Racism in My Community?

Washington DC

This past Sunday morning I offered a teaching in our small Eighth Day Faith Community.  We’re a lay-led church and take turns preaching or teaching.  I spoke about racism.  It’s not that racism, in the usual sense, runs rampant through the church; quite the opposite.  Most of us have worked for many years, in non-profits that have served impoverished African Americans within Washington’s inner city, and many of those non-profits were founded by members of our community.  But, like all white institutions in the United States, racism permeates our structures while our unconscious prejudices make change difficult.

During the past year or two, a number of us from the community have participated in anti-racism training and have become quite sensitized to the nature of American racism, both personally and in our institutions, including Eighth Day.  About ten percent of our fifty-member worshipping community is African American, but our leadership is completely white (and over fifty) and our style of worship is largely white … except for the singing, which has changed dramatically in the past several years, in part as a response to our increased exposure to African American worship and in part because it’s just so much more lively and fun.

As we have struggled with the issue of racism, there have been conflicts within the community that have become heated and, in my opinion, have been creating some potentially serious divisions.  On the other hand, I believe that many of those divisions are less real than they appear and are mostly due to different understandings of the meaning of some words we use.  It’s not that there aren’t important disagreements among us, but we’ve allowed those disagreements to divide us rather than to help us understand one another and learn from each other.  So my intent in teaching was to try to heal some of the division by sharing my perceptions.

I bring all of this up here in this blog because my role in our community has subtly changed over the past two years, in large part due to my original diagnosis of Alzheimer’s and the lingering cognitive decline.  I now feel much more emotionally and spiritually bonded to the community.  I take real joy in my relationships with others, which was often not the case in my past.  As I wrote several weeks ago, I’ve become more comfortable with myself and more accepting of my gifts.  I’ve been able to “lead from behind,” which is far more comfortable for me than the painful anxiety I experience with the usual kinds of more direct leadership.

One implication is that the nature my leadership in our community has changed.  In becoming more joyful and less intense, I listen more.  In developing strong relationships with people, I know more profoundly what is happening in the community.  Through our anti-racism training and our small “mission group” that has been exploring racism and trying to educate our various communities, I’ve developed special relationships of real trust with the African Americans in our faith community and others I now connect with.  All of this allows me to speak with some authority to both “sides” of the issues and to be trusted by most to seek the common good rather than speak from one perspective or the other.**

I’m sure my role in our community is not only the result of my cognitive decline but also of the many years of my presence and leadership, but, paradoxically, my cognitive decline has strengthened my emotional intelligence and interpersonal connections.  Once again I find myself more grateful to my cognitive changes than disappointed by them.

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* Racism re-defined as (often) unconscious, undesired prejudices plus institutional power may not a familiar concept to most people.  I’ve explained it much more fully in my teaching.
** After the service two different people said I was probably the only person in the community who could have given the teaching.  Be that as it may, it does indicate something of my role in our little fellowship.

Memento

Washington DC

Over ten years ago my son took me to see the movie Memento, which he’d seen several times already and was sure I would enjoy.  It was an intentionally disjointed story that I couldn’t follow completely, so, while it was interesting, I’m not sure I enjoyed it.  One theme of the film, however, was an exploration of memory.** At the beginning of the movie, we see Leonard, the story’s protagonist, killing Teddy, whom he believes murdered his wife.  Leonard, however, has anterograde amnesia, meaning that he can remember nothing except the last few minutes of his past.  He’s compensated for his impairment by keeping a record of his past in notes, photos, and tattoos.  The movie proceeds with the scenes leading up to the killing in reverse order, which puts us, the viewer, in the same mental place as Leonard: As we watch each scene, we, too, know nothing of the past.
 

I turns out that Leonard has completely misunderstood the implications of his notes, photos, and tattoos.  Later in the movie, we learn that the person he eventually kills is actually innocent of the murder.  At the end of the movie, we find out that Leonard’s diabetic wife was not even murdered but died of an accidental insulin overdose.

Memory is the foundation of rational action, of course.  But it’s more.  As we follow Leonard backward in his life, we get some sense of the utter confusion, the disorientation and, in this case, the horror of being able to remember only the most recent past. 

My loss of memory is, of course, in nowhere near the same category as Leonard’s.  Nevertheless, I get glimpses of what it’s like to be him.  For instance:

• I don’t know this person standing in front of me is; but should I?
• Have I already told this story to my son-in-law during his two-day visit or was it someone else I told?
• As I talk, is my line of reasoning based on a fact I’m sure of or on a speculation I’ve seen on the Internet?

At our leadership team meeting after church this week, I had only the foggiest idea of what had happened in the previous meeting.  The other three people had each brought a paper they’d clearly read in advance, so I must have received it, too.  Had I just forgotten to read it and bring it; or did I somehow not obtain it; or had I thrown it away altogether?  Although the others have mostly gotten used to my impairment, I was still embarrassed that I’m not creating more memory aids to make sure things like this don’t happen.  What bothers me most is this low-level disorientation.  Am I throwing things away that I should keep or just forgetting them?  Why don’t I get around to creating the memory aids?  How many of my questions are things I should already know?  Should I even participate in the discussion?

I’m not really confused, just sometimes a little lost.  I’m sure lots of other people experience some of this same disorientation.  Nevertheless, my questions to myself can sometimes make me wonder just who I’ve been.  It’s just unnerving enough to give me images of what it might be like when memory really slips away.

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** Fair disclosure: I don’t remember all of the following details; I looked them up in Wikipedia.  

Less Confusion; Memory Still Impaired

Washington DC

Several Sundays ago, I was walking home from church and thinking about how I would spend the rest of the day.  The afternoon seemed more wide open than I had anticipated.  Suddenly I realized why: I was supposed to be at a church leadership team meeting.  I had looked at my calendar several times during the week so I had known it was coming.  I’d even remembered it during the morning service.  Nevertheless, I’d forgotten.  I walked back quickly and was only a little late. 

Part of our agenda was for each of us to report whether we wanted to stay on the team another year.  Kent asked me whether I thought my cognitive impairment would interfere with my work.  I told him the impairment had been almost stable for a year.  Later, I worried that Kent’s own judgment was that I should leave the team because my memory was so bad.  I asked him.

He agreed it was obvious that I had memory problems, but my awareness of my impairment made it a non-issue for the team.  He encouraged me to stay on. 

Our church meets in a room that is used by others during the week.  Someone has to arrive early, get the chairs out, and set up for the service.  A small group of us takes the fourth Sunday of the month, so this past Sunday was our turn.  I’ve done this every month for several years.  I have it in my calendar as a regular task.  Nevertheless, I forgot completely.  Even when I got to the service and said hello to Maria, the person in charge of our setting up, I didn’t remember.  It was only half way through the service when I wondered why Maria (who ordinarily leads worship on our set-up Sunday) was leading today that I realized I’d forgotten.

I apologized to Maria after the service, of course, and she was as gracious as always.  It was more than graciousness, though.  Like Kent, Maria knows me well.  She’s been with me through the ups and downs of this long struggle.  We both know that we can’t count on my memory.  I do my best, and she knows it.  When I screw up, we both know what’s happening, so there’s easy forgiveness on her side and little embarrassment on my side.  I am grateful.

Over the past year, my memory impairment may have gotten a little worse, but my episodes of confusion are considerably less severe than they were.  One of the big changes is that I’m no longer having those episodes that anyone would recognize as impairment.  Rather, as with the two stories above, people to whom I describe them are more likely to respond that they could happen to anybody.  I’ve written before about the difference.

The slightly worsening memory could even be the influence of aging.  So it seems I’m recovering a little.  I tend to see the gifts of my decline more than the limitations.  It’s an interesting space I inhabit.  Impaired, forgiven, loved and included.  The future is, as it always is, unknowable, but I’m as content as at any time in my life.

Evoking Gifts

Washington DC

The mission group is a key structure of our little church, a place in which we share the most important parts of our inner lives, hold each other accountable for our spiritual practices (tithing, daily quiet time, a yearly silent retreat and others), study together, and engage in a common task that might make the world a better place.  It’s a small group (usually three to six people), a place of more intimate belonging within the larger faith community.  I belong to the interracial Racial Justice and Healing mission group.  We have a vision of ending the racism within our own church and in the nation.  We meet for about three hours per week.

In our faith community we have come to believe that every member has an important role to play.  When a mission group organizes itself or a new member joins, we spend over an hour per person in evoking their individual gifts to help discover that unique role.  By “evoking gifts” we mean discerning each person’s specific characteristics and abilities that may contribute to the group, naming them and affirming them.  This past Saturday was my turn.  We went around the circle, and each person described the gifts they saw in me.  It’s an amazing experience!  How often do we affirm the value of one another?

I was not exactly surprised by what the others said.  After more than a half century of introspection, I know my strengths and weaknesses fairly well, but it’s powerfully affirming to know that others see my gifts, too.

One of the things I’ve known about myself is that I can be a good leader; I do have those gifts, which were again mentioned on Saturday.  I have rarely, however, found joy in active leadership.  Because I usually see and appreciate the many sides of an issue, for instance, it’s painful to try to lead a group to a decision.  I’m quite sensitive to the needs of others (and have a fear of conflict besides), so, as another example, it’s hard to cut someone off who’s talking too much or whose point is only tangential.  Responsible for the meeting, I worry about whether we’re being productive.  And so on.  I don’t enjoy it.

I grew up believing, however, that if a need existed and I had the gifts to meet that need, I had the responsibility to take it on.  Not only did that sense of responsibility lead me into doing too much, but it also led me into positions of active leadership that often made me miserable.  I had the gifts … so I had to take the role.

When I realized two years ago that I was losing some of my cognitive ability, I began turning down opportunities that didn’t give me joy … including active leadership.  It’s one of the reasons I’ve been so much happier since my diagnosis.  As my cognitive impairment seems to have stabilized, I have continued to avoid active leadership, but I’ve felt a nagging guilt about “shirking my responsibility.”

On Saturday, as I allowed myself to acknowledge the gifts others saw in me, however, I began to understand that I could offer leadership from behind as well.  Having insight and discernment without being attached to the outcome is a gift, as are listening deeply, understanding and affirming others, offering an elder’s wisdom, or supporting the group in its process.

The act of listening is not only a prelude to getting something else done but also a gift in itself.  Listening doesn’t require me to march into action.  It’s enough to listen with compassion, love, wisdom and discernment. 

I would call this “leadership from behind,” and, over the last two years, it’s become part of who I am.  Sometimes I hear something said that others don’t seem to hear, and it’s helpful to point it out.  Sometimes there are seemingly contradictory opinions or suggestions, but I may see common themes that, when I articulate them, can bring the group together rather than divide us.  What my mission group was saying, I think, is that these are important gifts to the community.

This, too, is leadership … only this time I enjoy it.

This willingness to draw back and listen without the need to do anything has been one of the paradoxical gifts of my impairment.  I have learned to let go of some of a previously overdeveloped sense of responsibility, and I’m grateful.

Oh, and, by the way, a couple of people mentioned that I could be funny.  I like to think I am but since most people either don’t get my humor or don’t think it’s funny, it was good to be affirmed … by a few people, anyway.

More on Not Being Fed When You Can’t Feed Yourself

Washington DC

As when I wrote about suicide in April of 2013, my last post about not feeding a person with end-stage dementia (or any other terminal illness) drew many comments and emails.  If you’re like me, you don’t read all the comments of all the blogs you visit, but these comments seem important enough to deserve their own post.

I suppose I shouldn’t be surprised, but there is an entire literature about the topic of not feeding at the end of life.  It even has its own acronym, VSED (voluntarily stopping eating and drinking).  A friend emailed me this link to a webpage that offers a TED-talk video of a spouse describing her husband’s decision to refuse sustenance; the same page links to a number of other stories and professional articles about the choice of VSED, especially about its legality and its difference from assisted suicide. 

As the acronym indicates, however, most of that literature seems to be about terminally ill patients who are still quite capable of feeding themselves but voluntarily stop eating.  VSED should be differentiated, it seems to me, from not feeding a person who has lost the capacity to feed himself.  The latter is a choice not to prolong a life that is clearly near its end, while VSED is a decision to shorten one’s life, a decision that anyone could make regardless of medical condition. 

What is most helpful about the literature on VSED is that even this (which ethically could be considered a step closer to suicide) is legal almost everywhere.  Two legal experts on the topic write in the abstract of their law review article:

Specifically, we argue that both contemporaneous [made at the time) and (most) non-contemporaneous decisions for VSED are legally permissible. Individuals may refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy. This right is grounded in the common law of battery, statutes, state constitutions, and even the U.S. Constitution. Moreover, VSED does not, as many believe, constitute abuse, neglect, or assisted suicide. Even ex ante [before the event] decisions for VSED (exercised through an advance directive or a surrogate decision maker) are legal in most United States jurisdictions.

Another commenter countered my implication that nursing homes won’t cooperate with such a decision.  He wrote that most nursing homes and hospices will agree not to feed residents who have previously prepared appropriately and left advance directives (“living wills”), documenting their desire not to be fed when they can no longer feed themselves.  So, anyone contemplating either nursing home or assisted living who is interested in not being fed should inquire about the policies of the institutions being considered.

Several other comments and emails offered stories of the writers’ experience with not feeding.  Especially important is the point made by Lee Ann Gerleman (a nurse with lots of experience with death) that dying from dehydration is not an especially difficult way to die:

People have a real problem sometimes with withholding food or water from their loved one. Actually, dehydration takes away pain. Someone dehydrated, in a coma or sleeping most of the time doesn't feel pain anymore. Its nature's way.

I should emphasize, however, that in the process of dying, any person can experience some pain and discomfort even if the underlying illness is not painful in itself.  This is usually not severe and can be controlled with pain medications if necessary, but it is a result of the dying process not the withholding of food and water.

Another writer reminded me that even without any water, it can take much longer to die than one would think, in her mother’s case, six days.  This was also our experience at Joseph's House when residents were sometimes unable even to be fed during their last days.

A very important comment came from someone who pointed out that the meaning of “no longer able to feed onself” can be a little unclear:

[I]n our nursing home setting, when someone is having difficulty chewing or swallowing or pushes away food, the first step is usually moving to a food texture which is easier to manage, such as minced food, or adding extra gravy. A further step would be to pureed food. In many cases, residents still feed themselves these meals. Another thing we see is that when people stop feeding themselves [but are then] given a fork & knife or spoon, they may still feed themselves very well or when provided with finger foods such as sandwiches or cookies or a banana. And they may drink very well when the cup is placed into their hands but not drink at all if they have to reach for the cup on their own.

The obvious implication is that in prior discussions with family and writing the advance directive, you need to be clear about what you intend by “no longer able to feed oneself.”

I’m grateful to all of you who made comments or wrote emails.  I encourage such comments because they are often very helpful in clarifying and adding to what I have written.

Would It Be Suicide?

Washington DC

On seeing an Alzheimer’s patient (or any other person) lying comatose and terminally ill in a nursing home bed, almost everyone thinks, “I don’t want to die like that!” (See my last post).  That raises the question of suicide.    

When I believed I had Alzheimer’s, I didn’t seriously entertain the possibility of killing myself for a number of practical reasons.  The most important was that people with dementia are still capable of meaningful relationship well into the course of their disease, and many readers (Lee Ann Gerleman, among others) insist that the often-difficult season of caring for a person who may not even recognize family offers many joyous times, too.  The only reason I could imagine for checking out early was to prevent the burden of caregiving on someone I love.  No matter how deep our relationship, I didn’t want to burden my wife Marja with caring for me when I became completely incapable of relationship or unable to tend to my own physical needs. 

I thought often about the conflict between my unwillingness to foist upon Marja my care in the last stages of my illness and my choice not to suicide.  At one point, however, a woman wrote me that her husband (who had Alzheimer’s) decided upon something “in between” suicide and the burden of care in the last stage of the disease.  They agreed that when he reached the point where he could no longer feed himself, no one else would feed him, either.  When the time came and she withheld food and water, her husband died within two weeks. 

At Joseph’s House, we’ve had analogous experiences of people unable to eat or drink as they neared the end of their lives.  As we do for all other residents, we accompanied them around-the-clock, and death from lack of food or water seemed to us no more painful or difficult than the deaths of the many others we accompany.

I’ve asked myself whether deciding against food or water when I am terminally ill is a form of suicide.  I don’t think it is.  It’s rather more like deciding against what the medical world calls “extraordinary measures,” for instance, choosing not to put a terminally ill patient on a respirator, an acceptable and common medical practice.  I can see little moral or emotional difference between, on the one hand, not feeding a person and, on the other, choosing not to put in a feeding tube or treat an infection in the last stages of disease. 

Arranging not to be fed seemed like a good middle ground.  I talked about it extensively with Marja, my children and some others close to me, and we agreed upon that course.  We realized that if I were in a nursing home, however, such a decision would probably not be allowed, so my family would have to take me out to die at home … a better choice, anyway.  I made my decision formal by filling out the appropriate legal documents.  Legally, then, this would be my decision alone, and no one else would have to risk guilt or the disapproval of others by making such a “heartless” decision for a dying person.  I’m keeping that living will intact in case my impairment begins progressing again or I’m in the same situation from another cause of death.

I would offer several cautions from my experience as a physician.  First, talk the decision through with everyone who is close to you or might be able to cause trouble when the decision needs to be made.  At Joseph’s House we’ve had relatives come out of the woodwork at the last minute to insist upon a different course of action than that decided by the patient and close family, even threatening legal action when we, for instance, didn’t hospitalize a patient for whom nothing medically could be done.  Second, get it written down; everyone should have a written living will (or advanced health care directive), anyway, but especially in this situation.  This does not need to be prepared by a lawyer or any third party (see Five Wishes).  Third, find a hospice provider or physician in your area who will agree to provide support.  Finally, review the decision with family regularly, perhaps once a year, until you are no longer capable of doing so.

There was no debate in our family; it seemed right to everyone.  I’m sure Marja would never have protested the burden of caring for me, but it was important for me to protect her from those meaningless months or years when the demands of care were enormous and I was no longer aware of much of anything.

“A Fate Worse Than Death”?

Washington DC

In a recent column in the NY Times, physician-author Danielle Ofri described an incident in which she and another doctor were examining a patient with Alzheimer’s.  “A fate worse than death,” the other doctor murmured.  Dr Ofri, too, felt uncomfortable.

There was something almost shameful in bearing witness to a fellow human being’s profound indignities.

The patient had been a prestigious artist and intellectual and to see him with only a sliver of his former intellectual capacities was, Dr Ofri wrote, “beyond heartrending.” 

It’s also heartrending, however, to be in the presence of a person dying painfully from cancer or of a person with a severe stroke that leaves her immobilized.  These diseases, too, are accompanied by indignities, for instance, having to be wiped clear after defecating.  These other diseases, however, do not create shame.  Alzheimer’s does.  Why?

Dr Ofri writes,

I was embarrassed for him, for how embarrassed he would likely be, if his former self could see his current self. That his current self lacked the capacity to be aware of his state offered little comfort. 

Yes, we are embarrassed because his former self would have been embarrassed.  That doesn’t get us anywhere, though; it still doesn’t answer the question of why he would feel embarrassed.

I’d like to suggest that we feel shame because we are looking at our future self as if we had our full mental faculties and were still behaving that same way. 

After I became aware of my cognitive decline (and believed for a year that I had Alzheimer’s), I did not feel embarrassed for myself even though I had the capacity to be aware of my mistakes.  I was fully cognizant of my memory deficits and the problems it caused, and I was aware of my intermittent confusion.  I had “lost” the $24,000 through no fault of my own but because my cognition was impaired.  I might have been embarrassed if I hadn’t told everyone I knew about my cognitive decline, but we all knew what was going on, so there was nothing to be embarrassed about.    

True, my decline has been minimal compared to what others suffer.  Nevertheless, I do forget names and faces I should remember; I miss appointments, even those I’ve written on my calendar; I have to ask others to take over more complicated intellectual tasks I can’t manage any more.  I’m rarely embarrassed, however, and certainly not ashamed.  It’s not that I lack the capacity to feel shame; it’s that we all know that there’s a good physical reason I’m incapacitated.

I’m not alone.  I’ve communicated with other Alzheimer’s patient (mostly in somewhat more advanced state than I) who also report that they feel little embarrassment or shame.  Of the hundreds of people who have written me, no one has even mentioned embarrassment or shame on the part of the person with Alzheimer’s (and I look forward to some responses to this post).  Why don’t we experience embarrassment?

I can only speak for myself, of course, but it seems to me quite possible that, with increasing cognitive impairment, I will still be unembarrassed.  Also, as Dr Ofri mentions, as the disease progresses, I will become incapable of feeling embarrassed.  So it’s entirely possible that at no point in the course of this disease will I feel embarrassment. 

Perhaps Alzheimer’s is not a fate worse than death.  What would happen if we began to realize that when we get embarrassed or feel shame in the presence of a person with dementia we are really imagining a future we cannot actually imagine?  Perhaps we could stop scaring one another and allow ourselves to relate more naturally to another person’s cognitive impairment.

Surprise!

Washington DC

A week ago Friday, over seventy people crowded into a friend's house for my wife Marja’s surprise seventieth birthday party.  She actually had no idea it was coming and was flabbergasted when we walked in, especially when she saw her brother who had traveled from his home ninety miles north of Toronto.  Two of my stepsisters and a brother-in-law from Cleveland also showed up.  It was lovely, even for me who seldom enjoys parties.

The number of people was staggering.  We’re not part of large communities: our small church of perhaps fifty people, our families, and a few of Marja’s former students.  But Marja means much to so many people, and a large percentage came.  Ten days later both of us are still basking in the joy of that gathering.  Marja still mentions it at least daily

In the two days before the party, we also surprised Marja with the arrivals of our two children who weren’t already in the area.  Laurel flew in from California and Kai from Seattle.  Our younger daughter Karin had returned earlier in the week from her fifteen-month stay in Delhi, and we were still elated by that.  It was delightful to have our little nuclear family together again for a few days.

The most beautiful aspect of the party for me was the several weeks before as I combed through our photo albums and loose stacks of pictures to find photos of Marja from different phases of her life.  Especially wonderful for me were the pictures from her adolescence and early adulthood.  I’d forgotten how beautiful she was.  A gentle yet powerful spirit emanates from those pictures.  I kept thinking: How could a woman so beautiful have been interested in me?  I don’t remember realizing at that time the depth of her spirit, so the pictures were my own surprise party.  I scanned the pictures into digital images and sent the files to Laurel.  She created a beautiful slide show that looped continuously throughout the party.  Every time I looked, there was a cluster of people gathered around the monitor.

I suppose we become used to the beauty that surrounds us and it ceases to be startling or, too frequently, even apparent to us.  Marja and I have been together almost forty-five years, and so often I forget the beauty between us.  Every once in a while, though, it will suddenly break through.  Each time it comes as a wonderful surprise, although never so powerfully as when I was selecting those pictures for the show.

My ongoing wonder—at both the numbers that showed up and at Marja and my relationship—reminded me again how much my cognitive decline has opened me emotionally.  I doubt that this depth of joy could have broken through to me before.  Oh, I’d been intermittently aware of and grateful for the gifts I’ve been given.  Intellectually I would have known the importance of the party and recognized its joy.  I would not, however, have experienced it so intensely.  The depth of the joy has been a miracle.