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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, May 06, 2013

Embarrassment (2)

Washington DC
In my last post I wrote about the general embarrassment that surrounds Alzheimer’s.  Embarrassment may not seem like such a big deal, but I believe it has a lot to do with the isolation of people with Alzheimer’s.  And isolation is a big deal!

I think it may be helpful to break the embarrassment into two different pieces: the embarrassment that a person with Alzheimer’s feels for her own behavior and the embarrassment that others feel in the presence of a person with Alzheimer’s. 

As you’ve probably figured out if you’ve been reading this blog, I haven’t felt embarrassed or ashamed of my Alzheimer’s disease … at least not yet.  It’s true that my disease is early and my behavior not yet too gross, so things may change.  But I think the reason I don’t feel embarrassed is because I’ve told most everybody I’m around. 

I’ve always had trouble remembering names and faces and, in the past, it’s caused me lots of embarrassment.  I felt stupid and I worried the other person was offended. 

Shortly after my diagnosis in September, I started slowly telling people: my family and closest friends, our small faith community, my email contact list, and finally the whole world through this blog and the Washington Post.

My memory has now gotten much worse, of course, but now we all know why.  I know that there’s a reason beyond my control for my declining memory and I don’t worry the other person is offended.

When I forget names or get confused in conversations or forget to do things I’ve promised to do, I now make some reference to the Alzheimer’s disease, we all shrug our shoulders and we continue on.  In December, I made a $24,000 mistake in figuring out our faith community’s next year’s budget.  Before I discovered the mistake, we’d already allocated the money to various missions, so it was a mess.  Previously, I would have felt hugely embarrassed and ashamed and it would have taken me weeks to get over it.  This time, none of us was very happy, of course, but, because everyone knew my condition, no one was resentful, and I wasn’t embarrassed.  (Yes, it was clear that I shouldn’t continue as bookkeeper, however.)

The other evening at a reception, I was talking with a woman I knew socially about Alzheimer’s in her family and about her concern over her own symptoms.  Because there’s a big difference in heritability between autosomal dominant (“early onset”) Alzheimer’s and the normal later-onset disease, I was curious about her age and said, impulsively, “You’re about fifty-five, right?” 

Umm … it is it highly unacceptable in American culture to suggest to a forty-four-year-old woman that she looked like she could be fifty-five.  Under other circumstances, I would have been mortified and would have spent the rest of the evening trying to make excuses.  But I wasn’t embarrassed.  We lose some of our inhibitions with this disease, and—despite the fact that I’d just steamrolled a social norm—I just rolled my eyes, as if to say, “What do you expect?”  As the evening went on, she mentioned my faux pas several times; I just kept rolling my eyes.  I knew that in the normal social context it was unacceptable; but both of us knew that Alzheimer’s had changed that context.  She may still have been offended, I suppose, but I wasn’t embarrassed. 

So at this early stage in the disease, I don’t feel very embarrassed because I’m aware of a new context.  At some point, of course, I’m going to get to the place where I won’t be embarrassed because I won’t realize I ought to be.  Other people, like my wife Marja, may be embarrassed, but I won’t be.

It seems to me, then, that the isolation that plagues so many people with Alzheimer’s is not because of their embarrassment, but the embarrassment (or fear of embarrassment) of friends or family that threatens them and drives them away.  I’ll look at that in a future post.

 
I’d be very interested in getting comments from any of you with relatively early disease who have made a deliberate point to inform other people.  What has been your experience with your own embarrassment?  Have you regretted going public? 

18 comments:

  1. Thank you for another wonderful post.
    I'm hoping as baby boomers age and Alzheimer’s becomes more prevalent, this idea of being embarrassed by things out of our control may shift. I think of people in my grandparent's generation and how they rarely spoke of health issues/problems – this has changed. One thing modern technology and the internet has brought us is openness and transparency (in some areas) and, although I could do without knowing what some actor had for breakfast, I do appreciate the glimpses into other people’s lives and the oh-I-thought-I-was-the-only-one-who-felt-that-way moments of connectivity.
    You may be leading the way and helping a great number of people realize that embarrassment serves no purpose. It is what it is and we have to start from a place of compassion. Visiting my grandmother she often used to look at me when I walked in and say “Oh, I have a granddaughter who looks just like you … but she is much younger and prettier!” Perhaps working in the healthcare profession prepared me but I also realized, as you said, Alzheimer’s had changed the context (and she seemed to have a wonderful memory of me … who wouldn’t cherish that?). The loss of inhibition was also a bonus in so many ways; the openness and the ability to talk about things that may not have been comfortable before created a deeper and more meaningful relationship.

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    1. And thank you for another wonderful story!
      Although my loss of inhibition is not very great yet, but (given my previous inhibited way of doing life) it's been wonderful so far. Relationships are easier; my grandkids are more fun (I may even be more fun for them); and I let things slide more easily.
      As I'll talk about in a future post, I don't think the problem is so much the embarrassment the person with Alzheimer's feels but the embarrassment other people feel. That's what we need to work on.

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  2. I wonder if as one becomes more obviously afflicted, would others treat your statements with less credibility and thus any openness is not appreciated as it would be if one were totally competent.

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    1. We will certainly see! Your point is a good one. I've never been "totally competent," but my competence isn't now much different from before the onset of this disease. So ANYTHING I say needs to be kept in that light. As I'm more affected by the disease, things will undoubtedly change. I'm hoping to stay "here" for some of that.

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  3. I would love to know the neurological pathways that social etiquette requires. Any relation to math skills? I have declined in both areas as well.

    While forgetting people's names is a fairly common occurrence with many people, forgetting my son's name or my best friend's name or someone I've known for many years and see almost every day is disconcerting. I also mix up my "Don's" and "Tom's". They seem to have gotten used to it -- mutual eye rolls when I greet a Tom, with "Hey, Don" and he responds "No - it's Tom".

    I also find myself 'using the F word' (not necessarily in anger, just as a generic adjective, or the common WTF?) much more than I have ever done before, regardless of company. At my last appointment with my neurologist (which I can remember vividly), in response to an exam question I couldn't answer ("Who was the President before Obama?"), I said "Oh, f***, -- I know who that is -- I can see his smug face -- what the f*** is his name?". The well-mannered woman I had been had disappeared. I apologized; the doctor just laughed. (Right now, I can bring up that president's name in my mind, which makes me realize my illness has its benefits at times :).

    I find I get tired of prefacing interactions with statements like, "Sorry, my brain is just not working the way I'd like it too -- what is your name again?" or "Could you tell me what the bill would be with a 20% tip?". I just launch into conversation or pull out my calculator. As to a shocked face at the 'F' word, I just say "Oops -- sorry"

    Accepting my new limitations means I've given up on names and math and being a well-behaved woman. I have become better at rolling my eyes and shrugging my shoulders while smiling.

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  4. Hi, Megan. In all your posts you haven't mentioned how widely you've shared your diagnosis. Do most people you interact with know? Do you have to use your prefaces or apologize for using the F-word with those folks?
    I haven't gotten as far along in the disease as you ... yet, but the lack of inhibition must sometimes be embarrassing. (So far, my decreased inhibition has actually been pretty nice, since inhibition was a bit of a problem for me before.) But, yeah, F-bombs in general conversation, inappropriate bluntness, commenting on things that "shouldn't" be commented on: I can't wait ;-).

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    1. Everyone I know knows my diagnosis, and as I am no longer working and pretty much just hanging with my close friends/family, I don't need to apologize. But the 'f-bombs' began to happen before I stopped working (I recall letting is slip with my boss once), and I do find myself apologizing when I see a shocked face.

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  5. David: As you know from our talk and walk recently, I have very little reason to be embarrassed with my Early Onset ALZ because I "Outed" myself to everyone that I knew/know.

    I figure that if the people that I know are aware that I have this disease, there is little to be embarrassed about.

    And as a Bonus, it can be an opportunity to discuss the disease and perhaps make it less scary/repulsive. I'm not aware (HA!) of being "dropped" by anyone I know. I'm not aware of anyone backing away. As one of the sages said: "Knowledge is power.

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    1. Thank you, Jim. I'm sure there are others with different experiences (eg. people fired from their jobs or divorced), but I haven't heard from them yet. But meganthemegan seems to agree and there are two others from whom I've heard with similar good results from coming out of the closet. I'll be interested in hearing from others.

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  6. Anonymous5/08/2013

    David, I guess human nature is such that we all feel embaressment at some point or another. We feel awkward or "shameful" if we fear that others won't accept us as we are and more importantly when we don't accept ourselves as we are. Mostly, embaressment is ego.

    I often think about how when a person goes through trauma...accepting a cancer diagnosis, a major illness, a job loss, etc. how suddenly that person seeks to understand their own predicament and "share" with others facing a similar "plight."

    Really, we are all special, yet none of us are special. You have Alzheimer's, she has cancer, they don't have a home, and so on. We all have "something" at one time or another and we want to understand and be understood. We want to be "special."

    The greatest comfort we can give to one another is compassion and tolerance. You have said in previous posts that in the past, you didn't really have an interest in talking to a person with cognitive issues. Has your thinking changed in that respect? If yes, has it changed because you want to understand for your own well-being or is it because you have a newfound compassion for others?





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    1. First, I really want to clarify that in having difficulty talking with someone with advanced dementia, it's not my THINKING that needs changing. I think I should visit for many reasons, but it's my EMOTIONS that make it so difficult. I understand that it may be different for me than for others, but for me it's the embarrassment (and you're right that it is mostly ego) of not knowing what to say or how to be with a person with whom I can't communicate intellectually. (I'm not very good at chatting in any circumstances.) I am pretty good at listening and feeling compassion and showing it appropriately. My guess is that what I (and others need) is more experience with being with those with cognitive issues.
      Thanks for writing.

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  7. Anonymous5/08/2013

    Dear David,

    I've been following your posts with the widespread, I'm sure, combination of appreciation, admiration and thoughts like "I hope I can be as graceful when the time comes". I see and agree with your observations about the person feeling embarrassment about their condition and the embarrassment of others, especially that the second is probably the more serious cause of the pain of Alzheimer's. But I think another source of embarrassment or pain is the loss of a certain self image. You've alluded to this in earlier posts. Just yesterday I called one African American woman I know by the name of another I know. It was mortifying because I actually have lots of African American friends and these women don't look that much alike. What I mind most is the wound to my self image, my idea of the kind of person I am or should be. I'm not proud of this, but in the spirit of honesty that you have set, I'm putting it out there. Joanne

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    1. I think you're absolutely right that allowing self-image go a little is a great help in dealing with the embarrassment of this disease. And, yes, I have written some about this, most clearly in "Losing Self" in Oct, but also in "Losing My Life" and "Worrying About the Future" in Dec. It's actually been easier for me to do with this diagnosis because the need is so obvious. But it's also never perfect.
      Thanks for this comment.

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  8. Thank you for writing such an honest, insightful, educational, and loving blog. My friend found it first (her husband has been diagnosed with early-onset Alzheimer's). I hope we all can learn more through your patient, giving writing.

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  9. Hi David,

    At first I was mortified to learn of my diagnosis, and was embarrassed that anyone should find out. I think was to do with the fact people would 'see' me differently, as if somehow it was to do with intelligence rather than cognitive dysfunction. I guess that I have always had problems remembering facts and did not want to be thought of as unintelligent. Now as I am telling people I have EO Alzheimer's I automatically say - no dementia. If there are problems that need sorting out with officials etc., I also add - I have poor memory not poor intelligence. I am learning not to be embarrassed because there is nothing I can do about it, and because I care less.

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    1. Thanks you Mrs Hsg. I'd be interested if you notice much abandonment by friends or relatives. One of the big fears of people who are early in the disease and are thinking about "coming out" by actually using the word "Alzheimer's is that they are more likely to be abandoned than by not telling others. What do you think?)

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  10. Hello David...

    Let me begin by confessing that I have been lurking in the shadows of your blog for several weeks ever since I heard your story on a CBS(?)segment. I also tracked down and read the WAPO article. I apologize for not having read all of your posts from the beginning though I am slowly working my way through them.

    My name is Ed Kronholm and I live in Tempe, AZ. I too am a fellow traveler on this slow descent into darkness. I was diagnosed just over 18 months ago in October of 2011 at the age of 60. If you are interested, you can review my own thoughts, albeit from a slightly different perspective... here:

    http://slipslidingaway60.blogspot.com/

    Anyway... to your questions of the day. First, while I know I sometimes now say things that are embarrassing to my wife, I am rarely embarrassed by it. It was just what I was thinking anyway. And now, I am free to say it. As adults, we are more conditioned to be more guarded in our expression. But now, supposedly unburdened by my affliction, I can say the darndest things and not worry at all about what Art Linkletter would think. We all have had those innermost thoughts about one boss or another, the nosy neighbor or that great looking woman across the street. I admit that I sometimes have all those thoughts, it's now some of them slip out of the corral where I thought they were all penned up.

    The wife seems more embarrassed by it all than me. She's told all her friends and all the neighbors about me so she can say...

    "Oh that's just Ed and his AZ... he's having a bad day..."

    ===========================================

    Secondly... contrary to your most public of confessions, I have not told all of my friends and associates about my condition. I too write a daily private flog to about 55 folks across the country and I would say that I have only told maybe a third them. Oddly enough, more of them who know are in more denial about it than I am. They say I have not changed and it's normal to be a little forgetful at this age. And yes, while I still am pretty sharp, I know I am not AS sharp as I once was. I can feel the effects of the disease creeping in from the edges of my mind. Perhaps they are afraid they might be next...

    I still operate a small business and I would like to continue to do so until I can't. Though I still pay my bills (...when I remember to...another story...) My wife has assumed overwatch of my financial affairs.

    I promise I'll finish reading your posts and will likely post again as you have other questions for us fellow travelers. Let me close by recommending a book if you have not read it. It's called "Alzheimer's from the Inside Out" by Richard Taylor, a retired psychologist and teacher who had labored with our shared burden for five years at the time his book publication in 2007. I highly value his insights for early onset sufferers like ourselves and our caregivers.

    Best wishes...

    eD

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    1. I'm fascinated by your noticing that you now say things that are embarrassing to your wife but not to you. I'm assuming that they would have been embarrassing to you before the onset of the disease and that you've changed.
      I have wondered occasionally whether what I've just said is inappropriate but no one has mentioned anything, so I think I still have that joyful experience coming.
      You haven't told many of your friends and associates about your diagnosis yet you have a blog that announces your name and diagnosis and you have just done the same thing here. I'm curious as to why you haven't told the other friends yet have made your diagnosis so very public.
      The denial of friends and family is fascinating ... especially the lines about how normal it is to be a little forgetful or how "I'm always doing that, too." I agree that at some level they are afraid they may be next. "meganthemegan" writes in one of her comments that "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."

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