Author Archives: James Desiderati

Dear Death

Dear Death

“….I need a friend.”

Good morning Death, I see you may plan to visit a woman who has been my friend for 5 years now. She called me this morning from the ICU at Tempe St Luke’s and asked me to come to her. She told me she is dying.

And I am wondering now Sir, What can I say? What can I do Yama? I give her a part of me in life, but what can I give to her in death? Should I cry with her?

My card says “It seems like we’ve been friends forever.” And now forever has come to take her. She will be free. I give her a poem which holds my soul in words- simply my opinion as I have no knowledge worth her life. I can only hold her hand and smile with fear that I may not say the right things to my friend who has said so many right things to me.

I share a little more of my time with her.

If she goes with you tomorrow, I will know that we shared love today. I felt the sun in my heart.

Today, oh Death, we learned of education. Plato could say the right things to my friend. We listened of love and I learned that love does not come to an end, and this has helped me to stand straight at my friend’s bedside as I share that idea. To her I can say, “I hope that you will remember we share love, and it does not come to an end.”

Now I must go to her as you too may be ahead of me. When I see you Death I will not recognize you. You look different to me today than you did yesterday. I’ll try not to be afraid. If when I get to her she has gone with you, please give her my love.

Respectfully Yours ,

JMD 6-13-1990

————————

The above writing was the result of a phone call I found on my answering machine late one morning after night shift at the steel-mill and early morning Philosophy class at Mesa Community College. My friend recovered from her condition. 26 years later after 20 plus years in nursing this letter to death carries much more meaning to me now than it ever did then.

In our excitement to preserve life, we have indirectly vilified death.

Working with end of life care and Hospice has led me to a place now where I hope to share the importance of having conversations with loved ones, friends and caregivers long before such a situation as above takes place.

Last Drop in the Bucket

Imagine your life is a bucket and time is a drop of water.

Perhaps, at one time or another in your life you have felt that there were no answers, no choices, no hope and no point in trying any longer.

But there was still a tomorrow. Drop by drop.

Suppose you found you were at a crossroads with detour signs, one way streets and construction seemingly blocking every possible way to proceed.

But there was still a tomorrow. Drop by drop.

Suddenly you may have become aware that there were no friends, family, counselors, clergy, or available options for you to seek solace, find comfort or peace from turmoil.

But there was still a tomorrow. Drop by drop.

We often hustle into each day with our hopes, dreams, goals, tasks, responsibilities and clocks trying to accomplish something, even if it is to just reach the end of it.

But there is still a tomorrow. Drop by drop.

Imagine now, there is no tomorrow. Your bucket is rapidly approaching its limit.

How would this change your thoughts? What would be most important for you to achieve? Who would you want to share these last hours minutes or seconds with?

It is difficult for me to comprehend there would be no tomorrow. I have Pasta sauce thawing in the refrigerator, there are chapters to read in my class, there is potato salad I want to take to a Birthday party. But then these are the thoughts from a person with a relatively pain free, mostly healthy body, growing spirit of hope, and compassion. A mind eager for continued learning, creativity and consciousness.

Life has shown me many paths. Along this journey I have seen many different people. Each who cope in their own way. Each person has the same number of hours in every day. Yet I see many with vastly different focus, priority, and ambition. They are rightly giving their attention, energy and purpose to a countless array of topics, goals and directions. Among these there is constant debate in the world of who is most wise, wealthy, famous, or attractive. We want to know who is the most talented, strongest, or fastest of all.

Billions of dollars are spent to direct our attention, shift our focus, and recruit our interest. We are consumers after all. Every one of us, from the moment of birth, targeted for advertisement. What we consume most of all is time, every one of us at the same pace every day. Drop by drop. What we often waste most of all is time also. And we often do not put enough value on our time until there is no tomorrow.

Caring Choices hopes that by encouraging conversation between people we can eliminate the barrenness of lost hope when our lives are suddenly faced with the reality that there may be no tomorrow. Long before it becomes hours, minutes, or seconds left, there is opportunity for discussion about choices, hopes, and questions asked that may or may not have answers. But the questions will still then be asked. Questions asked by and with family, friends, counselors or clergy. Questions can be asked about options, hopes, dreams, goals, tasks or responsibilities. Is your bucket of time half full, or is it half empty? Please don’t wait until “The last drop in the bucket” and opportunity is lost.

Time

What impact this word can have in so many different situations. What usually comes to my mind when hearing this is to try and fill in the next word or words before or after. For example: It’s Time, Time Flys, Time Stood Still, Time ran out, Time out, and on and on we can go. How about “Time flys when you’re having fun.” As “time” goes by, I realize that it is not only when having fun but also when I am focused on something. For me, playing guitar is the easiest way to lose 4 hours I have ever seen. As I get older I also remember people saying “Time seems to go faster when you’re old.” Truth be told, yes, I wake up one morning and say “My God, it is Thursday already.” Weeks seem to fly by. When I was younger it was mostly “Time seems to drag on and on.” Especially when in school, waiting for the class to be over, the day to end, the bus to get home, or supper to be ready. Today it is more like the total opposite. I cannot seem to find the time to get anything done. And my, “how times have changed”. Sound familiar to anyone?

The discussion of time can lead to a host of topics and provocative conversation. In the focus of time on this earth, we all, reluctantly maybe, are reminded each week by these blogs that our time is limited. Each week we try to generate interest in why and how planning and preparation for this limited time is important. Not only for each individual, but for our loved ones, our friends, and our associates in business, education, or any other position where there is any responsibility for action to occur when someone is suddenly absent from the scene. Over “time,” I see change occurring. I see a greater understanding and awareness of the benefits of end of life planning and discussion.

Recently a friend posted a short series of well known (but some for me, unknown) facts about the origins of different meanings to phrases not all that dissimilar to the references of time above. They included what seemed to me to be reliable origins for old sayings like “chewing the fat,” “crossing the threshold,” “raining cats and dogs,” and many other common sayings that almost everyone I know has heard or said. “Time has come” for continued education and implementation of more compassionate care to be given as the end of life approaches. Not only for those who suffer from disease or trauma, but for all of us who will inevitably be in need of the type of humanity and kindness so often only reserved for “certain times.”

Caring Choices will continue to “change with the times” and offer our continually growing experience with emotional support, coping, thoughtful discussion, understanding, and reassurance for those who desire and need help during their “time of need.”

Knock Knock

Whenever I hear this now I reluctantly respond in a slow monotone of “Whoooo’s there.” At one time I may have gleefully replied in a more excited tone of eager expectation of the often witty response. But at 60, I have heard the usual responses hundreds of times and rarely hear something new or funny. But today, as I considered the topic for my blog title, I overheard someone on the television say “Knock Knock.” Not knowing the context of the words on the TV show in the background, I suddenly realized the value of the statement as it pertains to quite a different subject.

Weekly, my wife and I take turns blogging about all the issues surrounding conversations we hope to generate among our readers and the general population about end of life needs, care, and desires. Knock Knock, now has an entirely different meaning for me.

So, who’s there, really? Ask yourselves, who is really there. When you are talking to someone you love, and you are interested in establishing a plan for how to attend to the needs of their changing health, finances, and function, who are they really? More importantly, who are they now? As my time in health care continues I have often heard the comments: “We have done that.”, “I have done that,”, or “I/we hope/want to do that with so and so soon, this Thanksgiving, at Christmas, during vacation.” The question is this: Do we feel comfortable with the level of comprehension of their feelings. It’s important to consider what may have changed since our last conversation. I have found that very few people have continued discussions and make adjustments to their living wills and documentation over time.

There are lots of resources available to give guidance to someone wishing to explore planning for end of life. There are social workers, physicians, and clergy. Numerous on-line options exist on how to plan and prepare for the multitude of situations people can and will face in the care for the transition of life from independence to dependence. None of these tools are going to be helpful if the person who is being cared for has not been involved on some level. I am constantly telling my patients and their families: “We can’t help if we don’t know.”

Caring Choices asks everyone to please Knock! Find out who’s there. Start to ask questions early. Document the answers in a clear and easy to understand style that can be quickly found and accessed by family, friends or health care professionals. Get to know your loved one’s thoughts on where, how, and what type of care and arrangements they are comfortable with. Please do not let decisions that can affect the remaining quality of life become subject to some standard response like it is of no more importance than an old joke.

Walk the Walk

I have been interested in music, poetry, and art the majority of my life. I have often paid close attention to detail and pondered the meaning behind many of the lyrics I heard over the years. On this occasion a spoken phrase from Jeff Beck’s “Guitar Shop” (released 10/1989) comes to mind: “Much is being said my lords, but nothing is being done.” The song’s lyrics seem to relate to the environment. The “Talk the Talk” companion to the title of this blog indicates that there is no follow through. There is no “action” (walk the walk) to complement the words.

Health care trends today suggest “having the talk”, conversation, discussion, and planning for the eventual changes life inevitably presents us. Sudden or chronic, we will face challenges to our health, independence, and stability. Yes, taking the time to have these meetings with family and friends, advocates, caregivers or attorneys is in our best interest. But it also takes Action beyond “talk”.

Words alone are easily misunderstood, and forgotten. The intentions behind them may change. The action I refer to is an on-going effort of the continued periodic review with whomever we have designated as our future healthcare advocate. Having a document that was drawn up 10, 20, or 30 years in the past is not truly a reflection of what may currently exist today. A friend recently mentioned how relieved he and his wife were when faced with difficult healthcare choices concerning the medical treatment of their failing family member. “I wasn’t going to go against Mom’s Living Will.” This was just one more example confirming for me the importance of taking action. “I didn’t want to talk about death and dying,” he said when describing his mother’s “action” during her research and application of planning for her future. The outcome was one of peaceful acceptance and gratitude that only afterwards could be most appreciated by him and his family. In my decade of hospice experiences, I have often witnessed the importance of action in addition to words.

Caring Choices can facilitate the “Talk” with the use of our Elephant in the Room. The next step (walk the walk) is yours.

2015 © Caring Choices

20/20

To see these two numbers together, brings to mind the saying “Hindsight is 20/20”. To me, this means the understanding of a wish that “had we only known yesterday,” what we experienced and maybe could have been avoided today. I have been viewing old and new documentaries and reading about the tragic sinking of the luxury liner, Titanic. After striking an iceberg at 11:40 PM on April 14, 1912, the Titanic sunk a little after 2:00 AM on the 15^th with over 1500 souls still aboard. Only 709 people were rescued that night. The anniversary of this fatal collision does not always warrant my attention but for some reason this year I had watched a new documentary on Netflix called “Titanic: The Final Mystery.” On April 15^th this year, I awoke from a dream in the early morning (around 1:30 AM) and the image in the dream carried over into consciousness to the degree I had to turn on the bedroom light to ensure there was no pool of water at the foot of my bed. This was just my imagination, right? Over-active mind from all the movies and reading about the accident I suppose. I soon remembered there were several real life experiences I have had in the past with potential life threatening drowning.

The first was as a child of 10 or 11. I had the good fortune of growing up within one block from the west branch of the mighty Susquehanna River. One afternoon on a hot summer day we swam over to “the island” from around 6^th Street in Milton. After a few hours of exploration and rock throwing, we swam back to the point on the east bank where we started the day. The only difference, this time it was an against-current swim. My friend had waded out from the island’s northern tip enough that he had no problem making it across the 40 or 50 feet to the shore. I had not started from the same place, but rather more from the side which made the current much stronger. It was not long before I realized that between the cold water, hours of throwing heavy rocks, and the fast current, my usual swimming power immediately ebbed into cramping panic. In an instant I was in danger, and my friend’s hand was only feet away as he stretched from the shoreline to help me. The harder I swam the weaker I got until I had no strength left. Had it not been for some fishermen pushing off from a nearby dock I could possibly have drowned. “Better get over there and pull him out,” I heard the older man say as the boat sped to my rescue. Even when I realized I had only to swim with the current and land safely downriver from where I wanted to go, I had no strength to stay afloat.

The next incident was in 1972. Having spent the entire week preparing the homes of many people along North Front Street, my father had made the choice to disregard the mandatory evacuation orders. The loud speakers bellowed the orders throughout the day. My family and I stole away in the house quietly and kept the lights dim to avoid detection. After all, my father assured us we were in no real danger and if the water came up too high we would just leave. We had placed every appliance and piece of furniture up on saw horses on the first floor. We enjoyed a dinner of hoagies and chips for supper and as early warning precaution, I slept on the bare hardwood floor of the living room that night. Throughout the day we had monitored the river, which was rising at a rate of 1-2 feet per hour. But again, we were the highest home on all of North Front Street sitting directly on the NE corner of 2^nd and Front Streets; no one felt any real concern.

Somewhere near dawn I awoke with a cold chill. My sleeping bag was damp; water was bubbling up between the floorboards and flowing steadily into the kitchen from the gap between the bottom of the basement door and floor. In less than two hours with full daylight we were trapped on the stairs and the water was up to the 5^th or 6^th step. I often wish today we had the technology of cell phones to have recorded the events of the next hour. After the boat had come into our living room through the front door, we had to gather a few belongings and step into the small fishing boat. The outboard motor filled the living room with a pale light smoke and the air stung with the sharp rasp of gasoline, oil and natural gas. Everywhere you looked there were barrels, logs, lawn furniture, toys, and other debris floating by. We then had to go to the home just to the east of us on 2^nd Street, to pick up an older lady who had also been lured into the illusion of safety, and stayed at home. The boatmen had to push against the ceiling and door jams to get into and out of the front door in order to retrieve the visibly distressed woman from her inner staircase. The water in her home was now almost 4 feet from the ceiling. We barely got out with everyone needing to duck down as flat as possible in the boat in order to get out the doorway. We rode toward the river and rounded the corner onto North Front Street. As we passed the street sign I could not help but notice that the top of the sign bearing the street names were only a few feet above water. This image will live with me forever. Our route took us all the way down Front Street until we got to Broadway where we turned East toward the safety of the hill just across the railroad tracks. Men were at the intersection of Arch and Broadway to safely direct us between giant banded bundles of lumber. These bundles had floated down from Clinger Lumber around Locust Street and were slamming into the glass fronts of the buildings at the South end of the street. We were safely escorted between bundles and unloaded onto dry ground just past the Newsstand where the elevation started its gentle rise.

Hindsight tells me now that had I known at 10 or 11 years old that the combination of my sore muscles, cold water and faster current would have paralyzed my arms, I would never have crossed the river at that angle. Likewise, had my father known that the water would rise continually all night and into the next several days, he would never have chosen for us and our neighbor to stay in our houses. He didn’t anticipate the risk of fire from gasoline, oil and natural gas leaks nearby, or structural damage from the loosened renegade flood debris.

Caring Choices does not possess a special 20/20 hindsight vision that can warn others of impending tragedy. We can however, refer to the hundreds of experiences in both our private and professional lives where people have again and again called upon this elusive sense. The more prepared we are for inevitable situations and unexpected change, the less time and energy need be directed to things that could have easily been planned for and possibly avoided. This would allow more positive interaction to occur in the moments where the true focus of attention exists.

Easter Egg Hunt

Few people I know can imagine, or remember an Easter without one. Wobbling, giggling, and squealing with delight at each find, children and adults, inside or out, search high and low for prizes and treats. Secreted away in not-so-hard to find spots, these brightly colored eggs and surprises are to help celebrate the joy and generosity of love and life for all. No one is excluded if you want to participate.

But what if no one could find them? What if the objects of our search were hidden too well? What if they were there, but just beyond reach? Maybe someone could help. What if they were completely out of sight? Someone would surely give us hints like, “You’re getting warmer or “Nope! You’re getting colder”. What if there were never anything hidden at all? But somehow you didn’t know that. You went on the hunt all the same. And you would be hopeful that you would find what you expected to be hidden, willing to take the time to look and help others who may be looking as well.

As I thought about the conversations that Caring Choices promotes today, I realized how easily we also may believe things will be found quickly and effortlessly once we need to search for them. And I thought of all the countless conversations I have witnessed while working Hospice once a search did not produce the desired answers. And there are so many questions that can, and do come up. Questions about providing 24 hour care, medication refills and administration, location of legal documents, planning services, about distribution or settlement of finances, about property, about distant family and friends. The list is almost endless.

My sister Linda died unexpectedly in her sleep. The impact of that day is permanently ingrained in my daily life now. I am fortunate to know she passed in her sleep. I am lucky to have been able to share in the grief with my family afterwards. I am grateful for the comfort of knowing she did not suffer. My mother and father both had the advantages of Hospice care for their final months of life. They were both able to choose the opportunity to find peace and had time to recognize that life was coming to an end and were able to make changes and plans accordingly. Their loss is felt by me in varying degrees some way every day. I honor the memory of their love. I have dedicated my life to trying to ease the suffering of those around me, even if it is only possible to just make them smile.

Caring Choices also celebrates life and love. We share in our own traditions and personal “hunts” with open dialog and respect. We consider the rights of everyone involved in the care and planning of the future. And for the people who do not want to be left with an empty basket of ideas, we have the discussion guide: http://elephant-inthe-room.org/. Cindy and I have experienced the loss of loved ones both suddenly, unexpectedly and over prolonged slow decline. It is from the empathy and understanding of the traumatic and chronic effects of change that make us want to share with others the importance of discussions before the search for answers suddenly begins.

Shrink Wrapped

Throughout my life I have absorbed wisdom, ideas, inspiration and hope from the world around me. Life is one experience after another; good or bad, welcomed or resisted, change occurs. Today during a breakfast meeting with a very good friend I was enlightened with today’s blog topic by a certain phrase he stated. After listening to me rattle on about the completion of my Key to Your Soul CD project and Elephant in the Room discussion guide he said. “Congratulations on your two shrink wrapped accomplishments.” I laughed and said something about my head getting shrink wrapped in reference to the invested risk, time, work, and cost of the projects. Later I realized the value in his statement in relationship to some views on death.

Even with the health care exposure in my life time (as patient, first aid class attendee, life guard, CNA, LPN, RN and 10 year experience with Hospice), it is still obvious to me that there are some people in this world who cannot, or will not, feel comfortable with discussions about death. Fear, I believe is the ultimate factor for most. For others it is more the fact that, as with birth, death is a private journey in which they are accurately aware but just not comfortable discussing it. No matter what the rationale, there are certain facts we know about our feelings, hopes, dreams, and wishes that would better serve us if others were to know them as well. Yet for the vast majority of us, our ideas about death are “shrink wrapped” inside us and we put trust in some vague hope that somehow we will have a “good” death. Good, as in peaceful, painless, regret free, quick, and while we sleep.

One of the major influences on my early education in the healthcare field was a class I took through Rio Salado College in Maricopa County, Arizona. The class text book was Albert Ellis’s A Guide to Rational Living. “Let’s face it,” Ellis writes “reality often stinks.” This particular statement produced an immediate sense of the tragic comedy of this life. We are given senses and a mind to explore and search the vast universal realms of heart and soul equipped with a vessel that weakens and deteriorates just at the time when our life experiences culminate into the realization of self and purpose. Now that’s funny! Yet it is sad all the same. For those of us fortunate enough to survive the experimental years of youth, wrath of war torn global politics, and accidental or intentional trauma, sickness or disease, we are left with aging bodies and dimming minds. Bless the industry of suspended youth that has cropped up in light of this insurmountable fact.

Caring Choices would like to encourage everyone to examine themselves in the mirror, and if necessary, break the shrink wrap around your hearts and minds. Discuss the love and hope for the future with your family, friends, and caregivers. Allow them the opportunity to serve you with the goal of hope for that peaceful, pain and regret-free moment when all intimacies are true and no fear, shame, or agony is invited.

Struggle to Exist

In the never ending search for blog topics, I find myself listening, reading and talking with the hope that something I see or hear will stand out as an interesting point to try and share. This week Cindy suggested she had heard something in my music from a song entitled Traces Exist, which has inspired me to write about an idea that the line “struggle to exist” triggered.

We all face certain responsibilities in life that are actually mandated to us from laws beyond those of conscience, ethics and morals. We all must pay tax on income. We must purchase car insurance if we choose to obtain an active driver’s license. We are even asked to obtain health insurance with the prospect of being fined if we are caught without. What struck me today was that there seems to be no responsibility designated to anyone to have advanced care and end of life discussions, despite the growing concern for costs related to the care given during aggressive or prolonged end-of-life care. There are often no improved condition parameters or attainable goals set forth which govern the extent to which treatments for prolonged illness proceed. Hoping for more time when faced with the end of life appears to be the focus without regard for quality of life, cost considerations, or relief from symptoms. Is length of time really all that matters?

Perhaps the questions are too difficult to process, the answers to varied, complicated or vague to comprehend. Humanity simply survives. But more than once in my career I have heard people say “We treat our animals better.” There is no guarantee that treatments, procedures and new advancements in technology and medicine will ever eradicate the immediate needs of the person faced with the already weakening muscles, disrupted digestion, and pain-deprived sleep. The impact of the finality of death affects everyone involved. From physicians to families of the patients, all feel the pressure to apply the best state-of-the-art processes to prolong life and “beat” death. But we cannot ultimately win. And so we “struggle to exist” in a state of suspended hope that a miracle will occur and maybe this next pill, next surgery, or next infusion will be the one that wins the fight. And I do know that miracles can and do happen – sometimes.

Caring Choices also hopes for the miracles that relieve the struggling of those faced with declining health no matter what the cause: natural aging, disease, or trauma. The final outcome for all of us is going to be the same. How we prepare for this is not going to become “mandatory”. You will not be fined if you do not talk about death. You will not be bothered at all by anyone. You will likely never even be asked how you feel about your own death until the reality of it is in your face. And as we all age that face becomes more familiar, and it takes on the shape of our family, friends, coworkers, and neighbors. Sooner or later it will be in your mirror. What will you say to your reflection then? Will you be prepared? Will you have peace and comfort as your priority? Or, will you struggle to exist?

Paralysis of Analysis

Wikipedia: Analysis paralysis or paralysis of analysis is an anti-pattern, the state of over-analyzing (or over-thinking) a situation so that a decision or action is never taken, in effect paralyzing the outcome. A decision can be treated as over-complicated, with too many detailed options, so that a choice is never made, rather than try something and change if a major problem arises. A person might be seeking the optimal or “perfect” solution upfront, and fear making any decision which could lead to erroneous results, when on the way to a better solution.

This phrase seemed comical when I heard the studio engineer use it in reference to the final mix-down phase of my recently completed CD. I had never heard this before, at least not to a degree where it actually resonated in my mind at all. But here, in the final stages of my CD production, the meaning sunk home with the impact of a slap to the face. I have always been hyper critical of my performances, and had never felt satisfied with any of my previous attempts.

And so the process of mixing my songs into a state of digestible consumption continued in the most basic format. I made the choice to substitute the paralysis of analysis with trust and intuition in the combination of the expertise of the studio engineer, thousands of edits, and a few “happy mistakes”. Now my CD project is complete! As I sat pondering a topic for today’s blog, I was suddenly aware of how characteristically similar this concept carries into just about any subject. In this case, conversations about health care, advanced care planning, and end of life discussions.

Anyone reasonably concerned with preparing for the future would begin with an assessment of the currently available resources and forecasting of probable future needs. Following up with a plan and then evaluation of the implementation of our wishes is where the paralysis is most likely to occur. We will not know what the outcome will be. We will not know until it happens what we will likely need. There are a growing number of studies now that support the importance of advanced care planning but there are no survivors who can testify as to the quality of life they received during their last moments. Only the surviving family, friends, and caregivers remain with whatever bias they may or may not be reporting from. History is written by the victorious. But in this case of preparation for death, no one gets out alive. The finite nature of this fact alone can cause people to go numb and be unable to make choices or act. The national median hospice length of stay is frighteningly low at 18.5 days (NHPCO). I have admitted many people to hospice in my 10 years of service who do not live even a week, thereby missing the majority of support available emotionally, physically and spiritually.

Caring Choices offers the motivation to avoid the gridlock of indecision and the stagnation of inertia before it can stall the benefits of having expressed your feelings, emotional fears, and concerns while you are able. Often just a few minutes of listening can make a huge difference for someone who is struggling with the fear of death, advancing disease, or general decline of aging.