Washington DC
Some of you will have noticed that I haven’t written
in almost a month; you may be wondering what’s happened to me. I’m fine, but I just haven’t had anything new
to say. My cognitive lights are no
longer winking out. True, some are still
burned out and unlikely to return, but it seems I’ve written everything I’ve
had to say about them. So it’s time to
end this chapter in my life and close “Watching the Lights Go Out.”
This journey since my initial diagnosis of Alzheimer’s
two years ago has been a wild and amazing ride.
As I’ve written before, I have been and still am grateful for this
ongoing experience; I’ve become a better and more joyful person. Writing here has given me the opportunity to
share the journey with others, thereby clarifying my own experience.
More important, however, has been the joy I’ve felt in
the growth of this community created by you who have been reading it. Many of you have used the comments section of
the blog. At least as many others have
written me privately through
my website. And I suspect there are
others who, for many different reasons haven’t written but still feel part of
this community. All of you have given me
many gifts for which I am, and will remain, deeply grateful for each one of
you.
This blog
has been explicitly about my own personal experience with cognitive decline,
“watching the lights go out.” It’s been
that first-person, intimate story that has captured people’s interest and
sometimes even their hearts. It’s
important to me that I maintain the integrity of that purpose.
I’m going, therefore, to close the blog. I will be writing, however, about the process
of aging in much the same personal style.
I'm not yet sure where I'll write it. Perhaps I will create a new blog for that … or another topic. Perhaps, after a time to make a clear break
with the past, I will re-open this one. I will post something here about where you will be able to find it. But
for now I’m done.
I am deeply grateful.
I would check every day or two, and when I saw you hadn't written a post since September, I would smile. Believing you are out there living your life, busy with family, friends, Church, etc. I was imagining you in a kayak on a river, on Amtrak going to visit, in Church, discussing things with friends.
ReplyDeleteI remember a hospice patient I took care of, who watched every sunset and sunrise. And he always said, "I didn't begin to live until I found out I was going to die." You have somewhat of a reprieve. I had somewhat the same feeling with my embolism. I value and cherish little things more. I bet you are doing somewhat the same thing. Enjoy, dance and make merry. Life is too short to NOT dance and sing. Or laugh and enjoy the love around you.
Let us know when you start another blog. I've enjoyed this one. Take care of you and your wonderful wife. Make Merry.
Thank you , Lee Ann. You’ve been an important part of this journey.
DeleteAnd, if I may speak for others who have read your blog, we are deeply grateful to you too Dr! I came here hoping to see if I could make a self-diagnosis. Both my parents died of AD and I have really had a lot of memory problems. I stayed when my husband died last winter and I felt a sense of warmth and strength when I read how you were coping with your challenges. And I still read every post because you are a charming, insightful man who knows how to make the best of a bad situation. Thank you for your story, your recommendations and the work it took to keep this going. I hope I will still receive an email when, or if, you decide to start a new blog. Thanks again!
ReplyDeleteThank you, Cathy. I promise I'll send out notification if I start a new blog or resurrect this one.
DeleteYour posts have been important insights for me personally and as my parents age. Thank you for your generosity.
ReplyDeleteI am a daughter, step-daughter, niece, and caregiver for individuals with AD. Thank you for your courage to share yourself as you went through this journey. You have touched your readers in many ways that you cannot imagine and for which we are are deeply grateful. Blessings to you!
ReplyDeleteHello,
ReplyDeleteBon voyage. Gassho, Edward
I have read this blog quite regularly and found it very interesting and illuminating. Thank you for sharing your journey so honestly, and many blessings on the next stage of it.
ReplyDeleteThank you so much for your wisdom and insights.
ReplyDeleteI look forward to hearing where you will next be posting. Be sure and let us know. Peace.
ReplyDeleteDear David,
ReplyDeleteI haven't written before, but have very much been intending to, and most definitely must do so now!
I want to say an enormous thank you to you. I have been following your blog from a few months after you started writing. A loved one had just been diagnosed with early-stage Alzheimers and I discovered your blog through an internet search. I was feeling very sad, and frightened. My gran who died in the late 80's sadly had dementia for about 15 years before she died, and I remembered many aspects of her experience, particularly in her last few years, as harrowing. And so when my loved one was diagnosed in 2013, many painful memories of my gran's experience came back to me.
Your blog has given me so much. In the first year I nearly always cried while I was reading it ... my crying was because I felt comforted in something which felt very painful ... I was feeling connected to another human being who was experiencing something similar to my loved one, was writing about it in an incredibly warm, loving, honest and helpful way and in doing so was addressing so many of my fears. Reading your blog I experienced love and hope in an unexpected way, and at an enexpected time. (You've got me crying again as I recall this with such gratitude!)
Your writing is suberb. Compassionate, funny, vivid ... you described many processes which my loved one was also experiencing. Your detailed descriptions of the way cognitive impairment was affecting you in an everyday sense were hugely helpful to my understanding. And they in turn wonderfully enriched the conversations I was then able to have with my loved one. Thank you. You are such a gifted teacher.
As well as the detailed observations you made and the explanations you gave which were so helpful, it was also (as so many people have said) the way you write, and think, and are. The love that came over, your spirituality with a small 's', your openess, the joy you were experiencing, the sense of exploration about a new part of your life, your positivity, your hope, your honesty when you didn't feel hopeful ... they were wonderful, wonderful gifts to receive. Thank you.
As I read on, through the months, I learnt from you at so many levels, and began to come to more of an acceptance of what was happening to my loved one. I became so appreciative of all the things we can still do together, and more able to concentrate on the present. My loved one is still at a very early stage of Alzheimers and is doing brilliantly in so many ways. He is involved in many things and is happy. Blessings indeed.
David, I am so, so happy that your 'cognitive lights are no longer winking out'. That is such brilliant, brilliant news. And again, your posts about that, and your puzzlement about it and your range of feelings as you took the news in, were so moving and enlightening to read.
Thanks too for sharing so many different aspects of your life, your relationship with Marja, and your community.
Reading your blog has inspired me, comforted me, connected me, made me more fully human. It has been life-changing and life-enhancing. So (for selfish reasons!) I admit I feel very sad it is coming to an end, at the same time as feeling hugely honoured to have been able to read it. I will miss it loads ... but couldn't be more delighted at the reason it is ending!!! Your blog has been a rare, and very, very precious gift, an absolute privilege to read.
Thank you for so very much, and yes, very much look forward to continuing to read your writing in other contexts!
Wishing you and Marja and your community every happiness,
Karen
What an honor!
DeleteThank you.
KarenJR has done a wonderful job at encapsulating my own good responses and feelings to Dr. Hilfiker's columns and toward his life's choices. In seeking to write something, I came upon her response, and it nicely saved me about 5 hours of trying to do something good enough to send. So now both KarenJR AND Dr. Hilfiker are on my list of great people! Best to all of you, and all of the bloggers here!
DeleteSodium
Friends:
ReplyDeleteTo all of you who have posted these comments or written me privately, I am so grateful. This community that has accompanied me over this two-year journey has been inspiring. Thanks to each one of you.
David
I am so early in this journey that I was asked to leave a support group for early stage. I made some of the participants uneasy somehow, probably too talkative. Your blog has been my support as I puzzled about changes that I was very aware of even if others were not. Thank you some much for being so honest, open and vulnerable. I love how you changed over time to be more comfortable with receiving love and enjoying your existance. That is huge. I am reading "An Altar in the World" by Barbara Brown Taylor. I recommend it to anyone who wants to increase their awareness of how God is present everywhere. You have helped me and so many others through this blog. Bless you for responding to the Spirit.
ReplyDeleteDavid - we'll miss these posts but are so very grateful we still have you, without your lights winking out. What a gift you are to us @ 8th Day community. I prayed when you first were diagnosed with Altzheimers and I feel my prayers have been answered. Dawn
ReplyDeleteI agree with Anonymous that KarenJR also expressed my feelings so eloquently. Your blog was a godsend which I happened upon, just after my husband was diagnosed with MCI, later early Alzheimers. Your insights have helped me through this journey; God bless you as you continue on your own.
ReplyDeleteThanks for your wonderful article.
ReplyDeleteThis whole blog is nothing but a god send, thank you for all you have done david! there is good news on the forefront though The Next Puzzle Piece to the Cure for Alzheimer's http://hubs.ly/y0ts6b0
ReplyDeleteI don't know if anyone looks at the comments at this point, but want to share that a gentleman named Greg O'Brien is now sharing his experience of early Alzheimer's with NPR. Find them on npr.org- broadcast has been on Morning Edition and All Things Considered. Hearing someone talk about it is very helpful to those coping in silence.
ReplyDeleteAnd, if you check in, I hope you are doing well, Cr. Hilfiker.
How I have missed your blog. Thinking that perhaps I had been dropped from your heads-up, blog alert, I looked up your last blog and just found what may be your last post. I am so sorry... both of my parents died with a diagnosis of Alzheimer's, and I am always looking over my shoulder to see what follows in their wake.Every time I forget something, I quake in fear. I found your blog informative, reassuring, and warm. My thoughts and good wishes go with you. I love your writing that this journey is "just a phase in life."
ReplyDeletethank you for sharing :)
ReplyDeleteDavid, I just came across your blog today. Warm greetings from Montreal, Canada. I pray that you are doing well and just wanted to leave you a comment to let you know I passed by.
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