Nightmares: Every child has them but does every dream that their mother, the person who is supposed to protect them from all harm is the person trying to kill them? When I look back I wonder how many of my childhood memories are a child's view of their parent falling down the rabbit hole.
In a lot of ways that is how I look back on my childhood. As I look back at it now I see signs that could have pointed the family into the right direction sooner if we had only known that it was the Mad Hatter leading us and not the White Rabbit.
Why is mental illness so much harder to accept in a family than a physical
illness? Is it because the illness remains hidden while the symptoms continue to destroy the family? Is it because the stigma of mental illness is still so strong that families don't feel comfortable getting the help they need? Or is it because the person you once knew and loved is no longer in the same body?
When I look at mental illness I view it through the paradigm of the child of a paranoid schizophrenic mother. My views and experiences may not be the same as yours. In fact they aren't even the same as my brother who grew up in the same house as I.
Most women experience the onset of mental illness at around twenty-one year and ten months of age. That was around the time in my mother's life that I was born. A majority of these women remain undiagnosed for between eight and ten years. My mother wasn't diagnosed until I was around fourteen. At that point her diagnosis wasn't set in stone and in fact it seemed that each doctor that she saw had a different diagnosis. That is about fourteen years of not realizing that there were actually different aspects of her personality that didn't fit into a cohesive puzzle. There was always a piece missing or extra piece that just didn't fit. (NAMI) One day she would be the kind, confused Alice and the next she could be the Queen of Hearts yelling “Off with her head.” It is hard to tiptoe around someone when you don't know the tiptoeing is needed. It helps to know that I wasn't the only child that felt this way about their mother as demonstrated in the following quote.
“I don't have room here to go into the atrocities she put us through as children – the swings between brief periods of loving behavior and wild hateful rages; being expected to do something one day and punished for it the next.” (Group 40)
My mother was born the second of five children in 1948. She always seemed to be the least successful. She never went to college and by the time I was in fourth grade my homework was beyond her ability to help. My parents were married when my dad had just turned twenty-one and my mom was about four months shy of her twenty-first birthday. I was born thirteen months later, followed twenty-eight months later by my sister and again twenty-six months later by my brother.
Trying to piece together some of my early childhood memories seems to be a jumble at times. When I was younger I used to have nightmares that my mother was trying to kill the three of us. The dreams varied frequently. One was of us in a kitchen and she was preparing us to be cooked for dinner. Very much in the style of Hansel & Gretel. Somehow I would trick her out of the house and try locking her out. However the doors in these dreams never closed. The handles would be missing or the doors would be missing a huge chunk at the top or bottom.
Another dream would be the three of us kids running along a dirt road trying to get away from her. She would be wielding a knife. I would hide my brother and sister in a ditch or culvert and draw her away from them.
After each of these dream I would always wake in total fear and have to check that my brother and sister were alright. Several times I would crawl into my little brothers bed before I would be able to fall back asleep. To this day I will still occasionally have these dreams.
My mother wasn't really grounded in reality and my dad was into avoidance of problems. When I was younger I knew my parents marriage was volatile but I never understood why. She was one of those people that figured that if she had a blank check she had money. I couldn't tell you the number of times that my dad had to go to the local grocery store to cover bounced checks. She just wouldn't tell him that she had written a check for something so he wouldn't know to deduct the amount from their checking account. Eventually he realized that he needed to remove her name from any financial accounts.
“The three syndromes most characteristic of schizophrenia are reality distortion, disorganization, and psychomotor poverty. Reality distortion is associated with malfunction in a neural system that involves medial temporal structures and plays a central role in the evaluation of mental activity in relation to context. Disorganization involves malfunction in a circuity that links ventral frontal cortex, anterior cingulate, parietal cortex, and thalamus and plays a major role in the selection of activity. Psychomotor poverty arises from malfunction in a circuit that includes dorsal frontal cortex and striatum as is responsible for planning and initiating of mental activity.” (Liddell 22)
Wow how can one simple paragraph explain my mother's life so succinctly? I look back at the previous paragraphs that I wrote and all three of those syndromes show up. Back to those dreams though. Was I distorting her reality or was she distorting mine?
It's funny when everyone asks where were you when Kennedy was shot, the space shuttle blew up, or the World Trade Center was attacked you know exactly where you were and what you were doing. One would think that the could remember such an important thing as when your mother was actually diagnosed with mental illness.
What I do remember is that we didn't have a phone at the time so when my my brother, sister, and I found my mother catatonic on the couch one of us (I think it may have been my sister that we sent) had to run to a neighbors house to have her come over and help us. Dad was still at work so after our neighbor called the ambulance for mom we called him to let him know what was going on. The ambulance came and mother was still unresponsive so they took her with them. The couch that we found her on was a hide-a-bed that my great-grandmother had passed away on several months earlier. I hated that couch.
“Schizophrenia is probably the cruelest and most devastating of the various mental illnesses.” (Andreason 193). I don't know much about the rest of the mental illnesses but I will agree that this was devastating for our family.
She came back home after awhile but nothing really changed. We went to family counseling a couple times but depending on the counselor we were either told that her mental illness was hereditary or not. That the family (parents or spouse) were to blame for not seeing signs sooner or not. I never felt that there were any straight answers but then again I had no idea what to ask. Now with the internet access available I would hope that I would take the time to look up information so that I could ask informed questions.
Life continued on with occasional trips to the state mental hospital for her. We were never allowed to visit her there. Which was probably a good thing since this was the same hospital that was used in “One Flew Over the Cuckoo's Nest”. In January 2009 a documentary about the Oregon State Hospital was announced it might be interesting to watch when it is completed.
“The evidence is strong that schizophrenia is a familial disorder and that the familial aggregation of schizophrenia is due largely, although probably not entirely, to genetic factors. ... Research using statistical methods has failed over the past two decades to clearly delineate the mode of transmission of schizophrenia, a result that is understandable given its likely complexity.” (Riley and Kendler 130)
This brings into play the nurture vs. nature theory. Yes you may be predisposed to mental illness but you may never develop any signs of it. Or no you are not predisposed to mental illness but if you are surrounded by mentally ill people you may start to act that way.
“The damaging judgments made about our part in the cause and exacerbation of the illness left each of us angry with the professionals and each other.” (Group 72)
“The presence in the family of a relative with chronic mental illness corrodes not only relationships with the mentally ill relative, but also all other relationships within the family. The families not only lose the emotional support of the patient, but often become unable to care for and to understand each other.” (Group 41)
This was definitely demonstrated in my family. Within months of her diagnosis my grandparent's ended their marriage of 45+ years. My dad tried to hold our family together but with the heavy medical bills and the limits that health insurance put on inpatient stays it wasn't easy.
My mom kicked me out of the house when I was sixteen. Since my dad and I agreed that it would be for the best I went to live with my paternal grandmother. That was probably the most peaceful time of my life. It was actually normal.
My mom and dad finally had to separate so that she would qualify for state help. I know my dad felt guilty and that he was abandoning her but he did try to make things work. They “reconciled” twice before he finally had to call it quits.
I was living back with them during the second reconciliation. My dad needed help with money so that he could buy a house. I think he was hoping that by moving away from the memories things would improve.
The first night I was back in the house my mom told me I had to ask their permission to stay out all night. I wasn't even done moving completely out of my rental house at this point and had actually planned on spending the evening there while I finished packing. This did not go over well with me and I made a point of telling my dad that since I was doing him this favor of moving back in I wasn't going to be subjected to her arbitrary rules. That was the last time that she tried to order me in any way.
My dad's job took him out of state on week long business trips. This is another reason that I continued to live with them. Someone else to keep an eye on mom. While he was gone on one of these trips mom had another episode. She would start pacing around the yard barefoot and decided to frisk all my friends that came over. She told them all that she was with the CIA and was on a top secret mission. It got to the point one time that my friends all stayed over one evening and I made my brother and sister sleep in the room with all of us and not only did I lock the door, I barricaded it also. I had a huge room with tons of floor space so there was my best friend and her husband and his three cousins and my brother and sister all having a slumber party, at least as far as my brother and sister were concerned.
When I was twenty I managed to slip up and get myself in a little trouble. I had to tell my dad that I was pregnant and had no plans of remaining involved with the father. My dad's support was immeasurable. However after my daughter was born my mother got this idea in her head that my dad was actually my daughter's dad and that my dad was the physical incarnation of the devil.
We didn't realize how bad this had gotten until one day my dad and I had gone to get some parts to make household repairs. My married friends stopped by, they knew about my mom's mental state so when she started telling them how she would use her secret CIA identity to help them adopt my daughter it raised some serious red flags. I had left my daughter with my sister because we were only going to be gone about forty minutes and she was sound asleep. When we came back my friend pulled me aside and told me what my mother had been saying while we were gone. She explained that my mom thought they would be much better parents for my daughter than I would and was actually sounding threatening towards the babies continued existence if they didn't take her.
When my dad was informed of this he decided it had become dangerous for my mom to physically be around my daughter and himself. She was committed to the Oregon State Hospital again at this point.
There they placed her on a new medication regimen that involved lithium so her blood levels had to be checked on a weekly basis. Due to her previous pattern of not taking her medication as directed it was determined that she needed to live in a group home.
It was such a relief to have the worry of her out of our hands. She would have round the clock caretakers that would make sure that her medicine was regulated properly and taken every time it was supposed to be. The regulation of medicine involved weekly blood tests to verify the correct lithium levels in her system.
“When I look back I am not surprised that we reacted that way. What else could we have done with little or no experience with mental illness? They were the experts; we were a confused family of non-experts. We were a family struggling to keep our sanity amidst conflicting opinions and bizarre and frightening behavior on the part of our previously healthy son.” (Group 72)
Mother actually seemed to do as well as could be in the group home environment they placed her in and actually became a beloved member of their family. Though I didn't know this until I was talking to her group home manager after she passed away. Unfortunately for my mom schizophrenics tend to self medicate through alcohol and/or drugs. (Caton 1153)
Her self medication was nicotine. At one point she was smoking three to four packs a day. This last Christmas it caught up with her and she was diagnosed with throat cancer. Her throat was 90% blocked when she was rushed to the emergency room. I really wondered how anybody could miss something like that until this June.
In March I saw her after she had just completed her chemotherapy treatment and for once in over 20+ years I saw her without any nicotine stains on her fingers and you could actually get close enough to hug her without being overwhelmed by the smell. The prognosis appeared to be good. All the cancer was gone. I received another call the end of June. She was in the hospital again but this time they didn't know what was wrong.
They spent a couple days running tests and consulting before they announced that the cancer was back. She had gone from no visible throat cancer when she was re-checked at the end of May to a 50% blockage by the first of July. The cancer was fast growing and was now no longer contained in just her throat. They found several spots on each of her lungs.
They gave her a choice. Laryngectomy or hospice care. She could lose her voice completely (at this point she could only whisper) or she could call it quits and just resign herself to death. Her doctor was nice enough to let her stay in the hospital while she decided. But she had to decide quickly. She decided that since they couldn't even say that the surgery would grant her extra time she would rather go out with dignity.
Adolph Hitler's personal physician stated at the Nuremberg trials on February 5th 1947, the year before my mom was born, “The life of an insane person is not in keeping with human dignity.” (Harmon 147) Her life may not have been as “dignified” as a person could want but my Aunt Becky and I tried to make sure that her death would be as dignified as possible.
She passed away July 19th 2009. That ended her struggle with mental illness but her family, especially her mom and ex-husband (my dad) still wonder if they could have done anything different. These two people haven't spoken since my parent's divorce but my dad was there at the end when we realized that my grandmothers deck was dangerous. He tried to help mend bridges by helping her son-in-law and grandchildren build her a new deck.
The treatment of people with mental illness has come a long way. It still doesn't remove all of the stigma that seems to be attached to the people afflicted and their families.
Once upon a time in the United States there were laws that forced the sterilization of people with mental illness. Indiana started it off in 1907 and over the next twenty years thirty other states were added to the list. However in 1923 state courts started declaring the laws unconstitutional. (Harmon 153)
“The National Alliance for the Mentally Ill (NAMI) was founded in 1979 and has grown into an enormous social and political force.” (Andreasen 342) I wish we had known about them but they were still in their infancy when we needed them in the mid-80s. In fact I didn't even find out they existed until about twenty minutes before I received the last call stating that my mom was in the hospital. Since then I have determined that there is nothing that could honor my mother's memory more than involving myself with their organization. I started that this year by volunteering at the NAMI-Boise walk October 3rd, two weeks before we actually held her memorial.
While it is easy to say, “With the help of the “biological revolution,” we have advanced beyond the misconception that mental illness results from a defect in a person's character that he or she can cure simply by “shaping up.” We now recognize mental illnesses as biomedical diseases similar to heart disease or cancer.” (Andreasen 343) It doesn't make it easy to live with the shell of the person you once knew.
Some simple facts. Most women experience a delay of 8.3 years between the onset of symptoms and treatment. I believe the delay in my moms case was somewhere in the range of 10-15 years. 32% of people schizophrenics live with a caregiver (family, friend, or paid companion), 31% are able to live on their own, 14% reside in a group home environment. (NAMI) All are viable choice and none should be discounted in a decision. No one choice means that you are any less loving of your family member. Each situation calls for a different solution.
There are so many forms of mental illness that it would take volumes to discuss them all. I focused on schizophrenia because that is where my family history comes from. Many of the aspects of mental illness are the same though. The person that you knew for so long has had a radical change in their behavior. Not only do they need help but counseling for yourself isn't a bad idea either.
Some thoughts to think about. Would you want your friend or family member to tell you if they had schizophrenia? 79% of the people NAMI surveyed would. Of those people surveyed though only 46% would be willing to tell their friends if they were diagnosed. Would you want to date someone with untreated schizophrenia? 80% of those same people would feel discomfort while only 49% would be uncomfortable if the person had been receiving treatment. Would you be afraid for your safety around a person who has untreated schizophrenia? 71% of the people said they would. That number dropped significantly if the person had started receiving treatment down to 21%. (NAMI)
For caregivers 43% indicated that they are afraid of the person in their care. Even though the “National Institute of Mental Health's “Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE)” study found that people diagnosed with schizophrenia who lived with their families and felt “listened to most of the time” had half the rate of violence of those who felt less supported.” (NAMI)
The problem with living with someone as a caregiver is that the position is twenty four hours a day, seven days a week. Unless respite care is provided or a family can break it up into shifts the caregiver can quickly wear themselves out. Again this just shows that no one solution is right for everyone. You can only do your best to make sure both the person with mental illness and the caregivers are treated with as much respect and dignity as possible.
It would be so nice to end this with this passage from Lewis Carroll's Alice in Wonderland; `Oh, I've had such a curious dream!' said Alice. And she told her sister, as well as she could remember them, all these strange Adventures of hers that you have just been reading about; and, when she had finished, her sister kissed her, and said `It was a curious dream, dear, certainly; but now run in to your tea: it's getting late.'
However it wasn't a dream and is just a small example of some of the effects that mental illness can have. These effect not just on the person with the illness but their entire families as well.
