaks to another caregiver and can say out loud, “ I was accused of talking about them and I hadn’t spoke to a soul…or my loved one walked in and heard me talking and swore I was talking about them but I was talking about myself and it sent us into a full on full blown argument about me telling their business and then it took a week to get back to a place where we could be in the same room and not argue about the incident…” or to have to be careful about what you click like on while on social media, or what you post so that you don’t have a backlash from a loved one or be the cause for triggering our loved one into depression or other negative symptoms.
It’s not intentional, it’s the nature of the beast mental illness, and sometimes we are trapped in the throes of the illness right along with our loved ones, sometimes for days or however long their negative symptoms last, which brings up the importance of having a support system outside of your home and your family circle. Having a place to go to discuss your fears and challenges allows you to keep a foot in the world outside of your caregiving and to maintain your own identity. I cannot stress enough how important it is to do so.
There are thousands of other caregivers out there who do what you do, and live a life similar to yours. Our emotions can get the best of us if we allow them too, and depression can become our own diagnosis if we are not careful about our own self care. Make sure you are not silent about the things that matter to you, your health care, the things you once loved to do, and living a quality filled life. Yes this journey is a difficult one but it is possible to have a quality of life if we choose to.
Check out MDJunction.com and seek out the experiences of those who are mental health caregivers like you, and of survivors as well. Sometimes hearing the story from the inside and from a neutral source can change the trajectory of your journey with your loved one.
Don't stop praying and believing, keep praying and keep walking and doing your part in this journey. It's hard but it's possible, as long as your loved one is fighting to win too they have a chance of living with and managing effectively their illness but it takes time and patience. Don't give up you are not alone.
God bless you and your family!