“The Forgetting: A Portrait of Alzheimer’s!”

“The Forgetting: A Portrait of Alzheimer’s” is a 2003 Public Broadcasting Service Documentary that was patterned after a book by David Shenk by the same title. The made-for-television special portrays the entire spectrum of Alzheimer’s history from the ancient legends of demented folklore to its original diagnosis in 1903 by Dr. Eloise Alzheimer and on to the cutting edge of Alzheimer’s research today.  I highly reccommend this series for all who are interested in Alzheimer and is available on youtube.com. I will focus my reflection upon this relentless disease and how it will impact in the future my work as a hospice and/or hospital chaplain.

Alzheimer’s can be separated into two broad categories: early-onset Alzheimer’s and old-age Alzheimer’s. Behaviorally, early-onset Alzheimer’s can be defined as dementia that begins prior to the seventieth birthday, and conversely, old-age Alzheimer’s is everything else. Clinically, all forms of Alzheimer’s are caused from the interruption of synapse (electrical brain connections) secondary to the accumulation of plaque (starchy deposits). This interruption ultimately results in the death and shrinkage of brain tissue. Of the two, early-onset Alzheimer’s is more aggressive and the progress from diagnosis from onset to death can be very rapid (<5 yrs.), while old-age Alzheimer’s takes much longer (13-20 yrs).

In 1987 Alzheimer’s was already considered epidemic with 500,000 living with the disease in the United States alone. By 2002 the ranks of those diagnosed with Alzheimer’s were well over 5 million people (more than 10 times). While this number is alarming, it should not be construed to be spreading to new populations. Rather consider this: in 1980 there were 2,250 people in the United States that were over 100 years old. In the year 2000 that number had swollen to 250,000 people over 100 years old (also more than 10 times). This fact is solely responsible for the increase in the vast number of those diagnosed with Alzheimer’s, because the increase is in the old-age Alzheimer’s category.

Ten percent of all 75-year-old Americans have Alzheimer’s. The number is a little harder to determine (due to other forms of dementia being present as well) in Americans that reach the age of 85. However, studies show a range between 25 and 47% of all 85-year-old Americans as having Alzheimer’s. Due to advances in other areas of health care, more and more people are living to such a ripe, old age, and therefore the number of Alzheimer’s patients continues to grow. This growth is at an unprecedented cost to Americans with 100 billion dollars being spent in 2002 for the treatment and care of Alzheimer’s patients alone. With baby boomers soon to reach ‘old-age,’ the number of Alzheimer’s patients is expected to multiply by 10 again, reaching 25 million by 2030. By this time the cost of treatment and care for Alzheimer’s will be larger than the United States government’s entire annual budget. It is obvious that something must be done, and research is at a furious pace, with many new breakthroughs in recent years.

While praying for a cure and/or an effective treatment for the disease is prudent, there is little doubt that there is (and will be increasingly so) a great need for chaplains who will be willing, prepared, and qualified to provide spiritual care to those demented patients walking in the shadows of their old age.

The Man Who Plays the Music!

“Even marginal people within the church receive the social benefits of church involvement (Paragament, page 56). By marginal, Pargament meant people that live on the peripherals of the church such as non-attending relatives of members, non-attending maintenance personnel, local business employees or owners, and/or possibly rarely attending visitors. They all receive the social benefit of being loosely associated with the church. For example, the non-attending relative might be able to call on the ministry to pray in times of sickness, preach funerals, enjoy the camaraderie of passing fellowship, or have marriage ceremonies performed. The local business employees or owners benefit from the increase in business, and the morality propagated by the church decreases theft and vandalism. Many non-members, non-attending marginal people, benefit from the community of the church, and often they are unaware of such benefits.


These thoughts and more can be related directly to clinical ministry in either the hospital or hospice setting. Many ‘marginal’ people benefit from the ministry of the chaplain, and often neither the chaplain or the benefited are cognitively aware of the benefit. For example, I was called out to see a client who was actively dying last night. Her granddaughter was all alone with her grandmother as she died, and the hospice nurse was concerned about the unhealthy nature of this aloneness. I, as the on-call chaplain, was called to provide support. The focus of my ministry was the client and her granddaughter. However, while there, I was able to minister to the lady in the next bed who was scared of all the commotion and to the aide who had cared for the client for 4 years and was as emotionally distraught as the granddaughter. Many times my ministry touches medical staff on the peripherals of the situation such as doctors, nurses, aides, and other medical professionals. Even at times this blessing is extended to volunteers such as the cookie ladies or non-medical staff such as maintenance personnel and janitorial staff.

The idea of the mere presence of the chaplain is well established as an effective treatment modality among medical literature. It is true that the wherewithal to why presence is effective remains difficult to explain. Nevertheless, none would deny the value of presence. I had a patient one time that rejected spiritual care outright upon my arrival in the room. As I immediately backed out of the room, the patient called me back to the room. For some reason he felt safe to ask me some questions. He stated, “I believe in God… but really now… what exactly do you think you can do to help me in a few minutes that will change the outcome of my situation?” At this time I had yet to even say anything beyond, “Hi! My name is Joey, and I am the chaplain…” before being thrown out of the room.

I asked him, more from inspiration than planned cognition, “What are you thinking about right now?”

He said, “Well I’m thinking about how I am not sure prayer works… and what motivates you to spend your time coming around to our rooms…”

I replied, “First you say you are thinking about prayer and that you are considering my motivations. Earlier you volunteered quickly, without my saying anything, that you believe in God.” After he affirmed what I said was right, I followed up with a second question, “What were you thinking about before I came in?”

With a chuckle, knowing I had him, he replied, “I was thinking about how mad I was at being sick and how much bad luck I have.”

With a knowing smile, I too joined him in chuckling, “I guess I could leave now and consider that the job I came to do has been done. When I arrived you were mad about your sickness and thinking about your bad luck. Now you are chuckling and thinking about the God you believed in, wondering if prayer might work, and considering one’s motivations. I would say just my presence has done good work here. I really could not have accomplished more if I had preached a sermon!”

When the chaplain walks into the room, the very presence of the church community surrounds him, and even people on the margins benefit. Immediately people’s thoughts, of both the target patient and bystanders, go to more spiritual things, and they began to draw strength from spiritual resources. If an off-color story or joke is being told, it is hushed and apologies are made. If doubt has permeated one’s thoughts, hope is often birthed anew. There is nothing mystical about presence. When one is introduced as a chaplain, the mind gravitates to all of the things you associate with such a word. The word and work of a chaplain evokes a wide array of thoughts in patients, such as: hope, love, gentleness, Christ, church, prayer, strength, healing, scriptures, hymns, and more. If the chaplain is familiar, even an introduction can become unnecessary to blossom thoughts and memories. I can even see this in patients with dementia. They often don’t remember who I am, but one such lady said, “I know you, you are the man who plays the music!” That and more is presence…

A Holy Place for This Battered Band

“Now for a brief time God, our God, has allowed us, this battered band, to get a firm foothold in this holy place so that our God may brighten our eyes and lighten our burdens as we serve out this hard sentence.” (Ezra 9:8, The Message)


This Holy experience I want to share with each of you. For Pentecostals, this was truly a Pentecostal experience. I don’t know what others may say, think, or call it; all I can be certain of is that this experience will sustain me for many years to come.

It was the last patient of the day, and I almost didn’t go and see the man because he was in such agony. They had been unable to contain his pain that was secondary to palative back surgery that was secondary to metastasized cancer. He had been unable to be moved without screaming, due to his pain, and wanted to just be left alone by everyone. His prognosis is extremely poor and death is imminent. I decided to see him, against his spoken request to the nurse to be left alone, in hopes that prayer might work where medication had not.

I entered the room, and he was lying very still and taking very short, gasping-type breaths. His pain was obvious! I introduced myself and acknowledged his pain and sickness. He was obviously not an American, and I asked him his nationality (this is not something I have ever asked before, and I am not sure why I asked it this time). He told me he was from South America. I asked him what brought him to America, and he told me he had worked his whole life as an international salesman for a locally based company, and they had moved him to America to be closer to their corporate headquarters.

I was about to offer prayer when he asked me what faith I was. When I told him I was Pentecostal, he asked me if I was 'what kind of Pentecostal' (my thoughts at this point – this guy must know a bit about Pentecost). He was familiar with my tradition and stated that he had helped start Pentecostal missions for all over his home country.  He began to talk about the wonder of his work and the importance of the changing power of Pentecost in people’s lives. While he did not consider himself a preacher, his money and contacts were able to start countless missions in the jungles. It is his most rewarding legacy. He seemed to light up as he talked about this work.

It is important that you remember that through all of this he is making small, gasping breaths to try and control his pain. Each whispered word jarred his body and heightened his pain. I wanted to stop him, but there was something therapeutic in his talking about his love for the work of God. There was something pure and holy in this dying old man, who had taken over the entire conversation.

At some point in his talk about his love for the work of God, a change began to take place, and if I might be so bold, it seemed as if angels began to lift up this man and gave him strength. His whispered words of pain became stronger, and it was as if he had become free from the bonds of the world. He began to speak as a prophet and began to speak into my life words of life, hope, and strength. He began to speak out about my ministry as a hospital chaplain and to confirm God’s call and anointing in the path that I am walking. He identified my fears, doubts, and obstacles that would have been impossible for him to know. He assured me that God would go with me, provide for me, and that God had a great work for me to do that would include a harvest of many souls.

After about ten minutes of speaking into my life and story, he reached out his thin, frail arms and laid his hands upon me. He spent another five minutes speaking in tongues and praying for me, asking God for His anointing and blessing upon my life and ministry. God’s presence seemed to flood into the place as he prayed. Surely we had found a holy place together in the presence of God. As the patient prayed loudly and boldly, I began to speak quietly in tongues as an almost physical anointing poured over me, warming me from head to toe.

Spent, the old man collapsed back in the bed, once again gasping small breaths of pain. We sat there together silently for a while, and then he said, “Maybe God has let me live to this point that I might do this one thing more before I die!” Tears were rolling down my face, and I did not know what to say. The only thing I could think was that neither my CPE training nor my education had prepared me for this experience. When I finally turned to leave the room, the one-on-one nurse was standing there wide-eyed in the doorway. When she saw my tears, she quickly turned away and made herself appear busy. These words seem inadequate to describe this experience, but if I live another fifty years, I will not forget this experience.

Faith in God Alone

“...therefore choose life, that both thou and thy seed may live.” (Deuteronomy 30:19b)


Sometimes my work has been a constant reminder of the result of the choices we make in life. After three suicide victims and a multitude of other patients that were dying from self-inflicted injuries and/or diseases, it is difficult not to, at least, think about the choices that people are making every day of their lives. In the last few weeks I have seen more arms with needle tracks than I’ve seen in the last 40-plus years of my life. Dr. X told the ICU last week, “We need to get used to the idea that we are no longer a suburban community hospital, but rather the city has overtaken our hospital.” As a consequence of such demographic changes, we are now seeing the drug and alcohol abuse that is characteristic of a city hospital.

Every one of the suicide victims had rough lives of crime, abuse, drugs, and only God knows what else. I stood at the bedside of one such victim who also had brain and lung cancer, that was secondary to liver cancer, that was secondary to Hepatitis C, that was secondary to IV drug abuse. The family hysterically pleaded with me to pray that he be given one more chance to wake up from the overdose and have one more chance to make life right. The basis of their confidence in my prayers stemmed from my praying for the patient’s brother, who underwent brain surgery a few months ago, after leaving our ICU for Big Barnes. The brother recovered; therefore, if you pray for this patient he too will wake up and be able to embrace the family he has rejected. I tried to advise them that God did not always work in such a manner (the doctors said this patient would probably not live to wake up) and that while I would pray to a merciful God, it would be up to that same God to raise him up (or not). It was our job to trust God’s will regardless of the outcome. We prayed, and a few hours later he woke up, was extubated, and was sitting up talking the next morning when I arrived.

Now I said all of that, not to demonstrate the power of God, which is already well established, but rather to illustrate my frustration with the whole situation. I kind of felt like Jonah who preached, had revival with thousands of converts, and then was upset because he got what he preached/prayed for in Nineveh. It certainly seemed to all that God had heard my simple prayer, but within a few hours the patient was wanting (threatening) to leave the hospital so he could get on with making poor choices.

Now I know that God is sovereign, but I had to ask the question, “Why?” Why not the little lady on the other side of the ICU who was sick at no fault of her own? When I prayed for her nothing happened (at least not a physical healing). While thinking on this over the last week, I was finally reminded of my own little sermonette to the family when they asked me to pray. “I would pray to a merciful God, it would be up to that same God to raise him up (or not). It was our job to trust God’s will, regardless of the outcome.” I guess I will never fully understand or comprehend God’s grace and mercy, but I am again assured that Christ will have mercy on whom He will have mercy, and He will have compassion on whom He will have compassion. (Romans 9:15) Further, I may not understand what God does with my efforts, but certainly God knows what is best and what is right in each situation. Ultimately it is my job alone to trust God, to choose life, to encourage my patients to choose life, and that by doing so each of us will live.

Are You Listening?

• “The more you listen in depth, the more you will become aware that most people have relatively little insight into their own lives. Perhaps people’s lives are unexamined because no one is listening to them.” (John S. Savage, Listening and Caring Skills; A Guide for Groups and Leaders, Abingdon Press, 1996, page 33)
• “What you see is often not what is, and what they say is usually not the problem.” (Paraphrase of a quote from Cindy Miller, Counseling Professor at UGST, Couples in Crises Class, 2005)

 The first quote above, read earlier this week, made me remember the second quote that I often heard repeated while attending seminary. The responsibility of such statements sometimes overwhelms me when I think of the implication of missing the many listening cues that the chaplain is inundated with every time he enters a hospital room. Especially when the chaplain is often bombarded with miscues from the nurses, doctors, other staff, family members, bystanders, and even the patient themselves. As well, his own pain, problems, past, family, and more distract the chaplain. With all my being, I desire to be sensitive to what people are trying to, and needing to, say. But honestly, I know my humanity is a problem for the effectiveness of this whole process.

 

While I agree with the words of both quotes, the tenure of responsibility is more than any human can consistently keep up with. While it may seem that I am trying to defend the right or potential inability to not do a “good” job consistently while visiting patients, I assure you that the contrary is true. However, doing the job of listening effectively will take more than education, practice, or instruction. All of these are beneficial and should be taken advantage of, but dependence upon them alone will not produce the results desired. “Have I heard correctly? Am I listening well? Did I hear what was important? Will my response be clearly understandable?” (Emma J. Justes, Hearing Beyond the Words: How to Become a Listening Pastor, Abingdon Press, 2006, page 72.) The more I grapple with being a good listener, the more I realize that it will take an extraterrestrial influence to be able to do what I desire and is needed.

 

As a Christian chaplain, I am daily made aware that “that something needed” is available in the presence of God’s Spirit. Only with God’s Spirit preceding him and abiding with him can the chaplain walk into room after room of devastation, sickness, disease, heartache, and death and be able to repeatedly listen with a depth that will help him to assist the patient in becoming more insightful of their own lives. Such deep listening will enable the chaplain to guide the patient into their own encounter with the Spirit by reexamining their own spiritual journey. I am reminded of the words of the Apostle Paul that, when he was weak, Christ was made strong (2 Corinthians 12:10). My prayer is that in recognizing my weakness and knowing I can never consistently be a 5.0 chaplain, or even a consistent 3.0 chaplain, Christ’s Spirit might be strong in my ministry. That through Christ, which strengthens me, I can do all things (Philippians 4:13), and the more I am dependent upon His assistance, the better the chance of having an empathy score between 3.0 and 5.0. My greatest desire is that His Spirit would go with me while I do my human best and make up the difference. It is only with this faith I can continue to go from room to room…

 

All things to all people, that I might win some!

1 Corinthians 9:19-24 (TMNT) “Even though I am free of the demands and expectations of everyone, I have voluntarily become a servant to any and all in order to reach a wide range of people: religious, nonreligious, meticulous moralists, loose-living immoralists, the defeated, the demoralized—whoever. I didn’t take on their way of life. I kept my bearings in Christ—but I entered their world and tried to experience things from their point of view. I’ve become just about every sort of servant there is in my attempts to lead those I meet into a God-saved life. I did all this because of the Message. I didn’t just want to talk about it; I wanted to be in on it!”

This reflection is the result of a visit that I had with a very confused lady in her mid-sixties, who also happens to be Catholic. They had not yet determined the reason for her confusion, and it was becoming more pronounced by the hour. Over the course of 15-plus minutes, I could not keep her oriented to who I was and where we were (if not so serious, it would have been a very funny experience). However, I have not been able to get this situation off my mind, and therefore I will write the essence of my reflection.

While there, she thought that I was many things: doctor, priest, neighbor, relative, nurse, stranger, chaplain, and more. Because she was so confused, she also did not hesitate to speak her mind, much to the embarrassment of her daughter. She asked me if I was her priest, and when I said no, she asked me what religion I was. When I answered Pentecost, she responded with, “Oh, you’re one of those that speak in tongues.” I then asked her if she felt like she would like a Catholic Sister to visit her. She said, “Yes, I would like communion.” She then became very puzzled that a Catholic Sister and a Pentecostal minister could be chaplains together. I then tried to explain to her that both the Catholic Sister and myself visited with people, regardless of their faith, and if a specific need arose, we would contact each other. To try and explain, I offered the following example, “If a Catholic wants communion, I contact a Sister to fulfill that wish, and I suppose that if Sr. Mary was visiting a Pentecostal [I was fishing for an example she would appreciate] that wanted to speak in tongues, she might ask me to visit them.” There is quite a bit of humor here considering this lady was very confused.

This little interaction has provided me with many chuckles over the last week, but also a whole lot of reflection about who I am to the people I visit, and can I be “…all things to all people that I might [help] some?” Paul’s words, expanded by The Message Bible, expressed his desire to be a wide range of things, “whoever,” with the simple caveat to keep one’s self oriented in Christ. While communion and speaking in tongues are both Biblical experiences, they are not my missions while a chaplain. Yes, both may happen at times, but the important thing is to be a servant that attempts to lead people into a ‘God-oriented’ experience, taking them from wherever and whomever they are and pointing them towards God. I stand at the bedside as neither Catholic nor Pentecostal, but rather as an ambassador of God’s goodwill to all woman/mankind, whoever they may be.

It is not always easy to lay aside who I am and forget my particular brand, title, experiences, and/or traditions. As chaplain I am not there for me, but rather I am there for the patient lying in the bed. My time there must be spent focusing on where the patient is and how they might come closer in both faith and experience to the Christ of the Scriptures. I must draw from the resources of who they are and the traditions that are loved and meaningful to them and point them to a living God who is both present and interested in their situation. They are not forgotten, rejected, or abandoned, but rather sought after, loved, and succored by Christ.

Do this and you’ll live!

The parable of the Good Samaritin (Luke 10:26-37) is my favorite passage from the Bible, about which I have spent a tremendous amount of time reflecting and writing, and the guiding light of both my life and my ministry. Time, energy, and space will limit the points I wish to make, so I will try and limit them to how they impact my ministry as a chaplain. First, consideration will be given to the place of the neighbor in the context of chaplaincy; second, an examination into the preparation of the chaplain as the Good Samaritan; and third, finding life in caring for the dying.

Throughout the New Testament the word ‘neighbor’ is translated from the Greek word pleôsion. Pleôsion, when used as an adverb, is translated ‘near’, and when used as a noun, is translated ‘neighbor’, meaning one who is close by. Considering the commandment to love those who are close by as one’s self, and also the commandment to love even one’s enemies, changes entirely the common thoughts on such relationships. “Your neighbor is not your blood-relation only, not the circle of your acquaintance only, not your countryman or co-religionist only; but he or she whom you can help in any way whatsoever – the wretched tatterdemalion from the slightest contact with whom you shrink; the besotted and degraded; even your enemy, who hates you and despitefully uses you; him, her, mankind, you are to love.” (H.D. M. Spence, ed, The Pulpit Commentary, Vol. 16)  While Spencer was referring to one’s most wretched enemy as the neighbor, for the hospital or hospice chaplain such wretchedness can be allegorically and/or metaphorically conceived to be the most wretched of anguish, pain, confusion, and disease. It is these from which the natural woman/man will shrink, from even the slightest contact, but yet the chaplain chooses each day to walk into the lives of such individuals and their families.

The question, attempting to define one’s neighbor, is not a new question but was the same question asked of Jesus that precipitated the popular story of the Good Samaritan. “Who is my neighbor?” In answering this question today, it is important that we notice the positional references illustrated in the parable. The chaplain could argue that his patients are not his neighbors, but whether by choice, calling, and/or anointing, the chaplain has willingly walked into the proximity of his patients, thus making him/her the neighbor of the sick and dying. This is a good thing for the patient, because there are none who are more often lonely, shunned, or forgotten. My patients are my neighbors.

Another thing that has always fascinated me about this story is the preparation of the Good Samaritan. He came prepared to help someone injured along the road. He carried with him a first aid kit with disinfectant and bandages. He had transportation on which to carry the wounded. He had emergency funds available to pay for the extended care of the sick or injured. Finally, He had some training in the care and transportation of people in need of emergency care. While it may have been happenstance that the Good Samaritan came upon the man who had fallen among thieves, it is clear that he was prepared for such a possibility. None of the others who passed by were prepared to assist, either in what they had brought along or emotionally. None of them had considered the ‘what ifs’ of their journey that day. The Good Samaritan knew what to bring, what to do with what he brought, and where to take the injured he might pass.

The chaplain too should consider his/her preparation for the journey of chaplaincy and make sure she/he knows what to bring, what to do with what he has brought along, and where to take the sick and injured. There are many allegorical conclusions that I can make from this, but for me, my education and experience have taught me what I needed for journey down the chaplaincy road; CPE has taught, and is teaching, me what to do with what I have brought along on this journey; and my faith tradition has taught me where to bring my patients (at least those willing to go along).

Before Jesus began the parable of the Good Samaritan, He asked the question of his listeners, “What is in the Law?” As Jews had already been answering for centuries, the lawyer answered, “Love the Lord your God with all your passion and prayer and muscle and intelligence—and that you love your neighbor as well as you do yourself.” The last point I will make about this parable will consider the reply of our Lord to the above statement, “Do it and you’ll live.” In other words, Love God and love your neighbor and you will have life. This came to my mind this past week as I stood by the bed of a woman who was dying, talking with her husband. The woman was obviously in the final stages of her disease process, and her husband’s grief at losing her was great. Yet, he felt compelled to ask, “How do you do this? How do you go from one dying patient to another without cracking up?”

Standing there, I thought of the words of Christ, “Do this and you’ll live.” That by loving my neighbor, who happened to be like the man the Good Samaritan found by the side of the road dying, I could have life. The Good Samaritan knew the secret that the ‘religious’ leaders of the day did not know: the way to life was not in riches, or stature, or appointments, but rather in stopping to love the unlovable, the unapproachable, the diseased, and the dying. For me, the most important thing Jesus did, besides Calvary, was to touch the leper. That is what I see my job as, one who touches lepers, one who loves them in the same way I long to be loved, one who loves his neighbor as himself. Nothing fancy, just a leper toucher, but with the job comes life in such a way that words cannot explain.