Social Support: A Mental Health Caregivers Plight - Where Are Our Villages?
"Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand." --Karl A. Menniger
According to an AARP report in 2015, there are 39.8 million Caregivers in the United States. Of that number there are lots of caregivers who care for loved ones with mental illnesses but what is most astounding are the possibilities of the number being greater because mental health caregivers, probably amongst many caregivers, may not come forward to say they are caregivers; worse yet are the people who are undiagnosed and an individual who's caring for them doesn't know they are a caregiver.
Of all of the caregivers who care for loved ones with long term illnesses, Mental Health Caregivers, or those who care for loved ones with a mental illness, are the least supported. Stigmas surrounding mental illness are part to blame, but as any caregiver knows many people are not quite sure how to be of support to a caregiver. Those of us who care for loved ones with a mental illness face the "disbelief" that there is even an illness, as mental illness is still viewed as an "invisible illness". Part of what makes it hard for an individual to recover from an mental illness is also part of what makes supporting a loved one with a mental illness difficult as well.
Stigmas attached to mental illness pegs it as an illness of lazy, unmotivated, and weak people who will do anything to get attention. Caregivers face scrutiny on a daily basis as they are accused of "enabling" a loved ones bad behavior or of refusing to see the "reality" of what is really happening. There are no groups of friends and neighbors lining up at our doors with food and warm blankets to wrap us up in to feel all warm, cozy, and supported. Much of what we do is in the shadows and in the recesses of lonely hallways and waiting rooms.
You Don't Always Get What You Need
Caregivers have a way with comforting, I find that a common demominator when I meet other caregivers. We listen and respond in kind. Some of us have learned to do more listening than talking because of the challenges we face in gettng others not living this "life" to understand the complex circumstances we face daily. We listen to our loved ones tell us how they feel, how they don't feel, and how we should be doing more to help them feel better, or how no one understands how they feel. By the time we get a gap in a conversation to talk about what we are feeling there is no one there to hear us.
Family and friends have tired of the constant plea for understanding. Loved ones rarely see past their own suffering or aren't capable of doing so, and every thought shared with anyone outside of our caregiving world is met with a solution, critique, or scorning. Why even try?
I didn't learn the value in speaking to other caregivers until I did. Talking to other caregivers, especially those who are facing similar challenges as we are is priceless. There's no judgement, or at least there is rarely any judgement about the difficulties faced in caring for someone with a mental illness.
I can't tell you the many times I got the "God doesn't give you more than you can handle..." from family and friends or the "It will get better soon...". All of these things are true, and my faith in God, I have learned to be okay with saying it, doesn't take a hit because I'm having a difficult time at that moment.
When we are overwhelmed with the duties of caregiving a listening ear is the solution or just having someone to sit with who doesn't need the 411 or "the tea" of whats happening in our lives beause they already know what we are experiencing can be too powerful for words at times. Having a good support system in place is priceless for Mental Health Caregivers. Not having to bend to the demands others place on us with their well intended responses to what we are facing simplifies our lives. Good intentions can still hurt, and although it was "meant well" it doesn't change that what we are facing is sometimes to big to fit into words. Feeling hopeful while in the grips of hell doesn't feel possible at the very moment we are in a crisis. People wanting us to immediately look at the bright side don't understand the difficulty of seeing the bright side when what we are experiencing may defy logic.
Don't Give Up Your Village Is Out There
There is someone who will listen intently and not expect you to translate what you are experiencing into language they understand or that doesn't defy "common rationale". People who haven't experienced the effects of supporting a loved one with a mental illness sometimes can't wrap their minds around what we share. We can find ourselves feeling isolated in our feelings of anxiety, fear, frustration, and a need stay right in the "fray" of it because we understand our loved one is being tortured by their own mind and we may just be the only anchor keeping them in the world of "reality".
Talking to a trusted friend who's a great listener and doesn't always feel the need to offer you a solution or talk at you is a great way to walk through out loud what you are experiencing. Being able to share both the negative and positives of what caregiving has on your life is very important, even more important is being heard. Having friends who can process what you are telling them without judgement is important. The ability to say, "sometimes I'm scared of my loved one" without causing panic is priceless but even more valuable is a friend who will help you walk through what you are feeling first and address their concern with you about your safety after you have had time to "vent". A friend who will help you to look for resources and possibly attend a therapy session with you until you feel comfortable.
Talking to someone who specializes in caring for someone with a mental illness like a counselor or therapist is a great way to release the negative feelings we can experience with caring for a loved one with a mental illness. We can receive help with coping skills, better ways to communicate, and most importantly processing what we are experiencing. Not everyone is comfortable talking to a therapist but if you can muster up enough courage to make and show up to the appointment it can have a lasting and positive effect on your caregiving and your quality of life.
Joining a Mental Health Caregiver support group will help you to realize how many other caregivers there are out there that are experiencing very similar experiences as you are, it also gives us an opportunity to leave the house and interact with others as some caregivers don't work, and spend the bulk of their time caring for their loved one. Sometimes hardly ever leaving the house.
Nothing calms our fears more as caregivers than to hear someone else knows what it feels like to not know if a loved one is going to find a way to kill themselves if they are left alone, calming down a loved one having a psychotic episode, or any other incidents that come with supporting a loved one with mental illness. Being afraid is a normal reaction to someone who is out of control of their body and terrified at the same time or behaving in a way that can seem "threatening". When that "someone" who is experiencing a negative symptom of their illness of our loved one, it can tangle up our thoughts and emotions in ways that are confusing and conflicting of the love we have for them and they have for us.
It's a complex range of emotions from fear to anger, to resentment and confusion. What is real and what is pretending to be sick are just a few of the questions we caregivers face, sometimes on a daily basis while caring for our loved one. We can also experience the emotions that come with 'even considering' that our loved one isn't having a "real" experience at times...with that comes guilt. Guilt also visits us as we resent having to be the caregiver. Not many caregivers are willing to address those thoughts and emotions and instead choose to internalize them. Going from stable to full on, full blown psychosis can shake our reality and our grasp of the "natural" order or escalation of things. Only another caregiver can fully understand the complexities that come with the various ranges of emotions we can experience while caregiving.
Online Caregiver support groups offer support at any time of day and with a wide range of experiences from other caregivers. It was in an online support group where I first found my voice and a space where I could speak openly about my experiences. Online caregiver support groups provide a place to socialize "virtually" for caregivers and to also seek and share advice on coping with the day to day life challenges of living with and supporting a loved one with a mental illness.
The worst act to oneself is to silence our voice. Caregiving has a way of muting the caregiver and that is one of the many reasons I am so passionate about raising awareness for and about mental health family caregivers. Not speaking up places ourselves and our loved ones at risk. We can become overwhelmed to the point of physical illness and become too ill to care for our loved one. Seeking out assistance is important for us and for our loved one regardless to if it's a professional caregiver to come in and assist them so that we can take a break, or whether it is us prying ourselves away from our caregiving responsibilities long enough to breath and replenish our reserves; caring for ourselves and our well-being first is the most important act during this journey. We have to unplug from all of the weight of caregiving sometimes and plug into some quality time alone, doing what we once enjoyed, otherwise there is not quality of life for us or those we care for.
Remember you don't have to put on the "happy face" to keep others feeling okay about your situation. It's okay to not know how to put into words what you are facing. It's okay to not feel like explaining again what the disorder your loved one has causes or doesn't causes them to do, as we all can understand, sometimes just the act of living in the hell they are trapped inside of their brain is enough to cause them to behave in a way others don't understand. It's okay to still feel conflicted about that as well.
We have an Online Mental Health Caregiver support group that is in its beginning phases called "Care-FULLY" feel free to join. You can use your email to register and create a password or you can use your social media logins and automatically be signed in.
Thank you for stopping in and a warm thank you to you and your family's, those who are a support to you during this time of need, your village, without requiring you to be spot on in what you are going to do, be or exist in the next moment. Those who just sit with you allowing you to be nothing more than someone who has no idea what to do next at the very moment chaos has entangled you, and just hold your hand and even cry with us. Those friends are priceless.