My Mom in the Hospital

My Mom in the Hospital
By Craig R. Bayer
My mother was recently diagnosed with breast cancer, a malady that she, like all women, always feared, even though she has smoked cigarettes for most of her life.
To make matters worse, the cancer spread to one of her legs and her pelvis.
To make matters even worse, my mother suffers from paranoid schizophrenia, a disease which continues to complicate her medical treatment.
My mother and her side of the family have always had a love/hate relationship with doctors: when they cured somebody, especially without utilizing surgery, they were heroes. When somebody died, they blamed the doctor.
Now, it’s my mother who sick and she is very paranoid about her caregivers. The doctors, the nurses, the nurse’s aides, the dietician, the physical therapist, the radiologist…she’s accusing them all of being butchers and quacks. She lectures them on how to do their jobs, based on information and misinformation she has gleaned from reading magazines and Ann Landers. Every time something goes wrong, no matter how minor it is, she presses the panic button.
If the radiologist mistakenly causes her to bang her head during treatment, if she has to take an x-ray, which she condemns as carcinogenic, if the hospital food is bad or even mediocre, if the laxative gives her diarrhea…all the world must come to a stop and so must her treatment. She has refused to take her pills, blown off radiation treatments, verbally abused the hospital staff, threatened to sue the hospital, etc.
She needed ten consecutive days of radiation treatments. On days when I failed to accompany her because I was at a Fountain House colleague training, she refused treatment, so I had to withdraw from the training and be there for ten consecutive days, virtually all day, to make sure that she submitted to treatment. All day she would argue with me about taking the treatment and rant about all the people who “gave her cancer”: the cigarette companies who sold her and the public cigarettes, instead of wholesome food; my grandmother, who condemned her for drinking apricot brandy to ease her cigarette cravings; a woman at her former adult home, who reportedly stole from her and committed other evil acts and who mysteriously has the power to give her cancer, too.
Then after ranting all day, my mother would miraculously change her mind and submit to the radiation, without ever admitting that I was right and she was wrong about the whole process.
All I could do throughout the ordeal was ride out her rants and pray—and try to protect the staff from her bitter, paranoid, desperate venom. It was very embarrassing, especially after I developed a crush on no less than two of her nurses.
But my mother is my mother: she sacrificed her own mental and physical health to get me all the way through college, so I’m going along with her on this arduous journey, not knowing what the results will be. Furthermore, it could be me someday on the radiation table, ranting and raving about whose fault it is, because I am obviously a consumer, too. I need to show some empathy.

Am I My Brother’s Keeper?

Am I My Brother’s Keeper?
By Anonymous
“911, How can I help you?”
“I’m afraid my brother is going to kill himself. He’s a psych patient, not taking his meds. Says he wants to die. Please send someone before he does something.”
“Has he tried to hurt himself? Is he trying now?”
“No, but I’m afraid he will. He’s been talking about it.”
“OK, we’ll send someone right away.”
Ten minutes later three officers and two EMTs arrive. When I tell the cops what’s going on, my brother yells from the bedroom, “Why’d you do this? There’s nothing wrong with me.”
One of the cops pulls me aside. “Let us handle this.”
My sister and her husband are there too, witnesses to what we all agree is my brother’s dire condition: Depression so severe he’s stopped eating. Only gets out of bed to pee. Apartment filled with garbage. He rejects every choice we give him to change the mess he’s in.
Thus, it takes the crisis team half an hour to convince my brother to come with them to the hospital…or else.
Twelve years before, I faced the same dilemma; only I was the one carted off to a hospital. After a long depression, I had tried to kill myself and the authorities showed up when my wife and a friend called for help.
Here I am committing my brother to a psych ward just as I had been. How can one peer do this to another?
My brother’s OCD and depression have always been worse than my bipolar disorder. He spent years in mental hospitals compared to months for me. Our family alternated between blaming him for his condition and fixing him when he broke down.
As his big brother with a diagnosis, I understood him better but still towed the family line. When he didn’t feel dependent on me, he felt betrayed. This is the kind of double bind that ties families in knots.
His love-hate relationship with our mother consumed both their lives. Since she died three years ago, he’s deteriorated mentally and physically. In the past we’d fight but make up. Now there’s no pleasing each other. It seems too late to change a lifetime of anger and guilt. I’m 67; he’s 62.
I ask myself again: How can I, a peer, think about my brother this way? I’ve tried to treat him with the respect of a peer counselor. He’s smart. We can talk about anything except what he wants to do. Inevitably I lose patience.
How bad can this standoff get? I considered forcing ECT on him when he was in the hospital, a treatment I refused during my last hospitalization. But he gained a little weight and his doctor decided ECT wasn’t necessary…yet.
Now he’s back home and I’m taking care of him. He lies in bed doing nothing and I see myself during my worst depressions—helpless and hopeless.
Do I save him from himself or let him drag me down with him? Or do I leave his life up to him for better or worse? In other words, how do I reconcile being a peer and a brother?

All in the Family

All in the Family

By Eleni F.

Acceptance: Step One to a Better Life

There is magic everywhere; on the floors, on the sheets, in the walls. She tries to cut it out but it never really goes away. Spells are put on her by the same people who are always stealing her clothes and dishes. It’s the women her husband is always cheating with. They are the ones putting the evil in her home. She knows he is cheating because he never takes her out and they don’t have sex regularly. I know this because she tells me, because she thinks I am her friend, but I am not. I am her daughter.

My mom has paranoid personality disorder. I finally got her to see a psychiatrist a few years ago but she only went three times. Aside from her mandated stay at the hospital resulting from her calling the cops on my dad for killing her brother who had just passed away in Italy, she has never seen anyone for treatment. As the officers escorted her to the ambulance, I could feel my mind fracture my heart. They kept her for two days, releasing her after discovering I was a mental health counselor. She still blames every pain she gets in her aging body on the drugs they gave her then.

My mom says she is fine. She doesn’t see her illness. That’s common for people with her disorder. Living life with mom has been both an adventure and a lesson in patience. She is one of eight children, most of whom had mental illness. Sadly, none of them actually sought help except for her brother, John, who was schizophrenic and briefly hospitalized when he became catatonic. My mom’s illness has progressively gotten worse. She has ripped the molding off most of the walls in her home. She burns incense every single day, twice a day, to the point where a neighbor once thought our house was on fire. She reads the bible daily, religion being a theme in her paranoia.

I often tell myself I should be glad the only thing I got hit with was depression. My mental health resume is as follows: When I was 14, I was afraid to brush my teeth at night with the door open fearing my father would stab me from behind. When I was 16, I sat on my bed holding his gun, with the bullets spread out like a path to peace before me. When I was 22, I tested my veins with the blade of a knife and washed out the thoughts with vodka. When I was 29, I celebrated with a bottle of pills and some liquor. I was persistent, if not successful. I was also very lucky because I never wanted to die. I was just tired, exhausted from how hard breathing had become. I was tired of being tired.

I have been battling depression most of my life, though I didn’t always know it. I never went to a therapist until I was 22. She was the first of many I would see through the years. She tried putting me on meds but I stopped taking them, deciding I could do better on my own. I never liked the idea of needing something. I had issues with commitment. I can’t remember the number of jobs I’ve held and quit, or the number of therapists I’ve seen. I soon discovered drinking would make me feel better in the moment. So partying became my new antidepressant and blackouts were just a side effect.

I met my husband when I was on this self-prescribed treatment plan. I hid my amount of binge drinking by pre-drinking. He was smart, hard-working, and despite having met at a club, not into partying as I was. He was handsome and he made me laugh. So nine months after meeting this man, who made me want to walk away from the ledge, I married him.

I wish I could say that was the end of my battle, some magical happily ever after cure all, but it wasn’t it. It took years of on and off again binge drinking and getting on and off meds before I managed to understand this was not something I could just get over, or cure. This was something I needed to make peace with and accept. I needed to accept that medication was going to be part of my routine, and that this did not mean I was weak or crazy, it meant I had an illness. It took me years to realize that just like my mother, I had been unraveling in my own way through my own denial. With the support of a man who refused to let me drag him into the depths of my despair and also refused to abandon me there, I started to climb out of the abyss and find myself again, maybe for the very first time.

Through the Fire

Through the Fire

By Angelica

The flaming started with my husband’s suicide. His father had been bipolar and we knew it was a possibility for John. But we never expected to be diagnosed simultaneously. We had the same doctors, but I was hospitalized for what was supposed to be one year.

I was drugged almost to death. I’m very sensitive to medication. My mother and husband waited two weeks for me to recognize and speak to them. My thoughts kept flying away, but I managed to say “Hi.” Mom got me out AMA (against medical advice).

At this point John wanted a divorce. I dove into fear mode. We had three kids to raise and I only had one semester of college. What kind of job could I get? At this point, I could barely go to the grocery store. By then, I was in and out of three hospitals. Medications ruled again.

John racked up $122,000 in debts in two months. The judge did not grant him custody of one of the boys. His lawyers were exasperated with him. He quit his job. He had essentially no friends. The kids and I got the house. Thus, the suicide. Ironically, he received a job offer that same afternoon.

I went to support groups and endeavored to stay out of hospitals. I never went to a grief support group, but we all should have. I was off medication and did alright for one year. I met Chris in that time frame through a computer dating service. I told him I was bipolar and had three children, none of which seemed to bother him. We married six weeks later.

Unbelievably, Chris was diagnosed with bipolar several years later. He forged through his job until he was 59, then went on disability. We graciously allowed for each other’s shortcomings. We didn’t worry so much about money as much as we demonstrated our love for each other. It wasn’t all roses, but the love grew and grew. We have been married for twenty-seven years.

I painted, wrote, crocheted and did needlepoint through the mood swings. I adore colors and am fascinated by words. When I painted, I focused on colors, shapes, shadows and light. Words were invisible to me. One night, I was painting a piano and flowers when a big storm stirred up. I paused. Then I decided if it were my time to go, I would go with a smile. I kept on painting with a quiet joy.

Whenever I was writing my book, all worries and concerns were gone. In a way it was traumatic, yet in another way it was cathartic and left me drained. I was still happy to finish it twenty years later.

Two years after meeting Chris, I found my guru. Jesus had been my first teacher, but I wanted a physically embodied teacher. Baba’s teachings were a lot like Jesus’ only phrased differently. Instead of the Golden Rule, Baba said, “Help ever, hurt never.” I was so happy that I trucked off to India to see him. I spent two months there. It was heaven. I saw Baba in darshan (the seeing of an avatar) over 100 times. He didn’t speak to me there, but he did later in Canada.

When He saw my finished book, He said there were a lot of Vedic truths in that, and how could I sell the truth? So, I promised to only gift them in the future. It was a big test. I always wanted to be an author and sell my books to raise my level of living. I guess God decided differently. So, I accepted that with just a whimper.

Around the same time I met Baba, I also lucked out with a great psychiatrist. His vote was out on the God issue, but he was so caring, I knew God loved him. After several medication cocktails, he hit on the right one. He was surprised how the low dosages were so effective for me. Gratefully, the sparks went out and I stabilized. I haven’t been hospitalized in eight consecutive years. Thank God.

One morning, Dr. T leaned forward and said, “I learned something.” I was all ears. “I learned that you don’t need so much medicine.”

“I told you so…”

“No, I learned that all my patients can have less medication.”

Amen.

Now, one son has bipolarity, and the beat goes on.

A Death and A Life

A Death and A Life
By Steve
It is July 4, 2013. I am a consumer on my way this Independence Day to visit my mother in a nursing facility on Long Island. On the train from Brooklyn, an inebriated young man is yelling out the same dulling message: "I can't wait to get those burgers on the grill. I can't wait to taste the chicken. I can almost smell the grill charcoal. Those sausages are about ready to pop." I am not at a barbecue. As with all too many consumers, I stand or sit alone, except for a few acquaintances, who are similarly encumbered with managing their daily existences.
I approach my mother at the nursing home quietly, almost as a burglar, stealthily, but not wanting to rob her—not to disturb her: she is listing to the left side in her steel-bound contrivance of a wheelchair. This lady, who could tell me and my sisters that one day life would be better, has now arrived at a place belying her wishes and predilections.
She has just turned 86, suffering from Alzheimer's disease, at the nursing facility where she has lived since my middle sister and her husband stopped caring for her because it became too hard to move her from bedroom to bathroom to television and back again. My sister had also nursed my father through his Alzheimer's ordeal, until he, like my mother, had to seek hospital attention.
Now my mother calls home this sad repository of lost and wounded souls like herself. As a consumer, I have no substantial income, no home, no security to offer her, haunting and hurting me all the more, as I see her now, defenseless and utterly alone!
The orderly asks me if I want to feed my mother. I measure out spoonfuls and forkfuls of nourishment for her as I'm sure she did for me 60 years ago when I was an infant, but she stops eating. I call a nurse to help me, but my mother, after opening her eyes to respond to "Ethel, are you OK?", the eyes shut once more.
After the nurse withdraws, I grasp the long textured, firm, elongated fingers of my mother's right hand. Then, I massage her shoulder, telling her "It's going to be OK." Unfortunately, I don't really believe this, but continue talking to her, reassuring her I'm working, which she never has believed. As the 1950s to 1970s muzak continues to blare ferociously through the cavernous lunch/meeting room, I stay entwined with my mother for two hours, maybe less, maybe more...for two hours. Eventually, I leave the nursing facility for home as a defeated warrior.
Back with my mother for what might be a final visit, I find myself at Long Island Jewish Hospital on the eastern end of Queens that slips into western Nassau County. I stroke her black/silver-streaked, sweat-soaked hair. A grotesque plastic mask stretches over her face. An insidious blue-ribbed tube futilely feeds my mother's almost lifeless body. God is trying to take her life, to grant her the only peace she has ever known in her time on this planet.
I'm telling her over and over again that I love her. Even though I'm now an adult, I try to erase the terror, the fear of abandonment of the little boy who never heard any of this love from my mother, or not much. I only heard I was unable to cope successfully with the world. Now my mother faces a long repose. She, who as a teenager, lost her mother, is alone with her son, a consumer who can't help her, as she felt defeated to help him when he was growing up. Thus, we are both cast adrift to find our way home.

Struggling Through the System to Get Help for My Son

Struggling Through the System to Get Help for My Son

By Janene

I don't want my son to wind up in prison

I have been relentlessly seeking help for my 17-year-old son since May of 2011, a month before his 16th birthday. His neurologist was the first healthcare provider to recognize that Z was in need of inpatient treatment. No residential facility I have contacted thus far would take him; jail has become the only solution. Refusal is not due to insurance. I was informed that medical necessity and insurance were approved during most of the intakes. Our health insurance through NYSCOPBA will pay for residential if it is warranted. Most claimed that they cannot treat the mental health issues because of the addiction, or that they cannot treat the addiction because of the mental health issues. 

Z is non-violent. He is reckless and self-destructive with major impulse control issues, feelings of persecution and social/family problems. He does get along well with peers for the most part; problems with authority and continuous apathy are his downfalls. On Z's psycho social evaluation completed by our county's psychiatrist, the three Axis-I diagnoses are 1) bipolar disorder NOS; 2) generalized anxiety disorder; and 3) cannabis addiction. 

I have spent the last 18 months watching his mental illness grow more severe and his addiction to pot (the only thing he has found to temporarily treat his anxiety) spiral into manic episodes, legal issues, lost memory, lost time, and severe depression. All his counselors and I have tried to convince him that the marijuana increases anxiety long-term. However, he is unwilling to stop due to the severity of his symptoms supporting his addiction. He believes cannabis is the only effective medicine for his anxiety and cannot be swayed. He was admitted for one week (the day after his last arrest) to an inpatient adolescent mental health facility, but the duration was too brief to have a lasting effect.

Now my son has been arrested four times for unlawful possession of marijuana, once for petty larceny and once for grand theft, a class E felony he committed while under the influence and does not remember. In fact he signed a confession based on what his friends told him he did. My son's public attorney needs to know what facility will accept him when the attorney meets with the DA tomorrow, one week before Z's court date. Z is willing to go into treatment if his attorney can convince the DA to accept the completion of a program as time served.

Most of my time these past two weeks has been spent searching for treatment, then gathering, copying and faxing paperwork to the one facility I was sure would accept him. When I was done submitting records, we waited 5 days to learn Z was denied. His mental health diagnosis precedes his cannabis addiction so they will not take him due to his mental health. Nor will any of the other many facilities I have spoken with over the past year and a half. After this denial, I admit I gave up looking for placement. I had been trying for so long and I had less than a day left before the attorneys met; it seemed futile. I called one more place that I found on the internet. They said they would accept him. I pray that there will be a time to submit the bed letter to my son's attorney for presentation to the DA, but I have less than 24 hours left. After searching for the past 18 months, I learned it is too late to present to the court system. Z would have to be in the facility to get the letter completed, which the public defender strongly advises against until after attending court.

I do not think 60 days in county jail will be the best solution for him or for his future, nor does his attorney or counselor nor does the victim of his non-violent crime or the crime victim's advocacy board. My son is terrified that a stay in a rehabilitation facility will rob him of his individuality, take away his sense of adventure and mold him into a compliant "sheep." He would prefer jail except that he knows what violation and violence potentially awaits him. I believe his lifestyle has taken away his sense of accomplishment and exasperated his learning disabilities to a degree that he is unable to function normally, even with an IQ of 140 just a few short years ago.

I need to fill out the releases at County Mental Health and to the attorney. I have just started a new job also and cannot take time away. I work on this daily before work or during my half an hour lunch. I am emotionally exhausted and cannot get assistance from his case manager since he states he does not know what to do. I am alone in this as I have been for the past decade of meetings, therapy sessions, Z's expulsion from BOCES Career and Technology Center due to behavior (without any mandated hearings) and looking for appropriate care and the supports we need as a family. Z's anxiety is so bad he cannot even attend classes at his school and must go to tutoring after school. Most events that others find usual become endless day to day battles with Z and he struggles against me when I force him. The system has failed to help him and the future seems bleak.