THE HAUNT OF YESTERDAY, FILED

FILED and FORGOTTEN The Haunt of Yesterday

Apology: We have had medical problems in the family that caused a delay in this posting.

I wrote previously about the stigma of mental illness that still haunts us even in Halloween celebrations. Some things just won’t go away. Try, however we must, the care of mental patients long past haunts us and try as we will, flashbacks creep into today’s society

In this and future postings we want to take the discussion of being Filed and Forgotten to more specifics. The indication was that the blog would be based on my father’s mental illness, my disability, and patient care of any kind today. We spoke about the first two and now we move to the third guiding thought of our sharing our experiences and ideas on health care. The discussion goes far beyond the public, political, partisan, and self-centered approaches of today’s debate. In fact we will be focusing on one word that has already been highlighted as essential, that is, CARING.

The plan for the next three postings remind us of that important issue of caring in health delivery by traveling again the road of mental illness and disability at a different speed and with new sights. In all honesty, these postings have a mind of their own and just may not always follow my intended scheduling. The third one will bring us back closer home and talk about caring as it relates to those in our sight at work, in the community, at church, and our neighborhood. Even then we will have only touched on the subject that could and does require volumes as we noted from the “hits” that search engines produce. We can add caring to the previous searches on mental health and disability and we come up with 50,700,000 hits just on the word “caring” alone. Looking ahead even farther, postings will deal with caring in education, in women issues, in family life, in rural life, and in community life; all subjects written about in FOR PETE’S SAKE. Actually, the blog probably won't stop there. Time will tell.

So for today, we are going back to my father’s story about caring as patients were treated during the last half of the 20th Century. You may remember that he was confined to a state hospital for twenty-eight years, and nineteen more in two nursing homes. My comments are based on his actual medical record for those years. Few records covering that length of time on one patient exist. What nurses wrote and what doctors said and what either did is there in back and white. However, my remarks now are commentary and are an honest attempt to understand the relationship between my father and those involved in his care. Where I may be wrong, I am sorry, yet the reader would find it hard to disagree with some issues that I want to highlight out of those 47 years. This is a different approach to health care than we are hearing in the media today. I will be insisting that caring relationships makes for healing as in no other way. While this in no way diminishes technology, it does not stand alone in good care of a patient.

A quote from Ralph Barton Perry (1876-1957), a voice from yesterday wrote some haunting words to this uncaring America so wrapped up within ourselves that we care not for our neighbor. “Humanitarianism needs no apology…Unless we feel it toward all men without exception, we shall have lost the chief redeeming force in human history.”

We can substitute the word caring for humanitarianism. In my “Letter to Dad” that precedes Chapter Five, “Woodmere to Woodlawn,” the chapter that contains my critique of his care, I wrote to him posthumously, “We now know more about your relationship to those who attended your needs and treatment. Generally speaking, we know now that you had good care, and that is a relief to know.” Through earlier years I had heard of the horror stories of such institutions and the book was begun wondering if he experienced anything like that of earlier days. After looking at the record for a while I concluded he was not tortured in the sense of centuries before. So the “Letter” was written as an afterthought grateful that he was treated as well as he was. The chapter does critique the medical experiments that were common, however, what needs to be said here focuses on the relationship hints picked up from the telling of his story. That is to ask, was he “cared for, cared about” on a human level and not just housed, fed, and given various treatments?

This writer prefers in this blog to place the spotlight on the relationships for it is out of these illustrations in this chapter that we think of him primarily as Filed and Forgotten, locked up and the key thrown away, so to speak. However, there were incidents of real caring and some not so good as we review now the good and not so good, or bad, relationships between the staff and my Dad. Woodmere, the Evansville State Hospital was located in large woods where in good weather patients could wander around and enjoy the quietness and inspiration of nature. One social worker recorded some of her visits with Dad when he was in the mood to converse, which was not often.

Being a caring professional she would take the opportunity to connect with his world and help him connect to the one around him. The outdoors country guy probably talked about the kind of trees, birds, or even the grass under his feet. I bet it was Kentucky Blue Grass. The social worker could have just stood around like a guard or as another attendant, doing her own observations of nature and been completely disconnected from that man who sat there on the bench, her charge for the afternoon. How often do we see even a stranger, obviously mentally troubled, walk by, and do not say “Hello” or nod and affirm their presence with a smile. Well, not all the social workers were like this one as we will see later.

The question of caring or not caring often was related to institutional needs and regimens. Let’s see, how would you like to take your bath at 3 am so that the shift of nurses could get all their assignments done before going home. What if you had a life long addiction to tobacco, in this case chewing tobacco, and having it not given to you because you were messy and got tobacco juice on the bed, on your clothes, or on the floor. Sure institutionally, someone had extra work allowing him his bad habit. Some caring aids cleaned it up with a joke to get him to smile.

Others harassed him about it. In one case he was given some tests to see if he could tolerate a medication that would make him more submissive, less aggressive when he was deprived of his tobacco. One would wonder if some of those involved, I happened to know one was a chain smoker, gave a second thought to her inconsistency requiring something of a mental patient that she could and would not apply to herself. Caring personnel think of doing unto others as they would have done to them. The best part of caring personnel is revealed later when a nurse discovered that he was messing up the floor, missing the spittoon, because he was going blind from cataracts. How easy to criticize anyone when, we “are not walking in their shoes.” Caring personnel go beyond the immediate situation and look for solutions.

Two different nurses or attendants responded completely opposite to Dad. Their recordings in the nurses’ charts were very revealing. One had nothing consistently to say except negative terms, humanly degrading terms, of his behavior while the other used very positive expressions, both reporting under exactly the same circumstances. In other words he was cooperative with one and rebellious and insubordinate with the other. One was a person who expected you to take her orders and the other was a caring person who worked with him kindly and got the job done. Now where was the problem, the patient or the nurse? One was the sergeant and uncaring, the other was one whose focus was on her patient and not on herself. It would be interesting to listen in on a conversation between the two on any other subject, and note that one consistently used crude language while the other was more refined. Maybe that is a test for who should be hired to do the job in the first place.

One social worker gave a scathing report of “his uncaring family” who did not respond to his needs. She never called about anything. She never wrote a note to my mother who always supplied canteen money and clothes out of her meager income (Later read about my mother’s devotion and determination when we write about women issues) Another individual who did not do the right and caring thing was the one who wrote in the record that she could not stand his smelly old sweater. She wrote other derogatory statements about him. A caring person would have had several options such as the fact that some people have a perspiration problem that often has a physical basis. She also could have sent it to the laundry at night. She could have sent us a message of the problem and a new one would have been provided. Or, oh my, she could have taken it home and washed it! This was one of the personnel who worked for a paycheck, waiting for Friday to come.

We could give many more illustrations of how personnel could have been more caring. There is so much more. A doctor sits down with you and shares about three sentences, “Now let see, who are you here to inquire about. Just minute,” as he looks at some record, and remarks, “Oh, he is doing fine. Is that all, See you next time.” Caring doctors respect your lack of understanding the system, your anxiety about your loved one, and indicates by his or her behavior that he is in charge, he is the expert, and just trust him. His job could have been a patronage job. Another doctor submits to the nurse’s request about the tobacco as mentioned above, and after a negative tests report took weeks before taking him off the medication..

Let’s look at one more thing about the importance of patient and personnel relationships as they relate to patients with mental disorders. By state edict he was transferred from the state institution to an ill-equipped nursing home to care for mental patients, he surprised us all and was a much more cooperative and likeable patient for his next nineteen years. Why? Certainly, we could find many examples of non-caring personnel at the nursing homes. In fact some of the illustrations are above. Why? Same medication, similar routine, both had the countryside and woods he loved. One thing we think made the difference and it was, generally speaking, the attitude of the daily personnel who met his needs. These were not professional mental health workers so trained for the job. They were caring, loving people, who loved their job and who indicated that by the way they treated their patients. He mentally had blocked out the twenty-eight years at Evansville and at birthday time each year hence, he said he was 28 years younger. Do caring people make a difference? There is no other reason, medication, or whatnot, that made the difference. For the record there can be mental health professionals who really care from the heart.

Those days of being Filed and Forgotten, 1948-1995 are haunting days. This writer so describes them with that description for a simple, scary, reason. History continues to repeat itself when it comes to health delivery being operated without little regard to patient and personnel relationship being a viable rewarding focus. While technology has advanced, our ability and practice of treating patients as human beings and not objects still haunts us. Read the next blog and discover what I think the common denominators for good or ill may be.