THE QUESTION OF IDENTITY: WHO ARE WE, AFTER ALL?

By Paul M. Lewis

Whom do we identify with? That’s a basic question all of us may want to spend some time thinking about. It might seem at first to be of relatively small importance, too abstract to even mean anything in the real world. But it turns out the answer to it influences a lot about how we live our everyday lives.

Let me start off with an example from my own life. When I was young, I thought of myself as a good Catholic boy. At least, that is what I strove to be, possibly more so even than many of my classmates at St. Patrick’s Grammar School (yes, in those days, they were thought of as schools where grammar was taught, meaning not just how best to construct a sentence, but more widely, how to comport oneself in the world, how to construct a life). At St. Patrick’s, there were good boys and bad boys, the latter (mostly Italian—no one said Italian-Americans in those days) being those who flaunted the rules and wore their hair in a certain style the nuns most definitely disapproved of called a DA, or duck’s ass. They were the rebels, the tough guys, the non-conformists, the group I didn’t belong to (as much as I may have secretly wanted to be one of them).

Instead, I hung out with those who were less outwardly rebellious. But even these boys swore, spent a lot of time talking about sex, and generally didn’t take religion all that seriously. I tried to identify with them, but somehow it never came off very naturally for me. Inwardly, I disapproved of (could it be said that I feared?) their language, their topics of conversation, and their general disinterest in religious teachings. I suppose some might have thought I was a bit of a pill. The one saving grace I probably had was that, even at a young age, I instinctively knew enough about how to get along with people for them to accept me as one of their own. But, unbeknownst to them, I would often sneak off and kneel in prayer in the darkened interior of St. Patrick’s Church, or attend Friday night Benediction (a traditional Catholic devotional service). No wonder then, at age fourteen, I decided to enter a monastery.

Even there, however, I found boys who did not quite live up to my standards, which were very high! Yet people still appeared to like me because I was by nature a peacemaker and someone who tried to see the best in others, while openly criticizing no one. A big part of my not criticizing others stemmed from the awful realization that I knew I was far from the idealized self I imagined I should be. How could I blame others for not being somehow better, when the very faults I recognized in them I also saw all too clearly in myself—in fact, far worse ones? There were things the Church said not to do which I did, and many others which, while I might not have done them, I earnestly wanted to. And if I wanted it so much, wasn’t that tantamount to actually doing it? In short, the standards I believed the Church established for me, and those that I freely embraced on my own, were mountains so high I could never hope to fully scale them. In that sense, I consistently set up my own failure.

And so, my principal focus of identification in those years was with an idealized Church, one that I believed would allow me to lead a life I felt I was supposed to lead. It was a kind of umbilical cord that provided an association, a connection with an entity that I felt to be greater than myself, and which at the same time gave me a kind of scaffolding upon which to construct a life that I otherwise felt to be constantly on the verge of collapsing disastrously out of all control.

It worked, too, at least for a while, even if not completely, because I often felt I failed at the high standards I had created for myself. As such, and in keeping with Catholic teaching, I thought of myself as a sinner. Still, the superstructure did provide me with a consistent foundation upon which I endeavored to build something. Until, of course, it didn’t. The first problem with what might be called the “idealized external” is that it is, by definition, outside of oneself; and the second is that it, too, eventually shows itself to be less than perfect. Even I could see that the luster had begun to tarnish, that the Church was showing a darker, seedier, more squalid side. After all, it was made up of people, and people are far from perfect. Aside from being sometimes good and helpful and even loving, they—we, all of us—are also more than capable of selfishness, cruelty, prejudice, cynicism, arrogance, egotism, deceitfulness, anger, even violence. And the list could, of course, go on.

What I am saying is that any organization, any human group, no matter how good its intentions (in particular, its initial intentions, until time and usage begin to break them down), is so flawed we ought to think long and hard about fully identifying with it. And not just religious organizations; other groups as well could certainly be included, such as political parties, philanthropies, environmental groups, sports teams, cultural associations, as well as organizations affiliated with labor, the military etc.

In fact, the core of the problem comes exactly down to the question of the depth of one’s identification with the external. My childhood relationship with the Catholic Church, and with the particular monastic tradition I belonged to, was so all engulfing as to obscure everything else. I took it to be all there was, and when I eventually began to realize that life was writ far larger than that, more complex, messier, dirtier, more intent, more insistent on its own needs than anything I had previously thought possible, then I saw that this first object of my identification could no longer contain everything that I was.

But what could? That is the very question I have struggled with for many years. It is a question all of us must face. What I have always looked for is a wider, a deeper, more all-inclusive connectivity. Ultimately, I came to believe that this was my own relationship with my self; or, I should say, with my Self, the capitalized “s” indicative of some part of my being (and not just mine, of course, but everyone’s), beyond mere ego identity, that both includes all the things of everyday concern and, at the same time, goes beyond that.

I take great comfort in a particular passage from one of my favorite scriptures, the Bhagavad-Gita. If ever there has been a more insightful statement on identification, in the largest sense of that term, essentially on who we are, then I don’t know what it might be. Speaking of union with Brahma (the Creative Principle of the Godhead), Krishna says: “He so vowed, so blended, sees the Life-Soul resident in all things living, and all living things in the Life-Soul contained…Who dwell in all that lives and cleaves to Me in all, if a man sees everywhere—taught by his own similitude—one Life, one Essence, in the evil and the good, hold him a yogi, yea, well perfected!”

Taught be our own similitude—that’s a very interesting phrase. The language may sound a bit obscure, but put more simply, what it means is that we see in others exactly what is already within us, namely both evil and good; actually, more to the point, some messy, chaotic intermingling of the two. That is what human beings look like, at least on the outside. Within, who knows? Perhaps something bigger, more perfect, something that connects with all of life, and at the same time transcends it. Maybe this is what it means to realize who we truly are. And, if so, that’s what I want to identify with.

ELDERCARE – Can’t We Do Better?

by Kevin L Miller

Recently the well-respected “full service” retirement community where my parents are living into very old age, asked me to participate in their “customer satisfaction survey,” which turned out to be a perfunctory and shallow questionnaire about surface appearances rather than the real life experiences of the residents. Our family has found it absolutely essential to provide a family member advocate and caregiver on campus for eight hours per day, at least three or four days per week. Even with our involvement, major medications are missed, essential dietary guidelines are violated, and doctors’ orders are violated or overlooked. But those problems are minor in comparison to the heartbreak our parents are experiencing due to being separated after 68 years of marriage. So, I wrote a letter to the retirement community in order to give them real customer feedback and ask them, “Can’t we do better?”

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Why am I writing to you?

Yesterday one of your research associates called to interview me for your Customer Satisfaction Survey. As the son of two prominent residents, and friend to many others in that community, I have been very involved in advocating for my parents’ care and quality of life over the last several years. This experience has challenged me to think deeply about the issues you are facing in serving my parents’ needs, and some challenges you and the entire eldercare system, along with associated medical and living services, will have to grapple with in the future to offer eldercare to the next generation target markets, which may have very different circumstances and needs. I indicated to your interviewer that I would be happy to offer a much longer, in-depth interview by phone or in person about these expanded observations and implications. She invited me to write you a letter. So here it is:

1. Life-long lovers & companions separated after 68 years of marriage… How can this be right?

Seven months ago in August our family gathered in my parents’ large independent living apartment at the retirement community to celebrate their 68th wedding anniversary. Even then, we knew that a week later Dad would have to move into the skilled nursing facility (which the residents call “the hospital”) because he has advanced Parkinson’s Disease. The combination of Mom’s presence, family help, and in-home unskilled aides was no longer sufficient to safely and effectively care for him. So, on Aug 31, 2015, after 68 years of marriage, our parents were separated.

Before that day Mom had never lived alone for even one day in her life. Dad lives for her, and since his move into skilled nursing he has not stopped asking to return home to be by her side. Despite serious health issues of her own and great difficulty walking, Mother spends every morning and afternoon with Dad. I am there full time, three days per week. Other family members and large numbers of friends visit frequently. But our parents are heart-broken. Dad feels that he has fallen into a “trap from which there is no escape,” and our entire family is engaged in a constant racking of our collective brains to try to find a better solution. So far we have failed.

Could your retirement facility lead the way to innovate new models of eldercare that would allow couples to remain together even when they each develop very different kinds of care needs?

Confession and apologies

Here I must confess and apologize for the fact that I have precious few answers or solutions to offer regarding these very difficult challenges. But I think my family and I do have some sense of the kinds of questions that are important to ask at this juncture in the history of American eldercare, and more to the point, at this stage in your institutional mission. These are questions about what people need and where it hurts. They are questions that point to an evolving society and economy with rapidly changing requirements. How will you and other eldercare institutions survive the tsunami of change that is coming? The question above about separating life-long lovers is one piece of the puzzle. Here are some other questions:

2. How can you maintain the highest possible quality of life and sense of autonomy for residents after they become physically invalid, lose their short-term memory, and/or succumb to dementia?

Dad lives in the present moment with no memory of the recent past, but he has a strong mind in many other ways. He frequently asks where he is and does not understand why he cannot be with Mother. If he had the ability to retain a basic understanding of his current situation, it would be so helpful, but he can’t.

Yesterday I finished reading aloud to Dad and Mother his entire 242-page autobiography about the part of his life that he DOES remember — his excitingly active life and brilliant career as a minister, college professor, dean and vice president in four colleges, and eventually president of a Los Angeles university and finally president of Bethany Theological Seminary. It’s a riveting book. Everyone’s life is a riveting book! Dad is lucky. He has family with him for four hours every day and many other visitors come as well. I notice that the others on his ward seem to receive very few visitors. Some sit in their wheelchairs in the hallway, eyes glued to the locked entrance, hoping to see a familiar face, or figure out a way to escape. Many are abandoned and alone. Dad is dissatisfied with his current situation, but many of his neighbors are hopeless and bitter. Again, Dad is one of the lucky ones.

How can eldercare institutions raise the quality of life for all residents, including the less fortunate abandoned ones?

3. How can your excellent staff be empowered to enrich the lives of the residents?

All the residents in Dad’s “hospital” ward live in a beautifully appointed warehouse where they are tended by very kind, well-meaning, efficient and even loving staff members who do not have enough help to give each individual the attention s/he deserves. Some of these staff members are really stellar: The head nurse is a saint — always smiling and generous, no matter how much chaos descends upon her. Several certified nursing assistants are like that too. And one big guy is truly wonderful with our Dad who says of this gentle giant, “We pall around a lot. I like him.” One day when  he came to Dad’s room to walk him to supper, he asked Dad if he was ready to eat. Dad replied, “Yes, but I’d rather sit and talk with you.” Of course, that’s not possible. The gentle giant is constantly in demand with way too much to do. And this is only one of his two full-time jobs, which suggests that he may not be paid well enough for the heroic services he renders.

It is worth noting here that, while the full-time staff is simply excellent, there are not enough of them to fulfill the service demands of such a large institution, which is often forced to hire outside contractors — both skilled nurses and unskilled aides — who do not know the residents or their needs. I have talked to some of these substitute contractors, and they report that they do not receive any orientation or instruction but are thrown directly into assignments without preparation of any kind.

Could your institution expand its wonderful full-time staff? Could some kind of orientation / instruction be offered to outside contractors if they have to be called in to fill gaps? I’m sure the contractors are well-meaning and hard-working, but nobody can do any job without some form of preparation.

4. How can communication & information exchange become seamless in the eldercare system?

When we had to move Dad from their independent living apartment to the skilled nursing facility, my brother and I sat down with your very responsive administrators to discuss Dad’s special needs — key among them, a “soft mechanical diet” of pureed foods and thickened liquids to prevent aspiration which is one of the chief causes of death among advanced Parkinson’s patients. They agreed, but the news somehow did not get to the skilled nursing staff. We had another meeting a week later to underscore the fact that the soft diet and thickened liquids are imperative. Even six weeks later, when an outside contractor nurse was on duty and tried to give Dad regular thin liquids, I discovered that the requirement for thickened liquids was not on his chart. She checked! It wasn’t there. We added it.

During the same period when Dad was moved to skilled nursing, Mother was rushed from the retirement community to the city hospital four times in six weeks, and twice hospitalized. If I or another family member had not been there to brief the emergency and hospital teams on the specifics of her condition, they would have been working blind with little information about her recent medical history, episodes, and general condition. She also has short term memory problems now, and besides, when she was taken to the hospital, she was not in any condition to answer any questions at all.

After her last hospitalization, Mom was released to the short-term skilled nursing facility on your campus, where she stayed for nine days. I found out near the end of that period that somehow, her Coumadin medication specifications had not followed her to the hospital and then to short-term skilled nursing, and they had stopped administering this very important heart condition medication!

Is there a way to be a lot more comprehensive about detailed communications and information exchange among the various wings of the eldercare and healthcare systems?

What other forms of communication and information exchange could be added to the current regime to enhance the quality of life for all residents and their loved ones and caregivers?

5. How will eldercare institutions appeal to rapidly changing future target markets?

I know that there are lots of conversations going on about this question throughout the eldercare world, because the administrations of these institutions see a tsunami of change coming: Boomers have not been able to save for retirement as successfully as their parents did, and often have very different hopes, needs, and expectations about the whole nature of retirement than did the Greatest Generation. Indeed, we Boomers tend not to think of ourselves as “retiring” but as transitioning to a new lifestyle in which we will have the opportunity to fulfill new missions and realize some of the dreams we were not able to pursue during our professional years. We tend not to envision ourselves in a standard retirement community, because that model looks limiting and narrow to us. Many of us want something that seems more like the “real world” and less like what I have called “The Disneyland of Death.”

We wish our American society might wake up and understand how much experience, expertise and, yes, wisdom, we have acquired over a lifetime of hard work, and value what we have to contribute. In short, many of us want to be more fully integrated into society instead of being cordoned off in beautiful warehouse facilities for the elderly. We know that we have a lot to offer and we intend to do so. As I think about my own very diverse group of friends, I believe they would ask questions like these:

  • Where is the diversity in retirement communities? Why are there no Black, Asian, Hispanic, or Gay, residents? Why don’t the campus demographics look more like the rest of America?
  • If I lived there, where would I make my huge sculptures and paintings?
  • How would I be able to build rooms onto my dwelling? I can’t live without building things!
  • Where would I rebuild my race cars and work on my motorcycles?
  • How could I start my new cottage industry and sell my products?
  • Where would my rock band practice for many hours every week?
  • How could I keep all of my animals and plants?
  • How could I have a garden and put up a pantry of canned and preserved foods?
  • The doors to the independent living apartments are locked at 8:00 pm! How am I going to have a night life and bring guests home if I can’t get in after 8:00 pm? I’m NOT a child!
  • What if I want to host a seminar or symposium or a big family reunion or a political rally or a church event and have lots of guests for a whole week?
  • Can my spouse and I stay together even after our medical needs diverge?
  • Will my same-sex spouse and I be accepted in this retirement community?
  • I haven’t saved enough money for retirement. Do you have any options for me?
  • How can I retain control and autonomy over my own life all the way to the end and be allowed to die the way I want to die? I insist on the most fulfilling death possible for me.
  • Can I stay at home with access to increased healthcare and other services?
  • I don’t want to live in an “old folks home,” but I know I’m going to need some kind of help. What are my options? Aren’t there any other models of eldercare that I can consider?

Potential Next Steps and an Offer

As previously advertised, this letter contains lots of questions and not many answers. However, aren’t some of the solutions implied in the questions? I think they are. And if you pose these kinds of questions to a diverse group of stakeholders – your own administrators, staff, independent contractors, suppliers, residents, their families, prospective customers, and outside experts – in a multi-day ideation session, you will begin to hear some innovative concepts for new and exciting approaches to eldercare.

This is clearly beyond the scope of your current survey, but if you are interested in taking a next step toward exploring new forms and approaches to your products and services for the future, my brother and I have been offering those kinds of ideation programs to Fortune 500 companies and other institutions for well over 25 years, and we would be glad to be of service. Some of our team would stay out of content to facilitate the innovation session, and others would sit with the participants and offer ideas to add to the mix. Of course, your decision-makers would make the final selection of a set of ideas to develop for further consideration.

Finally, if your administration would like to discuss any of these questions, ideas and proposals further, please feel free to respond to this letter or give me a call. I wish you all the best in your survey. I am confident that current residents will respond very positively. The themes explored in this letter are primarily focused on how to appeal to future target markets.

Sincerely, — Kevin

Post Script: Two staff members acknowledged receiving my letter, but no further discussion of the letter was pursued. I continue to wonder, “Can’t we do better?”

WHAT DOES IT MEAN TO DIE A NATURAL DEATH?

BY PAUL M. LEWIS

How best to care for elderly relatives is an issue many people are struggling with these days. It’s a subject close to home for my partner and me, as well, given that his mother is in hospice care and has been for the past six months. In addition, we know at least half a dozen others, good friends, who are struggling in their own ways with taking care of elderly parents, whether they live close by or at a greater distance. We are, ourselves, some 500 miles away from my partner’s mother and make the nine-hour trip there at least once a month. Another friend undertakes a seven-hour drive to see his mother every week, arranging to work a full-time schedule in four days and compacting Mom’s care, plus the 14-hour round-trip, into his Friday-to-Sunday weekends. Yet another has his 93 year old mother living in his home, with him as 24 hour-a-day caregiver. And one other close friend is overseeing the care of both of his parents simultaneously, one of whom is in a skilled nursing facility, while the other still lives, at least technically, on her own, but needs almost constant care. Additionally, there are still others who have it much worse, those who have to combine eldercare with raising small children, for example, or those who are struggling with their own physical ailments, while attempting to deal with the illnesses of aged parents.

In one sense, this is not entirely new. To an extent, families have always dealt with taking care of the elderly. At one point in our history, it was not at all uncommon for grandma or granddad to live in the same home with a grown daughter or son and their family. People simply contrived to take care of the older person, as he or she got sicker and closer to death. What has changed, however, and changed dramatically, in the last few decades is the length of time that people have been living. Not so long ago—certainly within my lifetime and in the lifetimes of many of my contemporaries—common diseases would have caused the death of many an elderly relative. In my own family, both of my grandfathers had died before I was born, and neither of my grandmothers lived much beyond their mid 70’s. During the 1950’s and 60’s, when they died, that was relatively common, and simply seen as part of the rhythm of life that comes to its expected end. I am not suggesting that the loss of a loved one was any easier, or less traumatic, in those years. The point is only that it often happened earlier in that person’s lifespan, and consequently in the lives of their offspring and caregivers.

Today, diseases and other ailments that, only a few decades ago, might well have carried off an individual are now regularly treated by modern medicine in such a way as to prolong the lives of those suffering from them. I am speaking of afflictions such as heart disease, stroke, pneumonia, even some forms of cancer, to say nothing of helping those seriously injured in devastating accidents that at one time might have very well brought about death. Again, I want to make it clear I’m not at all suggesting that this is bad. Of course, we all want those whom we love to go on living. What I am saying is that the longer a person lives, especially into what we now think of as extreme old age, that is, the nineties and beyond, the more difficult it becomes not only for them, but for those whose lot it falls to to care for them, particularly as their quality of life becomes more and more compromised. And the burden of this care can be a heavy one, physically, financially, emotionally, and simply in terms of time and energy.

Ultimately, the larger and more overriding question may be this: What does it mean to die a natural death? Many people have decided that they do not wish to live on life support and have issued what is commonly referred to as a DNR—a Do Not Resuscitate order. Both my partner and I have done so, as has his mother. Even so, the question is not as clear-cut as it may at first seem. There are endless gradations involved, gray areas, in between places when it falls to the person who is acting for another to decide if “this is really it.” If an elderly mother, for example, has a stroke, who is to say if she can come back from it and regain much of her strength and mobility? Or if a father in his 80’s has an abdominal aneurysm, should he be operated on in order to relieve the potentiality of it rupturing? Of course he should, many of us would say. And yet, this was exactly the case for a good friend of mine. It turned out his daughters decided for him, as his mind was already somewhat compromised and he had difficulty fully understanding the ramifications of decisions. Yet, after the operation, he slipped more and more into a world inaccessible to anyone, and lingered for another year in that twilight state. This is not to blame his daughters, who did what they thought right, but was it what my friend really wanted?

At what point do we decide, either for ourselves or for those we are looking after, that no more medical help ought to be given, other than palliative, non-curative care? And what of people who have decided that the time has come, choose hospice care, and yet somehow still cling to life, in essence forgetting that they may have made such a decision? And if they made that decision while in sound mind, but now appear to no longer be capable of making fully informed, rational judgments, what then? What are we to do if, having made one decision, they change their mind again, back and forth sometimes even from day to day, or from week to week? These are questions that cry out for answers that we do not always have at the ready.

Could we even say that the very notion of a natural death has been so changed by the advances of modern medicine that we no longer exactly understand what we mean by it? I can offer myself as an example. Nine years ago, after having had a second heart attack, I underwent angioplasty. The doctors miraculously inserted two stents into the arteries of my heart, and I seem to be fine today. If they had not done so, there is every possibility that I might well have died long ago of a heart attack, as my mother did in 1970, at age 50, much before such things as stents were even dreamed of. It could be said she died a natural death. Or did she? But what of the fact that she smoked for most of her life, that she worried constantly about everyone, her children in particular, and that she worked hard in a factory much of her adult life? Didn’t all this contribute to her early demise, and if so, how “natural” is that?

Still bigger, in a sense more global, questions could be asked. What about poverty and its consequences, such as lack of access to medical care, living in overcrowded conditions and susceptibility to infectious diseases, the inability to buy healthy food and have clean water to drink. Even lack of education can affect a person’s lifespan, as we have seen when women tend to have fewer babies the more education they get. Is it natural to die while having an eighth or ninth child?

And while this may seem to have led us relatively far afield from the topic of eldercare, what I am suggesting is that it all contributes to our understanding of the overarching question of what it means to die a natural death. Indeed, in the world of the 21st century, it is more of a conundrum than ever. Do not resuscitate, yes, of course! Few of us would wish to linger on life support, while living essentially in a coma (although even here there are exceptions, as many of us may remember from the Terri Schiavo case).

All too often, the choices are not cut and dry. It is difficult enough for each of us to make choices when it comes to our own lives. Do we opt for chemotherapy, for example, if diagnosed with cancer, given its terrible side effects and the likelihood, or not, of its working? And it is even less clear when needing to make such decisions for someone else. Should we have told the emergency room doctor to do everything possible for Mom or Dad after that stroke? Is their current quality of life enough to have justified that decision, even though a DNR was on record? And add to this the fact that such decisions must often be made on the spot, amid the terrible haze of emotional trauma, when one’s own judgment may not be as clear and dispassionate as we might otherwise wish.

There are few clear paths through the maze of such questions. It may be that the best any of us can wish for in taking care of others is to follow our hearts, with the hope of an informed intellect and, with luck, perhaps even some clarity and wisdom. We all wish that, when the time comes to shuffle off “this mortal coil,” as they used to say in my Catholic youth, we may not linger, and instead exit with a measure of grace and dignity. Yet, no one is assured of what might be called a clean and clear-cut ending. Do we get the death we deserve, or the one that we need? Should it be conscious; or do we hope for a silent slipping away while asleep?

Maybe the best preparation for a natural death is for us to not be so concerned about it at all. In Hindu thought, there exists the notion of God’s “Lila,” the idea that all of creation, including life and death, is part of the divine play, with Spirit being the only true Reality. There is comfort in this view, and perhaps even great wisdom. As Krishna says in the Bhagavad-Gita: “Mourn not for those that live, nor those that die. Nor I, nor thou, nor any one of these ever was not, nor ever will not be, forever and forever more.” And if that is the case, then, in the end, maybe death itself ought not to matter so much.