There Is No Such Thing As A Dumb Question
There is nothing more emotionally difficult when caring for someone than to discover a problem long after it started. I found it hard to stay abreast of the many programs, treatments, medical issues and just plain life that impacted my sister differently than it did for me and often did not catch things very quickly. I tried to comfort myself by saying that I did not know about such things? I had my own life and recognizing its demands, I was not able to stay abreast of Toni’s conditions or problems all the time until they became so big that they would be staring me in the face. I tried to cope with the strain of guilt when I would see her neglected or suffer. I was just a young man. I didn’t have any experience. I was only her brother but I felt guilty just the same.
This is where to the work begins. This is where the temptation to ignore her or just walk away begins. The transition from seeing the problem, to understanding it and then figuring it what to do with it takes time and effort. A commitment is never convenient.
My role as her brother initially was not more than providing her with entertainment and fun but once across the threshold into the upside down workings of a large state run hospital designed for intellectually challenged, I quickly discovered it wasn’t as much fun anymore.
There comes a time when much of your faith is shattered, assumptions are ejected and you take little for granted with the advice regardless of the source. I would not take advice at face value for myself then why would I not be more diligent about my sister?
If a mistake was made it was my sister that paid for it. Human beings live complicated lives and for someone that is disabled it is a multiple above that. Problems can come from many directions. It is hard to rehearse how you would deal with each one. Your role is developed through instinct, compassion and work.
When we first started out on our journey a together you would find us at the movies, food and with friends that entertained her and made it comfortable for me. We looked like the smiling faces you see in the heart warming ads on TV but it wasn’t until I found myself chasing her around the system, that I finally found it necessary to get more involved and sued the state to move her under my authority.
I learned to become vigilant but I remained naïve and inexperienced. Like my mom, I wanted to believe the lovely brochure with the picture of the hospital with expansive green grounds which listed on the inside the care that she would receive. The pictures of the medical staff and hospital administrators were comforting and gave reassurance that Toni would be happier with her own kind while under watch of the wonderful staff that would ensure her health and comfort. Why wouldn’t I feel that it would be more desirable to just put her someplace and let the professionals take care of her needs? But that was not my experience.
In an institution so vast and complex like healthcare the great weight of it is supported by a bureaucracy that sends me down miles of corridors searching for the right person to help me regarding a problem with Toni. Often times that right person does not have the authority to make a decision and so my request would find its way to the mail room and out into the circulatory system of the institution searching for action.
When the Lanterman Act became law in California the institutions did not disappear; they just became more dispersed. Now you drive from place to place and are without a main phone number to direct your call. Board and Care was an improvement over wards and having access to independent health care facilities was more preferable and effective but the problems of being lost in such a system often allowed unnoticed problems to grow into big ones.
The difficulty was I had to rely on the professionals as I was not a doctor, nor a trained professional. I did not make my living caring for the disabled. Initially, I would sit and listen to the recommendations regarding my sister’s treatment and agree as if I understood what was being proposed. It doesn’t take long to realize you are always at a disadvantage in understanding the recommendations.
Rather than try to be an expert, I asked myself what “would I do” if a recommendation was made to me that I didn’t understand. I would ask a question. Then ask another and another until I was sure this advice was the right one. I may go and seek a second opinion if necessary.
When you are disabled intellectually you cannot do that. Toni was not capable of having rational discussions with professionals to any degree let alone a conversation that revealed the wisdom of the advice. Like most of the people with her condition she just followed directions. Take this and they do. This all reminds me of Will Rogers comment “that a veterinarian is the best of all doctors. He can’t ask his patients where it hurts. He just has to know.”
The necessary skill is asking questions. It is something that patients like Toni can’t do. Once I received a phone call from a dentist’s office and the nurse wanted my permission to pull a few teeth that needed to be removed.
I asked “what do mean by a few? Do you mean three?”
Her answer was “no all of them!” She went on to explain that Toni had a gum disease that the dentist thought it best to remove them as the disease would eventually spread. I asked to speak with dentist and he passed on my invitation by having the nurse tell that he was busy with patients. When she returned to defend his recommendation, I was ready with more questions.
Has this disease impacted all of her teeth or are you anticipating it will? Is this gum disease treatable? Is it something that can be improved with better flossing? My questions clearly rested on the words “thought it best”. The word “eventually” certainly sounded like a subjective and equivocal opinion. It sounded more like an opinion than science to me and I told her not to do anything except remove the two that are not salvageable and immediately called the residence where she lived. I asked that the behavior program include flossing her teeth twice a day in her quarterly IPP report. I spoke with the case manager just to make sure my instructions were included in Toni’s tasks for each day. The teeth lasted for another 10 years.
My questions became my most effective tool in working within the field of caring for the disabled. I started on the assumption that as a human being she would want and need what I wanted. If she could she would ask her own questions.