"ICEBERG"…LESSONS FROM A HOSPICE PATIENT
GEORGE PETRIE - LONGBOAT KEY FLORIDA
He would give me his toothless grin from "ear to ear" whenever I would place my forehead against his and our noses would touch. It was exactly what you would expect from a young child but this was not the case. Vernon was actually 82 years old and he was trapped somewhere in the synapse of his own brain. We call it Dementia or Alzheimer's. Whatever you call it, it is still evil and robs its victims of all of the wonderful memories that made up their lives.
Those of us who study the institutional treatment of it try to design methods to forestall its progress, rehabilitate, comfort and pursue best practices for helping these patients. Scientists desperately search for a cure or a treatment while those of us on the "inside" watch variant behaviors like agitation, withdrawal, anxiety, hostility, verbal and physical violence. We watch as families come and go from their visits. We watch some people who never have any visitors. Whispered words of encouragement, conversations without meaning and lots of people filled with guilt for not being able to do anything and grief for having to watch.
Each case is different. Each person hides a different story, locked up in a part of the brain that cannot be opened.
I didn't know anything about Vern but I knew that he was diagnosed with Alzheimer's. I also knew that the only way to make a definitive diagnosis like this was by autopsy. We make this diagnosis based on behaviors, quasi-scientific testing and day to day observations.
He was actually a very healthy person just a year ago. He loved to fish and, since he was retired, he had plenty of time to pursue his favorite hobby. His wife had passed away several years ago and he had stayed in the family home, providing for himself and living a very ordinary life of retirement.
None of us knows what exactly each day will bring and little did Vernon know that today, on his daily trip to the Post Office, everything would change. His gait and his eyesight weren't the same as they were when he was younger but he still drove and did all of his own errands. He stepped out of the car and, as he did every day, he headed in to check his postal box.
Someone somewhere, a long time ago, decided that it would be a good idea to put cement bumpers on the ground in parking lots. I assume they were designed to tell people when they had pulled far enough in to their designated spot. I remember when I worked in the emergency room we would treat several serious falls each week, wherein a person had tripped over one of these "curbs" and either landed on their head or suffered a broken wrist or two, trying to break their fall. It wasn't just old people either. Sometimes it was a young mother, hurrying to finish her errands or a young man with too much on his mind. Some of the injuries were relatively minor and just required a dressing or a few stitches. Some of the injuries were more serious and required a bone to be re-set and a cast applied. Many of these injuries, unfortunately, involved serious head injuries and required CAT scans to determine the level of damage. Occasionally a patient would sustain such severe injuries, due to head trauma, that their lives would be changed forever.
Such was the case with Vernon. When he tripped and fell his head slammed against the ground and his world collapsed. Suffering a "brain bleed" he underwent an emergency procedure to relieve the pressure and was taken to the Intensive Care Unit to be stabilized. His immediate emergency needs were met but, during this hospitalization it was discovered that he also had cancer and it had metastized. Too late to address that issue.
When Vernon was ready to be released, it was obvious that he would need constant care. He certainly couldn't fish any more. He couldn't even remember what fishing was. He didn't know where he was, who he was and he certainly didn't have any memory of his "past" life. Everything that had once been dear to him had suddenly been erased.
Vernon was shuffled from one facility to another. His behavior had become difficult. He was verbally and physically abusive to the staff and other residents wherever he was placed. Because of the restrictions placed on using medication to control behavior, Vernon suffered the type of abuse that comes from caregivers that are overworked, underpaid and particularly those that were ill suited for caring for patients like him. People who took his behavior personally quickly tired of him and used every opportunity to secretly lash out at him. There was no such thing as revenge to Vernon but many of his caregivers spitefully lashed out at any opportunity to "punish" him for the things that he would say or do. These types of "payback" are subtle and include many manifestations including things such as slapping, pinching, food deprivation and oftentimes just ignoring the patients' basic needs.
Something to think about; if your child was living in your home and had a disability you would want to do everything you could to meet his/her need. If your child's room had a "call light" which they could use to signal you when they had a special need you would certainly want to go to them to see what they needed.
In most senior facilities, call lights are merely there to meet State and Federal guidelines and become perceived as a nuisance more than anything. How many hours have I spent in some facilities listening to call lights go unanswered. How many times have I wondered if it is a staffing issue or an issue of indifference? Some staff have too many patients and the job is extremely demanding. Patients need to be fed, bathed, toileted and the procedure repeats itself over and over each day. Some patients require more attention and some are just demanding due to the nature of their mental status.
Vernon wouldn't sleep for more than a few minutes at a time. It was as though his mind would wake him up as soon as he would doze off. It was as though his mind was saying "Wake up…wake up, something is happening," He would scream out "Help…help!" and he would try to jump up out of his bed as though there was something chasing him. Anyone who came near him must have appeared to be a threat. He would lash out at them, calling them vulgar names and try to strike them. There was absolutely no filter on whatever he might say to someone and, unfortunately, he was often perceived as just a "nasty old man".
"Nasty old man" was not something that anyone who knew Vernon in his "old" life would have ascribed to him. He served in two wars, retired from the military with numerous awards for bravery and selflessness and spent his later years establishing a food bank in his community for those less fortunate.
One slip, one fall and the man had suddenly become the antithesis of the person he truly was but for many people their perception of him was rooted solely in the damaged person he had become.
I got involved in his care when one of the staff members had been caught trying to stuff a face cloth in his mouth to "shut him up". This was a person who was entrusted with his care. This was a person who was representative of a minority in this type of healthcare but, unfortunately, it happens much more than is reported.
Students ,who can manage to sit through one of my lectures about geriatric care, will always hear me say "Pretend there is a camera in the room. Pretend that everything you do is being observed. Most especially, pretend that the person you are caring for is your parent or sibling. Then, stop and think about the possibility that someday you might be the person who needs to be cared for! If you can't do this then get into a different type of work. You are a danger to yourself and you are a danger to those whose care has been entrusted to you!
I didn't know much about Vernon. I knew that he had a head injury and he had been diagnosed with frontal lobe dementia which was a result of his head injury and his advanced age. For the most part he was non-communicative (except when he was screaming out). He was unable to carry on a conversation; he couldn't remember words, names of things and certainly couldn't tell you what he needed or wanted.
I could easily tell that it was frustrating to him. A part of his brain seemed to realize that he wanted to say something or ask for something but he had given up trying to search for the words.
Imaging being hungry, thirsty or having to go to the bathroom and not being able to tell anyone. What Vernon needed, as do most of the other patients like him, was someone who could see into his mind. Since that was impossible, the only alternative was to take the time to study him, study his behaviors and try to determine why he would become agitated. Why was he "acting out". Did he have a specific need? Was he in pain? What caused this gentle man to act the way he did?
Of course he was angry! People would speak about him instead of to him. Most of his caregivers had good intentions but, when his behavior would deteriorate they would ask him "Do you need to go to the bathroom? Are you hungry?" Sometimes they would walk him to the dining room for a snack when he really needed to use the bathroom.
After I spent a lot of time with Vernon I noticed that he would break into his enormous toothless grin whenever I would walk into the room. He would suddenly seem relaxed and calm. Every time I saw him I would say "Hello Pardner". After about two weeks he would smile and respond "Hello Pardner" Everyone was surprised when they would witness this and ask me what my "secret" was. There is no "secret". Vernon knew that he could trust me. Vernon knew that I could translate his non-verbal cues. I had learned to recognize that, when he would tug on the front of his pants, it was his desperate signal that he needed to use the bathroom.
Vernon never made what anyone could call progress, nor was he expected to. These types of diseases don't have a prognosis that includes reversing or slowing the progress.
He knew that I would try to translate his unspoken needs and eventually he had fewer and fewer episodes of bed wetting and agitated behavior. I also learned that, if I put him in a wheelchair and letting him use his feet to propel himself, gave him a safe and comfortable way to explore outside the room that he was "trapped" in for most of his days. If he needed to go to the bathroom he would "wheel" himself over to the bathroom door and wait for me to assist him. If he was hungry he would "wheel" himself down the hall and go into the dining room where he knew I would hunt down a snack for him. One day I was just sitting with him when he suddenly looked up and said "You are my best friend". I looked back at him and I said "Vernon, you are like an iceberg. We only see very little of you and we don't even know how much of you there is beneath the surface".
Just a simple little interpretation of his needs gave him back some of his dignity. I wasn't sure if he was aware in this new empowerment but I did know that, when I would get off the elevator, he would be sitting there, smiling and obviously waiting for me to arrive.
Sadly, I never knew much about his previous life. As I said, I knew that he loved to fish. He never had any visitors. I don't know if he had any family and it was obvious that his friends had abandoned him here. This happens all the time. Oftentimes families don't want to see their loved ones in this condition and friends have their own lives to live and don't want to be around this depressing environment. Someone on the full time staff told me that he used to be a pilot "during the war". Someone else told me that he "used to have a few visitors from time to time" but that had ended as his condition deteriorated and he became more verbally abusive.
Vernon passed away one day, shortly before I arrived at his facility. I knew something was wrong when he wasn't waiting by the elevator. I made my way to his room and they were preparing to transport his body to a funeral home. I bent over him and said "So long pardner". Of course he couldn't give me his toothless grin but I knew that, wherever he was, he was no longer just a lonely old man waiting to die. I don't know what comes after death but I do know that Vernon will never be ignored again. I know that he will never go hungry or have soiled undergarments again. I know that he will never be subject to the demeaning behavior that so often was meted out to him. Unfortunately I also know that there are a lot more elderly people out there, in various facilities, who will have to spend their final days enduring callous treatment from the few individuals who populate the healthcare industry and have forgotten the word "care".
So long Pardner!