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.

1 comment:

ACDesign said...

I feel the same as you do. I have the same questions about the mental health system. It is lack of funding? Lack of understanding or both? When you wrote, "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." I completely agree but people keep telling me that this system is all we have. I understand that but if this illness causes lack of insight, then why aren't there more programs in place that would allow our loved ones to work towards recovery? We are having a tough time getting my bro a long term hospital stay. When my bro was 100% psychotic, the hospital turned him away because he popped a pill in his mouth. My parents pleaded with the hospital to take him in but they refused. This is an area I want to campaign for change. Anyway, thanks for the post!