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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.

Tuesday, October 22, 2013

Cushion?

Washington DC
I’ve begun to read Daniel Kuhn’s Alzheimer's Early Stages.  The book is directed toward “care partners” (his word, as opposed to “caregivers”) and not particularly toward the people with Mild Cognitive Impairment (MCI) themselves, but my reading has so far stimulated my thinking.  He writes about hearing the diagnosis:
 [T]he person with the disease usually receives the diagnosis with little or no emotion and few if any questions. … Those with AD [Alzheimer's disease] seldom grasp the full implications of the diagnosis.  Even those who are well aware of their symptoms ordinarily do not appear overwhelmed by the news.  It seems that the ability to understand the magnitude of the situation may be blunted by the disease itself.  Those with AD typically do not share the same perceptions of the disease as others close to them.  In a sense, the disease is often accompanied by a cushion that softens its meaning for the affected person.

 This raises the question, of course: Where does this cushion come from?  Kuhn suggests that it’s because the person with Alzheimer's does not grasp the full implications of the diagnosis as well as a person without impairment might receive a diagnosis of, say, terminal cancer.

In my case, at least, I would argue the point.  It’s certainly true that upon receiving the diagnosis I showed little emotion and had no immediate questions.  It’s true that I didn’t share the same level of grief as others close to me.  But I don’t think it was because I failed to grasp the “full implications” of the diagnosis.  No one really understands the full implications, of course, until he or she begins to experience them.  But I knew what was coming as well as anybody!

So what does explain why the diagnosis caused me so much less shock than it seemed to cause others around me?  I don’t have a good answer.  I suppose it could be that my deep introspection precipitated by my previous depression and consequent decision to leave medical practice left me more prepared for an overwhelming diagnosis like Alzheimer's.  Perhaps it had to do with my history of meditation and the recognition that as long as I was able to remain in the present, I had no reason to fear.  Perhaps it was because I hadn’t experienced anything frightening yet, and was more interested in the diagnosis than afraid of it.  Perhaps I realized subconsciously that the experience of the disease is worse for others than for the affected person.

Or perhaps I’m just an inexplicable exception.  That seems unlikely, so I wonder if others have had similar experiences of a cushion upon hearing their diagnosis. 

I would like to hear from you, either as a comment or in an email (see “contact me” above.  What was your reaction to finding out?  If it was similar to mine, do you have an explanation for the cushioning from the shock that you experienced?

15 comments:

  1. Beatrice10/22/2013

    As an outsider to the disease, your reflections make perfect sense to me. I believe you are right on.

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  2. Anonymous10/22/2013

    My husband has advanced PD with increasing dementia which could be PD Dementia (PDD) or Alzheimer's. He too does not grasp what is happening to his mental functions which is a blessing, most of the time.

    Re care partners:
    We call his caregivers his "body guards" which brings everyone a smile as compared to what the term caregiver elicits.

    We have worked to get him to use the word "Somebody" when calling for help. "Somebody" avoids his having to remember the name of the body guard who is on duty at any time. Also "somebody" is easier to say and hear than the word, "help".

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  3. David...

    Thanks once again for these postings. I get each one via direct email and often learn alot from your observations. Like you, I am a fellow traveler on this journey called early onset Alzheimer's. I was diagnosed in October of 2011 by supposedly one of the best neurologists in Phoenix, an AZ specialist.

    I detail that moment in my own AZ Flog, "Slipsliding Away"

    You and others who may be interested can read that particular post and other observations here:

    http://www.slipslidingaway60.blogspot.com/2011/10/story-of-getting-to-acceptance.html

    I remember that, unlike my wife, I accepted the diagnosis with calmness and detachment. I had many other thoughts and feelings similar to the ones you addressed above. At the time I attributed it all to my ability, long practiced from a 25 year Army career where I had had witnessed more than a few bad things, to the ability to compartmentalize feelings and events. I had dodged death a few times already and have a strong spiritual belief... I have no fear of death...as I feel I am living on borrowed time anyway...so how hard can this be?

    So here we are two years along, and like you, I still have most of my cognitive abilities left. I still drive, still write a daily news flog for my friends and still wonder if my doc was right. I am scheduled for a day long battery of further cognitive tests in January... which might finally convince me one way or the other.

    Meanwhile you and I, and many others carry on as best we can day to day. If the dark veil is beginning to fall... I can't see it yet... but then... maybe we would be the last to know eh....?

    Thanks again for your postings...

    Ed

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  4. When my husband received his diagnosis it brought tears to his eyes, not the Alzheimer's , no, that he would be losing his drivers license.

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  5. I have multiple female relatives through several generations who have developed Alzheimer's in their early 70's. I am now 70, and so aware of the little forgetfulnesses that seem to be more frequent, or is it just that I'm afraid it will be so? When I project myself into the situation of being informed of a diagnosis - oddly, my thought is that I would take it rather calmly. Perhaps because it is so plausible, I would not/will be surprised. I have wondered about that, though, and the idea of a "blunting" effect had occurred to me before I read this..hmmm.

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  6. Anonymous10/22/2013

    I disagree with the commentator. When I first noticed a change two years ago, I said, "Honey, you seem to getting a little bit forgetful." He was deeply wounded -- and offended. "Why would you say something like that? Do you think I have Alzheimer's?" This was not said in a tone that invited an answer. It was an accusation.
    In fact, it has been so hard for him to accept that he refuses to be tested by a neurologist. (We have a gerontologist M.D. who is sure that's what it is.) We just talk about "memory loss" around our house, even though dementia is now obvious to others. I think he hates what is happening, fears it, and has tried to deny it though he does every now and then talk about his failing memory.

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  7. I have slight dementia but have not been diagnosed with AD. For myself, I don't care. I would just feel bad for the people around me since they are the ones who are going to suffer the consequences.

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  8. I am a home health aide and have helped to take care of many Alzheimer's clients. Many have been professional people and my heart goes out to them and their families. I look forward to reading your posts to gain knowledge of what my clients might be thinking. It is sometimes very difficult to know what to say when they ask " what's wrong with me, why can't I seem to get things right anymore" I feel for the spouse whos husband or wife is no longer the person they once knew and they are trying their best to cope, to understand too. I feel blessed to have the qualities to be in this line of work. It fits me.

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  9. Anonymous10/22/2013

    There's a lot going on in a diagnosis. I can think of many examples in my own life where the person being diagnosed (or receiving medical news) reacted quite differently from how loved ones reacted. Here's one: At age 19, my sister was diagnosed with Type 1 diabetes. She was so *relieved* to know why she'd been feeling so bad for so long and to be able to do something about it. In contrast, my reaction to her news was fear and sorrow.
    I also think it can go either way. I was born with a rare heart defect. I've had several surgeries, all of which were emotionally harder on my family than me. However, upon receiving the results of a medical test a few years ago, my doctor and family were overjoyed to know that I could start a new medicine that would probably keep me healthy for about 15 years, instead of just 5 un-medicated, before I would need a heart transplant. But I was just out of college and had never really thought about my heart having an expiration date, be it in 5 years or 15. Coming from a different perspective, I was devastated by the "good" news. (That was about 8 years ago and I'm still taking the medication, working full time, loving life. So far so good.)
    From what you and others have reported in the past, it sounds like people with AD (or MCI) basically fall into 2 categories at diagnosis. 1. The person has noticed changes in their own thinking and functioning, but others haven't much, or 2. Others have noticed changes, but the person hasn't or is not longer able to notice the changes. Sounds like in case 1, the person (with prior knowledge of own symptoms, questions, fears about what's going on) takes the news better than family (who might not have noticed signs yet). In case 2, it's perhaps the opposite.

    (Also, I just want to say thank you for this blog project. I get so much out of reading your posts and others' responses.)

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  10. Anonymous10/22/2013

    When my husband got his diagnosis, he was devastated. His father died of the disease and he knows what the ultimate outcome will be. Perhaps that is what caused the absolute depression and sadness.

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  11. as a family doctor i knew it was coming one day. i remember sitting in the examiners chair while having a neuropsychological test for the normal control group of an alzheimers research study. i remember not remembering items for the short term memory portion of the exam. there it was i thought as i looked out the window. i felt the flushing of my skin and the sinking feeling as i realized the time had arrived for me.
    i cried later and several times since about my diagnosis. ive accepted it and have moved on. like you i freely talk about it and how if affects me
    hoping that talking freely about with the disease will help others in some way. togd

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    Replies
    1. im 50 have been diagnosed with ftd..mri changes, pet scans show frontal temporal, 14 hours of nuro phyc shows severe imparemtns, my family are totally wrecked watching me...flip completely to a dramatic disfunctional non productive woman..still most of my friends cant tell there is anything wrong and say 'oh i have that' ... this is a crazy disease ..I KNOW FOR SURE THERE IS A HUGE PROBLEM..but have made a massive come back the last 4 months ...on MCT oil coconut oil and ketonic diet... try it i went from not being able to talk and ..well in bed and tired over 15 hours a day..to only needing th typical 9 ...i still can not work or try to 'do' more than one thing a day with out many disasters..i go in circles..but still try to engage in life/family/and fun...but wow i have lost most of my passion... big hugs to all and blessings u can see my u tube kelli mcgowan shocing story of dementia.. i am doing all i can to 'break the stigma' as i am a young hair dresser and 'pretty' they say.. it hits home that this disease chooses any and all just like addiction..it is a family disease.. and just as confusing and painful...we keep growing our SPIRIT and keep LOVE and forgivenss on top of the list..i teach the Course in Miracles, am v.president of A CENTER FOR INNER PEACE see www.acenterforinnerpeace.org. i have a beautiful daugher and a grand baby that will turn 6 soon... i hope to be louder have made head lines and got 4 pages in the MARIN PACIFIC SUN PAPER..as well as cover of the Marin Independent journal..alzheimers .. let me know if u want links or info i would love to b a part of your camaagne.. to wake UP THE NATION.. to the title wave that will bankrupt the nation and our lives.
      blessings and LOVE

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  12. Anonymous10/24/2013

    I remember well the first time I took my Mother to the neurologist. It seems she had been quite a few times before that on her own, but apparently had not understood or remembered the Dr. telling her she had alz. When he told her and I that day that she had Alzheimer's dementia, she did not seem to have any reaction at all. It really was as if she had a (cushion). But when I was seeing a neurologist a few years later and he told me I had a cognitive decline, I was very aware of what he said. I was well aware before I even went for all the tests that something was wrong and had changed. But I seem to be coping fine with it. I have learned a lot of tricks to keep from getting lost. I've set small limitations on what I can and cannot do and I am learning to identify stressful situations that will cause me to get worse. Of course, my husband has learned to shield me more from potential situations of stress. I visit my mother almost everyday at her nursing home. She is very far into alz. now and she can't feed herself. She sometimes calls me Mom, but can't say much. I stay long periods of time there, even if my mother is asleep. I feel comfortable and accepted there no matter what I say or do that might be strange. I go to their Kareoke and their church services. I never went to Kareoke before. I sing out loud and say Amen during church, which I never did before. I am friendlier than I ever was before, everywhere I go. I guess I am losing my inhibitions. I don't worry so much about the things in life I never could do anyway like I used to. I accept myself and others more. I am forgetting more and more, but I am forgiving others and accepting them more and more too.

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  13. I Think . . God Gives Us What We Need , When We Need It , At That Moment ! Be It Peace , Strength , Ability . . In Ways That Only HE Can Provide !

    Watching My Mamma , Gods Strength Has Given Her The Ability To Do Things That Are Set Before Her ! We Were Talking Not To Long Ago , And She Began To Cry . She Realized The GOODNESS OF GOD . Not That She Wasn't Aware Of HIS Goodness , But It Was Revealed To Her In A Mighty Way By Taking Care Of Her Husband , In Ways That She Feared She Couldn't !!

    I Tell Ya , As I Am Sure You Know Through Your Christianity . . GOD IS AMAZING !!!

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  14. i feel the same way am 50 had tests that do show changes on mri pet in frontal and temporal and 14 hours of nurophyc that shows major imparements and serious imparments..as wellas the first written test in the beginning of some minor nuro phyc showed dementia. still people doubt and say ...'o i have thet' it is mind blowing that i can go from being totally productive and highly functional to having one thing 'to do' in a day totally overwhelm me..i go in circles..and actually am doing better the last few months on MCT oil by the quart and the ketonic phase of atkins...check it out .. much love

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