The Holidays Part 2..

so the holidays are over. It didn't turn out as I had planned but it never does, I guess that's just like life, never turns out how we think it will. my dad stayed with me over Christmas eve but it almost didn't get to that point. I called him on the 23rd and he was complaining about his bad back and how he is a "cripple" and is tired. He wanted me to come up to him( I live a hour away). He eventually calmed down and I said I would take him back anytime he wanted to go back. We planned to go out to eat with his sisters on Christmas eve and to my uncles on christmas, I didn't think we would make it to the Christmas day part and I was right. I picked him up around 3 p.m., he was asleep in his bed. I woke him up and we left. He had his bag in hand. He didn't say much on the car ride to the restaurant, he just looked out the window. As I predicted the restaurant was pretty over stimulating for him, he was upset about the long drive. "why can't I be closer?", he said, I told him we are trying and there isn't much we could do, the process just takes time. Some days my dad likes where he is at and some days he doesn't, this was one of those days that he didn't like it. I bought him "real cigarettes" for Christmas usually I just roll them  so we can save money. I went outside with him as he smoked, "you are the love of my life, Mike." I didn't know what to say back but my heart sank. He continued to complain about being far away but my mind was kind of drifting thinking about what that meant? I was mad, sad and heartbroken all in one. People with serious mental illness usually don't hold back and my dad never did with me. I kind of wish he would...sometimes.

We had dinner and it was weird since I never went out to eat on Christmas before, my mom always had dinner at our house. My dad made a toast to my mom, something like."my wife is looking down on us today" something like that, I was kind of in a daze. We finished dinner, opened presents and went back to my place. He liked my apartment. We were watching Miracle on 34th Street( ironic watching it with a mentally ill person). He fell asleep on the couch for a few hours. Woke back up about 12 am had a smoke and some coffee and went back to bed, in my bed which I gladly gave him. 

The next events will be burned into my head for the rest of my life. We walked upstairs and I showed him my room. He laid down in my bed with all of his clothes on, shoes on and above the covers. I said, "dad don't you want to change?". He said, "no I'm fine." I said, "at least take your shoes off." He did. As I was leaving, he said  "Mike can you leave the light on in the hallway and leave the door open." I did and was heartbroken again. He was scared, alone and broken. I felt an unsettling wave of sadness the rest of the night. I was the father and he was the son. I was my mom but she was gone, everything was wrong, it wasn't Christmas. I was so sad a disease had made my dad sleep in his clothes, in my bed with the hall light on. I cried... I grieved for my mom, my dad and me, everything that we had lost all seemed to take hold of me in a matter of hours as I stayed awake during the night.

I felt I needed to double my efforts in that second to make the conditions for the mentally ill better, everything needs to be better, that's what I kept thinking.Seeing him hobble around my apartment, I was saddened because I felt like he wouldn't be around for much longer, he's gone through so much and maybe this is the ending. I don't know but that's what I felt. He slept for a few hours to about 3am, got up had coffee and his smokes(outside). I  was pretending to be sleeping on the couch and he keep saying to go up in my room and sleep, so noble. He wanted to take the couch, so noble. He gives his smokes, coffee and snacks away where he lives..hes a good man and this is such an unfair fate to be trapped in a body that gave out on you years ago. To watch your wife die and be away from your son and daughter for that matter.

I made him cereal and about 5am he wanted to go home, so I took him back. When I dropped him off I said goodbye and I love you, he cried. It felt like another goodbye. I have said a lot of those over the last year. Everything came rushing back over those two days, my mom's death, my dad's illness and the great hole that's in my life that hasn't been filled since all of this. People keep telling me I hope you can find peace but I haven't  yet, maybe more time will help, but I feel like I'm at war. As we have seen in the news recently people are dying because of mental illness, my mom died young and what about my dad? I think they can both be listed in the body count. I think the system is broken, I think we can change that, I think if we have it on our power to make things better, we have the duty to do so. At the same time I know you can only fight so hard and so long before you burn out and get tired. I had this dream a few days before Christmas that my dad was healthy, maybe my hope is just that.. a dream.

So that was my Christmas....haha... Merry Christmas everyone..

Mike McCarthy

The Holidays..

The holidays can be a stressful time for anymore but when mental illness is involved it's always a bit tougher. I have always just kind of wanted them to be OVER. Let's get it done and move on. Not that I don't like Christmas but it's anything but relaxing and it has always been that way. Schizophrenia doesn't make good dinner conversation. My mom loved the holidays and always had our house decorated very nice, but having people over always made me super anxious and I'm still the same way I don't really like having people I don't feel understand me in my apartment and my dad doesn't even live with my anymore. The anxiety really isn't for me because I was used to my dad's behavior but for everyone else in the family. They had no idea how to deal with my dad or what he was like in our home. I was worried how others would react to his outbursts or him talking to himself, you would think this wouldn't make me so anxious since these people were family but to me they seemed liked strangers. I just wanted to say, "can you all just leave my house so I can relax and be at peace." I think my mom even felt the same way, not that she was embarrassed of my dad or anything but just didn't feel real comfortable having others  seeing my dad in an unstable state.


Not that my family had the cops called or my dad was causing fist fights or anything like that, more like something is a little off here and no one is saying anything. One of the things about my dad's schizophrenia is that his cognitive abilities are impaired i.e. he gets things confused a lot, dates are off and asks the same question over and over again. He thinks I lived in New york city for a year, that never happened, I visited new york for an audition( it was about 3 days long). So he is prone to talking about the past, well the past he thinks happened. That can make conversations awkward and confusing for people that don't understand mental illness. The other factor that make the holidays tough is people ask a lot of questions, for someone with schizophrenia that's not really good. It's hard for the unwell brain to process all this information coming at them at once, that can make things unclear and threatening even if it's not supposed to be. Can we also not talk about  controversial topics( not politics, no religion, no money)? My dad is obsessed is talking about money, I have noticed this with other mentally ill people, they seem to always be worried about income which is understandable since they really don't have any. I almost guarantee my dad will ask what happened with my moms insurance money, he asks me this almost every time I talk to him. I say, "dad your brother is taking care of it" "everything is fine." I hate talking about money, I just want to eat my ham and go home..so that brings me to this year.

I'm having my dad stay with my this year, One day over Christmas eve to Christmas day. We will see how this works out and if it can be done ever again. I live in an urban area, somewhere my dad has never lived. He chain smokes and has a broken back so it's tough for him to get around sometimes. I'm really hoping he doesn't smoke in my house or pee in my bed. that would not be good, haha. I'm hoping he doesn't yell at anybody and we can just eat our ham and go home, in peace, well as peaceful as we can be.

Mike McCarthy

When Psychiatric Patients Are Also Parents...

by Stefania Electriclady 

...This is the title of the presentation I held at the Milano WAPR Conference, on November 12th. It was the first time I spoke about my experience as a daughter of parents with a mental illness in a public context in my country, Italy. Fortunately the lights of hope in a better future for the next generations and the love that links me to my father and mother, in addition to the strong bond grown in the last two years with the peers I met on the Internet who advocate for COPMI in their countries, helped me fight against my fears and go straight to the goal of trying to give a voice to Italian children of parents suffering from a mental illness.

Everything started back in 2010, when my mother had her third serious manic relapse and I started looking for information on Google. Thanks to my language knowledge, a passion and an ability I inherited from my parents, I had access to many resources that opened my eyes to a new truth that had been lying underneath for so many years: I wasn't the only one and all my feelings related to my parents' illnesses were true and meaningful. For the first time in my life, in my 30s, I discovered I was one of the million Children of Parents with a Mental Illness. I could relate to the stories shared on the net by other daughters and sons living abroad and couldn't hold back the tears. I cried because finally I had found who I was and why I was the person I am. My lived experience had been validated by the stories of others who had decided to share them! It was painful but liberating at the same time. I then decided to do the same for people in my country and thus opened my own blog, "Mia Madre E' Bipolare" (My Mother Is Bipolar), which attracted more than 20,000 visits in less than two years. 

When I was fifteen and everything started to crumble in my own family, Internet was not available for everyone in my country yet. Therefore we were really isolated and lonely in our personal family tragedies. It was really hard or even impossible to vent out and I remember a glassy shell growing around me with which I was still able to "function" in daily life (at school, with friends...) without bursting out in tears in front of other people about what was happening at home, yet with a deep feeling of loss always accompanying me. Internet is nowadays truly making the difference for us all, permitting anyone who wants it to talk to other daughters and sons freely about their experience, without feeling judged or pitied, to share helpful resources and build joint efforts to advocate for the rights of our families and especially for children and teens who often don't have a voice to get the support they need. 

The First International Young Carers Congress, held in Vancouver in May 2012, has been the crowning of the little "miracle" made possible by social networks. I there met for the first time in person Maggie, Melisande, Christophe, Paola and Nerrelle and we presented together about the role of social media for system change. Back in my days of pain and suffering, I would have never imagined one day I would have been flying across the ocean to speak up for the scared young girl I once had been, to use a painful experience as plant food for a future better outcome for families like mine. Face to face meeting with my peers I had until that moment only known online has been an amazing experience that blew my mind and enriched me with positive thinking, helping me pursue my effort once back in my country.

Vancouver is also important as it validated my lived experience as a nonprofit blogger, founder of the first Italian community for "daughters and sons" and the daughter of a bipolar mother and of a father who suffered from major depression as - besides other reasons - a consequence of the negative spiral triggered by my mother's illness. This validation helped me find a "space" to advocate in my own country, as it lead me to the invitation to present at the Milano WAPR Conference in a symposium about Forgotten Children. My special thanks go therefore to Contatto Onlus, a nonprofit organization who got interested in planning preventive interventions in their operating area in Milano. 

It's not easy for me to speak in public in general, imagine about this topic! Also, a great fear was, and partly still is, that my "coming out" could create problems to my mother and my family. Being open about a mental illness in our family is a delicate issue for many of us daughters and sons, that may prevent us from venting out or taking action openly. It took me a lot of time to get to the stage in which I am now, trying to find the right balance to build on this effort and, at the same time, respecting the choices of the people I love and who prefer not to disclose informations about the illness. This aspect may explain why presenting in a congress like WAPR has been such a challenge for me. 

Now that I have achieved this important goal, I may say I am truly proud and happy not to have let fears win over hope. Despite the many difficulties I encountered (stigma, anxiety, feelings of rejection, prejudices, etc.), I feel like I've walked the first of the long series of steps needed in order to enlighten the big iceberg that is still hidden in our homes. We definitely need to bring to the attention of society and policy makers that there is a big number of familes who are yet not seen by services. I am talking in particular about the daughters and sons of parents who aren't aware they have a mental illness and therefore are refusing treatment. I have been speaking to nurses, social workers, psychologists and psychiatrist and even people belonging to family members' associations and it struck me how invisible we are even to people who are starting to become more sensitive to the problem! I heard people say that children of people with psychosis and deliriums refusing treatment are just a few exceptions and I had a hard time trying to explain that the fact that services don't see us doesn't mean that we don't exist. Proof of that is the high number of e-mails, facebook messages and comments on my blog written by daughters and sons whose parent(s) are not in treatment. So part of my effort during my stay in Milano has been pointing out the urgency to find effective ways to reach these children, too. 

Obviously the best way to help them is to also help their parents, but in all those cases in which services can't intervene on parents (as the law states that people can't be cured against their will), we can't leave their kids alone. This does not mean, as some professionals may think, that we need to take these kids and teens away from their mentally ill parents, but that we, as a society, need to offer them tools to cope, become resilient and not to lose their own potential. Therefore I really tried to focus on the urge to translate the existing books for children of parents with a mental illness in all languages, to work with schools, with family doctors and media and start a system change. 

I know it's not something that can be done in one day, but at least we can start. Families who struggle with a mental illness and their children can't wait. Prevention is the key, but in order to prevent we need to build a common language, bringing down the walls that divide us into categories and prevent us from working together for the same purpose. I've witnessed a lot of stigma and reserve and it has not been easy to face them. Still I understand that making people aware of us means for them having to revise a whole system of thought and belief and this may cause defensiveness and denial. 

Talking about my story and also listening to researchers presenting about our families hasn't always been easy, as painful memories often arise from the past and deeply hidden "scars" may reopen. This reminded me that when we are advocating we always need to remember that we have boundaries to protect and that we need to take care of ourselves in order to keep the energy that we need for a longlasting effort. I noticed that this is another key issue requiring our attention, as professionals are not always aware of the risk of emotional draining we are exposed to when participating in these events. 

In the end, I am truly honored to have had the opportunity to give my contribution for children of parents with a mental illness in my country, but, as you can imagine, I can't wait to see the efforts finally turning into Action! I know I'll have to be patient and faithful...but I firmly believe in the power of the domino effect and maybe the first little domino block has finally been pushed. We'll see!