Friday, June 27, 2008

Jammin' It Down Your Throat

Now, you may find this very amusing. I know I do. Did you know that I was a psychiatric technician from 1973 to 1982? Yeah. I worked at a county institution, mostly because in 1973 I had a 4-year-old and a 1-year-old who needed their mommy during the day, so I worked the evening shift while my husband watched them.

No "it takes one to know one" jokes. Even though it's true. I began on the med/surg ward, worked there for about a year, learned to pour medication, give subcutaneous and intramuscular injections (nonprofessionals could do this in New Jersey at that time), and learned firsthand about death and insanity. The things I saw are forever a part of my consciousness and I hope I never forget them.

When I transferred to the short-term 30-day crisis intervention ward, it was there that I met people who were manic depressive. Amazing people, too. An opera singer, a sculptor, a writer, several seductive drug addicts who had immense charm and an unbelievable capacity for self-destruction. All of them brilliant and all of them in the desperate throes of the disorder. We'd all sit and talk for hours. I was their caretaker but they became my friends too. Little did I realize that we had an awful lot in common.

Their mania or depression very often triggered mine, although I was too lost in maintaining bare survival to recognize my own illness. And what was worse? A friend from high school, Becky, was brought into the ward screaming, out of control, trying to climb the barred windows. She was placed in seclusion immediately. And committed. Because I knew her, I was recused from caring for her. But I watched helplessly as she disintegrated mentally. It took five months of commitment before Becky was more or less stabilized. Mostly less but they let her out.

Back then, commitment was fairly simple. You went to your commitment hearing and two doctors had to pronounce you a danger to yourself or others in front of a judge. Then you got the old 60-day commitment order. You couldn't leave and you were forced to take the medication, even if it had to be administered via a shot in the butt.

Then came the public advocates and everything changed. Not for the better, either. Patients now had rights. They could refuse treatment, no matter what. So began the deinstitutionalization of our mental health hospitals. And out the patients went, all too often with no place to go, since their families were sick of dealing with them.

The question then and the question now is, when you are that mentally ill, do you have the right to refuse treatment?

This is a terribly hard moral dilemma. On the one hand, people with manic depression or schizophrenia can be helped with medication. On the other hand, forcing people to swallow pills and spend their days in straight jackets so they won't harm themselves seems to be enormously cruel.

It's not. As someone who has been off the wall crazy and shoved into a hospital against her will, I honestly thank God that I was forced to face my disorder and deal with it. Trust me, I was a hard sell. Maybe in my next post I'll tell you the story. It's in its way funny but also dead-on serious.

I was close to commitment but they didn't go through with it because in actuality, I was not suicidal but rather having suicidal ideations. Now, sometimes those can lead to the real thing but my history was ideations rather than actions, so they let me off the hook. To a point. I wanted to sign myself out but the doctor informed me that if I went out AMA (against medical advice), he'd get me commited. Yikes. I stayed.

When your sense of mental balance is so incredibly warped and out of control, you can't be capable of making sane decisions. Your brain is fucked up. You need someone to support you and maybe sit on you so that you take your meds and do what you need to do to get better.

This doesn't work in many cases. Trying to force someone who's off the wall to take meds is frequently a no-win deal for both sides. But I do believe that anyone that sick can't help themselves. I know I couldn't, when I was at that point. I will be forever grateful to that doctor at Fair Oaks who didn't give into me and made me take what I needed and face my demons.

Incidentally, I saw my high school friend Becky at my 40th reunion last weekend. I could have cried. She barely recognized me and I could see the madness in her eyes. Her hair was done in weird little braids, she wore a dress that was somewhat strange, and a mutual friend of ours, who is a nurse, was staying with her the whole evening. Lisa, the nurse, told me that Becky was very fragile and she was afraid that Becky might act out. She didn't but I could tell she was agitated.

It was then that I realized what I've probably known all along. There are striking degrees of manic depression. Even though I am diagnosed as bipolar I, I am what is known as a high-functioning manic depressive. I haven't been back to the hospital since that time, through the grace of God. I am blessed. I can function, even though it's a daily battle. Becky cannot. And clearly, all the commitments she went through, all the medication she's taken over the years, have brought her scant relief. I grieve for those for whom nothing works. But I don't know if commitment is the right answer or not.


Katherine said...

My husband and I will forever wonder whether commitment would have saved our son. He needed to be hospitalized, taken off all his meds and work through adding them back to find a combination that worked. Instead, after he died we discovered that he had a big bag of meds that he mixed and matched trying to figure it out for himself. He never threw out his old meds. He knew that he needed to be hospitalized, but because of financial cutbacks medicaid wouldn't do it.

He died of pneumonia, but we are convinced it really a result of his illness and incapability of taking care of himself, realizing how sick he was and asking for help when he needed it.

Irene Johnston(fullywoolly) said...

I have been reading your blog for a few years but have not yet commented. This topic, however, is too close to home not to make some attempt to relate the agony that my husband and I have lived with over the past 10 years. To begin with, my father was bipolar, but highly functioning with hospitalizations and shock treatments about every 2 years. He managed to keep his job because as a salesman, even with these periods of illness he was always the best at his job. I myself was diagnosed when I was 17 years old and experienced a major breakdown with hallucinations,etc and was immediately medicated. I spent the better part of my 30's to age 45 in the psych ward of the local hospital trying to find the proper treatment for my "severe" mental disorder. During those years I was given just about every combination of antidepressants, shock treatments, lithium, counseling and all the usual comments such as "she needs a good kick in the pants" and "just think what you're doing to your poor children". In 1995 with the discovery of Paxil, my mood disorder was miraculously tamed so that I have at least lived the last 13 years with relative stability. But this story is not about my father(who lived to the ripe age of 88yrs) or myself(60 yrs.) but of my daughter who died last summer at the age of 35.
The one comfort I had when I was ill was that I had educated both my children about bipolar disorder so that if and when they became ill(I knew that they had a 50/50 chance of inheriting this nightmare) they would not have to go through the pain and loss of years that I had gone through. I have since learned by my daughter's demise that this does not necessarily make a difference in how they choose to deal with their own illness. By the time we discovered how ill our daughter Kristi had become she was too "far gone" mentally to seek out any kind of healthy treatment to relieve her of her demons. She was a blues musician with an excellent record contract and had moved out on her own at 18 years of age to pursue her career. During this period, we only occasionally heard from her through short telephone calls. When she came "home" for a visit, at her request, we were horrified at her mental condition. She had gone from a gentle,kind and responsible woman to a raving lunatic and there was no way in hell that she was going to listen to anyone about going to a psychiatrist. Her standard reply to my pleadings to get help was "I'm not like you". Of course, who would want to be like me? Her musical buddies decided that she just needed a few stiff drinks and maybe a little marijuana and she would be just like new. In the first year of her drinking and drugging we had her committed to a psych ward, and she was only accepted because I had been a long term patient at that hospital and they classified her as having a severe manic condition,thus,she might be a danger to herself or others. In Manitoba they will never hospitalize an alcoholic in a psych facility..they must go to a treatment center ,willingly, where they are dried out, sent home and told to attend AA meetings. Over the past 10 years we begged, pleaded,screamed, etc. at lawyers, doctors, politicians, and whoever would listen, that people with such severe mental disorders need to be forced to take treatment at least once so that when they regain their sanity they will at least be able to make a more rational decision about how to deal with their disorder. Needless to say, this never happened for our daughter. In the 6 months before her death she had been taken by the police a minimum of 6 times to the emergency ward and had to be resuscitated the last 2 times. Every time, she was sent home, by bus, and told that she would only get better if she stopped drinking. In July,a week after we had once again taken her to emergency by breaking down her door, my husband thought that he had her convinced to come home for a while where she could at least gain back her physical health. Unfortunately, the emergency doctor, who had promised to call us to come and get her after she was discharged, did not follow through with his promise and she was intercepted by a fellow alcoholic, whom she had met at an AA meeting. He said that he would put her up in a nice hotel so that she would be able to recover with his help. When he stepped out for a cigarette break she had a seizure and fell and bashed her head into the corner of a coffee table in the motel room. When he returned and found her on the floor he decided that she just needed to lie down for a while and she would feel better. (This was the story he told both the police and us). He said that he knew she would hate him for once again calling for an ambulance to take her to emergency so he just let her sleep.....a sleep from which she never woke up. That evening, my husband had to go to the hospital and allow them to take her off life support because they said that she had such severe brain hemorrhaging that she would never recover. After we picked up her few belongings we found a journal that she had kept mostly through the times that she was desperately trying to live a healthy life. Her last entry stated that she had finally decided that she couldn't do this on her own and was going to accept medical treatment. My husband and I would love to take this story to the newspaper, the legislature and any place that people could possibly do something about this tragedy that happens daily to many families, not just my own. However, just like most of the other families that have lost their children through this tragic set of circumstances, we are just too mentally and physically exhausted ourselves to go through with this. As it is, I am struggling daily to maintain my own bit of sanity and my husband's health has been severely compromised over the 10 years of hell that we have spent trying to get help for our daughter. I completely agree with you when you say that the rights they have given the mentally ill, which are considered "humane", is probably the most barbaric treatment given to any group of people struggling with a chronic illness. Even my own psychiatrist told me that it would never work if treatment was forced upon unwilling mental patients. Needless to say I was absolutely horrified as I am sure that if her daughter were in the same predicament that she would have a completely different opinion. I know, and you also would know from your experience working in a mental facility, that the first agenda in running these wards is to get the patients "quiet and cooperative". I have come to believe over the years that the patients classified as "non respondents" would be better off living in the forests or a desert island, at least they wouldn't have to be locked in their rooms or living under bridges where most of them end up. Sorry for the long rant, I know that you can understand because you have been there. I hope that you are able to maintain the peace that you are so wisely choosing for yourself.:)If you would like to hear some of my daughter's music you can just type "Kristi Johnston""blues" into Google and find a few hundred sites that still sell her CDs.

bspinner said...

Many thanks to katherine and Irene for sharing your stories. My heart breaks for both of you.

Sarah said...

I have spent much time thinking about a response to this post.

I often heard that the only difference between patients and staff is who has the keys ;)

For one thing, I firmly believe that the deinstitutionalization has always been more about the money than about rights and humane treatment.

There are many ways where people are out-of-control and leading destructive lives and mental illness is not at work.

I believe that commitment to a psychiatric facility is much like many other touchy subjects such as removal of children by child protective services, divorce issues, restraining orders, and special education. There are many horror stories where it either is put into action too easily or is impossible to make happen.

First off, there is the issue of how successful treatment can be when it is against a person's will. Just look at how well this works with addiction.

So, when is it appropriate to force treatment on people not caring for themselves? That is so difficult. Where do we draw the lines on this? The pmeds are so strong, and the long-term effects are unknown. I also think people discount the power and impact of psychotherapy, behavior modification, cbt, psychoanalysis, as well as any of the other non-drug treatments. In many ways, people are re-programmed in the way they think and behave. To involve the government in such matters is dicey stuff indeed. What about forced shock? ECT is a controversial treatment for those who choose it, let alone having it performed against one's will.

It is true that there are varying degrees of the mental illnesses. There are also varying degrees of success in treatment. Some of side effects of those pmeds can be pretty nasty. How about weight gain, dry mouth, constipation, diabetes, impotence, and anorgasmia to name a few? A lifetime of being overweight with hemorrhoids, bad breath, cavities, heart disease, diabetes, and no sex life coupled with very little relief from the mental illness is a bitter pill to be forced to swallow. I think that the person left in a lifetime of physical or chemical restraint is much like the person in a persistent vegetative state. Just what do we put a person through to keep her alive? We speak of a dignified death for the one suffering agonizing pain from cancer. What about the mentally ill? If it comes down to a lobotomy or death, I think my time is up. The same thing goes for shake 'n' bake.

This is not to say that any of these treatments should be banned, or that no one should ever be committed to a psychiatric facility. I feel they are powerful, important weapons in the battle. I have seen the same medication save one person and slay another. The medications are not the be-all-end-all. Much can be done aside from them. There is hope for and by the one who has been failed by all medications. There are new treatments on the horizon and much ongoing research. There is still so much that we can do to help ourselves.

I appreciate that you encourage the expression of differing opinions. I also understand if you feel the need to snip all or some of my views if you feel them to be inappropriate for all audiences.