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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.

Friday, April 05, 2013

What Happened to My Fears?

Washington DC
Things have been crazy since I got back from my California trip!!  There have been almost 50,000 page views on the site, over 70 comments, one interview from CBS This Morning, requests for six radio interviews, and lots of emails.  It’s been overwhelming but it’s an exciting confirmation of the importance of bringing Alzheimer’s out of the closet. 

In response to some of the emails and comments, this post and the next will be about the cultural fear of Alzheimer’s.  Curiously, I’m not afraid of this disease, but why not?  What is it, exactly, that I should be afraid of? 

What was I afraid of before I knew my diagnosis?  It’s hard even to remember.  I don’t think I ever put it into words.  So let me imagine what I would have been afraid of a year ago.

Helplessness and dependency: I’ve always been independent and can take care of myself.  It would be awful to have to depend upon another person to tend to my needs.  I would hate imposing on them—especially Marja—unfairly, becoming a burden. I don’t want to be helpless.
 Loss of intellectual capacity: What I’ve done in my life has been dependent on my intelligence and intellect.  To exaggerate a little, I’ve always been the smartest guy in the room.  Who would I be if I lost most of my intelligence?  How would I spend my time, if I couldn’t use the computer, couldn’t write, couldn’t even read?  Everything that gives me joy would be gone.  What would I actually do?
 Embarrassment: How would I survive the embarrassment of diminishing memory and intelligence?  It would be terrible to forget a friend’s name or to repeat myself over and over because I couldn’t remember what I said five minutes ago.
 Rage: What if I became one of those people who flies into a rage at the drop of a hat, who yells obscenities, who causes pain to others?
 Isolation: How would I tolerate the isolation?  People would react the way I’ve usually reacted to people with diminished intellectual capacity, with the embarrassment, even the shame that Alzheimer’s carries.  They wouldn’t know what to say.  And so they’d abandon me and I’d be alone.
 What would it be like to be incontinent of feces? to have to be wiped after every bowel movement into my diapers?  How could I tolerate that?
 What would it be like to lie there in a nursing home unable to carry on a conversation, unable to relate to anyone, unable to remember who anyone is?

So I was afraid then.  Why am I not afraid now?  I’m not completely sure but:

·      Before I would have feared that even this first level of symptoms would be painful, but instead it’s been rewarding and positive.  What does that say about the rest of my fears?
·       My fear was based on my assumptions as a non-demented person thinking how awful it would be.  But I now realize that because of the stigma and silence that surround the disease, I didn’t actually know what the experience of a demented person was.  (I'll write more about that in the next post).
·      If I examine closely each of my fears, what exactly am I afraid of?  Isolation is really the only one I fear.  The rest of it would be embarrassing or unpleasant, but I’m not afraid of them? 
·      I’ve had no embarrassment in telling others and the response of people close to me has been overwhelmingly positive.  My worst fear—of isolation—has been put to rest.
·      It seems to me quite possible that as things become worse, my dementia itself will change my reaction to what’s happening.  With increasing cognitive impairment, I may not find my symptoms as painful as I feared.  Obviously I can’t be sure about that now but, given my experience so far, it seems to me quite possible.

So for me at this point, there is no fear.  But I want to read more comments about the inner experience of Alzheimer’s.  If you have Alzheimer’s what’s your inner experience?  If you don’t have Alzheimer’s but have asked people with the diagnosis about their subjective experience, tell me what you’ve heard.  And finally I’d like to hear from people who don’t have dementia but are afraid of it: What are the specific reasons you’re afraid? 

So far I’ve received lots emails and comments from people with positive experiences with the disease.  I’ve been surprised that I haven’t heard from more people who have experienced the disease from the inside who think I’m na├»ve, who are saying to themselves, “Just you wait!  Tell me in 3 years that it’s not so bad.”  So help me out with your comments.

The next post will be about why the fear is so strong in the culture.  How do most others perceive the disease and how does that contribute to their fear?  I have some ideas.

18 comments:

  1. A wonderful post!
    I helped my grandmother as she moved through Alzheimer's and in our discussions she did mention having fears - early on when first diagnosed certainly but the worst of them came in the early-late stages. She would have these moments of absolute clarity and she said she felt as if she was losing her sense of 'self' and who she had been. She also exhibited high levels of paranoia and a generalized anxiety throughout her course. It's hard to put into words but it seems to me that when the clarity faded she was much more peaceful. It was as if *awareness* at the later stages was most troubling to her. Granted, I do believe every person's perception and experience with Alzheimer's ...the person who has it and the caretaker(s)... is different (yes, there are elements in common but also many that are unique). How you lived your life, the fears you had and experiences that created those fears shape the fears that can manifest with Alzheimer's - my Grandmother had many fears in life (having lived through a war) so I believe this framed her Alzheimer's.

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    1. Thank you, Lisa, for your comment. I've been hearing almost exclusively from people with positive experiences, and it's too easy to generalize and draw easy conclusions. But it's important to know that the disease is much more complicated than that.

      Your comments about the pain she felt in losing her sense of self and who she had been brought me back to a long Buddhist meditation retreat several years ago, when I finally understood the suffering that results from hanging on to one's sense of self. The Buddhist say we have no self. I'm not sure what they mean, but for me it means that we don't have one self that persists throughout time; our self is constantly changing. The change may be painful or pleasant, but we turn it into suffering when think that "then" was the real me, while "now" is not really me. When I can learn to see my self and understand that now -- here and now -- is the only self I have, then I can live in the present and it's so much easier. The only thing anyone can ever say is that this here, right now is my self: Can I be present to it?

      Thank you very much for your story.

      David

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  2. There should be no shame or embarassment in finding out you have the symptoms of AD. You definitely are not alone in this. Its not as if you picked this for yourself. Its all a part of the journey.
    I have been reading through your blog and its quite fascinating to me, as I have been a nurse in long term care, and special care locked units for over 20 years. And lots of people are under the assumption that they lose everything. They don't really lose everything, some things become more important, some things beome less important. And, as my daughter tells me, "Don't worry about being violent when you're demented, We'll medicate you." She has a twisted sense of humor at times, lol.
    People retain a lot of their personality through most of the journey in AD. One woman was discussing with me how wonderful her husband, Tom, had been for 65years, never a mean word, always loving, she looked like a bride, thinking of her loved one. So ten minutes later, her husband came in to visit and I hoped she was still on the same wonderful bride journey, so I said, "Tell this man about your wonderful life with Tom." She looked at me in shock, and said, "OMG I married him?" So much for giving him a pat on the back.

    People with dementia are still just regular people. It seems tho that their reality is spread out over time. If you know someone for a long period of time, you can get the full story. It just seems as if things have gaps between them. And they are just as loving and needing love as anyone else. And they soak up love like a sponge. for someone, in nursing to care for people, a locked unit of people with ementia is a love place. You can hug more, love more, and it is gratefully reciprocated. So it is just a continuing part of the journey.

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  3. I just wish everyone who's beginning on this journey with Alzheimer's could read your comment (as well as many others scattered through out the blog). As a person with very early symptoms, I'm comforted to hear from you--who has so much experience--that we "don't really lose everything," that somethings may be lost but others gained, that we maintain our personality, that we can still tell our story, that we can still give and receive love.
    Obviously, I would never choose this journey (none of us gets to), but neither does it frighten me anymore.
    Thank you. Thank you.
    David

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  4. Michael Grajek4/07/2013

    Thanks David!

    I'm not sure (and that has been my dilemma for a long time) if what follows is, overall, a positive or negative example of the effects of the disease. For over a decade I visited my parents every other weekend to give my father a "break" from the non-stop care of my mother. Especially towards the end, they would occasionally get into arguments (something I never saw in the previous fifty years of my relationship with them). The argument would usually go something like this: Dad: Please get ready to go to church. Mom: you didn't tell me we were going to church today! Dad: I did many times earlier today. Mom: No you didn't. Dad: Yes I did ... and so it would go, until Dad gave up. Three minutes later, Dad would still be stewing, and Mom would be her usually cheerful self, having totally forgotten the argument. Surely it is a gift for Mom to be able to forget an unpleasant disagreement with one you love so quickly, but such exchanges were so frustrating for Dad, because he always blamed himself for "starting" it. I think it happened because he spent years almost denying that she even had dementia, and years more failing to accept her new "self."

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    1. Thanks, Mike. Good to hear from you. I wonder if the hardest part of the middle of Alzheimer's are the emotional and psychological change. Certainly some of the changes -- anger, even rage, loss of inhibition, hyper-sexuality and others -- are very difficult and painful for the caregivers. The other question I have is whether those changes are pretty much hard-wired in or is there some kind of preparation, some kind of pre-therapy that might make a difference.
      I wonder.

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    2. Michael -

      I often think this illness is harder on the caregivers/family than on us. I learned when dealing with my mom's AD to 'let go' of logic and reason (not an easy task). If she thought I was her childhood friend rather than her daughter, time to ask her questions about the 'Lolo-me' -- "What games do you and I enjoy? What songs do we like to sing?" Those memories were crystal clear for her, and I found the answers fascinating, giving me insight into the life of my mother as a young girl. Of course, an hour later, she would say, irritated, "You're not Lolo, you're Megan, my daughter!" Then it was time to switch back to 'Megan-me' and say, "Why of course! I was confused! So what music would you like to listen to? How about some reggae?" (She fell in love with reggae music in the process of her AD journey :)

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    3. Megan:
      Your way of responding to your mother when she perceived you as a childhood friend is very helpful, it seems to me. As a physician who sometimes dealt with psychotic patients, I rarely found it helpful to fix their perception but rather to "get inside it," to empathize with their experience rather than insist on "reality"-based reorientation.
      It's not exactly the same, I would think, in Alzheimer's but the main point if not being concerned about re-orientation but with presence and empathy.
      I'd be interested: With psychotic patients I tried to be careful not to play into their psychosis: Rather than saying, "Yes, I'm Lulu," I would respond as Lulu might, especially asking questions rather than making statements. What is your experience?

      David

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    4. Something that I find very touching, is to be sitting with an AD patient and their child. And to ask the patient about her children. Of course, her son or daughter is upset that they aren't being remembered. But it is amazing to watch the patient glow, talking about her child, the school work, the play, Christmas when he was five, the smiling and obvious love. They are focused on losing Mom, but when they can see their Mother's obvious love for them, it does help, I think.

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    5. David -- yes -- they key is asking questions or suggesting activities, rather than focusing on the "who's who". I learned not to argue ("I'm not Lolo, I'm Megan, your daughter) NOR to agree (i.e. I would not say "Yes, I'm Lolo". Instead, I found asking questions -- guessing at what little girls might want to do -- was the best way ("what game shall we play? what song should we sing?").

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  5. Here is a blog that may be of interest to you--
    http://living-with-alzhiemers.blogspot.com/

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  6. I too (also smarter than the average bear) was diagnosed 3 years ago at the UC Davis Alzheimer's clinic.

    I have found that living 'in the moment' is MUCH easier now...and what great joy and beauty you can find in each moment! It's just getting to the next moment that trips me up sometimes.

    While I had to leave my job as a computer programmer, can only drive in a very limited local area (and I'll be letting go of that sometime soon), there is much of my intellectual capacity that remains intact. Yes, I am losing my mind, but I'm doing it brilliantly!

    After loving discussion with family and friends, they understand that at some point I will make the choice to end my own life before more severe dementia sets in. This is not out of despair; it is just because I choose not to spend that last 10-12 years of my life (and all my remaining $$) staring out of a window with little recognition of anything other than food (this is how my mother's and grandmother's AD manifested). As I am on Aricept and Namenda (plus a vegan diet-- who knows???), my AD trajectory may be less severe, according to some studies -- and of course, my planetary exit may take some other form. Another AD lesson: "You know, you never know"

    Thank you so much for your excellent blog!

    My occasional blog at http://spellworldbackwards.blogspot.com/

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    1. Megan:

      I love the inside joke in the title of your blog.

      I love your line about loving the moment but "It's just getting to the next moment that trips me up sometimes."

      I love: "I am losing my mind, but I'm doing it brilliantly."

      Thanks also for writing about ending your own life. In a response to my post on “Adventure” on March 28, Richard Fox asked why more people with Alzheimer’s didn’t commit suicide, and there have been enough other references to suicide in these comments that I hope to do a full post on it (using much of my response to Richard) in the next week or two. I’d love to hear your response to that post.

      I'll finish up here with a paragraph from my response to Richard’s comment:
      Many people with Alzheimer’s lose their ability to suicide before they decide they want to go through with it. The novel "Still Alice" is written by a person with a lot of experience with Alzheimer’s patients but from the point of view of an intellectual college professor with early-onset Alzheimer’s. She decides she will suicide when it gets "too bad," so she places a bottle of pills strong enough to kill her in the medicine chest. To it she attaches a note to instructing her future self to take the pills after she has passed a certain point in the disease, which she describes in detail in the note. Over the course of her disease, she discovers the note at various points in her decline but gradually loses the capacity to remember what she meant. Ultimately, she wonders who this woman is who is trying to kill her by writing notes to her.

      Hopefully we'll be in conversation.
      David

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    2. Thanks so much David.

      However -- as I said, 'you know, you never know', and I need to add a qualification to ending my life: I will do so before my dementia is severe AND when I can no longer be helpful.

      My daily awakening prayer is "Thank you, God, how can I help?" While I don't necessary believe in a singular 'God' (male, white beard, with anger management issues), I do believe in a loving force that I try to align myself with by beginning each day saying 'thanks' and asking 'how can I help?' -- and a waaay cool answer came the other day.

      I will be a guinea pig in the LMTX Phase 3 study now underway. This drug goes after the tau tangles (as opposed to the beta amyloid research that U.S. Big Pharma has been jamming up the research with the past 15 years IMHO) and Phase 2 trials look positive. http://morallowground.com/2012/10/30/taurx-lmtx-alzheimers-wonder-drug-enters-phase-iii-trials/

      So it looks like I will be on the drug or on a placebo for 18 months -- but then followed by 12 months of the actual drug itself.

      So we'll see where my cognitive state is at that point. You know, you never know.

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    3. I like that you are going through it brilliantly! LOL. I used to take care of a "pod" of rooms in a very fancy unit, and three of the 13 were Manhattan project Engineers (who very obviously didn't know each other anymore). We used to joke and say that their brain truly was completely filled up and so full it must be running out of their ears. lol.
      Add coconut oil to your diet. Its good for tangles and good for a dog's coat too.

      I used to say that before I got bad, I would have ended it too. After working for years with AD patients, I don't think they are feeling so bad. If someone's cognition goes backward, due to the tangles of AD, someone that is at a 3 year old stage, is just as happy as any other person at 3 years of cognition. Even someone laying in bed, incontinent, etc. and everybody says they want to end it before they get to that point. What is bad about being warm, dry and comfortable as a 6 month old baby? Perhaps even at the end stages of AD, comfort, love, warm, dry, full of food, means a lot. At the end of a long journey, when you are all tuckered out (whether it is a vacation or a life, being warm,, dry and comfy isn't all bad.

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    4. The stories you've told in other comments, Le Ann, from this post (above) to "What Happened to My Fear, "Why We Might Fear," (5 Comments) to have all been wonderful stories that we would do well to contemplate.

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  7. Anonymous10/20/2013

    To meganthemegan

    I just want to tell you that getting onto the LMTX Phase 3 trial by TauRx is the absolutely best thing you can do for yourself! I know of anecdotal evidence from real people who had been on the Phase 2 trials, and the results were really miraculous! The best thing is that the drug still works for them even after a few years, so the retardation of the Alzheimer's Disease is real and not just symptomatic.

    Hope you will be on the real LMTX drug from the start, but even if you are on the placebo, you'll be given the real drug anyway after the trial, so I want to encourage you to hang in there!

    Hope to read about your progress in your blog while you are on the trial, as this will encourage fellow AD sufferers.

    Take care and may you have a miracle too.....

    Best Regards.
    JK

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  8. Anonymous10/20/2013

    To meganthemegan (an update to my previous post)

    I just dropped by your website and WOW! I'm just so glad that you are seeing a real difference with the TauRx Phase 3 trial in just 6 weeks!

    Perhaps David will allow me to link your blog here for reader's easy reference:
    http://spellworldbackwards.blogspot.sg/2013/09/the-trial-drug-is-working-and-my-life.html

    Do keep us posted.....it's a real encouragement for AD sufferers and caregivers too!

    God bless.

    Best Regards.
    JK

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