November 11, 2008
I have Caregiver’s burn out. Rather I have Caregiver’s crash and burn out. I haven’t spoken to many people who are in the same boat as me – clearly something I need to start doing – but I imagine that there are others although today it feels like a very lonely position to have indeed. The “boat” that I am in is three- fold – mother, daughter and sister. Let me explain my roles as they pertain to Caregiver’s crash and burn out.
I have three children – Evan 15, Brayden, 13 and Jaxen, 9. A year ago I had only two children, the oldest ones, but a suicide attempt by my sister, who has Borderline Personality Disorder, brought Jaxen to me and he has been with me ever since – granted private guardianship to me in September actually. The Judge said – “Any and all needs this child has will now be your responsibility. It will be as if you bore him yourself”. And so it has been, the inclusion of a child in my home so engrained that surely I could have bore him myself. He is the only one who seems appropriate for this responsibility, yet I feel like the Judge could have been talking about all the members of my family that my responsibility to them has been as if I bore them myself.
Evan is going to be 15 in 7 days. On this day 12 years ago, a week before his 3rd birthday, my Father killed himself. He hung himself in his office on Remembrance Day so there was never a chance I would forget the day he died. I barely remember my son’s 3rd year. I remember crying a lot and acting as if I could hide it from him. My other son was almost 1. I fenced them into the living room to play while I lay on my couch and sobbed for almost a year. My husband at the time said “someone has to watch these kids”. So I made sure my eyes were always open when I cried. My husband and I broke up a year after that. I could barely contend with his ambivalence of my Father’s death and he could not understand my grief of a man who he had never met anyways.
At any rate, I now have two teenagers and one traumatized, all be it, delightful, 9 year old. My oldest son has grown tired of the drama that a dead Grandfather and a mentally unstable aunt leave you. In the last year there has been so much drama – more dramatic than a Hollywood movie actually – that I have lost sight of him and now suddenly he is a fully fledged teenager and I am the frantic mother trying to keep up with him – always worried that the saga of mental illness and addiction that has spread through my family like a wild fire will taint him also. Though he can’t understand my anguish when he tries out alcohol like every other teenager, he is aware that it is different than all the other mothers who lecture their children on the dangers of drugs and alcohol. I am more desperate and panicked at his excessive use – which friends tell me is not excessive at all. I wonder how far the genetic link to addiction runs and guesstimate with his own two parents not having been addicts that he has a better chance – right? I wonder every time I catch him drinking if this will be the catalyst – the moment I will think of 10 years from now when I am scraping my alcoholic son off the drive way while he pisses his amazing intellect away. His cousin on his Dad’s side – the brilliant mini scientist as a child – is now a crack addict blowing in and out of everyone’s lives. It wasn’t because he was dumb. But he had a Grandmother on his mom’s side who was a mean and unrepentant drunk and we still all wonder about the day that one of his other Aunt’s let him smoke weed at her house. Was that the thing? Was that the moment it happened? I am sure that his mother like myself will wonder about it for all the rest of her life. So here I sit brutally angry at the genetics of my mentally ill sister. Will they be ignited in my children? Will her son, who is so timid and sweet now, turn into a hell raiser as a teenager unable to turn away from the legacy so loudly left to him?
Let me explain my role as daughter and how it also pertains to Care Giver’s burn. My mom has chronic and deep depression. If she told you the story she would say she felt “sad” for most of her life, as if she was missing something or that she was being left behind in some way. My mother is a very talented woman though years of being called stupid as a child scarred her from ever really being appreciated for her talents. I appreciate and understand my mom’s story the most because I have now been married and divorced and I now have had children with many issues – something I could not understand about her when I was just one of her children with issues. But my mother has placed a very heavy burden on my shoulders almost from birth. I am and always have been her care giver. I was groomed from the cradle to soothe my mother. I was the pretty baby. I was the quiet and low maintenance baby. I was also the second born after a hyper and difficult child who had no Father. I was my Father’s first born and so I was coveted in many ways that my sister was not and years later the rift and the anger would separate us from being siblings to being virtual strangers.
The short version of the story is that I, in my quiet and eager nature to please, became the one my mom leaned on most heavily during her depression. I never felt enraged by her living in pyjamas and not showing up for any parent evenings at my school. I felt sorry. I felt sometimes responsible – not so much in the creation of but certainly in the fixing of my mother’s condition. I wanted her to be happy. I wanted my whole family to be happy. I started reading the bible when I was 8 and I routinely read passages to my mom that I thought would uplift her spirit. I highlighted all the uplifting passages and I believed that if she just heard enough of them she too would be uplifted just like the people in the bible. She did not. And I have not touched the Bible since.
My role as a sister is much more complicated. I have three siblings. My oldest sister is one I have nearly no contact with. If we even consider discussing something more advanced than the weather then there is likely to be war as there has for almost my whole life as her sister. My sister inherently hates me. Think back to the time when quiet, lovely baby arrives in the wake of her three year old angst and you have the fairly solid foundation for what happened the rest of our lives. I ended up tall like my father and skinny and I was an anti-social nerd who concentrated on getting honours in school. There was just so much for her to dislike about me in her awkward teen years where she seemed to struggle with grades and teachers. I doubt my parents were very helpful in their late night diatribes about “being more like your sister”. SO she hated me, still does. This used to make me cry. I never think of her anymore. And except for the time she married a guy that I was half in the middle of dating – I have never much wished her any harm either.
My brother has been – according to him – diagnosed with Asbergers Syndrome. I spoke to a counsellor on the phone about him once which confirmed that he was actually seeing one but otherwise my brother’s in-workings are a complete mystery to me. And yet we of the four siblings were the closest. There is probably no one else on earth that knows as much about him as me or that he would ever allow close to him but me. I say this as the one year anniversary of his absence from my life has just lapsed. For almost the first time in my life that I can remember I am not in charge of my brother’s mental health. He will not call me and give me a guilt trip for not calling him. He will not show up on my doorstep un-announced with a box full of laundry and “stuff” and stay for a week until I convince him he needs to go home. He will not, as in our last encounter, show up with everything he owns in big boxes and claim he is only coming for a couple of days and a few loads of laundry and then ultimately advise me that he gave up his apartment and is moving to Toronto but he isn’t quite sure when (insert two months here). He will not show up and devise grand art projects or outdoor adventures with my children that are usually completely inappropriate for their age that could never even begin to compete with the trip I had planned to the Science Center. No he will not show up for now, maybe not ever. I finally said the last time some things that maybe his mind cannot comprehend are hurt and disappointment instead of the venom he will process it as. I was his last life line to his family that however much he rebukes and hates, he seemed so desperate to stay in somehow. I guess we all feel that way. If you ask any one of us we would tell you that we would hands down choose anyone else to be our family. Well I say that but on a good day, my younger sister will tell you that she loves us all so dearly that it hurts her.
My youngest sister – our baby. She is the reason I have attempted to put any of this down on paper at all. She is the most complex of the sister role – having been her mother, sister, friend, and now care giver and for which she is the pilot of my crash and burn. My sister has always been the “wild” one. My brother hates her so much for flagrantly displaying the dysfunction in our family with undue repentance. He wanted so much to be normal and even further to that, successful and envied normal. She was the monkey wrench to all his plans. I remember the time he told me he was at a party and she stripped down naked and ran down the street completely drunk and high and without the slightest bit of shame. If you asked her now, she would likely laugh until she cried. She doesn’t remember doing it but she would say, “yeah that’s something I would do”. That was when she was a teenager. That was before she was someone’s mother. That was just the tip of the ice berg for odd and humiliating behaviours she would ultimately display. It is so easy when someone is gregarious and over the top to chalk it up to too many tequilas or what some of my friends used to call “free” – free from embarrassment or societal constraints. Sometimes we envied her and her butterfly wings spread so carelessly and flying her from place to place with almost no consequence. She was lovable enough for people to forgive her outrageous moments and still hang in to coach her on why she needed to tone it down. She was lovable enough that when people wanted to just “go crazy” they almost inevitably dialled her number and she would never turn you down. Indeed I dialled her number many times after my divorce to take me out and get rowdy and obnoxious on the drink. She never judged you – indeed I think she was completely incapable of it. The catch was her expectation to never be judged, even as her behaviours started to spiral out of mainstream and into uncomfortable weird, indeed sometimes to seemingly cruel retribution for something you didn’t even know you had done to her. What you had sometimes done to her was to live life well and without her. That almost always fuelled some extreme behaviour to get your attention. And so it has been a circus of extremes for over a year now. She is homeless now, has been unable to hold a job and routinely stolen untold amounts of money from my mom to feed her out of control drug habit; The habit that no doubt medicates her tumultuous brain from imploding on her – despite the obvious fact to us that the drugs have only hastened the problem. She is now in a government mental health hospital. She will be held for 30 days. It is the first time in a year I have not wondered if she will live today. I do not jump nearly as high when the phone rings and I have slept, though somewhat fitfully, more now than I have in a year. I have chosen not to speak to her while she is in the hospital because the words that keep seeping into my mouth are vile and without concern. My anger is a constant companion that takes over every thought I have of her. My guilty friend is never far behind to remind me of our blood bond. I recognize that in her fragile state of cautious optimism in the walls of the warm and caring hospital, she is unable to process my anger, as indeed neither am I. My anger is as complex as our relationship and obviously I have to take the steps to allow someone other than my dear husband to help me sort it out. I know that this anger has come at the end of a very long year that only tails the end of a very long decade with my sister’s fight with both mental illness and addiction. Her story only skirts the story of my parents who both fought mental illness with four children in tow. Frankly, I am amazed that any of us made it sometimes so I try to plant virtuous seeds of what my parents managed to pass onto us that was good – my mother’s steely determination to support and hang onto her kids despite any circumstance and my Father’s devastating lesson of what happens when you let your guard down for even a second.
I tell stories. I have tried other forms of therapy to find short reprieves in my anxious state. I have never been faced with so much of my own anger and really the ability to process this story from my own perspective. I have always told my family’s story from what I felt they must be feeling. I often hung up my own concerns and qualms and just concentrated on getting them well, getting them to like me and ultimately to need me. My own version of mental illness if you will – co-dependence. I have found every partner in my life to display some or all of the characteristics that play to my role in my family - Addiction, emotional severity, helplessness, abusive and most importantly, dependant. As I try in my second marriage to absolve this relationship of these demons, I have found that my inevitable feelings of anger have risen to the top and trumped all other feelings. Because now I have tried to break free and make my own way and this family continues to haunt me and press me back to old and unhealthy ways. I find I have to remind my mother almost daily to stop calling me about my sister. She often says she does not want to burden me but old habits die hard and she continues to pile the burden upon me even as she authentically struggles to keep it from me. I am her parent too. I have played the role so caringly and compassionately all these years that I imagine she must feel exactly the same way I did as a child when I realized that she was no longer capable to care for me in ways that I desperately needed. And I am dulled by the irony of the situation and anger flares again when I think to myself that she deserves to feel the same way I did as a child. But I bow my head to the guilt of perspective knowing she herself had a terrible childhood and that she tried her very best in the face of some substantial demons. She wants to be my mother and I want to be her daughter but it is an awkward dance when she tries to impart motherly wisdom on me. I want to accept it but it seems flimsy and contrived like something she read in a magazine. I want to love my sister and support her in her long road back to healthy. But I have been on this road before and the surroundings and the end of the journey look all too familiar. For almost two years after her first fight back from addiction, my sister was well – better than well, she was my best friend, my confidant. I have never had a healthy relationship with any of my siblings and for this one brief period of time, I had BBQs and dinner parties with my sister. We played games and surprised and spoiled each other on birthdays. We lamented about our children and partners in eerily normal circumstances. We laughed and talked on the phone almost every single day. I rubbed her belly through her second pregnancy and I cried like a baby at the hospital when she had to have an emergency c-section and when for a fleeting moment we did not know if she would be ok. I got down on my knees in the hospital and prayed to God not to take my sister from me. I had waited so long and fought so hard for this to come to such a needless halt. She survived the birth. I fell in love with her daughter and forged such a close bond with her son that strangers would revel in our joy together. Our partners became close friends and indeed every weekend and every holiday went without saying that we would all be together. This is where my anger and despair gets mixed in a dangerous chemical reaction. Just before her daughter turned a year old and a week before she was to walk down the aisle in marriage, my sister disappeared. She turned into someone I do not recognize. It wasn’t a slow progression. The sister I sat on my deck with and played raucous family games with was gone. She was replaced with a fitful, unstable and selfish person. She was the “wild child” x 100 and she took no prisoners on her rampage. Her suicide attempts continue to be her main weapon against us – having all been through one, we are vulnerable to the manipulation. Though I know she is quite serious in her lack of will to live, she has joked to me that if she wanted to die, she would be dead. She laughs about the over-jealous nurse trying to pour charcoal down her throat and imploring her to live – all while I stand by barely able to keep my mouth from freezing open in horror and reproach. “This isn’t funny” I think. But I say nothing. And she keeps her hilarious monologue up about how they treat the “crazies” here which she clearly does not include herself as.
I know that my family is not unique. I know that other families have dealt with in even more devastating measure, the effects of mental illness. I know that despite how lonely it feels that there are other people who are the lone sensible wolves in a family condemned to live out mental illness. I know that I am the “normal” my family has had to contend with and measure up to and do their very best to cut down to acceptable standards. I have sat in countless psychologists and physiatrists offices being gently told that there is simply nothing wrong with me. I have tried at times to contract mental illness – to rally the symptoms and become unstable like so many in my family. And my brain reprimands itself for allowing me to manipulate itself that way. My trusty brain that always snaps to – that always has the likely and resolute answer to everything, even if I need to just look it up.
So I do not have a diagnosed mental illness. Boo hoo. It turns out I am nothing special. I am simply riding the coat tails of my elusive family members into a blazing tale of adventure. It is a common joke among our friends that my husband and I have a rain cloud over us. It only follows us and it follows us everywhere. I am so offended and enraged by this statement; As if it is our claim to fame – one which barely includes us and our likely talents and achievements. Those things that we wish for others to notice and proclaim have fallen by the way side. We are merely a by product of the mental illness machine. We are the people that other people tell sad stories about in which to make you feel better about your momentary sad moment. I hate people at times. I hate people I love. I hate when friends ask me if I want to go get wasted and forget about it – as if the poison that infects my sister could somehow magically make me forget about it. Irony. An Irony that only I seem to get. I don’t think people are out to get me or purposely make me angry but they do – in droves. I have lost so many friends over this – a fact my sister seems to have no idea is related to her in any way (cue more anger). In fact I have whittled down the list of people I call my friends because I simply don’t have the energy to keep up a facade that I am nice or happy these days. I have reduced my friends to people who are just as comfortable as me in the filth of human imperfection – who have either been infected by it or are infecting others. I am missing out on parties and planned trips because I don’t want to know what I am missing. I am miserable. Functional but miserable. I stopped running when my sister went into the hospital. I started running every morning because I told my sister I knew she had to make a choice every day to live or die and that the best I could do to compare was to get out of bed at 6am and run. I ran every day mentally sending her my choice to live. When she was put in the hospital, I stopped. Instantly. I started to feel bitter about getting up and running every god damn day when she was in a hospital being roused and greeted with breakfast. Yes, I am pissed off that my sister is being treated so well. I am pissed that I still have to get up and run to maintain my weight and my mental health and she does not. I don’t want to run now. I represents my love for her and I simply don’t want to love her anymore. But my health is failing. I can’t remember things as well as when I run. I don’t have any energy and I am bitchy and callous since I stopped running. I don’t know if it coincides with not running or facing the countdown to when they let her out – homeless, no money and no one left to care if she lives or dies. Just me and my mom and my mom is edging me out as the most likely to follow through. I do not want to care for her when she gets out. I don’t want to listen to her renewed hopes for a better life and how she could have never done it without me which will inevitably lead to her list of things she needs me to do. I am tired of putting my children to the backburner and running off every time she calls. I am tired of hearing the phone ring and wondering what the hell could have happened to her now. I am mostly unable to move towards a day where my sister might be the woman I so dearly loved and coveted only to lose her again. I want no part of this. I feel like I have watched her die and I want just to lay my flowers on her grave each year and get on with it already. And yet I know when the day comes, when the grave is real and the moment is annually upon me – it will irretrievably kill parts of me.
Today I will celebrate 12 years of my Dad being gone – I say celebrate because we have tried to make the best of it each year and celebrate the good of my Father which seems so easy to spot now that he is gone. My husband will cook a feast as he did when he was trying to woo me and impress me and now which he does because he deeply loves me and wants to celebrate life too. He wants to be the good in my life – however difficult a task it has been for him. And my anger flares again because instead of a celebration, it will be fraught with paranoia about how the rest of my family will handle it. Will they call? Will there be tears and talk of regret? I don’t want this anymore. I want to celebrate my father, his daughter and the time when that was all there was, when that was all that was needed.
