tag:blogger.com,1999:blog-6426202096598051070.post5090961022451415338..comments2024-01-04T09:23:45.843-05:00Comments on Watching the Lights Go Out: Letting Go … AgainDavid Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger58125tag:blogger.com,1999:blog-6426202096598051070.post-74112431864319030202014-01-10T02:06:28.332-05:002014-01-10T02:06:28.332-05:00David, totally agree with your reply - we do find ...David, totally agree with your reply - we do find your words quite valuable!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-31768352214764945332014-01-09T23:27:16.138-05:002014-01-09T23:27:16.138-05:00I''m not sure what the problem is. The pr...I''m not sure what the problem is. The process for contacting me via email is to click on the "contact me" link in the "Contact Me" paragraph which is at the top of this page on the left, third paragraph down. That should take you to a contact form on my website where you can write an email. I just did it successfully. (There is a problem in that it doesn't give you a signal that your message went through other than that the contact form returns to blank after your message is sent.) You can also contact me at david (at) davidhilfiker (dot) comDavid Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-71435904935868440322014-01-09T22:50:54.523-05:002014-01-09T22:50:54.523-05:00Hi, Maggie. I've learned a good bit about neu...Hi, Maggie. I've learned a good bit about neuropsych testing over the past couple of weeks, and I share your experience. As some others have said in comments previously; no objective test is going to be able to prove that you have not declined unless you've taken similar tests before the decline. Especially earlier in the disease, we need to trust our own subjective experience.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-20731878073954510082014-01-09T22:47:03.605-05:002014-01-09T22:47:03.605-05:00Thanks. What I'm recognizing through writing ...Thanks. What I'm recognizing through writing this blog and listening to folks like you is that my task here is to write as clearly as I can about my experience and allow others to decide whether it is meaningful to them. Better that than to try to figure out what another person wants. David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-46014929525566173712014-01-09T22:40:27.416-05:002014-01-09T22:40:27.416-05:00Although I don't have the personal experience ...Although I don't have the personal experience to vouch for it, several professionals and caregivers have pointed out in these com,ments and direct emails to me, that a good AD care facility can be much better than staying at home with a frazzled caregiver. I have also heard that Queen Anne Manor is one of the better ones.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-18173189423987208892014-01-09T22:36:33.012-05:002014-01-09T22:36:33.012-05:00Each of us has to handle our disease according to ...Each of us has to handle our disease according to our own lights, but allow me to suggest letting a few people who are close to you know about your diagnosis. Likely they already know that something is wrong, and, if not now, then they will later, in the not o distant future. But if you haven't talked about it with them, they won't feel the freedom to talk about it with you, isolating you. There is nothing like a supportive community, but it's difficult for one to form if there's this elephant in the room that no one can mention.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-62669418534874661722014-01-09T22:28:39.032-05:002014-01-09T22:28:39.032-05:00You put it very well, Cathy. I have felt sometime...You put it very well, Cathy. I have felt sometimes embarrassed, wanting almost to apologize for not having AD. Put in those terms, of course, it seems pretty silly. I am what I am and I have what I have. It's more a journey of exploration than anything else.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-40456455762494352802014-01-09T22:00:44.927-05:002014-01-09T22:00:44.927-05:00I think you're right. One thing I've lear...I think you're right. One thing I've learned as a writer is that people are going to listen less to what I say and more to the story I tell. Not infrequently, they'll miss the point of what I intended to write but get something else out of the story that I may not even have seen. If our stories are as true as we can make them, whatever another person gets out of them will be worth the writing. I keep having to learn the lesson over and over again: Don't take my version of the truth so seriously; trust my reader to find what is valuable to him or her. David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-32048047621638550502014-01-09T21:43:15.457-05:002014-01-09T21:43:15.457-05:00Joan:
Thank you for bringing up this issue of acce...Joan:<br />Thank you for bringing up this issue of access to support. I am extremely aware of and grateful for the degree of support I have had from the very beginning from my wife Marja, my children, friends, and an unusual faith community. More recently the people who read this blog have also provided a great deal of support, which is obvious if you read the comments to this post. I am quite sure that the peace I have felt in responding to of this illness would not be possible without this degree of support. I’ve been made acutely aware over the last year that most people do not have this level of support and I wonder how they face this future. <br />I’ve only been really terrified once during this illness: It was a night when Marja unexpectedly didn’t get home until very late and I didn’t know what had happened to her. As I fell into the possibility that I might have to do this by myself, I felt almost physically ill. Almost everything that has made this blog possible has been given to me as gift. David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-86617610317648715552014-01-09T20:09:10.003-05:002014-01-09T20:09:10.003-05:00Like cancer dementia is not just one diagnosis; it...Like cancer dementia is not just one diagnosis; it's a symptom of many different kinds of brain injury: Alzheimer's dementia, multi-infarct dementia, Lewy-Body dementia and quite a few others. There are lots of similarities among them but symptoms tend to be different and the causes are distinct. Some have treatment and others don't. Unfortunately at this point in our history, everything tends to get lumped together which makes it harder for people to understand.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-6099319327054920082014-01-09T15:07:49.467-05:002014-01-09T15:07:49.467-05:00Whether you keep blogging or not, I thank you for ...Whether you keep blogging or not, I thank you for what you have written in the past. However, I do hope you find the energy to keep writing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-22557546882041545172014-01-09T13:36:26.081-05:002014-01-09T13:36:26.081-05:00David, you could blog about brushing your teeth an...David, you could blog about brushing your teeth and I would find it interesting - please don't stop (for your sake and ours, your faithful readers). Dori from AZAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-65749710168007419692014-01-08T23:18:46.161-05:002014-01-08T23:18:46.161-05:00I keep the link to your blog in the forefront of m...I keep the link to your blog in the forefront of my browser, so I am sure to return to it repeatedly. I understand your frustration and doubt. But you are showing the way for those of us who have not yet been diagnosed, or have been misdiagnosed. All of those tests are beyond fool-proof. Really, what we all have is our own subjective reality. And you are a voice for many of us. Thank you for continuing to post, in spite of the voices that speak against you. Don't give up, please.Gary Markshttps://www.blogger.com/profile/14004609822472830685noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-1710175002053708002014-01-08T20:03:43.936-05:002014-01-08T20:03:43.936-05:00In the words of one of the previous commenters, &q...In the words of one of the previous commenters, "I keep wishing there were a "like" button -- both on your posts and on many of the comments." I heartily agree with the many, many other people who have commented here and have encouraged your continued blogging as you are able. I very much appreciate you sharing your experiences, feelings, insights into, and interpretations about what's happening to you. It is so very valuable to me as I grapple with my father's dementia/Alzheimer's and my own personal experience with it oncoming. An official diagnosis would not render your blog either more or less valuable... And I'm sure I'm not alone in that sentiment.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-55734382987223747872014-01-08T19:37:11.346-05:002014-01-08T19:37:11.346-05:00Wonderful insight... I totally agree.Wonderful insight... I totally agree.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-45173342087864077332014-01-08T00:20:33.784-05:002014-01-08T00:20:33.784-05:00I look forward to your entries as they offer a com...I look forward to your entries as they offer a comparison and insight into the varying levels of changing impairments and how they affect you. My father, a quite brilliant engineer suffers from something similar but without the acceptance, reflection and self awareness. I like to learn, have read books on AD, MCI, etc., but so appreciate it from one person's perspective who is gifted in expressing his insightsAnonymoushttps://www.blogger.com/profile/09304019940724798275noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-27759157550632401752014-01-07T23:01:57.461-05:002014-01-07T23:01:57.461-05:00I am unable to contact you by email ... the send b...I am unable to contact you by email ... the send button does not seem to operate. etchrlehttps://www.blogger.com/profile/09895272050308531823noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-29796187679290190032014-01-07T22:52:54.976-05:002014-01-07T22:52:54.976-05:00Thank you for all you do. Enjoy your life while yo...Thank you for all you do. Enjoy your life while you can. Write when it strikes you to do so, but please don't stop. You are more valuable than you may imagine.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-33758484348489457422014-01-07T22:20:48.626-05:002014-01-07T22:20:48.626-05:00What you are doing by blogging during impairment I...What you are doing by blogging during impairment IS very valuable! I had a TBI nearly 20 years ago. I'm now 68 and have found Aricept indispensable although it precludes my ever having long term care insurance. I max out the neuropsyche test, too. I don't think it gets at my problem at all. I think my extensive formal education and mad coping skills obscure the truth. Alzheimer's? Possibly--although no known familial history. I hope you do not back off from your blogging. Whatever your final diagnosis, your records will prove very helpful to many in the long run.Anonymoushttps://www.blogger.com/profile/15289416891679083194noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-11093348147358581782014-01-07T18:23:43.096-05:002014-01-07T18:23:43.096-05:00Like others, I am very thankful for your blog, reg...Like others, I am very thankful for your blog, regardless of the frequency of your entries or their content. Please continue to follow your heart. I view a blog as I do a home, in that the homeowner decides whether or not (s)he is up for company.<br /><br />My feeling on reporting symptom etc. repetition, introspection, etc., is that everything is valuable. It all becomes part of a larger pattern that may take time to resolve. I've kept a journal for decades -- re-reading an entry the next day and re-reading it years out can provide vastly different perspectives. We never know what information we document will help us (and potentially others) farther down the line.<br /><br />It is true that one cannot control audience reaction. We can only be true to ourselves, choosing what to disclose and what to keep close to the vest. Both are valid. I honor your choices and I hope that you feel free to choose. Blessings to you and yours for the New Year.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-13267298345439419792014-01-07T17:28:09.089-05:002014-01-07T17:28:09.089-05:00I hope you will feel free to write what you feel l...I hope you will feel free to write what you feel like writing and not worry too much about how we receive it.<br /><br />Just now I'm in the space of having people who care about me tell me that my fears about increasing cognitive deficit are groundless. <br /><br />I'm receiving that in the same way that people who have complained about feeling patronized receive it when someone who was actually doing the patronizing says, 'oh of course not, you shouldn't feel that way.' Which is to say - just because the other person (friend, or reader) feels uncomfortable and wants to persuade us that our losses are imaginary, that doesn't make them so.<br /><br />Just because I test 'normal' on the neuropsych testing doesn't mean I have no impairment; it just means I can still pass for 'normal' as an aging human being. The fact that my current 'normal' is no match for last year's 'normal' rather escapes their notice - at least, until a subsequent round of testing shows I'm a little bit less 'normal' than I was before.<br /><br />Me, I don't care if you have an accurate diagnosis of Alzheimers', or multi-infarct dementia, or normal aging.<br /><br />I have learned a lot from reading a few of your posts (I just got here a couple of months ago, when a friend pointed me in your direction). I expect I'll learn a lot from whatever you write, whether it's directly about cognitive impairment or not.<br /><br />Wishing you plenty of love, light and laughter in all you do, in whatever way you do it<br /><br />Maggienoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-48158382751484263972014-01-07T15:12:07.589-05:002014-01-07T15:12:07.589-05:00Wow, a lot of responses. I couldn't agree mor...Wow, a lot of responses. I couldn't agree more. Life is too short anyway, you need to get out there and dance when you feel like dancing and singing when you feel like singing. I was happy for you when I read you were off on vacation. Write when you feel like writing. Get out and enjoy life when you can. Anonymoushttps://www.blogger.com/profile/02560132598266108913noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-71251269913102907862014-01-07T12:41:25.743-05:002014-01-07T12:41:25.743-05:00I appreciate everything you write because it all c...I appreciate everything you write because it all comes from the heart with refreshing honesty. As a blogger myself, I struggle with some of the same questions. I've been ruminating for the past two weeks about the disappearance of the 'Christmas Letter'. Long newsy letters have been replaced with a brief list of bullet points that list the highlights of the past year. I don't mind if others do that, but that is not me. I have to share 'stories' of my past year - not a brief list of the highlights. So I now agonize over that .... do my lengthier letters somehow convey to others that I think my life is more interesting that theirs? That introspection leads to a low grade depression and a decision that I'm going to stop writing them altogether - or at least shorten my list (considerably) to just a few of my deceased parents' elderly friends who seem to have the time and interest to read and comment on my letters. Trouble is, I've made that decision every year - for the past five years (at least) - and when December rolls around, I can't help myself. I write 'one more letter' - send it out - only to fall into the same mire of regret, come January. I share this because deep down I KNOW that it would be better to just be true to myself and not worry about who reads them or what they think of them (eg. as a single person, does writing about my dogs - instead of my grandchildren - convey immaturity, or worse - that I don't have a 'real life'?) I'm only marginally successful at blowing off those anxieties, but as I read your last entry, I clearly see that you are agonizing over the same things and I want to say to you - "Give yourself a break. Continue to be true to yourself. Write whenever and whatever you want. People appreciate you for being YOU." CELEBRATE the fact that your disease isn't progressing rapidly ... don't worry that you are in some absurd way letting your readers down because of it! I have known of you since I lived in Grand Marais many years ago, have read your books and then discovered this blog a year or so ago. I absolutely love your transparency and hope you'll never regret it. Bethhttp://corgitales.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-35192072463617333972014-01-07T11:14:49.846-05:002014-01-07T11:14:49.846-05:00Thank you for your inspiring story. My grandmother...Thank you for your inspiring story. My grandmother is being effected by Alzheimer's as well. I am looking for different places that we could take her to get her the best care available. I would rather help her myself, but there are professionals that know more about that kind of care than I do. I think the people at <a href="http://www.queenannemanor.com/health-care/memory-care/" rel="nofollow">Queen Anne Manor</a> can help the best in our area.Anonymoushttps://www.blogger.com/profile/03876717259488633073noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-22756819792171076642014-01-07T03:18:09.746-05:002014-01-07T03:18:09.746-05:00I have followed you for months and really find you...<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />I have followed you for months and really find your personal<br />view of this horrible disease very informative. I cared for my<br />husband, and really wanted to know what he was thinking/feeling.<br />I think it is wonderful that your symptoms haven't deteriorated that<br />much - don't apologize. I agree with others, write when you feel like it.<br />We will wait. Thank you so very much for sharing your life with us<br /><br /><br />Anonymousnoreply@blogger.com