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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Monday, March 17, 2014


Washington DC

Ever since I announced that I don’t have Alzheimer’s but some other form of cognitive decline, I’ve had friends and acquaintances say something like: “I heard the good news!  I’m so happy that you’re better.”  In one way, they’re right, of course.  Having a stable cognitive decline of uncertain cause is better than having inevitably progressive Alzheimer’s disease.  If “better” means “back to normal,” however, then I’m not better.  I have by no means regained my cognitive losses. 

I notice my impairment in three areas: difficulty in finding the right word, forgetfulness, and occasional confusion.  The word-finding problem probably annoys me the most.  I was an intellectual.  I still do some teaching.  For me, communicating has always meant finding the precise word to express myself.  If I want to tell you I’m feeling “frustrated,” synonyms won’t do it.  I don’t mean I’m “irritated,” or “upset” or “disturbed.”  I mean I’m frustrated.

Forgetfulness: I can’t count on my memory anymore.
  •  Have we met before?  It’s my first question on meeting a new person in church.  I just can’t remember.  So I ask.
  • What did we decide at the last meeting?  I have no idea.  If I hadn’t written it down or reviewed it before today’s meeting, it’s disappeared.
  • What did I agree to do before Sunday?  I don’t remember agreeing to do anything.  Everything has to be written down and reviewed.
  • Without my calendar I have no idea what my week looks like.
It’s the intermittent confusion, however, that’s the most bothersome.
  • I was downtown earlier this week and got off the bus to walk the four blocks to my doctors office.  I wasn’t lost; I knew exactly where I was.  I knew where the office was.  DC is laid out in a grid, so there’s no confusion about how the streets go.  I ordinarily have a good sense of direction.  This time, however, I got completely turned around and got to the office only by guessing.
  • Several days ago I was helping a friend.  She was working 21 hours a week and getting paid $900 a month.  What was her hourly wage?  This is not college calculus.  She’s working three hours a day for thirty days in the month, which is $10 an hour.  But I got into multiplying 21 hours by four weeks (84 hours per four weeks) and then trying to estimate the fraction of the fifth week in every month; soon I had to get my pencil out and even then I got confused.
None of these is a big deal.  My impairment isn’t getting worse.  I’m enjoying myself as much as I ever have.

But I don’t want people to think that I’m cured.  I can’t quite explain that, but it has something to do with wanting an honest relationship between us.  Whatever.  In a longer conversation with anyone who’s actually interested, of course, it’s not difficult to describe the situation more fully.  What bothers me is how to respond to someone in the elevator (see here and here) or when meeting each other at the checkout counter.  I think the answer is to suck it up.

It occurs to me that my situation is not that different from many older people with arthritis in their knees, bladder problems, generalized weakness, or widespread aches and pains.  Most of the time, when I ask those older folks how they are, I don’t really want to know!  I’m not interested in hearing their “organ recital.”  I want to express my happiness with their recent successful surgery or hospital discharge or express my concern for them.  What I want from them is a smile and “Oh, I’m doing as well as can be expected.” Or “It’s going okay.”  “Or, yes, I’m happy the surgery went as well as it did.”  If they’re smart, those aching older people will make very sure I want to know before they tell me the truth.

It’s no different for me.  Usually people want to hear I’m okay, that my life is going well, that I’m relieved about not having Alzheimer’s.  They would prefer, at least for the time being, not to enter into my pain.  I can deal with it.  Mostly.


  1. I think it's a universal truth that people don't REALLY want to know how you are. My husband died in November and I rarely get asked how I'm doing, but when someone does inquire I can tell by the look on their face they aren't ready for a recitation of my pain/grief. Sadly, that's just what I need. I do attend a bereavement group but it would be nice to discuss with those I love or care about the day to day losses I am dealing with. I'm afraid it's just too boring for others.

    1. Cathy, I don't think its boredom, I think that many people are afraid to talk openly about death and how you are dealing with it. People fear saying the wrong thing, hurting you more, bringing up something that will make you cry (we can't have that, you know =)). They don't realize that you are dealing with it every day, every minute sometimes. If its somebody asking that you know and love, ask them "Can I talk to you about how I am doing?" They'll be nervous, fearing they may something wrong, but I really doubt its boredom. I'm a hospice/long term care nurse, and I can now say pretty much anything to anybody, if said the right way. But for most people, its really scarey fearing they will say something and you'll cry, or get angry or never forgive them. They don' realize that they don't have to say anything, they just need to listen.

    2. thanks Lee Ann! I understand and agree with what you are saying, but I still feel hurt when even my daughter just sits there and says nothing when something makes me cry. It feels like she is denying my pain. And actually, I feel people do need to say something: silence just equals "I don't want to hear about this" in my mind. I need to hear that I was a good wife/caretaker and that my husband loved me very much. I know the truth of those things, but if I don't hear them from those who were closest to the situation it seems to me that they are thinking the opposite is true. Guess I'm just an "Eeyore"

    3. And sometimes I'm the one on the other side, who wants to block the other's pain out. How often do I really want to know how another person is? How often am I really want to open myself to their pain? I’m too busy. Or too preoccupied with my own affairs. Or just don’t want to take on another burden.
      And yet I am aware that some of the most meaningful times in my life come from slowing down and allowing myself to listen to another, really listen. It certainly doesn’t happen all of the time, but if, in the presence of another's suffering, I can let go of my need to fix that suffering and just be in their presence, we can experience gratitude for one another.
      That awareness still doesn’t keep me from turning away from another's pain much of the time. But sometimes I remember and can open myself.

  2. When people (especially family or friends) ask how I am doing it's my instinctive response to entrust them with an honest answer. I see my honest response as a part of connection and intimacy. If I ask people how they are and they tell me "fine" when they are suffering, that's an insult to my capacity for compassion.

    However, sometimes others' interest in my honest answer may be zero, just as I may not be interested in theirs. The difference is, when I'm not interested I don't ask how they are. I say, "It's so good to see you again." Then I steer the conversation to the weather or whatever else.

    I guess the trick is not to second-guess someone's interest in asking the "how you are" question. A couple of questions to throw back at them might do the trick:
    1. Do you want the long story or the short one?
    2. How much do you want to know?
    3. How much time do you have?

    According to their response you'll know right away whether you can share or whether you can default to, something short but true:
    1. It's a challenge but I'm managing, thank you.
    2. It could be worse.
    3. Thank you for asking. I'm struggling. I'd like to be doing better, but right now it's tough.Can we meet to talk/pray sometime?

    My other thought on this subject is that I sometimes don't want to burden my friends or family with my tale of woe. My emotional state is my responsibility not theirs. When I am in that position I engage a therapist. I am paying them to listen to me, and sometimes that's enough. It's not the "caring" I need as much as someone to listen and perhaps help me to find strategies that enable me to cope better.

    1. There’s a lot of wisdom in your comment, Philly. Thank you for writing.

  3. David, I've followed your blog from the beginning. I appreciate your honesty and have found the blogs most helpful and enlightening. I too have to 'write everything down, consult my calendar at least once dairly, etc." That's OK--at 77, what better way to find gratitude that I'm still here, still ticking and enjoying every moment. . . .and Philly, thank you for the good advice on response to "how are you?" I'll print it out (!) and plan to develop and new and constructive way of acknowledging others.

    1. My mother (gave birth to me 1944) is still living. I just finished reading the 18 pages of Slate's "My Dementia" which affirms for me the writing I have been doing since my last day of paid work 2009 June 30, of which the following is a piece today. Twi-lit comes from that state in between sleeping and being awake, something I learned from Ira Progoff's book "At a Journal Workshop." Here goes: 2014.03.20 Thu twi-lit
      ‘to start’


      ‘dementia down memory stairs’
      walking up to
      bathe or having
      bathed walking down

      ‘titilating hand he cups’
      Ensō (円相)
      blouse: or left side
      rite hand in-side

      © 2014 RobertJulianBraxton

  4. Hi, David,

    I saw this on Slate and thought you might want to read it:

  5. Anonymous3/19/2014

    I recently found this article ("12 Things You Should Never Say to Someone with a Chronic Health Condition") to be helpful, for both those dealing with illness and for caregivers:

    I think part of the difficulty lies in the mindset that, on hearing a problem, one is then pressed to somehow "solve" it. Most times, all we need is just a listening ear. I love philly's strategy.

  6. I think the 'searching for words' problem becomes an issue for most people as they age; some more than others, I'm sure. When I'm sleep deprived, I notice it more. This morning I was responding to an Email inquiring about my dogs, and I could NOT (for the life of me) come up with the word 'purebred'. All I could think of was 'thoroughbred' - which refers to horses, not dogs. I was so frustrated, I could have screamed. Thankfully, I was easily able to find the correct word on the internet. But I notice this happening more and more. I'm not yet 60.

  7. Anonymous4/02/2014

    During your first year of blogging, I was following your blog with great interest. Today, I returned for the first time after a long hiatus, curious to learn how things had continued to unfold for you. I was stunned to learn that you had "lost" your diagnosis.
    I can only imagine the burden this must cause, given that you are continuing ongoing symptoms, and now have no physiological, brain-chemical "box" to frame your experience of those symptoms in. Modern medicine, as sophisticated as it is, doesn't really offer us a lot of recourse for dealing with such baffling situations...
    Here's a thought that arose for me as I was reading your description of your symptoms: I know that there can be a link between emotional trauma, for example trauma experienced during childhood and cognitive impairment of the kind you are describing don't know if you've had a chance to explore this connection, or if it even resonates with you as a possible source of your problems - I just wanted to mention it, in case it might be helpful to you.
    One thing I definitely relate to in your post here is the frustration of not being able to effectively communicate your experience with others, by referring to a handy label (such as Alzheimer's) that others can easily relate to. I am a survivor of some pretty severe childhood trauma, a lot of which I wasn't even consciously aware of until fairly recently. So for a lot of my life, I found myself grappling with symptoms I couldn't explain, such as depression, confusion, and a high degree of anxiety; symptoms that similarly did not lend themselves to a single, simple, or clear diagnosis, or even a clear treatment. There were times when I truly wished there were such a diagnosis for me, despite the implications such a mental health diagnosis might have entailed. And a pill along with it, to effectively eliminate the symptoms I was grappling with. Working through the traumatic experiences has been the answer for me - a slow answer, but probably more effective than any pill would have been. And the beauty of it is that as I untangle the many layers of my experience, it is becoming easier for me to talk about it in ways that don't end up alienating others by either under- or oversharing with them.

    As I said, I don't know how this may or may not relate to your experience, but felt the need to share the reflections your experience brought up for me.

    Thank you!

    1. Thanks for writing. Depression is a well-known cause of cognitive impairment and I would imagine that the kind of PTSD that arises after childhood trauma would be even more powerful a cause. If I were looking at my case from an objective viewpoint, depression or something like it would be high on the list of probabilities, and my neurologists have certainly raised the possibility.
      By definition one can't know about one's own unconscious childhood trauma. I was in therapy 30 years ago for long-standing depression and my therapist was concerned about childhood trauma, but after 8 years of therapy there was no sign of it. My siblings do not consider it much of a possibility at all. Neither does my wife Marja or close friends. The previous depression has been shown pretty clearly to be organic and has responded well to the anti-depressants I've been on for almost 20 years.
      I can't rule it out, of course, so I just have to put it down with all the other possibilities and see how it all turns out. I suppose it would be the best diagnosis possible, actually.
      It's an important issue in thinking about cognitive impairment, so I'm glad you gave me a chance to respond to it.


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