Category: Illness

Inventing a New Way

Published on by Sharron BurnettLeave a comment
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When I was growing up I knew a number of elderly people who lived with their children who cared for them until the day they died. It wasn’t all that unusual to see households composed of extended family members. My own maternal grandmother lived with her two bachelor sons and the rest of her children often took turns sitting with her whenever she became too sick to leave her bed. She died peacefully in her home with her loved ones hovering over her.

My husband often speaks of his grandmother and mother caring for his great grandmother who had been struck down by a stroke. It was an exceedingly difficult task because the woman was unable to move on her own and she had become chronically irritable because of her afflictions. He often heard her screaming at the ladies who attempted to tend to her every need. They understood that she was the victim of her circumstances, but that knowledge didn’t make their task any easier.

By the time I became an adult the idea of having several generations living under one roof seemingly went out of style. I only knew of a couple of people who opened their homes to elderly relatives. One was a very compassionate neighbor who lovingly cared for her invalid mother-in-law. It was hard work because the woman could never be left alone. One time I went to help out by sitting with the sickly lady, and I was physically and mentally worn out by the end of the session. 

I had one other friend whose mother lived with her, but the older woman in this case was healthy and energetic and helped greatly with duties around the house. I used to love visiting their home because the two women laughed and joked with one another constantly and always offered me fresh cookies that they had baked together. They made their somewhat unique situation seem almost idyllic.

Eventually my own mother spent a little more than two years living either with me or my brother. She was in relatively good health, but her mental difficulties required more and more monitoring as she aged. She and I both struggled with the enforcement of her daily medication intake. She felt that I was overstepping my bounds, and I felt beset upon by the battles that ensued each day. If it had not been for the clash of wills, I would have viewed her time in my home with great joy. I liked having her at our dinner table each evening and talking with her about my work day. She possessed a kind of folk wisdom that helped me, and I valued her opinion. She appeared to be doing very well while in my care, so it was shocking to learn that she had lung cancer. In fact, I was reluctant to believe that she was as sick as she was. I’m still happy that I was able to provide a safe and loving place for her until the very last few days of her life when she had to go to the hospital. 

The number of elderly individuals no longer able to take care of themselves without some supervision will continue to grow as the “Baby Boomers” enter their seventies and eighties. The question becomes how our society will be able to adequately care for those who require assistance in their daily routines. There are already a number of companies that are creating technologies that may support the younger generation in dealing with the coming surge.

Of course there are some people whose illnesses require twenty four hour care. Nursing homes will no doubt become crowded, but what I know from friends is that they are not the only answer. I know many people who realized that their parents needed to be in a more professional facility than their homes, and then found that they had to monitor the care they were receiving on a daily basis to insure that it was being carried out properly. It was an exhausting experience that required energy, patience and joint efforts by siblings.

The idea behind many of the new devices being invented and used is to provide caretakers with systems to monitor all of the necessary activities of older adults. There is technology that will detect heart problems, recognize when someone falls, note when a person has not moved for an inordinate amount of time. check blood sugar, send alarms when daily medications have not been taken, and alert caretakers and first responders in the event of an accident or health emergency. The Echo Dot is capable of turning lights on and off, playing music, setting clocks and even running microwaves and ovens. The Roomba will vacuum a house on a schedule and then return to recharge after doing the work. There are devices that help people to get out of their beds and into wheelchairs without human assistance. Cameras can run a feed to caretakers even when they are offsite.  Doors can be locked and unlocked without from afar. The cell phone has already changed the ways in which we communicate. Before long there will be self driving cars that will allow the elderly to just key in a destination and then sit back until arrival. Uber and other such forms of transportation are already taking people places with little or no trouble. Because all of these inventions will no doubt be profitable, I expect inventors to come up with even more new and better ideas at a rapid pace. 

Best Buy is banking on this kind of revolution happening to the extent that they are going whole hog into to the business of providing their older customers will all sorts of ways of taking care of themselves and keeping their children less anxious about what may be happening to them. While such a focus from major retailers won’t solve every problem, it will go a long way to encourage those with great ideas to monetize them and make them available to the public. It’s going to be exciting to watch our society change in the ways that we deal with our aging population.

Of course there is no substitute for the loving concern of family members. Even in the present it’s a bad idea to put an older individual in a facility and then just walk away. There has to be a routine of visiting and checking to be certain that all is going well. What we do know is that most people wish to stay at home as long as they can, but sometimes that just won’t work for a multitude of reasons. When we manage to find the right environment for them so much worry is lifted from everyone’s shoulders. The coming world may make our choices more plentiful and easier than they have ever been. I will enjoy watching the progress unfold.

We’re All In This Together

Published on by Sharron BurnettLeave a comment
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The news cycle moves rapidly these days. A big story on Monday is often moved aside by one even more exciting on Thursday. So much information overloads our brains that we sometimes choose to just ignore the march of sensational topics. Once a subject leaves the front pages it is all too often quickly forgotten, and so the floods and damage of a hurricane become old news even as the people who have been affected still struggle with the after effects. Like a small child in a room full of toys our interest flits from one thing to another, but in the real world there are issues that don’t really go away as much as become old news.

It wasn’t all that long ago that the world was mesmerized by the ebola outbreak that took place in African countries like Liberia and Sierra Leone. As the disease claimed thousands of victims, a kind of fear gripped everyone. We literally wondered either silently or aloud if this would be the kind of pandemic that killed millions at the beginning of the twentieth century. Just as back then researchers were hard pressed to explain exactly what caused the sudden spread of the disease, and medical personnel were treating the illness on the fly, learning from mistakes and hoping for the best. In many ways the epidemic ended as mysteriously as it had started. It seemed to have simply burned itself out, but many who study such things found themselves wondering if this was just a lucky break. Research into the causes and control of such diseases continue in laboratories across the world, but public interest has waned since that time. It’s old news that turned out well for most of the world save those African countries most afflicted. As curious as I have always been about such things, even I generally put the whole event out of my mind, at least until I viewed a film made in Sierra Leone during and after the tragedy that took so many in that country.

A group of locals from Sierra Leone had the foresight to record the human toll from ebola by showing relief efforts as they unfolded and interviewing family members and friends of those who had contracted the disease. The rawness and reality of the story was heartbreaking, frightening and inspiring. The film revealed just how courageous so many of the people were during that terrible time. There were local nurses and doctors who had never before dealt with anything so terrifying who nonetheless put their lives on the line day in and day out. There were families that were quarantined and separated from loved ones who became pariahs by association. There was great fear within cities and towns each time a new victim began to show signs of contracting the disease.

I found myself cheering for the people who rose to the occasion by assuming leadership roles in the face of grave danger. Among them were priests, imams, and ministers who shepherded their congregations and urged them not to fall for stories of demons causing the illnesses. Instead they helped health workers to spread the word of how to use proper hygiene and when to isolate those who became ill. Any of these brave souls might have contracted ebola themselves but they found the wherewithal to do the jobs that they knew must be done.

Perhaps the saddest feature of the film focused on a group of homeless boys who lived on the streets scrounging for food and lodging. It showed them regularly visiting a landfill in search of items to trade for money. They walked on mountains of refuse in their bare feet in order to survive from day to day, all while the terrible disease raged  around them. They were survivors, not just from ebola, but from the very act of living.

In the film there were interviews with individuals who had lost entire families. The human spirit was still alive and well in them, but I have little doubt that they bear huge scars that will never quite heal. When we read the statistics of the thousands of people who died they are just numbers to us coming from a far away place. For the people who lived through this nightmare they are a reality as tragic and heartbreaking as any disaster that suddenly washes over our humanity.

We have erected memorials to those who died in the attack on Pearl Harbor and the innocents who were killed on 9/11. We are disturbed by the sinking of the Titanic and cry at the thought of those who lost their lives without warning. We are appalled by the needless deaths of anyone, and yet the impact of the ebola epidemic has come and gone, leaving both its victims and survivors to deal with its effects mostly alone. The film that I watched challenges us to remember the humanity and importance of each of the people who endured this incredibly frightening time.

I realize that we can’t always be worried about “might have beens” or future possibilities, but history has shown time and again that horrific things often happen when we least expect them. During those epic moments there are always everyday people who become heroes and then quietly return to their lives when the danger is over. There are souls who suffer so badly that they never quite get over the raw emotions of the event. Then there are those who lose their lives, all too quickly and sometimes even painfully. We must never forget them, regardless of how far removed from us they may appear to be. We are all in this struggle called life, and it would behoove us to understand that what affects one of us may one day affect all of us.

God Willing And The Creek Don’t Rise

Published on by Sharron BurnettLeave a comment
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Ladybird Johnson was a Texan through and through. Growing up in east Texas she adopted mannerisms and a style of speaking that is unique to our state. One of her best quotes always reminds me of my own mother, “God willing and the creek don’t rise.” My mama rarely gave a definitive RSVP to an invitation. Her assents were invariably prefaced with a “God willing” admonition. She often cautioned us to consider that events beyond our control might suddenly change even the best of plans. The sudden and very unexpected death of my father only served to demonstrate the wisdom of her thinking. I often find my self tentatively setting dates on my calendar that I hope will come to pass, knowing that the good Lord may have other ideas in mind. On this July 3, I am reminded all too well of the whimsy and challenges of life.

A year ago I was enjoying one of many events that would entertain me in the summer of 2017. I had already travelled to Cancun for a beautiful wedding and was luxuriating in the promise of more joy to come. My husband and I were spending the Fourth of July holiday with all of our children and grandchildren in San Antonio. Later in the month we were scheduled to camp with friends in east Texas near where Ladybird grew up. In August we planned to drive to a mountain cabin in Colorado to meet up with one of my brothers and his family to relax and hike, and then go to Wyoming to watch the total eclipse in one of the best vantage points in the country.

God willing it was going to be a fun filled summer, but things began to unravel without warning. On July 3, after enjoying breakfast and lunch with our family we were in the process of deciding what to do for the remainder of the day when we heard banging and a faint voice from the guest bathroom. Our inspection of the source of the noises lead us to the discovery of my husband Mike lying on the floor unable to rise on his own. It was immediately apparent from the crooked line of his mouth and the slurring of his words that he was having a stroke. From there life changed in ways for which I had no plans.

Of course we cancelled the camping with friends, the travel to the mountain cabin and the journey to view the eclipse. Our attention was focused entirely on making Mike healthy again. After his release from the hospital we returned home to Houston to begin a year long regimen of visits to doctors, healthier diets, exercise and enjoying life quietly from day to day. We had been warned that there is a statistical danger of another stroke that is most likely to occur within the first three to six months after the initial one. Needless to say I hovered over Mike like a hawk, noting his every breath, listening for signs of trouble. We were instructed not to go to isolated areas or places without cell phone reception and good hospitals, so we mostly stayed at home.

We watched the eclipse here in Houston along with others who had crowded into the Museum of Natural History in Hermann Park. The was not as dramatic as it might have been because it was not directly over our city, but we felt grateful that Mike was still here to enjoy whatever slice of life he was afforded. Only days after we heard on the news that the proverbial creek might rise here in Houston from the predicted rains of hurricane Harvey. We did not leave to find a safer place because we wanted to be near the Houston Medical Center if anything happened to Mike, and besides we could never have imagined how bad the historic weather event might actually be. We hunkered down as instructed by a county commissioner and waited for the storm to pass, only it took its precious time in doing so. In the process of constant rain for three day our little neighborhood became an island in a sea of flooding that was overtaking Houston and surrounding areas like Noah’s epic torrent. How could I have ever known just how much our creeks were going to rise? Who had ever even heard of 51 inches of rain in a single event?

It’s been a year since our trials began on July 3. Mike has not had another stroke, and God willing he never will. Houston has mostly healed but we still shudder when storms come our way. I suspect that we have an entire population suffering from a form of PTSD. I still worry from time to time and have not yet been able to plan the kind of adventures that I have always loved. I find myself tempering my enthusiasm for coming events with the realization that they may or may not come to pass. Our biggest journey in the last twelve months was a five hour trip to east Texas to visit with a former neighbor who is now in her eighties. Being with her was a healing experience for us because we have learned all too well the importance of embracing those that we love as often and as tightly as we can.

Some great friends were not as lucky as we were last year. I attended far too many funerals and still think about the wonderful people that I will no longer see. My home was spared from the damages of the floods, but people that I know had to deal with the horrors of  water rushing inside their houses. It took months for their lives to return to normal. In an ironic turn of events I experienced a small slice of their trauma when my own domicile was damaged from a rush of water coming from the hot water heater. Eight weeks of frustration later we returned to normal, but not without a taste of just how terrible the suffering of the flood victims had actually been.

We’re wiser and far more grateful for even the tiniest joys than I was a year ago. We’ll spend July 4, in San Antonio hoping for a better outcome than last year.  We’re also looking forward to finally completing the plans to camp with good friends in October, and it looks as though we may get another chance to view a total eclipse of the sun when it comes right over Texas a few years from now. There is much for which to be happy and new adventures ahead, “God willing and the creek don’t rise.”

A Frontier To Explore

Published on by Sharron BurnettLeave a comment
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The newest studies show that suicide is on the rise in every corner of America. This month alone has been punctuated by the self inflicted deaths of Kate Spade and Anthony Bourdain, two celebrities who appeared to have it all. Those tasked with helping us to maintain mental health are almost at a loss for words regarding what causes such incidents and how we may prevent them in the future. It is a problem that has plagued mankind for centuries and we still find ourselves scratching our heads in confusion and horror whenever we learn of someone ending their life in such a hopeless fashion. It is in our nature’s to want to help, but so often the incidents come as a surprise even to those closest to the victims.

I suppose that I have always been thankful that my mother’s bipolar disorder never lead to suicide because I know for certain that there were times when her depression was so deep that she was paralyzed inside a deep dark mood. She would close herself off from the world and sit in her house sleeping and crying and feeling frightened and hopeless. There was little that we were able to do to brighten her outlook other than getting her to professional help as quickly as possible. Sometimes that was made more difficult by the fact that her energy level was so low that she was unable to dress or care for herself and didn’t think that it was even possible to make the journey to the doctor’s office. We learned after multiple such episodes that it was critical to push her, because once she received the appropriate treatments and stayed under our watchful eyes she would soon enough return to a better state of mind.

Mama’s psychiatrists always worried about suicide even to the point of suggesting that we take away obvious means of harming herself whenever she was in such a state. They also insisted that we not leave her alone. During those times she would stay at one of our homes and we would take vacations from work to watch over her. We were told by more than one doctor that Mama’s unrelenting faith in God was no doubt a factor in preventing her from ever once making an attempt on her own life. In that regard we were fortunate.

Not every tortured soul who considers suicide is so apparently depressed as my mother was. Sometimes they even appear to be happy, successful and in love with life. There may be very close friends or family members who are more acquainted with their moods, but most of us see them as quirky or a bit erratic emotionally at most. Often they are so stoic and gifted at hiding their true feelings that we have little sense that they are in trouble. Those are the complex cases that most baffle us. We scratch our heads when we hear of their deaths wondering what clues we may have missed.

The brain and its chemistry is so intricate. We have yet to uncover its mysteries or ways to successfully control its problems. If only we knew more we might one day be able to eradicate much of the hurt and pain that mental illnesses inflict not just on the individuals who have them, but on their families as well. Even when every conceivable effort is made to deal rationally and medically with diseases of the mind, there are so many ways that things may go wrong. Attempting to address such issues with routine methods may or may not work. Since most incidents of depression, mania and such are chronic rather than acute it becomes a lifelong battle, and just when one method seems to be working something changes in the physiology that requires new approaches. In many ways our work with such diseases is still in the very experimental stage. There is so much that we still do not know, and while we ponder such questions the suicide rate is rising.

When famous people kill themselves it sheds a light on a problem that is rampant in our society, but all too often hidden from view. We brag about our children’s accomplishments, but we don’t like to mention when they suffer from depression. We hope so much that we can just treat their symptoms and move on to normalcy that we sometimes overlook signs that all is not as well as we may think. I know that in my mother’s case we foolishly hoped and prayed over and over again that we had once and for all conquered her illness. We were shocked and disappointed so many times when her symptoms reappeared, even though all logic should have taught us that our vigilance and her treatments would have to be a lifetime commitment.

I have a daughter who also suffers from depression. She learned much from watching her grandmother. She also knows the pitfalls of treatment for her own disease. The medications and therapies that she receives lift her mood so well that she becomes convinced that she is cured. She wants to abandon the drugs that cause her to gain weight and to endure other uncomfortable side effects. She doesn’t like the idea of being part of a chemistry experiment. So even with her own medical training and the history of our family she does what so many persons with a mental illness do. She stops her treatments in the hopes that she doesn’t really need them anymore. When her symptoms return she realizes the mistake she has made and returns to a lifestyle that she is certain few would understand. Luckily she has a family who supports her and understands the dangers associated with her depression.

As a society we desperately need to come to grips with all forms of mental illness. They are real and not just the product of someone’s imagination. They are frightening to those who have them and those who love someone who has them. As a whole the mentally ill are treated badly. We tend to run away from them rather than support them. We make them feel isolated and misunderstood. When we speak of their difficulties there is a tendency by those unfamiliar with such illnesses to suggest that they are somehow just indulging in selfish behaviors. We often push them to “get a grip.” They hide their pain in the shadows and now and again they simply do not have the energy to continue to deal with the confusion that they feel.

I’m of the mind that mental illness is perhaps the biggest problem in our society today. I would love to see us place as much enthusiasm and dedication to conquering diseases fo the mind as we did for reaching the moon. It would be go grand to gather the greatest minds in a generously funded program whose sole purpose is to conquer mental illness. I believe that if we unlock the means of treating such illnesses many of our woes will evaporate. We must make heroes of those who work to repair the mind. Until we do we will continue to see mass shootings, criminal behaviors, addictions, and suicides. It should be clear that mental illness is the frontier that we most need to explore and understand.

Lois Lane Is Dead

Published on by Sharron BurnettLeave a comment

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Lois Lane is dead. Well, not really, but Margo Kidder, an actress who played her, died in her sleep last week. Margo was a talented and quite interesting woman who suffered from bipolar disorder. During the nineties she had a manic episode and ended up wandering through backyards in a confused state. That landed her in the headlines and a psychiatric hospital. Somehow people mostly forgot about all of the work in film that she had done and concentrated instead on thinking of her as a “crazy” person. The truth is that once she was treated for her illness she went on to perform on stage, and in films and television, even being nominated for an Emmy for some of her work. Mental illness quite simply is rarely viewed in the same way as other diseases, and those who are afflicted with disorders often find their lives filled with loneliness as acquaintances that they once knew shy away from them.

Mental illness comes and goes in the news, but not much of substance is ever done. We speak of shortages of care and problems with laws that make it difficult for families to get the proper services for family members, but mostly it comes down to talk and more talk, but little constructive action. There are not enough doctors, not enough care facilities and not enough dollars for treatments to sufficiently deal with what is becoming a growing problem across the nation.

A few years back President Barack Obama set aside fifty million dollars to be shared by each of the states. That may have sounded like a step in the right direction, but if you do the math you realize that each area only received one million dollars, a drop in the bucket given the dire needs. In some places a million dollars is the cost of a house, and can hardly be considered a means of dealing with the many forms of mental illness that plague our society. Still, I was grateful that the president actually acknowledged the problem with some financing, even if it barely scratched the surface.

A recent study indicated that many individuals with mental illnesses go to emergency rooms to find care. While this may sound inefficient, it is understandable. I was constantly searching for psychiatrists who were willing to provide therapy for my mother who had bipolar disorder. The hunt was maddening. Some took only cash. Others accepted only certain insurance plans. Still others only wanted to work with children, or teenagers, or those in their twenties or thirties. Even when I managed to find someone willing to take her case, I often had to wait for weeks to get an appointment. If I felt that my mother was in a crisis situation the doctors almost always suggested that I take her to an emergency room.

On one occasion my brothers and I waited at a hospital with her for over six hours without receiving any kind of attention. It has been reported that many mentally ill patients will literally stay in an emergency room waiting area for days hoping to be seen, and even then there is often no room in the psychiatric ward for them. It can be frustrating beyond description because someone who is experiencing a manic episode is not patient, and in the case of my mother is most often psychotic and paranoid as well.

Imagine our anxiety when midnight came and we were still sitting with little hope of having our mother seen by a professional. Our optimism was dashed when the county sheriff showed up with a van load of prisoners all of whom had to be assessed for mental competence. Even though we had been there for six hours, by law the men in chains had to come first, and it would be many more hours before the medical professionals would get to our mother. In the meantime, she saw the handcuffs and the law men and began to imagine that someone was going to jail her as well. She became so frightened that she demanded that we leave. Of course we ended up taking her home with no medication and no help whatsoever.

When my brothers tried again to take Mama to her regular doctor the next day, they were told to return to the emergency room. They spent another sixteen hours before she was finally assessed and sent to a dreary facility in Bellaire that seemed more like a prison that a place designed to be therapeutic. It was enough to make us scream or cry.

The point is that my mother had good health insurance and still we were not able to find competent physicians to help her. I once spent five eight hour days calling all over town to secure an appointment with a psychiatrist. When I finally reached someone who was willing to help I was ecstatic. He was an incredible doctor who helped her to become well and in better shape than she had been in years. To our utter dismay the clinic where he worked decided that he was too expensive for their budget and he had to leave to work at a psychiatric hospital that would not allow him to do outpatient care. We were back to square one and my mother’s mental health deteriorated while we began the search again.

In our country we worry about so many things that are unimportant by comparison to caring for those afflicted with mental illness. We have little empathy for them or for their families. We turn our heads embarrassed by their actions when they are desperately ill. We think that somehow it is their fault that they are so often in Catch 22 situations. Only if we have to attempt to navigate through the maze of barriers do we begin to understand just how desperate the circumstances actually are. If we combine the difficulty of finding care with the stigma attached to mental illnesses the problems are compounded and complex.

I often see the eyes of my audience glaze over as soon as I bring up the topic of mental illness. It is a conversation that nobody wants to have. We are unwilling to admit our neglect and abuse of those who suffer from disorders that make them seem scary. We have yet to take mental illness as seriously as we need to do. I will keep shouting in the wilderness until I am no longer able or until we agree as a people to get something done.