2013 Posts
Blog Posts from February 2013
Saturday, February 2, 2013
Washington DC
No Shame, No Humiliation
I visited with Gordon Cosby, our 95 year-old pastor. He is dying and seems to be looking forward to it. We were talking about the deep similarities between what he was learning from dying and I from my Alzheimer’s. My memory being what it is, I can’t remember his exact words, but he said something like: There is no shame, no humiliation. I recognized the words as something the apostle Paul wrote, referring to himself, calling himself the lowest of human beings yet finding strength in his weakness. I’d sort of believed it before, but I always tacked on at least an implicit “to those who love the Lord,” mostly to qualify the concept so it wouldn’t apply to me. But Gordon didn’t tack on anything, just: There is no shame, no humiliation.
I believe it now. With this disease much of my fear of humiliating myself has shriveled. When I do something outrageous (like add 24,000 non-existent dollars to my church budget projections), I apologize and refer in some way to my deteriorating mind. Most people seem to accept it and the conversation moves forward. They understand that I’m doing the best I can and that these kinds of things are just going to happen in Alzheimer’s. I’m still embarrassed, I suppose, but I no longer feel humiliated (as I would if I hadn’t made my diagnosis public), but this illness has given me the great gift of acceptance. I am who I am; these things happen and they’re going to get worse. I feel no shame, no humiliation.
But wouldn’t it have been just as true thirty years ago in the prime of my life? As a young physician, I aborted a live, wanted fetus that I had mistakenly thought was dead in utero. (I wrote about it in my book, Healing the Wounds). There was indeed need to ask forgiveness from the parents; there was need to learn everything I could from the mistake and why it happened; there was need for self-examination into my own weaknesses to see how they contributed; and there was need to acknowledge my error publicly and not hide behind doctor-privilege. All those I did. But there was no need to for shame or humiliation, no need to see myself as bad, no need to divorce myself from the community.
Mistakes are part of being human; they’re part of being a doctor; and they’re part of being me.
It used to irritate me when old people, perhaps well into their retirement, would do what I’m doing now and announce their latest philosophical or spiritual discovery. I should have taken more time to smell the roses. More time for relationships. I shouldn’t have been so anxious or concerned about what other people thought of me. The implication always was: And so should you. It’s easy for you to talk, I would complain to myself. I’ve got a wife, kids, a medical practice. Smell the roses, indeed.
Yes, it is easy for me as a guy with Alzheimer’s to write about this. That’s the point. The importance of letting go of shame and humiliation isn’t a great philosophical discovery; Buddha was saying it 2500 years ago, as was Jesus. Alcoholics Anonymous has also discovered that shame and humiliation don’t help in getting sober; it’s the love and forgiveness of the AA community that makes sobriety possible. I’m not the first one to think about it.
But just because it’s easy for me to say doesn’t mean it’s not true. Thirty years ago there were so many other pressures on me, so many others expectations. How could I not feel shame after doing something like that? But the reality, that there is no need for humiliation, was the same. It wouldn’t have been easy; probably it would have been impossible, given who I was then. Perhaps I might have been able to recognize the truth intellectually, but actually integrating it into it in my life would have been an extraordinary challenge. So I’m not saying it’s easy. I’m simply saying that shame and humiliation are a waste of time and soul, and we should do what we can to let them go, whatever letting go may mean in our circumstances.
I’ve been happier these last 4½ months than at almost any time in my life. I’ve been given a great gift of letting go of much that made me unhappy.
February 5, 2013
Washington DC
Losing Confidence (2)
A young couple from our church visited yesterday for an extended conversation. I enjoyed talking with them. At one point I mentioned that when Marja was away, I sometimes watched movies that she didn’t care for. “So what doesn’t Marja like,” they asked. “You know,” I said,” action movies, sex, violence … no, that’s wrong; she likes sex, but not the violence.” It was my little attempt at humor. In the conversation it was inconsequential; I’m not sure my friends even noticed it
After they left, however, I wondered whether I had been too flippant. Did I reveal a beginning lack of judgment, a common symptom in Alzheimer’s?
I’ve always been pretty loose in my conversation, often saying things that others might not say, that are personally revealing, or that are just non-sequiturs meant to be funny. Sometimes they’re inappropriate, but usually they’re fine, showing a lighter part of myself that doesn’t get much expression, otherwise. It’s a part of my personality that I like, actually, and that others (well, some others) appreciate. But I skate a thin line between appropriate and inappropriate, between intimate and offensive. While I occasionally skate over it, I can usually trust myself to stay in bounds. I have confidence that my intuitive judgment is pretty good, and I don’t need to be particularly careful or to censor.
But if I’m beginning to lose my judgment—even just a little bit—then I will begin censoring, being much less spontaneous in conversation. That would be a great loss, an important piece of myself crumbling away.
Several times in these posts I’ve mused about what happens to the “self” as such pieces fall away. Does my sense of self change as my capacities decline? I’m still very early into the disease, but despite my recognition that some of my cognitive ability has declined, I feel no different as a person. Some of my conversations with others who have loved ones with Alzheimer’s indicate that the ability to relate person-to-person is maintained until late in the disease. So I’m wondering if perhaps the sense of self remains constant, but that the person with Alzheimer’s isn’t always conscious of it. Perhaps it’s simply forgotten for increasingly long and increasingly frequent intervals. And finally it’s simply gone … no, not really gone but forgotten.
My former therapist told of her husband who was late in his Alzheimer’s, actually shortly before his death. He had been quite out of it for years. But suddenly one morning “he” was back, and they had a short but intimate conversation together. And then, just as quickly, “he” was gone. So during that period of return, did he then remember himself only to forget a while later? This is all my speculation, of course, but that’s what much of my mental life is these days, wondering what impact this disease will have on my very experience of “self.”
February 6, 2013
Washington DC
Call
In our faith community, we often speak of “call,” what others might name “vocation:” the kind of life I am called to now. A few of the marks of call are: first – the task seems impossible; second – one has the personal gifts to do the work of the call; and third – the work involves both the pain of the world and one’s deepest joy. It seems a perfect description of my desire to change the way I, my community, and the world think about people with Alzheimer’s disease.
As for the first mark of call, the task of changing the way the world thinks is obviously impossible and I’m not even sure about being able to change me or my own community. As for the second mark, my two memoirs on doctoring, Healing the Wounds and Not All of Us Are Saints suggest that I have the gift of exploring my own inner world and making it accessible to others. And finally, this vocation explores the pain of the world—not only as my family, community and I will experience it but also as the circles of people that form around any person with Alzheimer’s experience that pain. To my delight, writing these blog posts over the months has been a great joy. Sometimes, it seems that, here in the present, Pollyannaish as it sounds, the disease itself is a great joy.
So creating this blog or my website and any speaking or teaching that I do are my call at this point in my life. I am to be the voice of this illness in the present moment. To communicate it to the world. To stay in touch with my reality and share it with others. To invite people into less fear and embarrassment around questions of this illness. I’m finding a joy and contentment in this process that has been absent the last few years, when I’ve had to struggle to do the hard work of writing. It flows fluidly and easily. For now, as I have said repeatedly over past posts (“Shame and Humiliation,” “Joseph’s House and It’s Interns,” “Telling My Sister Laurie,” and others), I am finding great joy in my life, something that had not been true much before this diagnosis.
I'm not Pollyanna; I know there will be much else to this call and to the disease, some of it ugly. Not everything is sweetness and light, even now. I can hardly trust myself to put anything down—backpack, gloves, hat, slippers—even for a moment. If I take off my gloves to tie my shoes and turn to put the gloves back on, they’re not there. I have to look around. It’s not that I put them in weird places (yet) or that they disappear forever. It’s that I have to make a conscious effort to remember where I’m putting something; the remembering doesn’t happen automatically. No, it’s not all sweetness and light.
So there’s joy in the presence of pain; for now that’s enough.
Sunday, February 10, 2013
Washington DC
Denial
When I was working actively as a physician, my patients rarely came to me with symptoms of early cognitive impairment. In fact, I can’t think now of a single one. Family members did occasionally bring in the patient when the dementia was more advanced. I remember Joseph, for instance, who brought his wife and told me that there was “something wrong with mama.” Anyone had only to take a brief look at mama to know that she was pretty much out of it. Perhaps, I thought at the time, mama’s day-to-day changes had been so imperceptible that Joseph just hadn’t noticed. Perhaps, but I now doubt it. At her stage in the illness, I can’t imagine a husband not noticing.
I was aware of my symptoms several years before other people would have noticed. True, I didn’t have it checked out with a neurologist for a while, either, but I noticed the changes right away and asked Marja, my daughters, and a couple of other friends about it. If they had mentioned anything, I would certainly have followed up with a doctor. Are other people not aware of their cognitive changes? If not, why not? Marja and one or two others have suggested that my previously high IQ made the losses apparent to me before others could become aware. But that seems unlikely. I see no reason why memory loss and confusion should be more noticeable to people with high IQs than to others.
None of us wants to hear bad news, of course. People with cancer symptoms put off seeing doctors, too. But the reluctance to find out more about cognitive decline seems so much stronger. We humans have amazing denial mechanisms, of course, but why are they almost universally so powerful in dementia. It’s shame and fear, I suspect: shame so strong that one can’t bear to entertain the possibility and fear of isolation so overwhelming that telling others—even intimates—terrifies us.
Whatever the cause, the failure to share deepens the shame, intensifies the loss, refuses the love and comfort of human accompaniment, and smothers the chances to express the many levels of goodbyes so necessary in this disease. It only exacerbates the isolation.
There is a real price to silence. If this writing brings only one person out of the closet, it will have been well worth it.
Tuesday, February 12, 2013
Washington DC
Courage?
Many of the responses to this blog and to my email to friends and acquaintances have referred to my “courage” in making it all public. I certainly don’t mind my friends thinking me courageous, but my making things public is not an act of courage. To call me courageous because I acknowledge my actual physical and mental condition implies that there would be reason to fear other people’s knowing.
Why is it courageous to invite my immediate and wider community to share in my pain, to give them the opportunity to support and comfort me and my wife Marja, to lessen their fear over and embarrassment over the disease, to prepare themselves for a similar pain? Really, what’s to fear? Mockery? Rejection? Abandonment? What?
Certainly people may reject me (although that’s not at all my experience so far), but wouldn’t those people abandon me later, anyway, when my symptoms became more obvious and there was more to fear or be embarrassed about? And wouldn’t they be even more likely to do so if they didn’t know that I knew I was impaired? Inviting people into my reality, it seems to me, makes it considerably lesslikely that they will ultimately abandon me. And inviting them in now when I’m still pretty competent at least gives them and me a chance to learn from each other and become more comfortable with each other before my condition deteriorates.
Refusing the label of courageous is not false modesty on my part. In fact the emails and comments I’ve been getting since letting people know have been full of love, admiration and respect, making my disease considerably easier to live with. And, to tell the truth, I’m not above reveling in all the good things people have said about me in their emails. It’s been a little like being able to listen in on your own memorial service.
Before the diagnosis, my embarrassment over praise and fear of appearing conceited would have made it difficult to accept their compliments. Now I say to myself: Yes, my life has been good; I’ve accomplished important things; I’ve made the world a better place. Making the diagnosis public is much less courageous than it is confidence in what will give me the greatest joy and satisfaction.
Thursday, February 14, 2013
Washington DC
Letting Go
I have to give up the bookkeeping that I’ve been doing for our church community for the past ten years.
In addition to Marja’s and my personal bookkeeping, I also keep the books for our little housing co-op and for the church. Reconciling our accounts the other night, I discovered I’d deposited one set of checks meant for our personal account into the co-op account. It was not a big deal, and I could fix it easily. But, as I wrote earlier, in December I also made a huge mistake in my church bookkeeping. So this mix-up between our personal account and the co-op account is further indication that my capacities are declining. The actual day-to-day details of the bookkeeping are not yet too difficult, but some of the other tasks that only the bookkeeper can do—spreadsheets, for instance—have felt too confusing. A week or so ago, as I was trying to figure out how much money the church had in its regular account at the beginning of the year, I got confused between the regular account and the money market account. That kind of thing is going to lead to more serious mistakes. So I asked Kate Lasso several weeks ago if she would take over the books, told the church leadership team a week ago, and told the entire church this past Sunday. I’ve begun to make arrangements to get everything transferred.
It seems unexpectedly easy to give up the task. In fact, I keep surprising myself with how easy it’s been emotionally to give up different kinds of responsibility. Part of it may be the apathy that is part of the disease, but mostly, I think, I’ve received an unexpected gift of being able to let go. Even as I think about future kinds of control that I’ll lose (having to let Marja make our important decisions, for instance), it doesn’t seem to bother me as I would expect it to. Of course, it may be completely different when the actual time comes to give those things up, but, at least for now, this is the season of my life to give things up, to live in a very different space that allows more to happen rather than requires me to make it happen. I’m happy not to be in charge of so much.
The ease of it amazes me, actually.
Sunday, February 17, 2013
Washington DC
Research
Last week, Marja and I went to our first interview at the Georgetown Hospital Clinical Research Center. I want to enter a study of an experimental drug that is being tested to see if it actually alters the physical degeneration of Alzheimer disease.
Virtually everything medical science knows about the disease is uncertain, including the diagnosis, which can’t be made with certainty until autopsy of the brain. But (for the more medically inclined) it may help for me to explain the most commonly accepted hypotheses about how Alzheimer’s develops and what this particular research study is about.
A definitive diagnosis of Alzheimer’s can only be made after death by autopsy evidence of neuron destruction and shrinkage of parts of the brain. Microscopic examination of the neurons and the spaces between neurons (synapses) reveals “neuro-fibrillary tangles,” which are threads of intracellular proteins that have been snarled by another protein called tau. These tangles impair the communication between neurons that is essential for all brain functions. There is also an “amyloid plaque” that is involved—sort of a protein goop that builds up around the synapses—that also interferes with communication among nerve cells. Presumably the neuro-fibrillary tangles and the amyloid build up over many years causing progressive impairment of brain function.
(For the non-medically inclined, the cause of Alzheimer disease seems to be the destruction of neurons by two proteins [amyloid and tau], both manufactured by the body itself. Only an autopsy of the brain can definitively identify this kind of brain destruction.)
In practice, however, the diagnosis is usually made first by testing for impairment of memory and other cognitive abilities and then excluding the possibility of other causes of dementia, such as strokes, Parkinson’s disease, or vitamin B deficiency. Such a diagnosis by exclusion, however, tends to seem vague and uncertain to non-medical people, which can cause stress, not only for the patient but also for friends and family.
Recently there have been new developments to help in diagnosis. Positive Emission Tomography (PET), a brain scan somewhat similar to an MRI, can show the build-up of amyloid plaque in the brain. A spinal tap (lumbar puncture) can show increased levels of the tau protein in the spinal fluid. Neither test is definitive but, when added to abnormal cognitive tests, each gives objective evidence to buttress the diagnosis.
The drug being tested in this study has the potential to actually change the underlying pathology of the disease. The only drug currently approved for treatment of Alzheimer’s, Aricept (donepezil HCl), and the others waiting in the pipeline for approval may lessen the symptoms of the disease, at least for a while, but they don’t slow down the build-up of amyloid or neuro-fibrillary tangles, so the brain continues to deteriorate even though symptoms may temporarily improve. According to the Federal Drug Administration, Aricept isn’t even terribly effective at ameliorating symptoms; advertisements for its efficacy exaggerate what’s been found in controlled studies. Because my symptoms are not yet disruptive, I haven’t been taking it. But both the study nurse and my neurologist have recommended it, so I’ll begin now before the research study gets underway.
The research I’m trying to sign up for, however, will study whether an experimental drug (that doesn’t even have a name yet) could halt or even reverse the build-up of amyloid in the brain. The research is very early; it’s only in “Phase 2,” which it’s primarily being studied for safety and tolerance; a later Phase 3 would test for effectiveness. It would be an exciting breakthrough.
For me, what was most interesting about going in for the study was all the information and attention we received. The study protocol require Marja to accompany me throughout, so we biked over to Georgetown, and a nurse spent over an hour with us, exhaustively explaining the study, answering our questions, taking blood samples, and repeating a cognitive test. During our interview Marja had mentioned that she, too, was concerned about cognitive impairment, so she took the same test. But both of us received perfect scores, which, the nurse said, was not unusual early in the disease with this basic screening test. I found it all fascinating.
But the best thing about the research is that I will be studied quite intensively and followed for two years. It means that I will get not only the PET scan (very expensive and not covered by Medicare) but also the spinal tap. So, assuming those tests are positive, I’ll have as definite a diagnosis of Alzheimer’s as is possible before autopsy.
That’s important to me because so far, honesty has compelled me to inform people that I have mild, progressive cognitive impairment and that the diagnosis of Alzheimer disease is not certain. That’s technically true, but—since neither my neurologist, the nurse at Georgetown nor I doubt it’s Alzheimer’s—the tests will allow me to feel more comfortable telling people I have Alzheimer disease and avoid the equivocation that so often leads to annoying conversations about whether I really have the disease. I get sick of it.
I suppose in some small corner of my mind, I have some doubts, too. I’m mostly participating in this study because I believe that, ultimately, medical studies are the only way to discover an effective treatment for Alzheimer’s. But I’m also happy I’ll be getting this PET scan and the spinal tap (three times each no less), which will finally nail the diagnosis down.
February 20, 2013
Washington DC
An “Excuse” for Fulfillment
While in Napa CA for the family Christmas, I decided to return in March. Considering my diagnosis and prognosis, I want to take more time with my family while I can still travel alone and am still fun to be with. But as the March date gets closer, the three-week period I planned on is feeling short. For ecological reasons, Marja and I always take Amtrak, which is seven days out and back. I want to spend a few days with my son in Seattle. I recently added a stop-off in Minneapolis to visit my sister. So the original purpose of the trip—time with my daughter and grandchildren in Napa—is getting short shrift.
In the past I’ve generally confined trips out west to three weeks. Even taking that length trip two or three times a year, I’ve felt a guilty embarrassment that I was taking too much “vacation.” I had a vague sense of being irresponsible to my relationship with my Eighth Day faith community, which is important to me. Up until now, I’ve been trying to graft the new priorities onto the old ones. But there are only so many hours in a day, so many weeks in a year, so much energy in my spirit. So I’ve been squeezing more and more into an already crowded space, not only creating more tension than necessary but also feeling guilty and scrimping on what has most meaning for me. But now, as my life changes with Alzheimer’s, I’m giving myself permission to rework my responsibilities. So I’ve added a week to the trip and will be gone almost a month.
My life is not the same now: different relationships and activities will be important. I’ll have to let some responsibilities go to make space for my changing priorities. In this case, it means less time with Eighth Day and permission to take however much time I need to be with family.
This change is significant. My diagnosis gives me an “excuse” to live a more fulfilling life: closer relationships, time in nature, less responsibility and more delight. I suppose I might have made these life-giving decisions before my diagnosis, but I didn’t, and regrets are a waste of energy. Here in the present, I feel much freer to live with greater fulfillment.
(For some of you, I’m suspect, my struggle with responsibility will seem masochistic or obsessive. Let me only tell you it’s very real; I was reared as Dr Responsible, and I’ve never let it go. Some of you may also wonder how month-long trips away from my wife Marja fit into our relationship. Well, throughout our marriage, we’ve always given each other space to do what’s on our hearts. She needs to stay in Washington because it’s important to continue volunteering at the school she started over twenty-five years ago. I need to go to Napa because my time to be with children and grandchildren is limited. Besides, we’re both independent and being away from each other isn’t that difficult for either of us. Marja can bless my absences.)
February 25, 2013
Washington DC
Out of the Frying Pan into the Freezer
A year ago I would have been terrified of this Alzheimer disease. All I could have imagined was suffering and pain for me and those who love me. But is it actually painful? Am I really suffering as the lights go out?
A number of years ago, I saw the movie Away From Her about an older couple in which the wife (Julie Christie) was suffering from Alzheimer disease. (Just to be clear, I remembered neither the name of the movie nor Julie Christie but googled “alzheimer, movie.”) In the opening scene Christie is putting her frying pan away … into the freezer, while her husband observes with an expression of pained recognition. Yesterday, I poured myself a cup of soymilk intending to heat it up in the microwave. I wasn’t until I opened the microwave door to put it in, that I realized that it was the carton in my hand and not the cup. I suppose I could excuse myself by invoking absentmindedness, but I’m not an absentminded person. Or, perhaps I should say that I wasn’t an absentminded person and now I am.
Perhaps that’s emblematic of this disease in its early phases. A friend tells me she does this all the time, but I didn’t.
Doing my taxes over the weekend I had to use a complicated formula that I’d created a number of years ago. Luckily, the formula worked, but when I looked at how it worked, I couldn’t even follow my own thinking. Perhaps others can’t create such spreadsheet formulas, but I could.
Perhaps other people couldn’t keep the books for their church. But I could.
Few other people can tell I have Alzheimer’s, but I can.
So, is the present itself emotionally painful? Actually, putting the soy milk into the microwave was funnier than it was painful. Am I suffering as the lights go out? Actually, very few others can tell that my lights are even going out. And even for me, the dimmer switch hasn’t been moved very far.
No, I’m not suffering now.
I don’t think I’m trying to Pollyanna my way into denial by pretending everything’s okay. It’s not okay. I have Alzheimer disease and I know some of what’s coming. After the frying pan in the freezer comes getting lost, which leads to wandering off who-knows-where, which means having to have someone monitor me, which can lead to paranoia and anger, which pushes me eventually into an institution in which I die.
The soymilk in the microwave could have pushed me into imagining the entire painful sequence. But, this time at least, I was given the grace not to go there but to see the humor. The future will almost certainly be painful; the present doesn’t have to be.
Tuesday, February 26, 2013
Washington DC
Grace and Joy
I spoke to the staff at Joseph’s House this morning about my Alzheimer disease. Joseph’s House is the home and hospice for homeless men and women with AIDS and other terminal diseases that I founded in 1990. I’m still somewhat involved, teaching interns about injustice toward the poor and helping with some fundraising. For this morning I was invited into a conversation with the staff and volunteers about Alzheimer’s, especially the spiritual changes since my diagnosis.
When I walked into the house, I didn’t recognize one of the people there. I asked her if we’d met before. She didn’t think so. I offered my hand and said my name, but she didn’t take my hand or give me her name. Thinking she hadn’t heard me, I asked her name a second time but she seemed uncertain what to do. She stared at me blankly. Someone else broke my confusion and introduced her to me as Joy and I guessed that she was a new patient with, perhaps, AIDS dementia.
It was a wonderful morning! Given my position as founder, my years on the staff, and my regular teaching there, I knew almost everyone there, so it was mostly an opportunity to sit with them in the reality of this disease and share with them my journey of the last six months. Many of them had received my email several weeks ago so they were familiar with my story. I recounted my history briefly with the disease and talked about the many freedoms it’s given me: letting go, living in the present, the love and support of my community, freedom from shame and humiliation, and others.
During the meeting, Joy was sitting next to another woman I didn’t know, Grace, who’d apparently been volunteering at the house. As I was talking about how the diagnosis had deepened the relationship between my wife Marja and me, the kind of future I foresaw for us, and the pain it would cause Marja, Joy’s eyes filled with tears. Grace told us that they were partners and that Joy had had Alzheimer’s for seven years. A while later, Grace was sharing that Joy had started some time ago dancing and singing, things she never used to do before. Joy gave a little embarrassed laugh, looked down demurely, and said something like, “Oh, don’t start on that.” But she seemed delighted that we knew about that part of her, too. I felt a little piece of the “real” Joy peeked through the clouds of her dementia.
Grace commented upon how much Marja and I would have to learn as we go through the stages that they she and Joy have already traversed. Their comfort with one another—even as Grace talked about Joy’s disease—showed me that they had talked candidly about Joy’s dementia and its impact on their relationship
Grace knew about the pain and the celebration. Her life, too, had been enriched during these seven years of sharing Joy’s journey. They had discovered, as Grace said, a “silver linings” of this disease, which is no less true for being a platitude. It was a special moment in the morning.
I recognized with some embarrassment, though, that as I’d come in and tried unsuccessfully to introduce myself to Joy, I had responded in much the same way so many people do to dementia: confusion and withdrawal. I don’t blame myself: I was confused. But I also recognized that from Joy’s point of view, such reactions, repeated over and over, must be painful.
Throughout our time together this morning, the people—most of whom I’d known so well—responded warmly to my sharing … and to Joy and Grace’s sharing. It was part of that terrible and wonderful tapestry of these past months. I felt so enveloped by love and support. It was such richness. I would have missed it all if I’d not “gone public.”
Other people in the group had experiences with dementia, too, of course. Dementia can be part of AIDS and other diseases. Almost 50% of people eighty-five years and older have Alzheimer disease. At the end of our time together, Sherry, one of the young staff members whom I knew well, asked me whether her mother should be evaluated. Her mother has wondering herself about evaluation, but Sherry had been ascribing any problems to stress or other causes, and her mother had not yet been evaluated. I told her that I thought it was important for her mother to be evaluated, and I could see Sherry struggle silently with the implications of the morning. On a very different level, our time together had been important to her, too.
Blog Posts from January 2013
Tuesday, January 1, 2013
Napa CA
My spiritual director reminded me that my vulnerability will only grow as the disease progresses. She expressed the hope that the Eighth Day community could not only see the vulnerability but also see the richness and opportunity in it. It’s not exactly the biblical aphorism (“He who loses his life for my sake will find it”) since the Alzheimer’s is a natural phenomenon that I did not decide upon. But I am deciding to show my vulnerability and that is a conscious decision. In freely sharing my diagnosis, I am acknowledging it and baring my vulnerability before I would actually have to. If that turns into a positive experience for the community, we may be able to learn something about the sharing of our inner realities.
Acknowledging one’s own and others’ vulnerability is itself essential to community. Claims of human invulnerability are always lies that damage the possibility of truly human relationship. The hope is not only that the importance of vulnerability will become clearer as the disease progresses but also that we could begin to share that gift with one another. For that I would be very grateful.
Sunday, January 7, 2013
Telling My Youngest Sister Laurie
Lois, my oldest sister, and I went to Minnesota over the weekend to spend time with my other sister Laurie. It is getting less surprising to me, but spending time with people with whom I’ve just shared that diagnosis was a wonderful time, a deep closeness between the three of us, including Laurie’s husband Paul. I had a much briefer time with Alex and Abbey, their grown children, but that time also was rich. The richness, I believe, comes from the increased sense of vulnerability we all feel. Both Laurie and Lois have their own sufferings that confront them. Both Laurie and her husband have been disabled for many years, she with multiple sclerosis and he with incapacitating back pain. Lois is still grieving the loss of her daughter fifteen months ago. Pain is additive, it seems. This ongoing loss of their brother adds to their vulnerability. Aside from the hours we spent watching all of the NFL play-offs (who would guess that my sisters would become rabid football fans?), we spent almost all of our time together, talking and just being present to one another.
I’ve mentioned it before but this increasing vulnerability is a great gift to me. I’ve been intellectually aware that I am vulnerable to the vicissitudes of life just like anyone else. During some of my bouts of more severe depression, I’ve known it experientially, too. However, I’ve basically considered myself a person who doesn’t need much from others. Our American myth is that such independence is the bedrock of the culture. But it’s based on a lie. None of us is independent; all of us have deep needs that can only be met by other people. While I may have recognized my vulnerability intellectually, there is all the difference in the world between my striving to overcome it in order to prove my independence, one the one hand and welcoming that vulnerability and experiencing its gifts, on the other.
Laurie, Lois and I have decided to get together more often. I hope it happens, but we’ll see.
I still marvel at the reality that these last several months have been the richest period in my life.
Wednesday, January 9, 2013
There are still periods of several days in which I don’t really notice any cognitive symptoms. Strangely, I find myself almost wishing there were some symptoms to anchor me. It’s sort of like pressing on a sore spot to make sure it still hurts. It’s not that I don’t have doubts about the diagnosis, although I do irrationally consider the possibility that the diagnosis is wrong. As I’ve explained before, my first reaction to such thoughts is not anticipatory joy but actually anticipatory disappointment. My identity has gotten so wrapped up in my disease, that I would regret losing the immediate future I’ve been planning for. This is just one more symptom, I think, of my needing a “self” to anchor me. I need to keep reminding myself that as natural as that need seems to be, I quite agree with the Buddhist recognition that hanging on to self is a cause of deep suffering. Let go. Let go. Let go!
Saturday, January 12, 2013
Yesterday, we met with a lawyer to talk about the details of the issues with Medicaid. She mentioned that the cost of nursing home care was now between $100,000 and $120,000 a year, which is an extraordinary figure it seems to me. Since the majority of people with Alzheimer’s will eventually end up in the nursing home and most of those will run through their resources fairly quickly, the cost to the government is extraordinary. Most people think of Medicaid as a program only for poor families with single moms. But in reality two-thirds of Medicaid funds go to care for people who had been middle class, but just burned through whatever funds they had. If only those people who want to shrink the size of government to the point where it can be drowned in a bathtub could recognize how important Medicaid and lots of other government programs are to our country, perhaps we could have intelligent discussions about the role of government and taxes in our country. Oliver Wendell Holmes, the Supreme Court justice once wrote: “Taxes are what we pay for civilized society.” Amen.
It’s one of the reasons I feel okay about trying to avoid having to pay for my nursing home expenses ourselves. Our government should be doing far more to encourage a civilized society, especially creating the conditions for justice, which means a redistribution of resources to make our society livable for the poor. Since Marja and I are giving the lion’s share of our resources to that very purpose, I have no reluctance in having Medicaid pay my nursing home expenses if our money will be used for what government ought to be, but isn’t, doing.
The best solution to keeping our money away from Medicaid, it seems, is to create a trust that Marja and I no longer have control over and then to put most of our money there. Our trustee, probably our eldest daughter, could then disburse the money to the causes that we consider important as well as a certain amount to us for living expenses beyond Medicaid. It’s hard to believe it’s that simple and that everyone in our situation doesn’t choose it, but, according to the lawyer, most people don’t trust anyone else with control over their money, even a family member. What does that say about our culture?
Monday, January 14, 2013
After meeting with the lawyer on Friday, we met with our financial adviser on Saturday to talk about the issues arising from the Alzheimer’s. The details probably aren’t relevant here, but I was impressed by two things. The first was our process. I’d told him previously about my Alzheimer’s; Saturday we acknowledged it again at the beginning of our meeting and he expressed his sympathy appropriately. But after that, we moved directly into the meeting and were able to talk easily about the nursing home I’ll probably need, my death, and Marja’s needs during and after my illness. It was a straightforward discussion, and I was grateful.
The second thing was that he mentioned was that his mother-in-law had Alzheimer’s and she’s currently at the stage where she is quite confused about many things (for instance, they can’t leave her at home alone) but when she is in conversation with them, she is still present. While I’m sure there are limitations to what she can understand, nevertheless, they are still in what feels like full relationship with her.
Somehow I’d forgotten this stage and that I unconsciously saw myself as going directly from a somewhat confused and ambulatory old man to a bed-ridden vegetable in the nursing home. If I’d thought about it consciously, of course, it would have been obvious that there are several long stages in between. One the one hand, his mother's story is hopeful: Even well into the disease, it's possible to still be in relationship with people close to me. On the other hand, it’s likely that the point will come that my family won’t be able to meet my needs even though I’m still ambulatory and “present” to myself and to others; this could happen, for instance, if I wandered uncontrollably. Perhaps I will need to be in a nursing home well before I lose consciousness of myself and those who love me. That thought is scary.
January 17, 2013
Washington DC
Joseph’s House and Its Interns
My first class with the Joseph’s House interns met this afternoon. It was wonderful.
Joseph’s House is a home and hospice for homeless people with terminal diseases. My family and I founded it in 1990 as a home and community for homeless men with AIDS and we lived there together for three years. It was a wonderful place, an experiment in deep community between white and black, rich and poor, sick and well. We took men in when they were just becoming ill, so they could participate fully in the community until they became sick and died, usually about a year after coming in. It was easily the most intense period of my life. I haven’t been director there for years and I left my position as the finance person about five years ago. I still keep in touch as a founder connected with fundraising and as a friend to Patty Wudel, the Executive Director who has shaped Joseph’s House into a profoundly beautiful place of silence, presence, care and love. Now that my disease has allowed me to look back over my life, Joseph’s House is one of those things in which I take great deal of pride. It was a great privilege to have been involved in its creation.
The most important contribution I currently make to the house is to teach the year-long volunteers, most of whom are just out of college. They learn about presence and compassionate care quite naturally by working there, so our class emphasizes the social injustice that brought these men and women into the house. We meet once a week for an hour and a half, studying some history of early oppression of African Americans, reading Urban Injustice, my book on the history of the ghetto, and reading Michelle Alexander’s The New Jim Crow to discover the profound injustice of the American criminal justice system. It’s usually a wonderful class.
As is usually true, this group of young people seems bright and eager, and we seemed to establish a bond immediately. I had been a bit reluctant to teach this year because of my diagnosis, but Patty and I decided I would teach as long I could. But I felt it was only fair to let the interns know about my diagnosis. I’m glad I did. I think I’ll be able to handle things okay, but, since we’re going to be spending almost five months together, I wanted them to understand my memory lapses (and whatever other symptoms came along) to give them permission to talk with me or Patty if my behavior started affecting the class. As with others I have told, these moments have been full of respect, caring and love. Yet again, the moment felt beautiful: a great sense of spiritual connection.
I fear I’m sounding like a broken record, stuck in la-la land, telling everyone how wonderful this is, denying the realities of this disease. But I’m quite aware of what's coming. And that doesn't change the beauty of the present moments.
Friday, January 18, 2013
Washington DC
Sojourners Interns
I led a seminar with the Sojourners interns this morning. Sojourners is a Christian magazine committed to peace, justice and discipleship. It’s a good publication and has done much to bring Christians—especially evangelical Christians—into the movement for peace and justice. Internships are very competitive and these are very bright and committed young people. This was my usual seminar on the history of the inner-city black ghetto, and I know the material well. But I was nervous, perhaps because I thought I would be telling these accomplished young people what they already knew. My fears were unfounded, but I was still nervous and I found myself much less fluent and having much more difficulty finding words than usual.
So was this just one of those dissatisfying good sessions that every teacher goes through? Or was it my disease? I’m beginning to realize that I pop in and out of being affected. Yesterday at Joseph’s House with the interns was great; this morning at Sojourner's not so much. In Alzheimer’s symptoms come, I understand, but it’s confusing. Should I continue to accept these invitations to work with groups or mentor individuals? I’ll keep going for now. I hope I’ll recognize when to stop.
Saturday, January 19, 2013
Washington DC
Memory
I spent an evening at Joseph’s House last evening. I occasionally visit for the Friday evening meal, which is open to guests. Last night as we ate, I was seated close to two Ethiopian refugees who’d come to the house in the past few months. One I had talked to several times in the past months, but I could remember almost nothing of our conversations, even his name. As he described a talk we'd had a year or two ago about the possibility of living with us, I could only vaguely remember it. Clearly I’d been a somewhat important person to him … and I could remember little of it.
It’s really embarrassing. These several times we’d met, I’d been surprised by his instant welcome and warmth toward me. After the first time or two, I knew each time that I had met him but not the contexts. It wasn’t appropriate in that situation to tell him about my Alzheimer’s, but I worried that he’d felt slighted when I didn’t recognized him for the fourth or fifth time.
The same thing happened with the other Ethiopian, a women that I can now vaguely remember meeting and talking with at our church’s Thanksgiving dinner. She too was friendlier than a stranger would be, and as we shook hands, she recognized that I didn’t remember her and mentioned it. I apologized, but again I felt really embarrassed.
This is just the beginning of many such meetings. A part of me wishes the disease would progress faster so that my condition would be more obvious and I less embarrassed. (Well, ok, it’s a really, really small part of me that wishes for a faster progression.)
My memory is increasingly being shredded; there large holes through which more and more is falling. My symptoms are becoming more noticeable, and I’m glad that I will be sharing with my entire community at Eighth Day tomorrow and beginning to publish all these blog entries in a week or two.
Sunday, January 20, 2013
Washington DC
Constant Losses
Yesterday, the drawers in my old file cabinet locked. We’ve never had a key and never locked it. I enjoy and am used to fixing things around the house, but after two hours of putzing, smashing and removing the old lock, and breaking the thin closet door next to the cabinet, I gave up. Only then did I recognize that the file drawers had never been locked in the first place; I just hadn't noticed the latch! This is one of a number of thing in the past few months that I haven’t been able to do, several times breaking something in the process. It should have, but hadn’t, occurred to me that I would be losing that skill, that joy, too. It’s a disease of constant losses.
In all of this, of course, lies the opportunity for spiritual growth, to find rest and gratitude within the suffering. I’m doing okay with it, I think. I don’t get too frustrated with myself, I don’t blame myself, or feel guilty. I understand that this is just what I’ve been given at this time in my life, and the task (and adventure) is to make peace with it. And to a great degree I seem to be able to … at least for the time being.
As the disease progresses, I keep thinking that I’m going to feel differently, experience myself somehow as a different person. But so far that doesn’t seem to be true. Yes, my limitations are becoming more and more noticeable. Yes, they are affecting my life practically. So I am different, but I am not different … if that makes any sense to you. It seems contrary to the Buddhist notion of “not-self.” I recognize that I’m different intellectually, but the difference doesn’t seem to be in my self. It’s almost as if I’d lost an arm: It’s obviously gone; I can’t do what I used to do, but there’s something within me left unchanged. “Illusion,” I suspect the Buddhists would say. But it is certainly my experience at this point.
Monday, January 21, 2013
Washington DC
Vulnerability
In my previous thinking and writing about the vulnerability of the poor, I’ve emphasized that we people of privilege can never really give our privilege away. We can take on voluntary poverty by moving into the ghetto, or sharing the poverty of a remote African village, but our privilege always goes with us. We have our education, we have our vocabulary that opens doors, or we have family that in a pinch will help out. At the very least we know what privilege is and in which direction it lies. Usually, when I’ve talked or written about this, I’ve added the caveat, “… unless we develop a mental illness that takes our privilege away.” Alzheimer’s will, in this sense, eventually take my privilege away.
Even with this disease, of course, I will never really experience the vulnerability of the poor and oppressed, of say an oppressed person who also has Alzheimer’s. But this will get me closer. Similar to the worst time of my depression when I had to face the possibility that I would never be well, the Alzheimer’s means that I will be more and more vulnerable to the needs and desires of others. If am not able to participate in a conversation (or if other people think that I can’t), then I will be excluded. At some point I will be dependent on others to get me what I want or need. I will become susceptible to scams or frauds.
I don’t feel that vulnerability yet, but it is certainly coming. It will take a certain spiritual strength to exist in that vulnerable space. But what kind of spiritual strength will I have as my cognitive impairment worsens?
Thursday, January 24, 2013
Washington DC
A Life Changes
I’ve had a disquieting, indefinable sense of things being not quite right. It’s part apathy, part a mental fuzziness, part anxiety, part a sense that I’ve not been doing my best, part a loss of confidence. On the one hand, I’ve accepted one, possibly two new engagements to speak with students and I think my class this afternoon with the interns will go well. At the same time I’m anxious about both of those things. I feel like I’m wasting time, yet I’m not sure how I could have been more efficient.
Perhaps it’s mostly loss of confidence. I want to update both my own website and Eighth Day’s (which I manage), yet I’m a little scared that I won’t be able to handle the update and will have wasted the $1000 that it will probably cost. I’m not sure; I can’t define this feeling well.
I want to spend a lot more time with my family over the next couple of years, both my children and my siblings. Because of the long distances involved, it will mean fairly long absences from Eighth Day, and I’m wondering about what that will mean for the level of my participation in the community.
If I think of it, taking time with family really isn’t negotiable so the real question is which church responsibilities to let go. Recently, as we talked during our weekly coffee, Fred affirmed the priority of visiting family, which is certainly my desire.
My life has changed dramatically; I and others will have to expect significant changes in what I do with the time that I have left.
Fred and I also talked about making good use of the time that I have here. He said that part of his theology is that “nothing is wasted.” What I understand from what he said is that any experience can become, in Garrison Keillor’s word, “material.” That is, I can take whatever I’ve been given and use it for good in the world. I’m certainly hoping that I can do that. I’m hoping, for instance, that my experience with this disease can give young people a different perspective on this aspect of aging. They don’t, of course, think much of their own dying and I would imagine that Alzheimer’s is at the top of their list of horrible ways to die. So if the young people in my classes, at church, and perhaps at medical schools or colleges, will allow me to enter their lives a little bit, I might be able to do some good.
Saturday, January 26, 2013
Washington DC
Accommodation
I guess I’m accommodating to the diagnosis. I go through days or even weeks when I notice no symptoms … at least no new symptoms. I suppose I’m getting used to picking up a new magazine and reading half way through an article only to realize that I’ve not only read the magazine previously but that I also read this same article just a few days ago. Or blanking on a word in every conversation. Or spending five minutes looking through our tiny apartment for my hat or shoes or backpack several times a day. I am used to it and it doesn’t feel abnormal. I catch myself thinking what I’m going to say to friends or those who read my blog if this whole thing turns out to be a false alarm.
I shouldn’t blame Marja, then, for flipping back and forth in how she thinks of me, too, one night concerned that I’ve just fallen for a telephone scam, the next cautioning me about publishing this blog because it might be something else, not Alzheimer's. We both go back and forth.
I continue to be amazed at the wonderful conversations I’m having with people. I’ve had good conversations with people before this disease, of course, but it now happens repeatedly. My second discussion class with the interns at Joseph’s House was very rewarding. What a gift!
Monday, January 28, 2013
Washington DC
Little Things
A Presbyterian pastor visiting yesterday from New Jersey introduced himself to me in church. He seemed to think we’d met before. I shrugged and probably looked at him pretty blankly, so he started describing several occasions where we’d seen each other, what we'd talked about and that he'd come to Joseph's House. Clearly, it had been important to him; I couldn’t remember a single bit of it. So I was embarrassed that I didn't remember a thing about this man who knew me so well; he was embarrassed to think that the conversations had meant so little to me. I considered cutting through the bilateral embarrassment by mentioning the Alzheimer’s, but that would have trapped us both in one of those too-much-information moments with 15 seconds left. In this case, embarrassment seemed the best choice.
This morning I poured cold milk into a cup with the intention of putting the milk carton back into the refrigerator as soon as I put the cup into the microwave to heat. But I forgot to put the carton back and only noticed it standing there on the counter when I returned to the microwave a minute later. Before taking the cup out of the microwave, I made a definite mental note to return the carton of milk to the refrigerator as soon as I got my cup. It was only a few minutes later as I was returning with my milk to my room that I remembered the milk carton.
Twice I forgot the very same intention seconds after I’d made it, even after making a conscious mental note of the intention.
It may not seem like much but things like this that would have seemed just funny when they were rare events now happen over and over.
Tuesday, January 29, 2013
Research
Washington DC
I received a call from a research department at Georgetown University that is studying a treatment for Alzheimer’s. The hope for the drug is that it will actually change the progression of the disease rather than just improve cognitive function while the pathology of the disease progresses undisturbed. I told my neurologist several weeks ago that I’d like to be part of such a research project, he informed the people, and a nurse at Georgetown telephoned me. I’ve read the particular research protocol. While it’s intense, it’s something I’d very much like to take part in.
The truth is that I only pursued the research possibility because my sisters pushed me into it. But now I’m very interested in the possibility. It may be difficult to qualify for and only a few hundred people from around the country will be invited in. There will actually be four or five interviews and SOME testing to determine eligibility. One of the tests will be a Positive Emission Tomography (PET) scan that can further confirm my diagnosis and lay to rest any lingering doubts. My neurologist offered me the test several months ago, but I declined for cost reasons; now it will be part of the protocol.
As a physician I always felt that research protocols were the best way to get detailed care from doctors with sub-specialty interest, and I always recommended them to appropriate patients. Often, there won’t be any benefit from the medication being studied, but the process itself leads to deeper understanding of the disease, attention to minor symptoms, and a sense that “everything is being done.” So my previous reluctance doesn’t really make any sense. Perhaps it was part of an unconscious need to slow down the acclimation process and better integrate Alzheimer’s into my self image.
As scheduled, I spoke to about 40 Georgetown medical students this morning about inner-city poverty. I was nervous. I’m very familiar with the basic outline, but I needed to change the introduction. In rehearsing it before my talk, I realized that I could not speak fluently about something I wasn’t intimately familiar with, so I had almost to memorize the introduction. It went well. Speaking with young people is one of my favorite things to do. The students were attentive, and my presentation was fairly fluent, although my memory for something quite familiar failed me at one point and I had frequent trouble word-finding.
Afterwards, I spoke with the professor. She apparently hadn’t noticed anything wrong with the presentation, which relieved me. I then told her about my Alzheimer’s, and asked whether there was any possibility of breaking into the medical school to share this process with doctors-in-training. She seemed positive and promised to talk with the relevant professor within a day or two.
I’m all set to announce my diagnosis to the world. All my previous posts are online both on my website and on my blog.
Wednesday, January 30, 2013
Now It Begins
Washington DC
I have been diagnosed with a progressive “mild cognitive impairment,” almost certainly Alzheimer’s disease. The neurologist told me the diagnosis last September, but I’ve waited to begin this blog until now when my symptoms are becoming noticeable to others. (You can find all the previous posts in the blog’s archives [bottom left] or by going to my website where I’ll keep all the posts in a few documents for those who want to read the whole story in chronological order.0
Actually, I’d been noticing symptoms for a while but was still surprised by my doctor’s diagnosis. Over the past several years, my memory has significantly declined. This is a common complaint for people as they age. For 20 years before he died, for instance, almost every time we visited, my father asked again for reassurance that he didn’t have Alzheimer’s His memory loss, like many other older people’s, was mostly for names and faces. I’ve always had that kind of poor memory, but I began losing memory in other areas as well. Two years ago, an entire trip to a rural area southern Virginia disappeared from my memory. I drove down to visit my friend Jens Soering in the prison to which he had previously been moved. I could have sworn I was going down for the first time. In fact, I’d been there before several months earlier.
I chalked it up to a single bizarre experience that would probably not mean much to a doctor, so I didn’t do anything except tell the story to friends.
Some months later, I couldn’t recreate a computer spreadsheet formula that I’d written several years earlier. In fact, when I went back and examined the formula from an old spreadsheet, I couldn’t even understand what I’d done. Such calculation difficulties persisted. I went to a neurologist in the fall of 2011 for testing and he said that I did have a cognitive impairment but that it wasn’t severe and the relevant point was whether it was progressive. I returned last fall (2012) and, yes, the impairment had progressed. There aren’t too many likely candidates for causes for progressive cognitive impairment. The neurologist performed tests for them: they were all negative. There is no certain test for Alzheimer’s except to rule out these other candidates, so the overwhelming likelihood is that I have early Alzheimer’s disease.
Since last fall, the disease has progressed. My memory is much less reliable. I’ve had trouble finding words, especially in Finnish as my wife Marja and I try to converse but also quite noticeably in English. Both my daughters, Laurel and Karin, recognized in retrospect that it took me longer to do certain tasks. That slowness in figuring things has gotten worse, too. While I can still eventually do most computer tasks, they can take a long time, and I can get confused easily. I’ve even had two experiences of being in locations that should have been quite familiar but, in fact, I didn’t really know where I was or how to get where I was going.
I’ve been apathetic about writing and about my website these last several years. I’m somewhat less interested in politics; for example, I couldn’t sit through the presidential debates last fall. (Some of you may feel that the only mentally healthy response to the debates is to turn them off, but it’s never been true for this political junkie.) Perhaps I’m just looking for an excuse, but I’d like to believe that this disease is at least predominantly responsible.
So, while there is always a chance that it’s something else, my neurologist and I are pretty certain that it’s Alzheimer’s. So far, the symptoms have been limited. I can still write well, although you may have noticed that my essays have been less frequent lately. When I type, I frequently leave out words and phrases (which I hope I’ll edit out before I actually put my posts up). I’m still teaching in small groups, still doing the books for my church, still mentoring some others. Up till now, I’ve noticed my mistakes well before others do. My judgment seems unimpaired. My life goes on.
It seems paradoxical, but Marja and I are actually doing quite well. In fact, I’ve noticed some positive changes in my ways of thinking and acting. I’m more emotionally open. I’m less insistent on maintaining my image as prophetic voice or incisive writer. I don’t need to prove myself with new accomplishments. For the first time, Marja and I have allowed ourselves to look back on our lives with satisfaction and gratitude. I’m more vulnerable to other people and have been experiencing an extraordinary closeness to some people that I would never have thought possible. While it seems crazy to say it, so far my life has been better … happier … than before this disease. I have no illusion about what’s coming, but, up until now, it’s been good.
Garrison Keillor said recently, “Nothing bad ever happens to writers; it’s all material.” So, at least for a time, this Alzheimer’s disease will become material for my website and for this blog. I want to write about what Alzheimer’s is like from the inside. What is the experience of losing one’s mind? Do I still experience myself as the same “self”? Obviously, I don’t know how long I can do this, although my good friend Carol Marsh has volunteered to keep it going with interviews when I can no longer write. We’ll have to see.
I had a number of scenarios for my death. This wasn’t one of them. But now, I have pictures in my mind of lying drugged and incontinent in some nursing home. I don’t want friends and family to remember me as that old guy babbling on the couch. I’m afraid of the uncontrollable rages that sometimes accompany this disease. Mostly, I think, I’m afraid of abandonment as I become one who can’t hold up his part of the conversation. I’m afraid that--except for Marja--my family or even very close friends will abandon me (even though I know intellectually that these are irrational thoughts), but it’s not paranoia to think that the quality of relationship will isolate me.
But it’s not only fear that we have about Alzheimer’s. It’s also embarrassment. What do we say to the guy has just repeated himself for the third time in five minutes? Several years ago our community invited to Washington a writer whose books had brought great change to our lives. But he had Alzheimer’s that had progressed significantly. I’m not proud to say that I had no use for him. Why had we invited a man who could hardly follow a conversation? (After my experience so far, I suspect he did understand at a non-cognitive level and honoring him was well worth our effort.)
So part of my reason for this blog is to address that fear and embarrassment. I’ve been frank and transparent with my family and my community because I want us to work together to teach each other about this disease and how to respond to it. I want to discover what friends (or even just acquaintances) can do to understand this illness and not have to abandon me. Perhaps I can take some fear away. .
I’ve been writing “posts” since September and they're all now on my blog, but haven’t wanted to publish them until now. I’m not sure how many people will want to go back and read those many posts, but I think that just putting them on a blog will almost certainly bury them too deeply and discourage anyone from reading the whole story. So, here they are in chronological order. I will continue to do that as the archives expand. I’ve also written a short autobiography that, I hope, will give you the chance to know who I was and, therefore, what I’ve lost.
These have actually been wonderful months! I want to follow it out. I hope some of you will want to join me.
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