The Super Girl Syndrome Print
Written by JB   
After wishing for so long that I could find people who could actually relate, I found this forum.

My mom became ill for the first time 25 years ago, when I was 10, and she 39. It's quite an unusual age for the onset of bi-polar illness (with psychosis) but nothing about her case seems to fit "the norm".
My mom is a loving, giving, caring human being, who also happens to have a very severe mental illness. Because I love her dearly for who she is (or was before she got sick) I have never been able to "let go". I've strived to separate he from her illness, although admittedly it hasn't always been easy to do. At 10, I used to literally tie myself to her at night, to keep her out of harms way AND to keep me from waking up in a panic to the eerie sight of her in front of a snowy television set, in the darkness, listening to "the voices". The phone would often be left off the hook, the sound of which would wake me up. And the stove jets would be maxed. There were also nights when she'd wander outside in the cold NY night, naked, to stare at the moon (which like most light sources beamed private messages to her). I was always a super independent child, and my dad was 26 years her senior, so I took it upon myself to be her night watch person, since poor old dad had the day shift. I also had a brother one year my senior and another out of the house who was 11 years my senior. Neither my dad or brothers seemed to have what it took to deal with the harsh reality of her illness. They all were content to pretend it wasn't real until it was too real to ignore. I knew better. I knew it was real, and dangerous. So from that tender age of 10 I became "super-girl", convinced that if I did "x,y and z" things would be kept under control.

As bad as her episodes were for twenty years, they always got better after hospitalizations and weeks (if not months) of medication adjustments. When lithium first was approved, my mom was amongst one of the early receptors. And it definitely helped. Her episodes were no longer as frightening or violent (she'd often hallucinate that a tumor was growing out of my brother's side -- and try to remove it for him with a butcher knife -- which was truly more of an act of love than violence but she was also a physical force to be reckoned with -- as it often took up to 3 people to constrain her if she was trying to make a fast break for the front door while psychotic)

With lithium, her illness took on a comedic psychosis at times - she was prone to "holding people up with bananas" and breaking into a Broadway rendition of "there's no business like show business" on street corners. You have to find humor in these things or you will go mad yourself. Anyway, for 20 years, the I somehow managed to feel in control of her illness -- because her episodes could be stabilized with time and effort. And although it was hard (I put myself through college, while she was ill at times, with precious little support from anyone) I managed on my own for the most part. (My dad passed away at 84 and I still had the strange compulsion "to protect" my brothers from the harsh reality of her illness.)

The one solace that I did eventually have was meeting an marrying a kind, understanding, intelligent and compassionate man. I also worked in wholesale travel for years -- which allowed me the much needed ability to escape from reality at times. I don't think I could have made it without my loving husband or those occasional get-aways! Anyway, my biggest fear was always that my mom would become ill beyond control when she was elderly...and as if a premonition, that's exactly what happened. Fiver years ago. my mom had a manic episode (with psychosis as is her norm) that she never fully recovered from. After months in different hospitals (she kept getting bounced after 30 days which, unbeknownst to me at the time, was the CA max. covered stay in a psychiatric facility). Eventually she was sent to a locked facility, where she was brutalized. -- That was the worst experience of my life. (Fortunately for her, as with many of her psychotic episodes, she doesn't remember the experience much.)

After the physical attack the floodgates finally burst and ALL the repressed sadness and despair of 25 years came flooding to the surface. I suffered my own bout with severe depression and only overcame it with the loving support of my husband.

I was able to get her out of the hell hole, and she now resides in an assisted living senior residential center. She's also been bounced around between doctors several times these past years, as fewer and fewer accept MediCal. She is now seen by the Stanford geriatric-psych clinic, since she was hospitalized there last. Since her visual and auditory hallucinations have not gone away over these past 5 years, her actual diagnosis was officially changed from bipolar with psychosis to schizoaffective disorder.

Having to watch her suffer the nearly ceaseless agony of hallucinations for 5 years has taken its toll on me. I am no longer the infinitely optimistic "super-girl" of years gone by. I now live on an emotional roller-coaster - doing well when she has a good day, and feeling full of despair and sadness when she has a day filled with frightening hallucinations.

My mom is a wonderful woman who does not complain or ask why, she is spiritual by nature and I've heard her say that her faith in god is what kept her from ever considering suicide as a relief option. I am thankful for that, because HER strength now sustains me.

I have finally come to a painful conclusion after these 5 years of constant med trials which culminated with her starting on clozaril (the famous "last resort med" which requires intense blood monitoring and doctor's appts.) - and that conclusion is that she will probably never fully recover. I resisted this notion for so long that I put my entire life on hold for these 5 years, focusing almost exclusively on her care.

I now need to give myself permission to move on and stop being "super daughter". I have dreams that have been on hold for far too long, and I yearn to fulfill them. But I am still racked with guilt and a sense of abandoning my mom, even though I've been more like a mom to her for most of my life. Part of this is cultural, as I am half Hispanic and it is a cultural norm for the daughter to be care-taker of the parents.

I've never shared this story openly and still find myself keeping the details of her illness from people - because of the stigma and ignorance that I've been met with the few times I did try to share it. Which really pisses me off because of who my mom is, and how strong she is.

My in-laws (also Hispanic) constantly ask why my husband and I haven't had children yet. There are many shared reasons, and we both feel uncertain about whether or not to be parents, but I have a whole other set of reasons that include being tired of being a parent, since that's essentially what I've been since age 10, wanting to FINALLY have my own life, and being terrified by the prospect that my child would have a 25% chance of having a mental illness. That's just not something I could handle. The decision to have a child is ours and ours alone to make, and I know that, but I can't help feel the pressure or resent them for not understanding -- since they are aware of my mom's illness and how much care I giver her.

Anyway, I guess I just need to get all of this out in the hope that someone out there can relate. There are so many unique emotions involved for the children of parents with mental illness. I find myself resentful when someone compares there situation to mine because they are now taking care of an elderly parent...because I've taken care of my mom for most of my life her being elderly just happens to complicate things. She is 74 now, but aside from her mental illness I think she's physically healthier than I am. Longevity definitely runs in her family, so this is all the more reason why I tried so hard to help her get well, since I'm sure she has many years of life left.

There are also many senior issues to deal with, which are also greatly complicated by her illness, like primary care doctors who CONSTANTLY put her on trendy senior meds. that wind up counter-acting her psych meds. EVEN THOUGH THEY SHOULD KNOW BETTER. I regularly provide current med lists to both doctors, and that's all I can do, but somehow it's not always enough...which just drive me crazy and induces a lot of anxiety in me.

She also has a unique living arrangement that could be terminated at any time -- and this is another source of anxiety, since there are literally no quality senior assisted living residences or skilled care environments that even accept people whose primary diagnosis is mental illness. So in addition to my ongoing fears for her stability, I also fear the precarious perch we seem to be on in terms of her living situation.

Is there anyone out there that can relate??? It would be so great to hear from you!