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Monday, January 3, 2011

Symptoms: My Perspective - Remember-Forget-Remember-Forget-Then Remember Again...

Life is all memory except for the one present moment that goes by so quick you can hardly catch it going. 
        -TENNESSEE WILLIAMS, The Milk Train Doesn't Stop Here Anymore

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has dementia. That would be ME.
Medical Disclaimer.

I was looking over the stats for this blog today, and one of the features is that I can tell what someone searched for on Google who found my bvFTD Blog. This is always interesting, especially some of the more bizarre searches that end up here, but one in particular caught my attention today.

The exact search term used was, "do you forget to do something then remember with dementia". Now why Google pointed them to my blog is a wonder, but I hope they found something of significance, or at least entertaining. What interested me was that I do have that happen all the time, and I have not ever seen it explicitly listed anywhere as a symptom of any form of dementia.

Holes... lost memories... was ever anything there?
 I will try to describe what it is like from my perspective. I would also like to note here that using a daily to-do list helps to address and manage this symptom in day-to-day living, but I am currently not using a daily reminder list. I have not used one since starting Aricept and Ginkgo, and more on that can be found here, and here too, if you want to read more about it. But I digress, as usual...

It is easiest for me if I use an example, so here is one that I finally took care of today and is fresh in my mind. I need to write a check for my medical benefits once a month. I do not get an invoice, or any kind of reminder to do it, so I have to remember it on my own. I had made a stack of envelopes, and placed them in my bill organizer last May so I would not forget. I ran out of envelopes last month, so there were none left as a reminder. I never got around to putting any more in there... at least not yet.  (A workaround!)

I remembered that I had to remember to do it again in December when I wrote the check last November. I did not make out a new envelope as a reminder. I remembered it again quite well when I was doing the monthly bills, but decided at that time that since it was the Christmas Season I would wait a few days before I sent the check. I forgot all about it. I remembered it just before I went to sleep a few days later. Then I forgot all about it. I remembered it Monday morning, but forgot to write the check Monday afternoon. Never even crossed my mind the next few days. Then I remembered it again, but didn't do anything about it just then, and forgot about it. I thought about it Friday, remembered it again on Sunday, and finally wrote the check and mailed it today. Whew! 

Now, looking back, I can remember when I was thinking about it - when I actually remembered it - when I forgot it - and when I remembered it again. I also can remember that in the times between those instances of remembering it, I had no clue. None! It was nowhere in my head, at least not accessible at the times in between. I know it was there as a memory because it came back later, but it was not available to me in any way in between the time I remember it.

This is not like other memories where you are not thinking of them, but can access them if asked a question. These little short-term lapses in memory are different. The memory is completely gone, and not accessible. If you asked me about it in between times, I might or might not remember. I might just give you one of those blank looks I have so often lately.

Subjectively it is like my memory comes and goes. It slips in and out. It is here in its entirety, strong and clear, but then it is as if it never was - until it pops up again out of nowhere.

This is just one recent example that happens to be fresh in my mind because it happened today, and was of some importance. The truth of the matter is that it happens all of the time. I know... about now you are all saying "Happens to me too." But it happens to me all the time. Several times a day I will have some question, or thought, or want to remember to do something... then "Poof!" Its gone! I might want to look something up, or watch something on TV, think of someone's name, or call someone, or send an email, or answer a text message, or... or... or...

"Pop!" A few days later it returns, as if it had never left. Well, let me tell you. It did leave. In the time between when I think it, and when I remember it again, I got nuthin'. Nothing at all. Not even a hint, or association of the memory. It does not exist as far as my functionality is concerned.

As an outside observer you might interpret it as a non-sequitur when I suddenly remembered something that had been important for me to remember a couple days ago, and act or comment on it out of the blue. These little forgotten tid-bits tend to accumulate, and might seem a little strange if you are not used to it. I might seem a little "flighty", or at the least disorganized.

Whatever it was probably does not readily fit into the context of the present situation - which is interesting in itself because it is not that what I am doing at the time jogs my memory - the memory just pops in unrelated to what is going on around me. To you it seems as if I might be exhibiting some ADHD-like symptoms, but to me it is just remembering something I have been trying to keep track of for a while, and I know I gotta deal with it before I forget again, or put it off and hope I remember again if it doesn't need immediate attention like mailing the check did today.

As a whole this symptom is a little interesting, but it has very little impact on my daily living. My usual workarounds, and daily routines take care of the normal things. Most of the other stuff takes care of itself. If I keep forgetting to return a call, all of my close friends know to just call me again. It is the best I can do. Eventually I do remember, but then I may not act on it because if the whole initiation and motivation problems that I have. (You can use the "Symptoms" label to check out the whole lot.)  Oh bother! I just can't win!

Let me try a different way to explain it: suppose you have an appointment. In the past somewhere in my mind I always knew I had the appointment. It became more prominent as the time for the appointment grew near. Not so with me now. I remember the appointment - then totally forget about the appointment as if it never existed in this universe - and then all of a sudden remember it again - forget - remember - forget - remember. When it gets close I start using reminders like notes or leaving something in a prominent location, or setting an alarm. I usually do not miss appointments, at least not so far.

So, for whoever was searching for, "do you forget to do something then remember with dementia", and was directed to my Frontotemporal Dementia Blog, my answer is that "I certainly do!"

...and if this confused you, just read it a few times, and give it a few days... it probably won't help, but that is what I do, and eventually you will just forget all about it. Here is another example I just remembered... POP!... out of the blue....

The advantage of a bad memory is that one enjoys several times the same good things for the first time.
                                     -Friedrich Nietzsche (who, to my mind, was mostly an idiot!)

So... my son asked what I wanted for Christmas. I gave him a suggestion. He liked the idea, so I gave him explicit directions on how to get to the store. He phoned me on the way to the store to affirm the directions. I was pretty sure of the contents of at least one of my Christmas presents. That was maybe three days before Christmas. He wrapped it very nicely - made it look like a cat just to confuse me - and it worked. I totally forgot all about it on Christmas day when I was opening presents. I had known what it was when he went to buy it. When it was wrapped and under the tree I had no memory whatsoever of him going to get it. In this case, it worked out great. I got exactly what I wanted... and I was genuinely surprised when I opened it.

After I saw it, then I remembered the whole incident, but right at the time... I had nuthin'!

Comments are welcome.


  1. Lee,

    I know exactly what you are talking about. It is so frustrating and makes me angry. I can be talking or doing something and then remember something I needed to do a few days earlier and I'm off to the races, if you know what I mean. Sometimes people look at me strange when talking to me and I give them that cold dead stare, that indicates to me I just thought about something else that I need to get out. I find that your blog is so helpful in me recognizing my issues. Keep it up my friend...from one FTD to another...

  2. A life of daily/weekly surprises has to be at least 50% good! (Thinking of the cat package under the tree.)

  3. Thanks for the comments, Kevin and Eileen.

    The surprises part is maybe about 5% good. Cat packages under the tree don't show up very often. Besides, as you know - I generally don't like surprises ; )

    A quick update: I finally have missed an appointment due entirely to this exact symptom. I discussed this with my Neurologist, and the staff at the clinic, and all agreed that it was undocumented, and gave some insight into what is going on with FTD.

    Some days are better than others.