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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, May 02, 2013

Embarrassment (1)

Washington DC
Rachel, who reads this blog regularly, recently emailed me about her father, a retired physician with “vascular dementia” ie, caused by small strokes.  When her father first started having symptoms, Rachel and her mother refused to accept a doctor’s diagnosis and, until her father’s symptoms worsened a year later, never mentioned the word “dementia,” even though her father seemed to have significant insight into his intellectual limitations and got on with his life within those limitations.  He’s now in a nursing home, confined to bed, and can’t walk or feed himself although Rachel still enjoys her visits.  “Some days I might be his daughter, other days I might be ‘a girlfriend’ or just someone he knows.   I get rewarded by this and his humor which helps my heavy heart.”  But Rachel wonders why his many friends from his life before dementia have stopped visiting him. 

Rachel’s mother developed symptoms about a year later, apparently from Alzheimer’s.  Unlike her father, Rachel’s mother is still in “cover-up mode,” not yet acknowledging her diagnosis, hiding her symptoms skillfully from other people.  She and Rachel collude with one another, ignoring the impact of the silence on their relationship.

Rachel met one of her mother’s friends in the store who asked, “What’s wrong with your mum?  Has she been given a diagnosis?”  Rachel was unable to tell her mother’s friend the truth.  In fact, she covered up for her mother, making the usual excuses, because, she said to herself, she didn’t want her mother’s friend to stop visiting!  The questions make clear, of course, that the friend already knew: There was something wrong and it was some form of dementia.  The secret, however, though hidden in plain view, had to be kept secret.  The friend knows yet has to pretend she doesn’t.  Rachel herself feels the embarrassment to the point of shame.  My own guess is that the friend would visit more often if things were out in the open.

The common theme throughout Rachel’s experience is embarrassment and shame.  In retrospect, Rachel can see the shame first descending when she and her mother refused to acknowledge her father’s dementia—despite its obviousness to both of them, despite even her father’s acceptance of his symptoms.  When her mother began having symptoms, mother and daughter again continued the denial. 

Shame and embarrassment hover like clouds over dementia, especially Alzheimer’s.  When Rachel did finally begin talking about her father’s dementia, in fact, she noticed how much more comfortable it was to talk about her father’s “vascular dementia” than “Alzheimer’s.”  Rachel acknowledges that most of her mother’s friends know that she “has lost it” (as they like to say), however not one of those friends has mentioned the word “dementia” to her.  The word “Alzheimer’s” is still not mentioned around their home.  There’s an overpowering taboo: We all know what’s going on, but we don’t want to acknowledge it or face it. 

Why do her father’s friends stay away?  My guess is that they’re afraid they won’t know what to do in the presence of dementia, that they’ll be embarrassed by Rachel’s father’s condition.  What do you say, after all, when your old friend doesn’t remember you or repeats himself every five minutes, or does something else embarrassing.  (I certainly had those fears before my diagnosis and to some extent I still do.)  We believe we’ll feel uncomfortable, so we stay away, leaving our friend suffering not only from limited cognitive function but also from isolation and perhaps increasing shame, too.

I recently listened to a brief podcast in which several experts were asked to respond to the question of why people fear Alzheimer’s so much.  None of them mentioned embarrassment or shame as important factors, which seems astonishing to me!  Isolation may be the worst part of the diagnosis, and shame and embarrassment are the primary causes of isolation.  If we don’t recognize the embarrassment, much less acknowledge it, we can’t confront it and work it through.  Through writing this blog and reading the comments and emails, I’m beginning to think that embarrassment and shame are among the worst parts of this disease.

There are over five million Americans with Alzheimer’s, more if you include other forms of dementia.  By the time we reach 85, half of us will have Alzheimer’s.  This is a common disease that almost everyone has some direct contact with, yet it’s somehow become shameful.  It’s all around us, yet it remains hidden in the closet, causing so much isolation and fear.  It’s past time we got it out of the closet and into the light.

33 comments:

  1. Couldn’t agree with you more. Hopefully you and others like you will help remove the stigma.

    I also wonder if the thought of dementia stops most people in their tracks because it shatters one of our most widely held illusions – the illusion of control…

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    1. Yes, certainly if our mind is going to go, our illusion of control will go, too. Paradoxically, in my own situation I've been grasping for control most of my life, so the Alzheimer's gives me a chance to let that pursuit go. To the extent that I've been able to do it, it's been quite liberating.

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  2. Anonymous5/03/2013

    A friend of mine asked if she came over would my husband know her. That comment stayed with me. I guess she thought because he had a diagnosis of dementia that he his memory was instantly gone. It a very taboo disease and that is a problem

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    1. Our picture of the disease has been so shaped by media images of the doddering old man or the woman lying semi-comatose in the nursing home, that people forget that there are lots of stages that come before that. It's one of the reasons, I'm advocating for more openness on the part of those who have early disease .... although as Carry-Me-Away suggests below other people who have been open may have found friends staying away because it's out of the closet.

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  3. A wise being once said,and I quote, "We have nothing to fear but fear itself" (Senator Foghorn Leghorn, I believe). Ideas are powerful and just ideas. Words are powerful and just words. Realizing illusions is healthy,though uncomfortable. A concrete reality is we are all together everywhere. And we are blessed.
    Gassho, Edward

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  4. Thank you, David. Rachel and your other readers might be interested in the New Old Age article in the New York Times a few months ago about a group of friends who vowed to continue to visit their friend with dementia on a regular basis until her death ("For the Love of Sunny"). I found the article very moving, as I cared for my mother for 8 years as she declined with dementia in my home, assisted living, a memory care facility, and a nursing home, passing away in December. Like Rachel I found ways to enjoy my time with Mom (right up until her death), but her old friends fell away very quickly. I brought in new friends (paid friends, like a massage therapist and an elder care aide), who developed friendships with Mom even as she lost her language, ability to feed herself, etc. As I write in my book "Inside the Dementia Epidemic: A Daughter's Memoir," dementia caregiving can be not a "long good-bye," as it's often called, but a "long hello." There are ways to communicate and connect with the person with dementia all the way through the final stages.

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    1. Thanks you, Martha. I wonder if one of the important principles in managing this disease is to prepare consciously for the various phases. Before the friends fade out, would it be possible to work with them and make deliberate decisions about how they might remain involved? If the person with Alzheimer's herself participated in the discussion, would there be a different kind of incentive for the friends to stay involved? Might there be a way to work consciously with the awkwardness, embarrassment and helplessness that the friends will ultimately feel? These are just questions on my part; I'm a long way from that point, but already I am trying to prepare my community for the various stages that are surely coming.
      BTW, the NYT story that you reference, Martha, can be found at the following URL: http://newoldage.blogs.nytimes.com/2013/01/28/for-the-love-of-sunny/ Copy that address and put it in your browser's address box. It's a short, inspiring story and well worth reading.

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  5. Anonymous5/03/2013

    "By the time we reach 85, half of us will have Alzheimer’s."

    I think the above statement is another myth, if not an urban legend.

    The misunderstood statistic is: of those over 65 years who have dementia, 50% are over 85 years.

    But that is not the same as saying 50% of those over 85 have dementia.

    Thanks for your interesting blog.

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    1. I think the statistic that half of people 85 and older have Alzheimer's is correct. One of thee references is Alzheimer's Association's 2011 Alzheimer's Disease Facts and Figures, p 12, which can be found at:
      http://www.alz.org/downloads/facts_figures_2011.pdf
      The exact quote is "Nearly half of people aged 85 and older (43 percent) have Alzheimer’s disease." That statistic seemed so overwhelming that I didn't believe it at first, either, but it seems to be true.
      (In my defense, I know that 43% isn't half; most of the places I've seen the figure on the web say 50%, but I would accept this source that I just found as authoritative.)

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  6. It is not only the shame and embarrassment of the person with dementia and their family that is at play here, though. It's important to remember that people's fear of isolation is not unjustified. I would be interested to hear whether others who have been open about their diagnosis have in fact found that more people stay close, as you suggest would happen. I can see some drawing closer and others drawing away out of their own embarrassment.

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    1. I am sure you're right that some would draw closer and others would draw away. We've talked about this in our community and I'm sure that some of my good friends will go one way and some the other (although I am hoping that we can work through much of the embarrassment issue by continuing to talk about it). Having a community around me, however, I'm hoping there will be enough who draw closer.
      But I, too, would be interested in hearing from some people who have made their diagnosis public while still in the earlier stages. What has been the reaction of friends? Have they pulled away or come closer? Do you have any sense of what has made a difference in which route a person chooses?

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  7. Anonymous5/03/2013

    David,
    I have no words adequate enough to tell you how important your blog is to me. I wish only that there was a companion piece written by your wife expressing her views on the same event or idea.
    Regarding embarrassment and shame: In a world that is perfect, doctors would all give the diagnosis that you have been given - progressive cognitive impairment. Those words clearly describe your condition (and that of so many others like my husband.) Once a “label” is given, however, it is another story. A diagnosis of dementia or Alzheimers attaches itself to any number of negative emotions. As a long time special needs educator who has sat in on any number of meetings with parents, I am only too aware of the effect that a label has on people, even those who dearly love the child being “labeled.” It broke my heart. I tried with all my heart to tell the parents that this was the same child that they knew and loved. That he/she was not a label. Still, it was such a challenge.
    As a result, I am more than a bit reluctant to share a label with friends and acquaintences or even with my husband himself.

    Once more, I can’t tell you how much your blog means to me but just wanted to share my feelings.

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    1. Thank you for writing. Our plan is that my wife Marja (and some others, actually) will write guest posts. Marja did one in March, "Denial and Such," and I hope there will be more.
      You bring up the important issue of "labels." It's not a simple issue, it seems to me. On the one hand, labels get so laden with cultural meaning that they become, for all practical purposes, not really descriptive ...and sometimes destructive. On the other hand, it's important not to hide from the realities, either, and labels do encourage us to see the truth.
      We could all use the term "progressive cognitive impairment," but soon that would become a label, too, and we'd have to create something else.
      The other terrible problem with a label is that the label can be used to define all of me. I may have Alzheimer's but I also write, ride my bicycle, visit my grandchildren, go canoeing, get angry at injustice and on and on.
      So there are lots of dangers with labels, but I can't see a way around using them. We just have to be careful with them.

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  8. Spot-on blog. Friends of people with Alzheimer's and other dementias are busy and they don't know how to "be" with a person who has this disease. The first thing they have to do is slow down! The second thing is to get curious and present. I was very moved to once read that in some cultures, they don't recognize dementias as disease; They just have people in their midst who are in an altered state, which everyone recognizes and no one is embarrassed about. In our culture, some people are afraid of "altered mental states" but others are just hampered by not knowing what to do, how to be, or how to even talk about it. Thanks for the post.

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    1. Your comments about "being with" and learning to slow down, remind me of Joseph's House, our home and hospice for homeless people with AIDS and cancer. Every year we get three or four year-long interns, usually just out of college. When they first come, they are eager to "do something" for the people who are sick and dying, and they are very uncomfortable when there is nothing to DO that will help things. But we put a great deal of emphasis on slowing down, on being present, on not-doing, on listening, on being curious and so on. And within several months these interns have been transformed. They have learned to be with people who are dying, and those experiences become for them some of the most valuable in their young lives.
      So dementia is another opportunity to slow down; for many of us it's difficult, embarrassing, painful at first, so it's easy to quit. But how much life we gain if we don't quit.
      Thank you for writing.

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  9. The family genealogist has all of our gr gr grandfather's letters from the Civil War. In most letters, he asked if his Father's mind is better. We have lots of pictures of our ancestor sitting with a group of people and you can tell he's not really paying any attention to the others in the picture or the camera.

    I don't understand why people would be ashamed or hiding the illness. Would we do that with cancer? No. Its not a character flaw. There is nothing bad about us.

    I do know a lot of people are nervous because they don't want to offend the person they feel they used to know, and now they don't feel as if they really did know them.

    I went to nursing school in New York state. The LPNs were floor nurses, the RNs were paper nurses, so I wanted to work on the floor. I moved from NY to Colorado, and went to a hospital, ready to work. "Oh we don't use LPNs here." so what was left? A nursing home. I walked in the door the first day, to a patient peeing in the corner. A woman in the dining room was shrieking. OMG what had I done? By the end of that first day, I knew the reasons for the guy peeing in the corner (he had to go right after meals to be continent), the woman shrieking in the corner was scared of being alone. All you had to do was sit down, and she became a social butterfly joking and talking. If we could all spend a few days in a long term care setting, and we could see them as people, it takes away the fears. I have found because of my times in special care units that I can talk to anybody about anything. I can chat with a stranger, and its simple. Just realizing they are as human as I am, they love, they fear, they get angry, they get sad. I find that I tend to hug the women, but I tend to be a bit standoffish with the men, because they sometimes misunderstand the affection. So I pat them, or give them special goodies, etc.

    But so many people need to realize that they are the same person they were before, just quieter. And then you can have as much fun around them as you would anybody. I can't sing on key . But I find it very easy to sing to them. Nobody should be ashamed because its nothing to be ashamed of.

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    1. Lee An:
      You have a great deal to teach us, and I'm grateful for this comment and many others you've written.
      Most people don't see these comments, though, and I would love to have you write a guest post. Could you contact me so that we can communicate directly? Go to my website: www.davidhilfiker.com, click on "Contact me" and write me a brief note.
      Thank you for this story.

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    2. Anonymous5/12/2013

      Lee Ann:
      You hit it on the head " Just realizing they are as human as I am", My Dad has Alzheimer's and lives with my husband and me. I still have 2 sons living with us (20 somethings). What pierces my heart more than the disease is that more often than not they don't even acknowledge his presence. Just a simple hello - they might be surprised to get a smile in return!


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  10. The stigma that is attatched to dementia is similar to the stigma of having a mental illness. We are afraid for all sorts of reasons. People steer away from the mentally ill as they fear what the person might do or say that is not within the norm. Depression, a mental illness is slowly becoming more acceptable as "celebrities/politicians etc are becoming less ashamed and more willing to say that they suffer from the illness.
    bi polar is also becoming more "acceptable". We as a community are therefore starting to see depression as not shameful or as something to hide.
    Hopefully in time this will be the case with "dementia" and with brave souls like David writingabout their own experiences with alzheimers/dementia publicly will help breakdown the barriers around this illness, allowing people to see that it is only an illness and that those suffering from it deserve to be accepted and treated with respect by their friends and their community.

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  11. Thank you, Tova. I agree that a primary reason we get embarrassed is that the Alzheimer's patient may break the social norm. One issue, of course, is that breaking these social norms is limited to only one part of the illness. When a person is early in the disease, it is unlikely to happen and later on in the disease, the person is unable to violate social norms. But one important image of the disease comes from this stage of the disease.
    I examine this further in the next post.

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  12. I am reading the book "Talking to Alzheimer's". It is all about how to connect when you visit with a family member or friend. This has helped me be more confident when visiting my uncle. He is far along in his alzhemer's and I wanted to feel confident that my visits with him were enjoyable for him, not a stress. The more time I spend with him, the more we enjoy each other. It has been a gift. He is still the man I've always known, just more quiet. I love your blog. It helps my fear for myself and my family because we cannot help but imagine - if I get Alzheimer's.....
    Thank you.

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    1. Thanks, Marilynn:
      I only hope that people who don't know what it's like to be with people who have Alzheimer's can read the wonderful posts like yours (and there already lots of them on the blog) that can add a dose of reality to all the scary ideas and images that make up popular perception.
      Thanks for the tip about "Talking to Alzheimer's." I will need it just to spend some time with others who are further along on the journey

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  13. Just FYI - not addressing post content.
    http://people.csail.mit.edu/seneff/EJIM_PUBLISHED.pdf

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  14. Anonymous5/05/2013

    For many years I didn't openly talk about my fathers vascular dementia and decline. There were many friends of mine that didn't see my father, that didn't even know what was going on until years into his decline when I finally shared. I always felt somehow i was protecting my dad. From what? The pity of others I guess. Maybe part of it was because my dad never accepted his diagnosis. I was well aware of what was going on,even before my other family members, but somehow I just couldn't bear others knowing my dad was so declined. That his wit and humor and competency was disappearing, and now gone. I never really thought about it in terms of shame. I will continue to think about this.

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    1. It would seem so hard to visit a person who had significant symptoms of Alzheimer's without permission to talk about the elephant in the room. Unless people with Alzheimer's can come to some kind of acceptance, I'm afraid, they will lose more and more of their friends who may care but don't know HOW how to visit.

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  15. Michelle Gibson5/06/2013

    I dont think its embarrassment David but selfishness or being self absorbed.I think this illness wouldnt be anymore singled out than mental illness or a family with a disabled child ,a person going through a difficult divorce,it is uncomfortable ,boring and unrewarding for the long term visitor so they stay away .

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    1. I hope you're wrong, Michelle. I have only to think of myself. I don't think of myself as more selfish or self-absorbed than most people, yet I would be afraid that such visits would be, as you say, "uncomfortable, boring, and unrewarding for the long term." So I would tend to put them off, they would fall to the end of the to-do list, and never happen. I'm not proud of it, but that's what would happen in my case unless I made a very concerted effort to be different.
      I'm hoping that if more stories like the ones here that show the delight of relationships and the possibilities for rewarding interactions, the behavior of people will gradually change.
      But, then, I tend to think the best in people.

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    2. Michelle Gibson5/06/2013

      I hope so to,and of course I wasnt thinking of you or other very kind loving people.But My experience is people have disapeared when I have had depression,now that we have rebellious teens in the house,they left when my mother went through a bad devorce and my husbands grandmother had dementier.I think the best of people also they are just "busy".

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  16. Michelle,
    I read your comments and was thinking about my own life experiences, both as the one not doing the visiting and the one wishing for them. I believe it also has to do with as David so aptly put it, the elephant in the room.
    We also worry too much about saying the wrong thing. Silly isn't it, because then isolation continues.

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    1. Michelle Gibson5/07/2013

      Yes Marilynn for some it just seems to get too hard,they may sustain it for a short period but long term it depends on "what do I get out of it".Some it is just love of that person that can be enough ,I know for my husband and I thats why we kept feeding and visiting his grandma,and why after 10 years I am one of the only ones that still goes to the cemetry for my mother.I just wanted to point out that I dont think it is embarrassment that keeps them away.

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  17. Anonymous5/08/2013

    Some thoughts as a mental health practitioner;

    there is something intolerable to us culturally about 'neck up' health issues and it seems this extends to Alzheimers.

    As Rachael comments.... the term 'vascular' dementia is more acceptable to her peers and family.

    In the same way that a 'nervous breakdown' implies something medical ( failing of the central nervous system)... skimming over the psychological basis



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  18. Anonymous5/08/2013

    also, to add to the thread about what keeps people away I think it says a great deal about a persons level of tolerance for pain as well as life's reality and denial about its harsh, cruelness - as well as survivor guilt.

    If I dont see it, it doesnt exist and wont happen to me and I wont need to feel the pain.

    the shrinks out there can probably name this surval-based behaviour!

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    1. Perhaps another element in this is the tendency of people to think that any mental impairment is "just" psychological and there for the patient should be able to control it. We tell the depressed person to "just snap out of it," the person with ADHD "discipline yourself," the anorexic to "just eat more." People may feel differently late in Alzheimer's disease, but earlier when the symptoms are primarily weird behavior, we think the person should be able to "control" himself.

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