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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.

Thursday, April 11, 2013


Washington DC
At this early stage in my disease, I sometimes feel embarrassed describing my symptoms.  They feel so prosaic.  I can’t mention a particular symptom without someone (often my wife Marja) saying, “I know what you mean; I have just the same thing.”  What I want to say in return is, “Well, no … you don’t.”  Usually, however, I hold my tongue.

The deficits I notice in my cognitive functioning are sometimes major, like getting lost or misestimating the church budget by $24,000, but more often they’re losing things or being slow on the computer or just plain confusion.  The confusion isn’t necessarily obvious to anyone else, but I can feel myself getting lost in a process.

This morning, for instance, I got really confused just writing in my journal.  A single page took me an hour and a half to write (without even going back much to edit).  Ordinarily it would have taken me twenty minutes or less.  But this morning I made several typos perhaps every line.  I constantly left out words or phrases that I’d intended to write but didn’t.  I’d go back to fix it and would shortly thereafter noticed that the way I fixed it was wrong, too.  Sometimes it took me several minutes to finally fix a misplaced word or phrase.  

I was sure that at one place in that journal entry, I’d written four bullet points onto the page.  A few seconds later, though, I looked up and there were only three bullet points.  I could have sworn there were four; apparently I’d gotten confused between deciding to write something and actually doing it.  What I can’t describe very well is the sense of confusion, like living in a fog, not quite connecting with the world about me. 

A couple of days ago, I wanted to insert some of the stories I’d written a few days earlier into the blogs I was currently writing.  Because my memory is now so poor, I needed to make sure I hadn’t used those stories in previous posts.  It meant reviewing a couple days worth of posts on the blog, several stories I was currently working on and several stories that were in my journal but not yet used. 

I keep the journal, the working files and the posted files in three different folders.  As I went back and forth between the three folders trying to compare the stories, I kept getting lost between the folders, getting confused about what I was trying to do, reading some files over and over and not reading others at all.  There were only six or eight stories among eight or so short files, but I couldn’t remember which story was where.  A ten-minute job took me at least half an hour.  What was most difficult for me, again, was this sense of being lost in a familiar area.  Why can’t I do this?

Another confusion: Some of the radio interviews scheduled for the coming weeks asked for Marja’s participation, too.  When I’d written down the interviews on my calendar, however, I’d forgotten to indicate whether Marja had been invited.  Only when Marja asked to which she should come did I realize I needed to keep track of it.  So I went back and found the emails containing the requests; in one case I had to call the interviewer.  Now I have to remember to write it down with future requests.  It seems a little thing … and perhaps it is.  But the little things build up.

And knowing that my cognitive functioning is impaired can create doubt about my thinking, for instance, did I lose my coat on the train coming back from Napa or was it stolen?

Nowadays, I lose things pretty often, for example, my sunglasses while in Napa or misplace things many times a day, so it no longer bothers me so much.  But if I actually lost my coat (as opposed to having it taken), I’ve reached a much worse level of impairment than I was aware of.  I remember taking the coat off the overhead rack exactly once on the trip, during a rest stop when it was drizzling.  I specifically remember putting it back in its place, slightly damp.  Then it was gone.

I searched for it everywhere, asked the conductors and at lost-and-found.  So if I had lost it, it wasn’t in the train, which meant that I would have had to have taken it outside, taken it off, set it down, and left it there when I got up.  I don’t remember doing anything like that.  To lose something by misplacing it is one thing, but to have taken all those steps and not remember any of them is quite another.

I’d like to believe it was stolen.  But it was an old coat, valuable only to an indigent person without a coat, and those folks don’t usually travel by train.  More importantly, I’ve been on many 3-day Amtrak trips across the country and I’ve never even heard of any theft of any kind, despite the fact that computers, luggage, and other things are commonly left in plain view. Things just don’t get stolen on Amtrak.

It’s not so much the value of the coat that bothers me; I’ll get a new one from Value Village.  It’s not that I don’t know this sort of thing will eventually be happening a lot.  What bothers me is the uncertainty, the not knowing where I’m at.  Did I blot the whole thing out?  If I’m that far gone, what kind of precautions should I be taking?  Should I be traveling alone?  Should I be driving? Perhaps losing the coat shouldn’t matter, but it matters to me!  How far along am I?


  1. Your brain is no longer “making note” of things (recording them in short term memory). Normally, our brain “makes note” of everything around us, without us even realizing it. It does this all day, every day. Our brain takes all our sensory inputs: the look, the feel, the smell, the taste, and the sound of what is going on – sprinkles emotion on top and stores it (in short term memory). As we sleep at night, our brain catalogues and indexes all of the daily notes and places them into long term memory for future retrieval. Your brain is no longer reliably “making note,” so an event – such as taking your coat off – has not been placed into your memory. The event is therefore not available for future retrieval.

    Since your brain is no longer reliably performing that function, you need a back-up system. My husband uses an I-Phone; he records just about everything into it. If he meets a new neighbor, he records their name, their address, when they moved in, when and where my husband was introduced to them, etc. Then each evening he reads through all the day’s notes. This gives his brain another shot at “making note” of the event. But even if his brain still does not record the information – it is in his I-phone and he can search for it later if he needs to. There is no doubt recording everything into an I-phone is time consuming, but it will replace a lot of your frustration and fear with some level of comfort and confidence. And what a blessing it is that today’s memory impaired have I-phones available to help them! In the past, you would have had to use sticky notes, which were good for recording, but not so good for retrieval.

    Since your brain is not “making note” it is very easy to place something, such as a coat, on a table or chair and simply not see it as you are walking away. My husband performs an inventory check whenever he moves from one spot to another if he is outside our home. He makes physical contact with everything he should have – phone, keys, wallet, coat – before leaving his spot.

    Finally, you may want to take breaks when you are experiencing confusion in your writing. Naps or leisurely walks, which may have been a sinful indulgence in your former life, are going to be a necessary component in your new normal. My husband sleeps much more than he is used to. Not because he is lazy – but because his brain needs the extra sleep to recharge.

    1. Thanks for your informative post. I know quite well the importance of lists and routines, of putting things only in certain places. I like your husband's idea of actually touching everything he needs before leaving.
      I've only had an iPhone for a while, and I can't imagine being able to "type" on it fast enough to record the information I would need. But the idea of writing as much as possible down seems pretty important.

    2. Yes -- technology has been a life saver for me. I record voice notes on my smartphone, have paper/pen handy, and have learned (gulp) to say "I'm very sorry, but my mind doesn't behave itself sometimes, and I lost track in our conversation. Could be back up and tell me again about XXX)"

      I also found that becoming more of a 'neat freak' has been required. My days of being able to function well in a somewhat (not over the top crazy, but somewhat) 'messy' home/desk/kitchen are gone.

      I also print out a daily 'To Do' list of not only what I will do that day, but also what 'items' that will entail. e.g. Before my illness, I could note "go to library" on my 'mental' To Do list. Today, I need to write out 'Go to library and return "Hostage"' -- and be sure Hostage is right in front of the front door so I trip over it. It takes more planning, but being 'in the moment' is much easier now, and a benefit of this illness is I no longer feel rushed!

    3. Thanks for the idea of recording things on my smartphone. I can't type well enough on the damn thing but recording might be possible. I'm also learning how much more careful I have to be about organizing, checking carefully (as Mary suggested above) before I leave anyplace to make sure I have every thing. (Doesn't always help, of course; I'm currently looking for my keys that I "always" put in the same pocket.)

  2. I enjoyed finding your site for the first time and now receiving an email each time you blog. Thank you for having the strength to blog and share it with others, so we may learn, and in turn, help me help others, for now. As an editor and writer, I know how we censor every little thing along the way; so, I want you to know that your writing is interesting, with or without censorship. Thank you for allowing me to learn from you!

  3. A couple entries back, you were exploring why Alzheimers causes fear in prospect. I thought at the time of relating what I saw my mother go through as her dementia progressed. It was that the world stopped making sense to her. Things she used to know and count on could no longer be counted on, as if someone was rewriting the rules of reality under her feet. I'm a hopeless geek -- I live in my head, not really in my body. And the idea that something may take that world away from me is terrifying.

    I thank you for your courage in being willing to take us on this journey with you. And I admire your skill in communicating with clarity what it feels like to lose both skill and clarity bit by bit. Just as one writer to another, whatever you've lost, you've not yet lost the ability to communicate in prose.

    1. Roberta:
      I wonder if you're able to separate YOUR experience of your mother's disease from HER experience. You would find it terrifying (as I did before being diagnosed and as I expect she would have ahead of time). As time went on and the rules of reality were being rewritten, did you ever talk together about how she experienced it, how she felt about it? I'm quite interested in separating out how I would feel if I were in that position (in other words, living in a future we don't know) and how the affected person living in the present experiences it. Did she ever say?

  4. Anonymous4/12/2013

    You said,

    "At this early stage in my disease, I sometimes feel embarrassed describing my symptoms. They feel so prosaic. I can’t mention a particular symptom without someone (often my wife Marja) saying, “I know what you mean; I have just the same thing.” What I want to say in return is, “Well, no … you don’t.” Usually, however, I hold my tongue."


    Forgive me if the following feels intrusive, but you, yourself want to share what it's really like to be inside the mind of someone with Alzheimer's, so I'm going to ask...what does it feel like to be trapped in a moment and misunderstood? You said you sometimes feel like you need to "hold your tongue." What would you say if you weren't holding it? What did you want Marja to "get" that you think maybe she doesn't understand?

    I imagine there is a sense of frustration that comes from knowing you are slipping, from feeling it. What do you want others to know about those feelings? Are you feeling a sense of urgency for others to "understand" (or frustration because you feel they don't)? What do you wish someone would say when you describe your symptoms?


    1. I also get frustrated when I've described a symptom and the response is, "Oh I had that happen to me." This is very common, but it changes the conversation. Much better to reflect what the person is saying and more importantly the feelings behind it. "That must have been scary, frustrating etc" "What happened next?" or even "Thanks for sharing that." It takes some courage to talk about what is happening inside your head, and it really does matter to you. I think it is nice to know that when you share it matters to someone else too.

    2. "Oh, that happens to me" does change the conversation. Specifically, it changes it from how I feel to how YOU feel. What I feel with that kind of comment is that the other person doesn't care about my inner experience of, say, confusion but assumes my inner experience is the same as their inner experience. Usually I can roll with it, but sometimes I really do want to be able to express how I'm feeling about getting confused at the computer. I want the other person try to hear my inner experience rather than dismiss it by assuming that they really know what I'm experiencing. I want them to care.
      Sometimes, of course, their response is out of a fear or embarrassment of the conversation that might follow if we actually followed it out. People don't want to talk about it, so they deflect it off onto their (normal) experience.

    3. To respond to a.b above:
      Good writer that you are, you ask good questions to draw me out. Thank you.
      A primary issue that I wrote about very early after my diagnosis was that I don't really know what I want from other people. And except for making some mean comment, I really don't know what I want to say to them, either. It's different with Marja, of course, but in everyday discourse, most people don't know what to say. If they take the spotlight off me and put it on them, they know what to do and say.
      (See my response just above) What I want to talk about is my sense of confusion, the wondering I have about what this means or what's coming. But that feels too intense a conversation when we're talking in the supermarket line.
      Thanks again for writing.

    4. Anonymous4/12/2013

      David, you're highlighting something very important. You have eloquently pointed out how difficult it is for people to communicate with those who are "ill." You're disclosing what it's like to be a person facing your own illness and you've highlighted how difficult it is to communicate with someone who you love who is ill. You just want to be heard and Marja just wants you to feel better.

      Ultimately, we all learn to understand by reflecting. We learn to relate to "life" by seeing ourselves in all that surrounds us. We use the tools that we've developed in our hearts and minds...for each person, those "tools" are different. It's very difficult to "reflect" on illness because it's not something anyone really WANTS to see in themselves, or their loved ones. The natural inclination is to say SOMETHING that will make the other person feel like "Yes...I get it! It's ok! - I'm ok, so YOU'RE ok."

      You're right...none of this is great supermarket line conversation, but I'm glad that you're digging deep here. Learning to "see" from someone else's perspective is sometimes the very best way to learn about ourselves. There are so many "dimensions" to this situation. You may never make sense of your decline, or understand "how far along" you are. People you encounter may never find the "right" words in response to your concerns. All the while, Marja will continue processing all of this too, hoping she'll find the right words to comfort you (and herself too).

      Being unable to function in a way that you are accustomed to sounds extremely frustrating...loving someone that you just want to HELP sounds difficult too.

      It comes down to faith, love, and trust. You and Marja are so very lucky to have each other.

    5. Initially, I would try to explain to people that my confusion was perhaps not just the 'usual' (???) forgetfulness of growing older. Instead, when someone says, 'Oh, I forget stuff all the time', I inquire, "Is there a history of Alzheimer's in your family? Because if there is, I discovered, after my diagnosis, that there may be ways of slowing the progression, plus I got me legal affairs in order." I found this response silences those who choose to minimize other people's suffering, enlightens those who do not know about AD, or gives strength to those who fear it in themselves.

    6. In response to Anonymous above, Marja and I are indeed fortunate to have one another. I blogged on this Nov 28: one night Marja was late getting home. I had the usual fantasies of something serious having happened to her. Regardless of my virtually cognitive certainty that she was OK, I was terrified imagining facing these coming years without her. It's actually the only time I've really felt afraid since recognizing the diagnosis.
      There are several possible reasons, I suspect, for why people respond to my complaints about my symptoms by offering similar symptoms that they have.
      1) Most of the time, as I said in a comment above, they just want to turn the subject of the conversation from my Alzheimer's to their complaints. People don't like to talk about Alzheimer's.
      2) Sometimes people, especially older people, have actually been afraid for some time that they DO have Alzheimer's and they're looking for one of three responses from me.
      a. They want me to dismiss both our symptoms as common and indicative of nothing.
      b. Sometimes their response is a clumsy attempt to ask me whether they really have it. They want their symptoms to be taken seriously.
      c. Sometimes they really want to enter into an important conversation with me, to deal with their fears. Perhaps they should be evaluated by a neurologist, so your suggestion they get help may be exactly what they're looking for and need

  5. Meredith4/12/2013

    I'm not memory-impaired (yet), but like your wife I also feel I need to say that I would also struggle with trying to review multiple documents in three different folders to see if I'd already said something before. You have mentioned before that your friend reviews everything you write before you post it. I would suggest that you delegate this task to her sooner rather than later, so you can concentrate on your writing itself, rather than these sorts of meta-issues. That sort of struggle sounds like one that only reminds you of your growing limitations.

    I would like to thank you for your writing thus far (and not just on your Alzheimer journey). I'm looking forward to reading more of your work. It was only after I'd read all of your blog and some of your theological writing that I realized that we have some weird sorts of parallels. I was also a smart kid who excelled in high school/college, took time off to go abroad during college, didn't know what to do after college and then ended up in medical school for the heck of it. I am married to someone from a Nordic country whom I met as a result of a year abroad, and we have lived in both of our home countries during our years together. I have had an enduring interest in theology and experienced the joy of finding a true church community. Last but not least, dementia is a big part of my life: I'm a geriatrician and take care of people in a nursing home in northern Iceland.

    After reading all of your posts, I would like to comment also on your post on emotional openness. I have also witnessed this among the residents I care for with dementia, and I think it's simply lovely. A little bit of loss of inhibition would be good for all of us, I think! I love being able to joke more with the people with dementia I care for, share more physical affection, and get more to the core of life in discussions than I ever would with "healthy" people. If at some point I develop dementia, this is certainly an aspect of it that I could like to embrace. I hope you are able to continue to derive pleasure and grown from it.

    1. Hello, Meredith.
      I suppose your last paragraph should no longer surprise me. Almost everyone who has had contact with people with Alzheimer's comments on this emotional openness and how "lovely" it is. More of the little joys, more physical affection, fewer inhibitions, and so on can be -- for so many of us who have learned to control ourselves so tightly -- liberating experiences.

      Part of the trouble I have in describing my confusion in specific instances (like the three computer folders in this post) is describing them in clear and straightforward enough language that communicates the simplicity of the tasks. I guess the worst part is that sense of fogginess, that knowledge that this should not be difficult, the awareness of confusion. Whether others would get confused or not is eventually irrelevant to me. I know that I would not have any trouble with the task two years ago.
      And yes, the parallels in our lives are astounding.

  6. Anonymous4/14/2013

    I have just read of yours and your wife's journey in my local news paper but written by Theresa Vargas with the Washington Post. It is so meaningful to me personally to read about your journey. You touch my most sensitive emotions and I admire your desire to want to share your ongoing life experiences for as long as you can. I especially like that you consistantly keep us on track with the task at hand!, that being the progression of this lonely hard to understand disease. Thank you very much.

  7. Have you ever heard of Dr Mary Newport on coconut oil for Alziheimer's treatment? She is successfully treating her husband for Alzheimer's by putting 2 T. of coconut oil in his oatmeal every morning plus she prepares their dinners using coconut oil!. Please check it out on Good luck!!!

    1. Thanks for writing, Janet. I appreciate your concern. I receive three or four suggestions a week for different treatments I could try (coconut oil is actually high on the list), but I've decided not to try any of them. I have written on this fairly extensively on March 8: "Why Not Try This?"

  8. Anonymous5/12/2013

    Hi David:

    This month's article in American Scientist, supports the position that brain capilary narrowing is a central basis for the creation of alzheimer's disease.

    In addition, the use of magnesium threonate may help your condition. This new form of magnesium crosses the blood brain barrier. In mouse studies this new Mg increased short term memory 15%, spacial memory 15% and long term memory 100%. This product can be purchased online or in health food stores.

    Let me know if you like these ideas.

    Goog Luck


    1. I don't keep up with the latest research on the causes. I know that at this point there are no treatments for the brain deterioration of Alzheimer's that have been demonstrated to be effective. There are a lot of hypotheses out there and some are being tested intensively by scientists. I have not heard of magnesium threonate as a treatment and am personally disinclined to take treatments that haven't been shown to work. Other patients, to be sure, do try the many hypotheses out there. I certainly can't blame anyone with a chronic fatal disease with unknown cause or treatment for trying everything that might possibly work, but that's not my personality.


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