Caregiver Tool Kit: Balancing Independence With Needs – Being The Best Support While Respecting Our
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Letting go helps us to to live in a more peaceful state of mind and helps restore our balance. It allows others to be responsible for themselves and for us to take our hands off situations that do not belong to us. This frees us from unnecessary stress. - Melody Beattie
There is not a more fragile relationship than that of a Mental Health Family Caregiver and an Adult Child recovering from, learning to manage, and living with a mental health disorder. Looking back on the beginning of the journey for us and our son it was filled with lots of disrespect and disregard for his feelings and struggles. If I had it to do all over again I would choose differently and I would choose to better educate myself in how to support a loved one with a mental health diagnosis. Being witness to our loved ones destructive behavior, especially those of an adult child, places us parents in a compromising position I believe.
We protect our children from people and things that would cause them harm and when it comes to mental illness we are fighting a formidable opponent and its trapped in the body of someone we love. We watch as it drags them up and down the road of life causing road rash and severe open wounds and wonder how in the world can our loved one keep “letting ‘it’ drive” when its evident it is such a poor navigator. It’s that belief system that creates in us a conflict, a conflict between our adult child's advocate and their protector, and we are confused because we are both fighting for and with our adult child.
All of the time we spent fighting our son about being stronger and taking the medication, and going to therapy and never showing respect for the “thing” he was wrestling with called mental illness and how exhausting and overwhelming it is to fight with yourself about hurting yourself. Watching the emotional pain that came with being out of control of your mind and body yet being along for the “hell-a-cious” and terrifying ride has to be one of the scariest things an individual can have happen to them outside of being caught in a horrible nightmare and cannot wake up…for many that is what it is like living with their diagnosis.
Being a survivor myself I understand the struggle and the battle, and honestly I believe that is what gave me room for more empathy and a willingness to research and learn about my sons illness through the eyes of those who lived “wide open” with the illness and shared both struggles and accomplishments, testimony is so powerful and if you are a survivor the best you can do is share your story to help others “make it”.
I wrestle with negative thoughts, I wrestle with depression and with the assault on my self esteem and confidence and it is only because of that affliction that I was truly able to empathize with my son. Until we have walked a mile in another’s shoes we don’t know what it takes to be who they are and accomplish what they do.
Once you understand the level of difficulty your loved one faces on a daily basis…heck on an hourly and minute by minute basis you understand the amount of “grit” required to do what may seem like a simple task to us, for example washing dishes. We may visit our loved one and wonder why the house in such a disarray. Understanding how their brain works and how they are perceiving the world around them, including their home and chores helps us to not be judgmental and to seek to be of the greatest assistance where they are the weakest or are struggling with. Could the answer be using disposable dishes and serving ware that way a loved one does not get overwhelmed with that chore. It’s not about forcing our way of living or thinking on them but appreciating and respecting the way they process the world around them, what’s challenging and what isn’t.
How Do I Find What My Loved Ones Strengths Are When They Need So Much Help?
Simply put you give them room to explore, you stand on the sidelines and whatever frustrates them the most find out if that is because they are doing it the “hard way”, maybe they need to learn a more efficient way, or they just don’t want to do it and if that’s the reason see if you can find a way to eliminate that chore or a way to have someone else to do it like a cleaning service or yourself until they can feel stronger and more confident. Sometimes we as caregivers need to accept our loved one may never find a way to like a task or necessary chore and that is where we learn to be creative.
Being a caregiver is not an easy job and many people are frustrated by the obligations of being a caregiver because they themselves struggle in the area of organization or staying focused on a task to completion. Some of us caregivers hold full time jobs and don’t want to have more to do when we get home and I understand that, I also understand what we don’t do still needs to be done and it doesn’t go away until it is done. What I try to stress to caregivers is do it now, do it while it is very hard so that you can get to the easy part.
When I quit “hovering” over my son, calling him all times a day and throughout the day and assured him I was there if he needed me also explaining if he could just check in with me at some point during the day so that I knew he was okay, and until I was able to accept he didn’t need my help any longer he understood on a different level. He understood I was just afraid he would get into a bad spot and wouldn’t call out for help and that helped him to understand why I was so “naggy” about knowing if he was okay…explaining that my anxiety would drive me into a full blown movie about what has happened to him otherwise and how that was a trigger for me gave him empathy for me as well. Did it work every time? No. Sometimes it would be days with no word from him with me calling and calling leaving voicemail or texting and it would escalate from “Please call me I want to know you are okay…” to “…this is so &%$&*$# ridiculous that you would be so insensitive and leave us to worry about you, why are you doing this? It’s selfish and inconsiderate…”
Eventually I learned by listening to myself when I decided I would leave a message and it was all about me and what I needed. I needed to be reassured he was okay, it was more about me. When I changed how I viewed his not answering the phone, when I realized he was in a different state of mind I understood how to speak to him on the phone and to respect both what he was going through and my need to know and be assured he was okay. In that order.
Backing off and leaving our loved one to make their own decisions and to fail and get up again builds their confidence up and gives them the courage to try new things and new goals. If we are constantly there making sure they don’t fall, and that it doesn’t hurt if they do then it only prolongs their suffering and prolongs our time with more responsibility than we need for their lives.
Being The Best Support
Listen, Research, Listen, Research, Listen, Research, Listen, Research…and the cycle continues. Our loved one is our greatest asset when it comes to what is best for their life. It sounds like that is such an easy consideration and that it should come naturally but it doesn’t and its not. It takes discipline on the part of the parent. It takes harnessing our “parent brain” when we want to step in and critique, give feedback, and “show them how to do it”.
I remember getting desperate and reaching out to an advocate I’d been following who had the same disorder my son had. I sent her this long drawn out email about all that we’d been doing to help my son and all that we’d spent and given to him and when she wrote back it was so simple I wondered why I’d never thought of it. “Did you ask your son what he wants to do with his life? Did you ask him how you can help him?” I was dumbfounded literally. Why had I thought it was me who knew what was best for him and not he himself?
My “parent brain” went into full blown recovery mode after realizing that he’d been struggling with the management of his illness and not considering how the illness was wreaking havoc on his life and that what was happening was totally normal. Because I’d be given this open access to his life during his weakest of moments and toughest of times I’d taken it as he was incapable of taking care of himself, not that he was struggling to do so. In hindsight I understand how debilitating that must have been and after asking him what could we do to help him and watching his eyes light up at our confidence in his ability to make a decision about his own life I understood how much of an impact we’d had in delaying his recovery and grinding down what bit of self-esteem he had left. Was that the intended goal? No but sometimes as parents we don’t realize how overbearing we can become, and more importantly how our need for our child to fit into the mold or the life we had in mind for them can be the noose around their neck.
We are able to be the best support for our son because we backed off and let him set the pace, we backed off and let him tell us our roles and when he made a mistake instead of preaching about it we asked what do you think you could have done differently and a host of other questions that caused him to trouble shoot and self-assess without forcing or imposing our thoughts and beliefs for his life or our desires for his life.
If you want to be the best support for your loved one ask them how. Watch from the sidelines and don’t jump in right away, let them tread water and find the bottom for themselves sometimes, that is how they build their strength. Celebrate the victories with them as well as the failures because both of them serve our loved ones and us.