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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.

Wednesday, January 30, 2013

Now It Begins

Washington DC

I have been diagnosed with a progressive “mild cognitive impairment,” almost certainly Alzheimer’s disease.  The neurologist told me the diagnosis last September, but I’ve waited  to begin this blog until now when  my symptoms are becoming noticeable to others. (You can find all the previous posts in the blog’s archives [bottom left] or by going to my website where I’ll keep all the posts in a few documents for those who want to read the whole story in chronological order.

Actually, I’d been noticing symptoms for a while but was still surprised by my doctor’s diagnosis.  Over the past several years, my memory has significantly declined.   This is a common complaint for people as they age.  For 20 years before he died, for instance, almost every time we visited, my father asked again for reassurance that he didn’t have Alzheimer’s  His memory loss, like many other older people’s, was mostly for names and faces.  I’ve always had that kind of poor memory, but I began losing memory in other areas as well.  Two years ago, an entire trip to a rural area southern Virginia disappeared from my memory.  I drove down to visit my friend Jens Soering in the prison to which he had previously been moved.  I could have sworn I was going down for the first time.  In fact, I’d been there before several months earlier.

I chalked it up to a single bizarre experience that would probably not mean much to a doctor, so I didn’t do anything except tell the story to friends.

Some months later, I couldn’t recreate a computer spreadsheet formula that I’d written several years earlier.  In fact, when I went back and examined the formula from an old spreadsheet, I couldn’t even understand what I’d done.  Such calculation difficulties persisted.  I went to a neurologist in the fall of 2011 for testing and he said that I did have a cognitive impairment but that it wasn’t severe and the relevant point was whether it was progressive.  I returned last fall (2012) and, yes, the impairment had progressed.  There aren’t too many likely candidates for causes for progressive cognitive impairment.  The neurologist performed tests for them: they were all negative.  There is no certain test for Alzheimer’s except to rule out these other candidates, so the overwhelming likelihood is that I have early Alzheimer’s disease.

Since last fall, the disease has progressed.  My memory is much less reliable.  I’ve had trouble finding words, especially in Finnish as my wife Marja and I try to converse but also quite noticeably in English.  Both my daughters, Laurel and Karin, recognized in retrospect that it took me longer to do certain tasks.  That slowness in figuring things has gotten worse, too.  While I can still eventually do most computer tasks, they can take a long time, and I can get confused easily.  I’ve even had two experiences of being in locations that should have been quite familiar but, in fact, I didn’t really know where I was or how to get where I was going. 

I’ve been apathetic about writing and about my website these last several years.  I’m somewhat less interested in politics; for example, I couldn’t sit through the presidential debates last fall.  (Some of you may feel that the only mentally healthy response to the debates is to turn them off, but it’s never been true for this political junkie.)  Perhaps I’m just looking for an excuse, but I’d like to believe that this disease is at least predominantly responsible. 

So, while there is always a chance that it’s something else, my neurologist and I are pretty certain that it’s Alzheimer’s.    So far, the symptoms have been limited.  I can still write well, although you may have noticed that my essays have been less frequent lately.  When I type, I frequently leave out words and phrases (which I hope I’ll edit out before I actually put my posts up).  I’m still teaching in small groups, still doing the books for my church, still mentoring some others. Up till now, I’ve noticed my mistakes well before others do.  My judgment seems unimpaired.  My life goes on.

It seems paradoxical, but Marja and I are actually doing quite well.  In fact, I’ve noticed some positive changes in my ways of thinking and acting.  I’m more emotionally open.  I’m less insistent on maintaining my image as prophetic voice or incisive writer.  I don’t need to prove myself with new accomplishments.  For the first time, Marja and I have allowed ourselves to look back on our lives with satisfaction and gratitude.  I’m more vulnerable to other people and have been experiencing an extraordinary closeness to some people that I would never have thought possible.  While it seems crazy to say it, so far my life has been better … happier … than before this disease.  I have no illusion about what’s coming, but, up until now, it’s been good. 

Garrison Keillor said recently, “Nothing bad ever happens to writers; it’s all material.”  So, at least for a time, this Alzheimer’s disease will become material for my website and for this blog.  I want to write about what Alzheimer’s is like from the inside.  What is the experience of losing one’s mind?  Do I still experience myself as the same “self”?  Obviously, I don’t know how long I can do this, although my good friend Carol Marsh has volunteered to keep it going with interviews when I can no longer write.  We’ll have to see.   

I had a number of scenarios for my death.  This wasn’t one of them.  But now, I have pictures in my mind of lying drugged and incontinent in some nursing home.  I don’t want friends and family to remember me as that old guy babbling on the couch.  I’m afraid of the uncontrollable rages that sometimes accompany this disease.  Mostly, I think, I’m afraid of abandonment as I become one who can’t hold up his part of the conversation.  I’m afraid that--except for Marja--my family or even very close friends will abandon me (even though I know intellectually that these are irrational thoughts), but it’s not paranoia to think that the quality of relationship will isolate me. 

But it’s not only fear that we have about Alzheimer’s.  It’s also embarrassment.  What do we say to the guy has just repeated himself for the third time in five minutes?  Several years ago our community  invited to Washington a writer whose books had brought great change to our lives.   But he had Alzheimer’s that had progressed significantly.  I’m not proud to say that I had no use for him.  Why had we invited a man who could hardly follow a conversation?  (After my experience so far, I suspect he did understand at a non-cognitive level and honoring him was well worth our effort.)

So part of my reason for this blog is to address that fear and embarrassment.  I’ve been frank and transparent with my family and my community because I want us to work together to teach each other about this disease and how to respond to it.  I want to discover what friends (or even just acquaintances) can do to understand this illness and not have to abandon me.  Perhaps I can take some fear away.  .   

I’ve been writing “posts” since September but haven’t wanted to publish them until now.  I’m not sure how many people will want to go back and read those many posts, but I think that just putting them here on a blog will almost certainly bury them too deeply and discourage anyone from reading the whole story.  So, for those who do want to go back, I’ve compiled them in chronological order and put them on my website.  I will continue to do that as the archives expand.  I’ve also written a short autobiography that, I hope, will give you the chance to know who I was and, therefore, what I’ve lost. 

These have actually been wonderful months!  I want to follow it out.  I hope some of you will want to join me.


47 comments:

  1. David - I am eager to catch up with you and learn more about what's happening through this blog. And while I'm sorry about the context, what you say in your sidebar and in this post about the possibilities for joy and happiness alongside a diagnosis you would not wish for rings true. I've spent many of the years since we knew each other in D.C. contemplating and writing about disability, illness, theology, suffering, and the gift of life regardless of circumstances. I look forward to reading your contributions to this conversation through this blog. Blessings, Ellen (Painter Dollar)

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  2. Courageous- thanks for writing.

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  3. Kia ora David (wishing you well in Te Reo Maori)
    Thoughts which clustered to tell you how I feel for you and about your 'blog' are in no particular order, thank you, good for you, I'm glad of your determination, self-reflection, joy in life, courage and I keep feeling your attitude and acceptance and yet fighting of this, is so very like that of Terry Pratchett, whom my younger daughter and I have met a couple of times over the last decade in his visits to Aotearoa/New Zealand. I appreciate your opening out your life and the trials and stages of how this incipient disease attacks the mind. I had an occasion after trauma of earthquakes, moving homes and islands and financial stresses on top of concerns about family members where I lost 5 hours from my life waking in a hospital. I certainly am aware now when travelling of having to have my details in my cell and other parts of my daily luggage ...just in case. The neurologist put it down to stress, but usually I cope with nayhting! All the very best to you. Will be glad to follow and step with you on your journey. I am 63.

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  4. David,
    Your blog has been a blessing to me; thank you for writing it. My husband is diagnosed with Mild Cognitive Impairment, but is dealing with it in a very different way. He is in full blown denial – he is adamant that if he has Alzheimer’s he does not want to know. He refuses to follow-up and has sworn off ever visiting a doctor again. (Just the opposite of your “letting go.”) I have to accept his way of dealing with this, and I cannot impose my way on him, though it is very disappointing to me on many levels. Most disappointing is that we have this significant, life altering situation impacting our lives on a daily basis, but I am not allowed to discuss it. For 30 years he was my best friend and confidant, but that is now gone. Needless to say, life has become very lonely. So I am very appreciative of your open and honest discussion about your thoughts, fears, and wishes in relation to your condition. I hope you are able to continue to live in the present and enjoy the gift of today. “If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?” – Shantideva

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    1. Mary:
      Your story makes me sad. Even with the best preparation, it seems to me, this disease is difficult enough for the caregiver. But it's even harder when you can't prepare together, lean on one another, console one another. Perhaps the hardest is having this most important elephant in the room without being able even to talk about it.
      While this is harder for you, your husband must have a great deal of pain around this, too, or he would be able to show you his wounds. Even if he couldn't "let go," there's great value in just having one person with whom one can be honest about one's fear and sadness, with whom one can share the pain, with whom one can come to understand that this is not the worst thing that could happen.
      I wish our culture were more open so that your husband and others would not have the cultural taboo to deal with on top of everything else.
      Thank you for writing and sharing this.

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  5. Sir ~

    I've just found your blog, and have read your autobiography ~

    I salute you for your openness, your courage, and your heart.

    I wish this could be required reading for all who are touched by Alzheimers.

    bobbie howder R.N.

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  6. Good evening, David, I have just begun to read your posts. My husband and I have been deeply affected by Alzheimer's (his Mom, his Aunt, and my mom with dimentia) and we still read everything we can find about the illness. I look forward to reading your autobiography and your posts. Thank you for inviting us all into your life. May we be worthy travelling companions. Marty and Gary

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    1. Thank you for writing. As I've said to a number of others, you have valuable experience of working with loved ones with Alzheimer's. I hope you can share some of your stories, both painful and hopeful with us. It is starting to sink in on me that the fear and shame that so many of us (healthy ones) have is a projection of how we would feel if we were in that position of the demented one. In fact the affected person seems not to have many of those concerns. We need to hear those stories ... as well as any that seem to support the dominant narrative of fear and shame.

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  7. Anonymous4/19/2013

    I just found your blog and am truly appreciative. My 81 year old mother has Alzheimer's and has probably had it for at least 8 or 9 years. I commend you for writing this insightful, honest blog. Even though each person's experience with Alzheimer's is different, it is really helpful to hear your experience. I will definitely be looking at the blogs that are archived when I get a chance.

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    1. You'e right, each experience is different. I've really enjoyed discover what some of those different experiences are. If you feel like sharing them, post them here.

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  8. May I respectfully quote an eminent Canadian Orthomolecular Psychiatrist, Dr. Abram Hoffer, M.D., Psy., Ph.D.? He is speaking informally, 'as a rule of thumb':

    "If you still have five minutes of lucid thought process remaining (at any one time) your Alzheimer's is reversable."

    Considered the North American "Godfather" of Alternative Medicine, he successfully reversed Alzheimer's by administration of I.V. Chelation Therapy (FDA-approved in 1947 for heavy metal removal from the arteries). Also, the skillful removal of mercury dental fillings that register mercury emmission using a (rhymes with Jerome?)instrument placed in mouth. Dr. Hoffer also published in the 1950's his success in reversing Schizophrenia. Quoting Dr. Hoffer: "On a Friday, if I receive a schizophrenic patient in my office and (he) is in particular stress I administer a mild tranquilizer and calm him down with consultation - I show him how to take the B- Complex, C,E, and other minerals over the weekend and come back on Monday. As the patient enters my office that day, I can tell whether he has taken the supplements as he will be normal." This medical giant from Victoria, B.C. died last year in his eighties. Many other doctors continue with equal success. In the Washington area, an eminent physician Dr. Paul Beals would be an excellent resource for further information. I have researched M.D's with alternatives to drugs/surgery for over 30 years, and know how to separate the grain from the chaff! On the cover of my medical directory, co-authored with a Grand Forks ND physician, 2nd ed., I quote Dr. Hoffer's assertion re. Alzheimer's with an insert into a missing puzzle piece that is contemplated by a man standing on the puzzle. Google Find Alternative MD's and my name to see.

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  9. Please have an open mind. Doctors are available that know more than the 'typical' doctor.

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  10. The question that you raise is one that comes up frequently in the comments to blog posts and especially in emails. I've responded to some of the issues you raise in my Match 8 post "Why Not Try This?" so you might look at that.
    But you raise a larger issue that comes up occasionally that might be re-worded this way: "Dr So-and-So has come up with a cure for _______________ and it's well documented to work, but the medical profession ignores it and refuses to consider it." Sometimes the reason given for the medical profession ignoring it is that it goes against conventional medical principles; other times it's that doctors are only interested in using drugs that bring a profit to someone. Etc.
    I don't pay much attention to these "cures." Most importantly, if there were a cure for Alzheimer's (or schizophrenia, for that matter), there would be researchers streaming to your door, eager to test out the theory. The idea that doctors won't look at something unorthodox goes against everything I know as a medical professional myself. Such a cure would not remain hidden; it would simply be much too important. A research scientist would make a big name for himself by documenting a cure for, say, Alzheimer's.
    I do place a great faith in medical science. Acupuncture, for instance, was a treatment modality that came from the East and it was widely dismissed here as non-scientific. Because it seemed effective for some things, however, researchers started experiments and soon discovered and documented its effectiveness.
    Some other alternative medicine modalities were also picked up, and there are now many regular MD physicians who practice in that specialty.
    As I write in the post I mentioned above, there are far too many of these different cures that come to me to investigate each one myself.
    Thanks for writing. I think the issue raised is a major one.

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  11. Your blog was shared to me by my mom today. Have read the whole content as I could not stop and love your Spiritual Autobiography. An inspiration you are! I truly believe God uses us as tools to guide others through thier life journeys, to help others, and thank God for you. Your outlook is amazing and thank you.

    My one grandmother had Alzheimer's and the other Dementia, along with one of their sisters. Often, I wonder about what will happen or what my chances will be of having one or the other. Your writings have already put my mind at ease if this ever happens and have signed up to receive all your future posts so more light can be shed. Also is amazing to read what you are and will go through so there is better understanding to what both grandmothers experienced or anyone else around me, including myself.

    After experiencing an illness last year and still battle it, I've learned to take one day at a time and that tomorrow is another day. Is hard to let myself depend on people, being such and independent person, and need to overcome this. Reading you blog has shed light upon many things and helped me understand it will be okay to let others help and do in our time of need.

    Robin

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    1. What beautiful and gracious things to write to me! How could I ask for anything else than that one person experiences my writings as you have. Thank you.

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  12. Thank you for committing to doing this. My 84 yo father suffers from this, as did his father, and it is very hard living it with him. I will love reading your perspective and hopefully it will help me understand his responses. I think he is a bit further down the road than you. His memory lapses are more frequent, his physical well-being is declining (although not all from Alzheimer's), and his anger is becoming more pronounced. We have struggled with who he is becoming, only because we are already missing who we remember. Hearing your perspective will help me remember that he is probably missing who we remember as well.

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    1. Yes, your dad is a ways down the road from me at this point. I hope some of what I say is helpful to others. Increasingly, people are commenting on the blog with stories that are really wonderful and may be helpful, too.
      One issue that I have not written about because I don't know much about it is the anger that you mention. It doesn't happen in everyone. I'm wondering if it's physical, ie it happens to those in whom certain neurons get whacked and doesn't happen to whose who get other neurons whacked. Or is it more individual and emotional, having to do with levels of repressed anger that are released when inhibitions are released. If the latter, how much would it help to become aware of the diagnosis early, reveal the diagnosis to important people and work it through with friends and family so that one is not so isolated and ashamed.
      I don't know, but I'm sure interested in finding out.
      Thanks you for writing.

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    2. I have some thoughts on the anger, my mother lost her light about a year and 1/2 ago. Intellectually I was happy for her, my heart still aches (for me I suppose)my Mom evolved into an agressive angry phase. At the time it "seemed" like frustration with her loss of freedom, memory & communication skills she was still very physically active and took to pacing (probably miles). Now I suspect the way the neurons re-routed themselves to compensate for the loss (plaque)might be why the disease looks different with each person.

      I too just found you and will continue to read the insight you can offer that my Mom could not, thank you for your courage. I will find peace.

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    3. As I've talked with more specialists, it seems more and more likely that you're correct. For some I suspect it's just a matter of loosened inhibitions releasing previous anger and/or frustration. But for others it's probably actual changes in the "anger centers" of the brain that create the anger.

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  13. Anonymous4/27/2013

    Mother and I are so grateful to have seen your story on CBS News this week. She was visiting to choose a place to live after her recent diagnosis with MCI. No longer able to manage the big farm in the middle of nowhere alone. I look forward to spending the next few years together, enjoying her company, and keeping her safe, comfortable and happy.

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    1. As you probably know, if your mom has MCI (mild cognitive impairment), then she may have many years in which she can care for herself or be cared for easily at home (although not in the middle of nowhere). I hope there are places where she can live where people know her well and love her.
      Good luck.

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  14. My daughter found your blog and forwarded the link to me. My mother just died last month at 88 after a 10 year struggle with Alzheimer's. It was a journey I shared with her. I learned so much through this process and came out the other side a changed woman. I also kept a short blog during the last three years which helped me enormously. I titled it A Walk with My Mother. There are so many wonderful lessons to be learned and many tears to be cried. I will look forward to "walking" with you through your posts here. I applaud your openness and interest in learning through your journey. Wesley Balk, who was a brilliant stage director in opera, suffered from Parkinson's disease during his last years. I remember sitting in a master class years ago when he stated how grateful he was to have the disease as it was teaching him so much about himself. I am sure with your attitude and approach you will learn much. Best wishes and thank you for sharing with others who suffer.

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  15. Alzheimer's has certainly taught me much about myself and actually made my life happier, although I can't say I'm exactly grateful for the disease. Marja and I haven't yet reached the "tears to be cried" stage, so it's hard for me to speak to all sides of this disease.
    Thanks for writing.
    David

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  16. Anonymous5/06/2013

    David, My spouse was diagnosed one year ago. I missed the signals something was there until about 2010. Once diagnosed, I attended an Alzheimer's Caregivers' Support Group. There a lady discussed how rude people were when her husband blurted out something inappropriate about going to the restroom. She was embarrassed. I realized that she was still trying to live "normal" in an unusual world. I began by telling everyone I encountered my spouse has Alzheimer's disease. He also has another disease, micro-vascular disease. I decided to do so early on so he would be treated with dignity and respect. I've never been embarrassed by the disease or his inability to be like everyone else. Every one treated him as I anticipated. They were loving, caring, and wanted to help if and where needed. I couldn't have made it this far alone. Their understanding and compassion have made the difference. I would not have gained this insight if I had kept his struggles a secret. His situation is progressing at lightening speed. We've been married for over 51 years and I never have wanted anything more or less than the best of others. They have been that and so much more. No one wants to see someone else struggle, so they stand tall wanting to help. I am sad we face struggles, but oh so proud of our friends, strangers, and those who truly like knowing so they can show they do care. Page Massey

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  17. Page:
    What beautiful confirmation of my hopes from a couple further along on this journey than we are.
    Yes, you can't live "normal" in the abnormal world of Alzheimer's; other people need to know what world you and your husband are in. I'm not so surprised but really delighted that both of you have been treated with understanding and compassion.
    This disease is hard enough without uninformed people making it worse, exacerbating the isolation.

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  18. Hi David, I just discovered your blog through an article in the NY Times. I am so glad I found it! I too, having noticed some short term-memory problems, have been terrified about getting AD. I underwent neuropsychological testing which resulted in a diagnosis of mild cognitive impairment, but the neurologist did not find my deficits commensurate with AD. After more research (I am a retired internist) I came up with the diagnosis of normal pressure hydrocephalus subsequently confirmed by MRI, underwent shunt placement and am doing well. I wrote about my experience in my blog (http://tinyurl.com/o8kcd6d) Although most of my symptoms resolved, my short-term memory is about the same and I am still worried that AD will rear its ugly head somewhere in the future. I am impressed by your bold attitude and am looking forward to following your life's adventure along in your blog.

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    1. Hilke:

      I'm happy to hear that your shunt placement is working. Your post is especially important for readers of this blog to reinforce the message that early diagnosis is very important in the event you have some other treatable cause of dementia. Normal pressure hydrocephalus is not a rare disease and the shunt you have, as you have seen, works.
      Thanks very much for writing.

      David

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    2. Hi David, I came across your blog on F/Book. My grandad had Alzheimer's in the 80s. This was never recognised as a illness until the late 80s. They thought my grandad had simply lost his marbles. He was put into a place called Claybury Hospital which infact spent his last days ( very sad).

      I am now a carer and my passion is Dementia and Alzheimer. David, I would be very interested to follow your journey. You seemed very focused and positive.

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  19. Jo Ann Saldana7/06/2013

    I found your blog today via Inward/ Outward. Thank you for allowing us to journey with you and your wife. I wish I had the support of sharing stories back when my mother died of Dementia 3 years ago. I did learn to care for my mother and to keep her happy and cherish her spirit. We enjoyed listening to music as I would dance for her. Although her behavior became increasingly difficult, her spirit was the same. To see past the illness and help care for your love ones spiritual needs helped us through this difficult journey as the lights began to go off. Nourishing both her spirit and my soul.
    Thank you for sharing your openness and your positive energy.

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  20. If the stories are a help to you or you would like to write yours, the Comments are a wonderful way to find stories. So9me stories from caregivers whose loved ones were in the advanced stages of Alzheimer's are especially beautiful. Unfortunately there isn't a single page that collects all the comments, so you have to pick them up from each article. Thank you for writing.

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  21. Dear Dr. Hilfiker,

    A friend forwarded the link to your blog and I am so impressed and glad to read of your experiences. I started a business in 2010 dedicated to helping people with dementia - in any of its forms - continue to live in their own homes. We do that by providing graduated levels of care, but primarily I try to give each client the tools they will need to live happily even as their disease progresses.

    Your experience of finding joy and increased awareness of the emotional dimensions of relationships is so true - I find that my clients develop greater intuitive and emotional skills as their ability to track facts decreases. The joy is there, in the moments when you are no longer distracted by the future or past. And your comments regarding dealing with the fear and embarrassment of finding your ability to retain information are so universal for those of us dealing with dementia. But we wouldn't be impatient or frustrated if someone with a broken leg couldn't keep up with us while walking, so why should we be impatient when someone with broken "recall" can't retain information without asking for repetitions in a conversation? And why should that someone feel any more ashamed or guilty of having damaged recall than someone who has lost a hand should feel ashamed or guilty of being unable to shake hands?

    My website is found at homecaremoscow.com and my email address is listed there. I'd be happy to talk more about ways of maintaining good communication even as the disease progresses, and tools that can be helpful.

    Thank you for sharing with others as you take this journey!

    Judy Cornish
    Hearth & Home Senior Care Services LLC

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  22. I'm convinced of the rightness of what you say. So much of the pain of AD, I suspect, has to do with our own and the culture's inability to look Alzheimer's disease in the eye, introduce ourselves, and work on living together. So much of the pain (for the person with AD, at least) comes from the isolation, embarrassment, and fear of the disease, not from the disease itself. (Probably not so true for the caregivers!).
    To change subjects, I just put up a post on the book Contented Dementia that I would be interested in your opinion about. How does it fit in with what you're learning in your work? If you wanted to write as a comment to the post, that would be great.
    Thanks for writing. David

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  23. Hello David,

    I just ordered 'Contented Dementia' and am really looking forward to reading it after seeing your comments. I'll post again once I've finished, but those three rules parallel exactly what I teach my staff and families. It is so important to seek to recognize and then respect each other's pictures or metaphors. After all, we are all living according to our own limited versions of reality, not just those of us with AD. :)

    By the way, would you be comfortable with me including a link to your blog on my website? I would like to alert my clients and their families to your insights.

    Best,
    Judy

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  24. Dear David, Honored to read your writing. I am an anthropologist who specializes in ritual and cognitive states and the neurobiology of rituals. I will most certainly include your experience in discussing my work with others, so very grateful to hear your voiced added to this rite of passage. Gina Bria

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  25. Anonymous7/29/2013

    Thank you so much for your blog. My father has been diagnosed with MCI, his mother had Alzheimers (confirmed after she died at 94) and I fear it tremendously whenever I experience moments of confusion, can't remember something, struggle to find a word, etc. You have given me and my family insight and hope and perhaps even a sense of peace. Thank you thank you thank you (deliberate repetition) for telling your personal story.

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  26. Thank you for addressing openly what we all fear.
    When my daughter was about 14 she said, "The only thing weireder than dying, is living. We are, we are not. Wow. It's enough to drive you crazy!"
    I am an RN and once worked in a nursing home. I came to see that "demented" patients who have lost their personalities have another part of them, an intelligent part, that stands and witnesses and strives to help. I call it the spirit. Whatever it is, it is there for each of us if we ever fall into the abyss of deep illness or physical distruction. It may not be very apparent to those around us except in bits and glimmers, but I did get to witness enough that I know a part of us does not "go down" as we go down.

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    1. As I read the comments and emails in response to this blog, I, too, am convinced that an important part of the person stays. (See the post and the comments on May 18 - "They're Still There." This is not exactly the same as the spirit you refer to, but important parts of the person certainly remain.

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  27. Aloha David,

    Read about your blog in our local paper and since I had a negative AD experience caring for my aunt, in my ignorance of AD, I want to learn more about it via your blog.
    I, too fear becoming AD and have prepared by sister & companion that I AM GETTING forgetful, "so don't scold me...just repeat what you/i told you last week." I find that I'm obsessed with writing everything down so I DON'T forget. People comment on how "young I look and act for 77 yrs and I jokingly reply, "yeah, the body's still good, but inside the head it's deteriorating" find I can't spell anymore...yikes...thank goodness for spell check! Will follow your blog as there is much to learn...thank you for sharing your personal insights and God Bless!! Salome

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  28. Thank you for your blog. I follow a few blogs an dementia and they are ultimately distressing, the bloggers eventually are unable to make postings, so it is good that you have a backup plan. Here are a few blogs by people with dementia: Vicki's Voice [http://vickisvoice.tv], Living with Dementia [http://brucebane.wordpress.com], Early Onset Alzheimer's [http://earlyonset.blogspot.com], My Personal Account of bvFTD [http://bvftd.blogspot.com], FTD/Dementia Support Group [http://earlydementiasupport.blogspot.com] and Julie's Journey [http://juliesjourney-julie0201.blogspot.com].

    Not only be sure to take care of yourself as best you can, but make sure that your wife takes care of herself. Be sure to all legal matters (DPOA, Medical POA, new wills, advanced directives, etc) completed ASAP. A visit to an eldercare lawyer is a good idea.

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  29. David,

    Best of luck to you and your family. Be sure not to just take care of yourself as best you can, but make sure that your wife takes care of herself, this is going to be very rough on her.

    Get all legal and medical paperwork done, such as Durable POA, Medical POA, advanced directives and new wills. Seeing an eldercare attorney to cover these and other issues (such as how are you going to pay for future care) can be very important.

    I follow a few blogs by people with various forms of dementia. Here are a few: http://earlydementiasupport.blogspot.com, http://bvftd.blogspot.com, http://earlyonset.blogspot.com, http://brucebane.wordpress.com, http://vickisvoice.tv.

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    1. Thanks, Paul. Of all of them, I liked Vickisvoice the best. It's written both by her and someone who knows her well. It's about frontotemporal dementia, but it obviously has lots of similarities to Alzheimer's. I've put it on my Selected Links (see top of the blog).

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    2. Anonymous9/30/2013

      David - thank you for this blog.....my brother just alerted me to it and I will alert others. Our 90 year old mother has been progressing through Alzheimer's since mid-1980's we think, but "formally" diagnosed 3 years ago. She often points to her head as she might a gun to indicate such frustration over....well, exactly what we don't know but certainly a general sense that she is unable to make her brain work. What I am intrigued by is how the brain watches itself go through this......where the metacognitive skills we build up in children (or try to) come into play or go out of play. I guess one thing you can be sure of is that you have far too much company in this life chapter. And we are finding so much more out rapidly about the brain.....hope that gives you and many others a sense of hope that was not there just a few years ago. Here's to your path and your willingness to take us along--with courage and forthrightness that will be a gift to many. ps - I get almost enraged when I see books/articles on "how to avoid alzheimer's with diet, exercise, etc." as several friends of my parents ---with advanced degrees, SUNDAY NY Times Crossword completion skills, regular habits of eating well and walking or being active, intellectual interests up the gazoo and solid, rich social networks---they have fallen to this disease and so I hope we will hold judgment on the causes until we are much better informed by quickly advancing science on the subject......individuals and families deserve to hold off on media jumps to conclusions which can add to stigma and shame.... grateful for your work, Susan and family

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    3. Thank you, Susan. I can't add much to what you've written. If I understand what you're referring to correctly, I, too, am quite interested in what will happen to my "metacognitive skill." Will I always in some sense be watching, conscious of my impairment? Or do I lose that at some point? And, if so, what replaces it? Will there be a way for others to access my inner life as I progress into the disease? Will it help if I keep consciously watching, talking, and (while I still can) writing?
      I, too, get irritated by all the "cures" that pass through my emails and comments. I'm grateful for the concern people are showing, but I usually perceive an expectation that I'll take it on. People can't somehow see why I'm not going to interested in the "next big thing." It almost seems they feel I'm irresponsible or that somehow I want to have this disease. I'm probably projecting and exaggerating.
      I do trust good science and when science shows that something works, I'll be the first to jump on board.
      Thank you for your good wishes.

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  30. I just started reading your blog. I don't remember how I happened on to it. I have had some experience with Alzheimer's. My Grandmother, diagnosed 50 yrs. ago, with dementia, probably had Alzheimer's. She lived with us. My Dad had Alzheimer's and my husband and I cared for my Mother-in-law with Alzheimer's. Because of my previous experience with it, I was able to see it long before any of her family would acknowledge that something was wrong. Naively, I thought that her experience would be like my Dads and Grandmothers. So, I told my husband, she should live with us, and I would care for her. It was dramatically different! I learned a lot. I feel like there are similarities, but it is a very individual disease. It was very difficult but also very rewarding and poignant at times. We tried to laugh with her a lot, weather the storms and adjust to each change as best we could. She passed away on her birthday last year. We are grateful she is in a better place now. My interest in your blog is to learn more. I am aware that this could be my future, or my husbands or someone else that I love. I am now starting down the path with my mother. I want to be prepared as best I can, if that's possible. Thank you, in advance, for the things that I will learn and will be helpful to me and others. Sincerely, Kathy

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    1. Yes, it sounds like you have had "some experience" with Alzheimer's. And now you begin with your mother, too. Each one of us is different. I hope you can find some joy, too, within the journey with your mother.

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  31. Anonymous10/23/2013

    Just checking in after a while...thinking of you and all those who are part of this community. This piece by John Greenleaf Whittier sometimes calms me a bit and maybe is well known/helpful to others:
    No longer forward nor behind
    I look in hope or fear;
    But, grateful, take the good I find
    The best of now and here.

    ...will keep checking back in, reading and being grateful for what you are doing here. Thank you, David! Susan

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  32. Just want to make sure you have a chance to see this inc ase you didn't
    http://www.slate.com/articles/health_and_science/family/2014/03/dementia_and_aging_diary_of_a_sufferer_of_microvascular_disease.html

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