Losing Self?

What is my “self” now that I am changing so drastically?  This is the question the Buddhists speak of.  Their response?  There is no self.

The way I define my “self” is as an intelligent, independent, vigorous, strong, coordinated man with the ability to relate sensitively to others.  As I’ve aged, some of that self has gradually been disappearing: I’m no longer so strong, vigorous, or coordinated as I once was.  To the extent that I’ve hung on to this old definition of myself, it’s been painful.  I’ve had to work at letting go.

And the Alzheimer’s will greatly change other parts of my self-image.  I won’t be independent, intelligent, or (most probably) as sensitive to others’ needs.  So who am I?  Can I acknowledge—and not just intellectually—that my “self” is not a constant entity?  It has changed repeatedly throughout my life, especially during my depression.  And it will change even more dramatically.  That’s going to be more painful than it has to be if I hang on the self as something that I should cling to and keep trying to be that self.

I’ve been thinking about the deeper impact of my memory loss.  At our leadership team meeting a week or two ago, I was asked how much we’d given of the amount we’d earlier pledged to a needy family within our community.  Since I’m the bookkeeper, it was a reasonable question.  Not only did I not know how much was left, however, but I also couldn’t remember paying them anything or even whether we’d pledged ourselves to pay it in the first place.  Then I checked my records.  Only several months ago, we had a long discussion over several days that I’d initiated.  And I hadn’t remembered any of it.  My memory has always been bad, but not this bad.

That’s embarrassing, of course, but it also represents a loss of some degree of context for daily life.  Full participation in any event or conversation demands knowledge of what’s already happened.  As things disappear into my past, I lose that part of me.

I’ve been a writer for many years.  Since I write about environmental, political. economic and spiritual issues, a large part of my creativity comes from juxtaposing past events in new ways so that new patterns can emerge.  This is the genius of my friend Ray McGovern whose memory seems almost photographic.  He knows and can call upon the past to a degree that most people can’t.  I certainly can’t and it will get worse.  As the disease progresses, obviously, I will have less and less a picture of who I am because I know less and less of my past.

This is a disease of recurrent losses.

I began wondering today whether students from college or medical school classes would at some point be interested in talking with me to understand more of the subjective reality of Alzheimer’s.  I doubt that the time has come since the objective changes are not yet obvious to others.  (For me those subjective changes seem immense, but I wonder at the value of discussing those yet.)  On the other hand, if I wait too long, I won’t have the capacity to speak meaningfully at all.

Framed with Depression

Much of my adult life has been framed and defined by depression.  This mental illness has deeply affected my relationships with Marja and the children, my career(s), my faith, my writing, my sensitivity to the suffering of others, … my entire life.  This has not been as true over the last seventeen years as my medications have given me far more emotional stability.  But several times a year, I’ll have a couple of days of the deeper depression, just to remind me it’s there.  Even after all these good years, it’s lain as a frame in the background, a deep threat and fear. 

And now the rest of my life will be framed by Alzheimer’s disease.  It’s not that it determines my life, but it will increasingly be woven into the background.  It will always be there: a threat, a fear, a question, a cloud hanging over the future.  I will act to a large extent through that frame and so will family, friends, and strangers.

Faith in God

Last night at the fundraiser for the Servant Leadership School, I listened to “The Recovering Angels,” a black, ex-con, a capella quintet.  Their singing was simply spectacular.  It was Bible-gospel, and it was wonderful.  The power of certain kinds of music to move me is becoming ever more obvious.  Is it this illness that is opening me to an emotional life never before available.

All my life I have wanted to have a faith that I could count on.  I stayed away from Christianity for almost twenty years because Christian beliefs made no sense to me.  I equated faith with a central Christian belief that a personal relationship with God was possible.  I’ve never experienced such a God and the idea of such a God doesn’t even make sense to me.  I simply do not experience God as a person.  To the extent that I have had an experience of God, it is beyond all words.  It seems to me that the very nature of God, God’s essence, can’t be described or pinned down without artificially limiting that which cannot be limited.  “God” includes creation, the moral universe, things that I know to be true even though I can’t rationally give reason for my knowledge; God includes mystery.  And God is not limited by any of the above.  They are pale attempts to get at what I actually have faith in.  Since I came back to the church—through the portal of Church of the Saviour—I’ve continued to want the experience of God, the knowledge of God’s presence.  And I’ve never felt it.

One of the members read his spiritual autobiography (a tradition within our church) at our members meeting today.  As he read, I suddenly realized that I do have a faith that I can own, a faith that I’ve always known about but never named as faith in God.  Before today, I’d always considered my friend’s faith so intimate that, in comparison, mine should hardly be considered “faith.”  But this morning I realized his faith, although expressed in very different language, was not so different from mine. 

Let me do my best to explain.  Whatever else we know about God, it is that God is infinite and indescribable.  So the question of what God is is irrelevant.  Rather, the question is who God is has to do with what is the meaning of God in our world.  And while I have no idea of what God is, I know that there are some things that are right and some things that are wrong; the universe is moral.  Some things are absolutely true, regardless of tradition.  I cannot prove the reality of that moral universe, of course. But I have a deep faith in it.

I know that ultimately other people are good.  Given the incredible evil of the past century, that faith in others’ goodness cannot be defended logically.  I believe in the power of love, the necessity to love one another as we love ourselves.  I believe in the necessity and joy of self sacrifice.  I know that I can’t gain my life without losing it.  These are great gifts of faith that are not so much given by God as they are descriptions of God, definitions of God.  So I have had a deep and abiding faith in God all along.  I’ve just never named it as such.  And since the word “God” is freighted with such baggage, it’s not a helpful word for me to use.

The question I have, without prejudice as to the answer, is whether this Alzheimer’s will bring me closer to this fundamental reality, closer to God.

Medicaid

We went this morning to see a lawyer specializing in legal issues of the elderly.  Although it feels almost ridiculously early to be thinking about it, Marja and I have some radical financial decisions to make.  The most important is thinking about long-term nursing-home care.  Most (an estimated 75% according to one source) Alzheimer’s patients end up in nursing homes at tremendous cost.  And that brings up the question of protecting our IRAs and the inheritance we have from Marja’s mom.  Nursing homes for people with Alzheimer’s can cost $80,000 a year.  Medicare does not cover the care, and—as I understand it—Medicaid will pay for nursing home care only after the person (or family) has spent down most of their savings.

And to prevent the wealthy from making legal arrangements give the money away but keep control over it, Medicaid has a five-year “look-back” and would not cover nursing home care if we’d given our money away during that period.  I’m not yet clear how it all works, but I’ve been told that it’s perfectly legal divest ourselves of money prior to the 5-year look back.  Given my stage in the disease, there’s a good chance I won’t need the nursing home care for five years.  If that’s the case, then it makes sense to give most of our money away now.

There is the important question of the ethics of such manipulation to stick the government with the cost when we could pay at least much of it ourselves?  But I feel no ethical qualms.  First of all, Marja and I have spent our adult lives volunteering or working at wages much lower than possible in order to serve the poor.  Since the US, alone among Western industrialized countries, does not protect its residents from destitution, we (and many others, of course) have been doing the job our government should have been doing. 

Furthermore, when Marja and I received her inheritance, we made the decision to give away the vast majority of it to continue to work for justice in our country, which we have been doing.  It would be possible to spend the money immediately by giving it all to charitable organizations, and we are doing some of that.  But we have also felt it important to give directly to support individual poor people.  Someone has said that what the poor need is not more programs but more money.  That’s an oversimplification but we’ve decided to give certain poor people we know, (and we’ve known quite a few after my years as a doctor and Marja’s years as a teacher.) 

The problem is that, if we want to be responsible about giving the money away directly to poor people, it takes a while.  We want to make sure the money is used well, so we only support people we know personally.[1]  And if we don’t want to encourage an unhealthy dependency in those to whom we give, it’s a slow process.  Giving our money directly to poor people (and organizations supporting peace and justice) corrects a small part of the injustice of our country.  The real responsibility for correcting that injustice lies within our society through government, but society has chosen not to do that.  So we feel no qualms about having government pay for whatever nursing home expenses we need as long as we can do it legally and with transparency. 

So we have to think about how best to sequester our money and that’s where the lawyer comes in.  There are lots of other similar decisions that we should be making pretty quickly. The financial consequences of such decisions will be enormous.

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[1] Just to be clear, we are not a foundation or charity and do not accept or pay attention to requests from strangers.

Telling Karin

I went up to Philly on Thursday to talk with my daughter Karin about my Alzheimer’s.  Marja had previously mentioned something to her about the concern over my cognitive state and Karin had then apparently talked with Laurel on the phone so I wasn’t dropping the same bomb on Karin as I had with Laurel and Kai.  We went for a long walk.  Later I talked more briefly with her husband Gabriel.  The conversations were straightforward without much obvious emotional reaction.  Karin and Gabriel have been planning to spend a year in India while Gabriel does his graduate study.  After our talk, Karin wondered about the wisdom of the plan, but I hope (and expect) they will carry through.

On our evening walk Marja wondered if I would be disappointed if it turned out that the diagnosis was wrong.  I think there was some passive-aggressiveness in the question.  She has wanted to hang on to the possibility that this isn’t Alzheimer’s and has been sometimes irritated when I’ve talked as if it were certain.  I can’t blame her.  Perhaps my insistence has been passive aggression, too, a way of keeping all of the uncertainty about this disease at arm’s length.

And, maybe she’s right that I would have difficulty if the diagnosis were wrong.  I have in some real way integrated the diagnosis into my self-image.  And life is in some way easier.  I have felt freedom to let go of all the worry and uncertainty around my writing.  I do feel some excitement about a new phase in my life as I begin to sort through and empty my file cabinet or begin to give away some of my books.  I can step out of the rut and leave what I’m doing without having to worry about finding something else.  Something else has already been chosen for me.  It does make my life easier.

Uncertainty

Marja continues to be less convinced of the diagnosis, so I emailed my doctor detailing all the events over the past month that seemed relevant.  I wanted to know how certain he was.  In reply he said that after hearing these further symptoms and having examined me, his “gut feeling” is that this is Alzheimer’s.  The only way to diagnose it with certainty is through a brain biopsy, which is obviously too dangerous.  There are tests on the spinal fluid that can make the diagnosis more reliable, but he recommends against such an invasive test when it’s not really going to affect treatment.  Another examination, a PET scan of the brain, would, if positive, be “very supportive” bit of evidence that could help me with decisions about whom to tell and when. 

I gave the email to Marja.  Although I’d have been telling her all along that the doctor was pretty sure I’m suffering with Alzheimer’s, she seemed upset by the email.  She still hadn’t been sure of the diagnosis and wanted to wait until other symptoms developed.  But the words “gut feeling” got to her like a punch in the stomach.  It was the visceral nature of the expression, she said. 

Regarding the PET scan, Marja and I have always avoided “unnecessary” medical costs. Since the PET scan is very expensive and wouldn’t change treatment, it seems unnecessary.  Medicare would pay for the costs, but still we’d be taking part in the general overuse of medical resources that is sinking Medicare.  I expect I won’t take the test unless it would be fairly conclusive either way.

The diagnosis seems to have taken over my daily consciousness.  On the one hand, that makes sense: it’s a major event in my life.  On the other hand, I don’t want to stop living because of the diagnosis.  What complicates the picture is that I sense this disease as an opportunity to move into deeper spiritual relationships.  The plan I made last summer with my spiritual director had been to “fast” from analytic thinking, and Alzheimer’s will certainly force me into that.  But accelerating that fast now may give me a peek at the results of such a spiritual practice before I can no longer appreciate them.

I am finding myself much less interested in the presidential or vice-presidential debates, surely a marker of something, perhaps the forced fast from analytic thinking, more likely this apathy that has intermittently materialized.  I watched the first half hour of the first presidential debate.   With all the pettiness and lack of substance, I felt almost physically ill and left the room.  Perhaps that would have happened without the Alzheimer’s, but it certainly hasn’t happened before.  Am I becoming more emotionally sensitive to unpleasant things? 

Too Brutal?

It’s been gnawing at me for a couple of days that I was perhaps too brutal in springing the whole enchilada on Laurel and Kai.  I came in without really preparing them at all.  How could they not be overwhelmed by it?  So I called each of them to apologize.  But each of them said that they would rather have the entire truth rather than have it doled out piecemeal. 

This disease is going to intensify the emotional side of relationships greatly.  I hope we can see that as opportunity rather than curse.  And, perhaps even more important, telling my kids and the leadership team has brought us much closer together.  Marja and I are finding new life here, too.

Telling Others Too Early?

I’ve been gradually deciding to tell the Eighth Day leadership team about my diagnosis.  The issues we work on, it seems to me, are delicate enough that the others need to know.  It’s been in our meetings over the past months that I’ve been very aware of my inability to remember things and it’s sometimes disruptive.

I was surprised by how moving the time with the leadership team was.  There was little outward expression of emotion, but there was an unusual attention, not only to me but also to our little community of four.  They recognized the implications of what I was saying and offered quiet support.  Kent, as usual, was especially warm.  I told them that I didn’t think my capacity to keep the financial books had yet been impaired, but that seemed hardly a concern.  I’m beginning to realize how fortunate I am to have this small faith community around me.

Marja thinks I’m moving too fast in telling people, but so far this level of sharing seems important.  “What if the diagnosis is wrong?” And that was my concern a couple of weeks ago, too, but it seems letting the people around me is too important.  Besides, the diagnosis isn’t wrong.

I will still reserve sharing my diagnosis with a wider circle until things begin to become more obvious to others.  We as a culture are afraid of Alzheimer’s disease.  And it’s difficult for any of us to be around people who are out of it mentally.  As much as people love and respect me, some will have to distance themselves emotionally once they know the diagnosis; others will believe that I am already unable to participate in the life of the community and simply not include me. Since there isn’t much of an upside to making a public announcement, I’ll hold off for a while, although I will tell the fourteen members of Eighth Day’s covenant membership at our next meeting.

Telling Kai

I called my son Kai tonight to tell him.  There was a long silence.  And then he talked about how important I’d been to him.  (Even now, just shortly after we talked I can’t remember his exact words.)  But he was stunned.  There were long silences as each of us struggled for something to say.  He told me that he couldn’t really handle what I was telling him.  

I felt his love and caring.  He told me how much he looked up to me and respected me.  We both felt a sense of immense loss.  He’d assumed that I would always be there for him but suddenly he realized his own mortality.  We have never had a conversation in which both of us expressed much emotion at all and certainly nothing remotely like this.  I realized how much more painful this was going to be for Kai than I had anticipated.  And it touched something very deep within me, too.  I felt my loss powerfully and emotionally, too.  We both cried.  And neither of us ever cries.  

It’s almost like he’d realized for the first time that his life would not go on forever.  He’d been waiting all his life for the perfect job or the perfect woman, and now he was beginning to see that he must choose and couldn’t wait forever.  He’d been protecting himself emotionally from the pain of intimacy.  He’d been unwilling to commit himself to a work because it would mean turning away from other possibilities.  “I’ve wanted to keep my options open.  I didn’t want to move into real adulthood.”  But he thought that learning of my disease would turn him around.  I don’t know what will come of it, but it occurred to me that this could be a turning point for him.

It was, by far, the most intimate encounter we’d ever had.  I am deeply grateful.

I feel overwhelmed by the prospect of the future; every time I contemplate it, my stomach drops out.  But once again, I am realizing the Now is okay.  In fact I feel privileged to have such moments with my children. 

One of my meditation teachers recounts visiting one of his former teachers.  He’d heard that the monk had progressive dementia.  When my teacher asked him how he spent the days, the monk answered, “Oh I just sit here and watch the dementia roll on in.”  I believe that I know something of what he means.  Will I be able stay so deeply in the present?  This is not the tragedy for me that I would have expected.  In fact, there seems the possibility that it will remain an interesting journey.  What’s next to go?  What will it feel like?  What will it be like to be deeply demented?  Will I retain consciousness of my “self” or will that go, too? 

Of course, just to ask those questions requires a level of consciousness that I will lose.  I’m at the very early stage of the illness.  Likely these questions will lose their meaning.  But, at least in the Now, it seems an interesting journey.  As things go in this world, this is not a tragedy of Olympian proportions.

Telling Laurel

I called my oldest daughter Laurel to tell her of the diagnosis.  The original plan had been to break her in easily by talking only about my “concern” about cognitive impairment, but I knew that once we began talking I would not be able to stop with “concern.”  So I briefly told her the history and the diagnosis.  She took it all in clinically like most other people have: questions, expressions of sympathy, etc.  A stiff upper lip.  Then I asked her what she was feeling, and she couldn’t hold back her tears and sadness.  She described me as the “rock of the family” and told me how much she loved me, how much I meant to her.  It was good for me that she expressed the sadness with real tears; it gave me a little entry into feeling the sadness myself.  In fact I haven’t thought much about “sadness” as one of my reactions until she named hers.

But as we talked, I gradually became aware, once again, that this disease is not only about me, not even primarily about me.  The impact will be felt in widening circles. The people whom it will most affect, who will suffer the most are those who love me the most.  They will have to watch the gradual diminishment; they will have to deal with me as I become less and less able to deal with myself.  They will have to make those difficult decisions about “what to do with dad.”  It will be, I suspect, be worse for them.  This is not about me.

In our family we don’t tell each other very often how much we love one another, how much we mean to one another.  I have never wanted to die suddenly and rob us of the chance to say those things.  Now there will be a prolonged period of time, long goodbyes.  I hope we can take advantage of the time.

Marja was in the room while Laurel and I talked and she recognized the depth and sadness of Laurel’s reaction.  So, after the call, she wanted to talk a little about the fact of her own non-emotional reaction so far.  The diagnosis doesn’t seem to bother her as much as surprise and confuse her.  But we just talked personally—for the first time, I think—about what this will mean for us.  Marja also talked about how good our lives have been, how much grace we’ve been given.  My disease doesn’t really count as “tragedy.”All of us get old, we get sick, and we die.  Certainly I hoped that my terminal illness would develop a little later in life, but I will leave no unfinished business.  Already the disease has had its positive sides.  I don’t know what’s coming, of course.  But Marja and I can easily say that, so far, our lives have been charmed; we would trade with no one.

Someone just phoned and asked if I could come to their school and speak to them.  I don’t even remember who called or from which school.  But I turned it down because I wasn’t sure I could do it and because it would be too painful to try.  It’s a marker: a first practical decision to recognize this illness and take it into account.

Natural History

I looked up Alzheimer’s in Wikipedia last night.  I found the following chart.  

Several things seem important.

The first is that the time from diagnosis to death is, on average about nine years.  This chart, however, begins when the score on the Mini-Mental State Examination is twenty-five.  My score is still twenty-seven (although my neurologist seems pretty convinced of the diagnosis, anyway), which means that I’m still not on the chart yet, so the course of my disease is likely to be longer than the average nine years.

The second thing to notice is the steepness of the curve in the middle of the disease.  I’m still in the upper left flat part of the curve, but the graph shows a precipitous drop in functioning after diagnosis.  From formal diagnosis of dementia (a score of twenty-five) to nursing home placement is only two years.  Third, of course is the flatness of the curve after nursing home placement, about four years.  These are all average figures, of course, but still they give some indication of what’s in store.  I’m just wondering how long real consciousness of self, being in touch with reality, lingers.

Marja seems, increasingly, to accept the diagnosis, although she expresses some surprise that it has not highly affected her emotionally.  (I suspect that will change considerably once symptoms become more obvious and she begins to lose “me.”)  I, too, seem to take it with a bit too much equanimity, probably because with the mildness of symptoms, it doesn’t yet feel very real.  It’s true that there are those gut-wrenching moments when I begin to realize the vastness of what’s coming, but those are uncommon … and none in the past ten days or so.