Thursday, February 26, 2009

Supporting the Caregiver

On a news show last evening there was a video review of the tone of the message used by President Obama to present his budget to the American people. It compared the manner of presentation with that of former presidents Jimmy Carter and Ronald Reagan. As one old enough to remember both Carter, Regan and that era, it was punctuated with energy shortages, high interest rates, inflation, recession and gloom. President Carter faithfully expressed to America that times were tough and we just had to struggle with the problems.

Regan, on the other hand, expressed optimism and the hope and promise of recovery and better days ahead. Sure enough, the better days followed. Not, one could argue, so much from the implementation of his politics but the readjustment of the American Psyche. Today President Obama is also facing the same dilemma as President Carter, having been presented with enormous challenges. He is finding ways of expressing the need to take action, but not to cloak it in the harsh realism that defined Jimmy Carter. Carter was right about the problems, just not the right person to cheer up and inspire America. America opted for the positive message of Regan in spite of its deficits.

So what, you might ask, does this have to do with supporting the caregiver? Yesterday at the end of a meeting discussing the progress of my ill daughter, my wife and I were asked about what support systems we were using to support ourselves. The person went on to describe how terrible and stressful and demanding and horrible it must be to face what we have faced in getting treatment for our daughter. While I realize and acknowledge that the person was attempting to help, they could have no been more misguided on how I personally view the concept of giving care and how I viewed the message. There are good reasons for this perception because I had called the person to express outrage at the difficulty of dealing with the care system. She mistakenly took this to mean that I was frustrated at having to support my loved one. Nothing could be further from the truth. The anger and frustration that I have comes mostly from engaging the care system, not from needing to provide care for my Daughter.

As a parent who willing and knowingly brought a child into the world, you must learn to separate and convey to others how you view the care giving process. In my case, it is simply an obligation to provide for my daughter what she needs. It is an obligation that I take seriously and completely. As a caregiver, what you realize from life experience is that the progress of any given disease is not under your control. Diseases such as diabetes that you have personally you may influence the outcome. As a caregiver you do not have that luxury. What you do have control over is what services can be provided for your loved one in order that they may access the system of care. In my case, the frustration comes more from my experience with the care system than from the person who I care for. The person who is ill did not cause their disease nor do they deliberately sabotage their treatment. They struggle with the limitations and restrictions imposed by their disease.

From the beginning of my daughter's care, there has been, on behalf of the care system, very restrictive limitations on the access to and amount of treatment available to assist her in recovery from her disease. This is one of the great tragedies of mental illness. Whether it is restriction by lack of services, number of treatments or any other measure, the system is not structured from the viewpoint of providing care as much as it is limiting the care to keep down costs. At an even deeper level, science about "behavioral" health cannot even pinpoint the cause of such illness because not enough is known about the diseases themselves. In some circles, the very concept of psychiatry is thought to be phony even though it exists without a doubt to those who have dealt with its presence in their loved ones.

The horror of the disease of schizophrenia is not that it exists, it comes from the idea that we know so little about it and the system we use to treat it is often demeaning and frustrating to engage. As a caregiver, you begin to experience the rigidity of the care system and its rules and regulations and your attempts to maneuver your loved one through that system. It becomes entangled with gatekeepers and care access requirements and is predicated upon the concept of failure at treatment levels which trigger access to greater care upon failure at a less involved level of care.

That you have the responsibility of providing care for your loved one is not what causes the grief and agony. It is far more stressful to be told that your loved one is not sick enough to enter the hospital and that there is nothing the provider of care can do for her. The suggestion to bring her back next month to another appointment and see if her condition has worsened, i.e. she is now homeless so we might be able to take action is what enrages you as a caregiver.

While all of this goes on, your experience as a caregiver is called horrible, terrifying, frustrating and burdensome. I have yet to hear it described without some measure of negative expression or how bad it is to experience. While it is true that you can become frustrated, irritated and annoyed, it is the outward manifestation of the disease and your interaction with the rigidity of the care system that most wears on your psyche. Anyone who perseveres in providing for their loved one knows that deep inside them is still the essence of someone who shares the same desire to enjoy life and find happiness in the world. The fact that your loved one is still alive and functioning keeps hope alive that you will have some positive interaction at some future time unlike other people who have lost their loved ones forever.

Perhaps we should look to how President Obama and Ronald Regan viewed the collective psyche and express appreciation of the efforts of the caregivers and the success they have achieved in helping their family members. When a person tells you that they want to help you find support because you have experienced a terrible and difficult process that has brought you down and drained your spirit, perhaps it is true. However, describing it as a negative experience fails to acknowledge what the caregiver has accomplished. To keep your loved one relatively safe and secure, to engage them with a treatment process, however flawed, and to give them a chance at recovery where others are lost and whereabouts unknown is an accomplishment that we take considerable pride in, not view with horror and tragedy. The disease is a tragedy, not our experience. The care giver's strength comes from a sense of accomplishment of fighting the good fight however bleak the outcome at the moment. Properly viewed, it is soured by the resistance of the care system to provide well organized and responsive care, not by the progress of their loved one.

The need for support systems for caregivers is not to relieve their burden, it is to make the caregiver even more effective and assist in their efforts. Expressions of support are best viewed as how can we provide greater assistance in helping you help your loved one. Like Jimmy Carter, we are well versed in the reality of what we face. Use a little bit of Ronald Regan and Barack Obama inspiration that focuses more on future potential than on present difficulties. That will lighten the load of caregiving considerably.

Thursday, February 5, 2009

The Bigger Picture

Last evening I attended a meeting that focused on the Crisis Intervention Training program that is intended as a supplemental training for police officers of Portland, Oregon. The roots of this program go back to the mid 1990's but it was the tragic death of Jim Chasse who was in custody of police officers that was the reason that the city of Portland moved to make the training mandatory for police officers.

Crisis Intervention, as a program of training, started in Memphis Tennessee as the response to another tragic situation and was conceived as a voluntary, not mandatory set of skills. The idea was that not all people are of a psychological makeup to integrate and use the skills taught in the program. While the voluntary idea may have some merit, the larger view of society, behavioral problems and the role of police forces could use some examination to help put the training in a proper context.

It is useful to study what societal decisions we have made that get us to the point where we now struggle with mental health problems and understand why those decisions brought us to our present state of affairs. In this case we are at the confluence of mental illness, care for those mental diseases and the maintenance of order in our society.

In the mid-1950's common societal practice was to place those suffering from severe mental disease away from everyday society in mental institutions commonly called asylums. More than half a million people in our country were removed from everyday life and subject to often terrifying conditions of asylums. While originally conceived as separate and compassionate respite homes designed to reduce stressful demands, they had more often deteriorated into overcrowded, decrepit warehouses stuffed with a variety of residents that were a jumble of persons with mismatched and differing behavioral problems.

Because these institutions were very expensive to operate and staff it was a great financial drain on governments to provide proper funding for the residents of the facilities. Because the conditions were poor and because some advances in medications showed promise in treating the diseases and because governments were very interested in saving money, public policy shifted and started a massive closure of the facilities and removal of people with mental disease from institutions and back into the communities. All of this was done in a very rapid manner with only the general promise of the creation of the Community Mental Health system.

Like most promises of Government, the promise was only good until requested to be funded. In true American style, we demand services and refuse to pay for them. In this case, there was a need for about fifteen hundred community mental health facilities and only about seven hundred and fifty were funded. On the expense savings side, however, government was extraordinarily effective and reduced the number of residents in the asylums by 90 percent in a few short years.

What, you might ask, is the result of this massive policy shift? We created a massive homeless class that wanders our streets, ill but untreated, begging for resources that are too few in number. Meanwhile the Federal Government, in order to keep states from just recreating large residential treatment centers, passed a restriction of funding any treatment facility with more that 16 residents. This effectively keeps anyone from gathering large numbers of mentally ill persons in large scale treatment institutions. It did not, however, keep them from being collected elsewhere.

Like all well-intended programs and laws, these actions did not, as hoped, have anything like the desired effect. While a small number of persons were returned to their communities and were successfully reintegrated, those with severe symptoms and very difficult behavioral problems "fell through the cracks" as the expression goes and everyone ends up somewhere. Some simply died. Recent statics on the lifespan of those with severe mental illness suggests that their lifespan is nearly 25 years shorter than their fellow citizens. Some also were helped by newer medications and supportive families. After all, having a social safety net is really great for everyone if those who gave birth to those with illness are put into the position of providing as much of the burden of care as possible.

Many of the rest simply over time were transferred to the care and custody of a different governmental organization. Where might you ask did they go? Look no further that our jails and prisons. The massive increase in prison populations in America coincides with the emptying of asylums.

Few things are more popular with voters that "getting tough on crime." Americans love to put people behind bars and keep the "bad" people away from them. We spend massive amounts on alarms and security, locks and deadbolts, guns to protect ourselves and any other manner of self-protection. We love making mandatory sentences, television shows about "bad guys" and thinking up new laws about how to punish people. We look for our police forces to protect us and control the streets and any incident that brings us harm has us begging for more protection and locking up more people.

The problem with all of this is we simply transferred the populations that once inhabited asylums in terrible conditions into jail cells and asked our police forces to be the front lines in the management of mental health disorders.

Our police forces are now stuck with a responsibility that was never intended, treating medical conditions with guns and weapons. We are asking officers to do the impossible, control mental disorders with techniques that were designed to control people who's intent was to rob or steal for personal gain. This is the heart of the problem. Those who are in mental crisis are not acting out of the same reasons of behavior as those intending to simply steal from or harm another. As a society, we have mixed into the mess on the streets behaviors that are caused by physical and chemical abnormalities of the brain and asked the police to adapt to the situation without proper training. Asking the police to separate mental illness and criminality and make split second judgements regarding their own safety is like looking for a gasoline can in a dark garage with a lighted match. We are creating an explosive situation. We are also, if you look at the situations that pepper our news stories, doing very poorly.

The answer lies not in more police training, although that is also part of the solution, but in creation of a workable mental health treatment system. Perhaps we will as a society someday find a better more humane and intelligent care system. Until then, far too many will find the police departments as their first line of treatment and far too many will have given their lives while we clumsily search for better answers.

Crisis intervention Training is commendable. It is life-changing. It life-saving. It is not, however, a solution. The real solution is the study and treatment of mental disease and finding a way to treat and care for those who suffer its ravages. Until we find cures and effective treatments, we are asking police to do what we have not done as a society. We are asking for the impossible.