Monday, December 29, 2014

So, What Do We Do Now?

Guilt. Resignation. Fear. Mental Immobility.

Chances are you have felt one or all of these things at some point in the caring for of your loved one with schizophrenia. Your loved one is violent or refusing to take meds or living on their own and not taking care of themselves or they are not communicating with you. These circumstances are often lived by those of you caring for someone with schizophrenia. Do you feel like there is something wrong with you that you feel these things? If so, I am here to tell you that you are fine, that you are human and that this way of life is not easy.

Now, I know that those of you with schizophrenia have insurmountable issues to deal with. I know that you struggle. I have watched Thomas in his most difficult moments fight to just get through a day and I have seen how it tears him down emotionally and even, on some level, physically. I know that you struggle and from the place that I am now, I have reserves to offer help to Thomas and others like you. What happens, though, when things get difficult, when day after day this illness invades your life, it invades ours too. The reality is, it is just as hard for us but of course in different ways. I say this so you understand that we do our best to understand your experience but what I write today is about our experience. I don't want to hurt any feelings but the reality of this illness is that EVERYONE is affected in one form or another.

So, for you caregivers out there, what do you do with these feelings? How do you cope with the guilt of not being more involved, not giving just one more piece of yourself and not feeling like you can make this all better? All of our experiences are different and yet all the same too but in the middle of it all we feel alone, like no one will ever understand and we beat ourselves up because we feel like failures of the worst kind--especially those of us with children with schizophrenia. I'll be the first to admit that I don't have the answers to how to deal with this, not real ones anyway, not ones that a psychologist or counselor could offer but if you're like me when I'm struggling as a caregiver, I don't feel like even a psychologist with their vast clinical experience can truly understand what I'm going through. Believe me, I have tried therapy and in the end what it boiled down to was that tracking my moods or doing some kind of worksheet were not helpful things for me. In the end, what I needed most was someone to just listen, someone to just let me cry, someone to offer me an entire box of Kleenex and an empty trash can to hold them all when I am done with them.

Often, in the midst of mental immobility, I have asked myself, "what do I do now?" "Where do I go?" "Who can I talk to to help my loved one find their way to better care?" "Who can I talk to to help ME?" This place is one of the worst kinds of prisons because you feel stuck and unable to make decisions, sometimes for your loved one and sometimes just to figure out what to cook for dinner. You are not alone in this. I promise you that and I want you to know that what you are facing right now feels crippling but you MUST try to get through today and do the best that you can with the resources that are in your grasp.

Resignation is another feeling that we feel. When we have tried to reason with our loved one, when pleading has failed, when all out arguing has brought you and your loved one to your knees, that is when resignation sets in and you want to throw your hands in the air and often you do. I can't tell you how many times I have, with Thomas, tried so hard to get him help, to show him that what he's doing is self-destructive and to ultimately just throw my hands in the air and walk away. We have all been there and we will be there again someday and walking away, throwing your hands in the air in frustration and RESIGNATION will all be things that all of us will do. If you are there now, you are not alone.

Then there is guilt, the destroyer of souls, the heavy black anvil that occupies our abdomen. What do we do after we've given in and walked away? Right then and there the guilt sets in. If you are the parent of a loved one with schizophrenia the guilt is even stronger. After all, aren't we, as parents, supposed to provide everything for our child? Aren't we supposed to give them comfort? Aren't we supposed to SAVE THEM? The truth of the matter is, especially when our loved one refuses our help, refuses to listen, refuses to make changes, it is then that our ability to offer help evaporates. After that the guilt settles in and it eats us alive. What you need to understand about guilt is that we all feel it, we have all been there and none of us have the magic formula for alleviating ourselves of that feeling. It, too, is a prison and it is one that I hope you can free yourself of, especially when you have exhausted all avenues and you're left empty handed and standing alone. The feeling of guilt is toxic and it will eat you alive but you must find your way around it, you must dig that heavy black anvil out of your gut and you must find a life for yourself where you begin to take care of yourself again.

I have no advice today unfortunately. I don't even think it's my place to offer "tips on how to cope". What I do have to offer to you is the fact that I have been there and I know exactly what you are feeling. I write this blog because I don't want others to feel alone. I want to show you all that I, too, have been where you are. All of these things have consumed me but somehow I have found my way through and past them to a better place. Perhaps I just became strong somehow and found my resolve. Perhaps something in Thomas shifted just enough that I could find my way inside to help him. Perhaps I just found others like me out there that could say to me "me too" and that helped me to take a deep breath and accept the circumstances I was in with Thomas.

What I have for you, today, is love. What I have are virtual hugs. What I have are prayers for you. What I have to offer is my complete understanding of what you are going through.

You are not alone.

Try, today, to pick yourself up, dust yourself off, and take some time for yourself. Go out for a walk. Take a hot bath. Read a good book. Binge watch your favorite show on Netflix. Just take some time for yourself.

Most importantly, forgive yourself. You are human. You have given what you have to offer. It may not feel like enough but it is.

It is.

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