On Amtrak from Napa CA
I'm on the train home from visiting my daughter and her family in Napa, CA. Friday I decided to walk the family dog and join my grandchildren at the nearby park. The dog sometimes slips out of her collar and needs a simple harness to keep her on-leash. But after at least ten minutes of confusion, trying unsuccessfully to figure out how to put the harness on, I had to settle for the collar, stuff the harness in my pocket and, after I'd reached the park, ask my 8-year-old granddaughter Madeline to put the harness on.
This would not have happened five years ago. Although my neurologist is virtually certain I have Alzheimer’s, he tells me that I'm very early in the disease and that, in the average case, I would not yet have come to medical attention because no one else would have noticed or been concerned enough to push me toward help. But I know that something is wrong: I can't think as well. The confusion around the dog harness is only a minor thing, of course, but my previous IQ was high enough and my capacity to recognize spatial relationships strong enough to keep this sort of thing from happening. If it had, I'd have been pretty embarrassed.
What surprises me is that such little episodes of helplessness don't cause me much frustration or embarrassment anymore. I was the bookkeeper for our little church; in December I made a $24,000 mistake in figuring out next year's anticipated income (ok, that's not a little episode), which created some havoc in the community. I recognize the seriousness of the mistake (and I've therefore given up the task), but I feel no shame or humiliation.
This would not have been normal emotional behavior for me. Before my diagnosis, I took such pride in my ability to do such things that a mistake like that would have devastated me emotionally. But it's different now.
Before my diagnosis with this disease, I rarely even contemplated the possibility of Alzheimer’s, and, when I did, the thought of this helplessness terrified me. Especially in our country, it seems to me, feeling helpless is not culturally acceptable and frequently occasions shame. We disparage the “learned helplessness” of the poor, for instance, as almost the worst of all sins and blame for their own poverty. Our native optimism convinces us that people aren't really helpless: There's always some way out, and it's their job to figure it out.
Some time ago, a student in a class of nursing students to whom I was speaking challenged me. “Aren't you accepting your limitations too easily; you don’t seem to fight against them . If you fought it a bit more, maybe your symptoms would be less intense.” Left unsaid was, "You're not as helpless as you think."
We do sometimes make exceptions for those with unavoidable and obvious mental disability such as mental retardation, traumatic brain injury from war, post-traumatic stress disorder (but notice how long it took us to recognize both of the latter diagnoses) … or Alzheimer disease. And even then, we're not comfortable around those people. Helplessness is embarrassing.
I've been through this before: I suffered from a severe depression for decades before I realized the cause was an organic brain disease. During that period, I was ashamed of my inability to enjoy life; I considered a character defect that I should have been able to overcome. After I understood that the cause of my depression was an unavoidable chemical imbalance in my brain, however, the shame disappeared. I was still helpless, but I didn't have to "try harder" to get over it.
It's the same thing now. I'm not embarrassed when I can't remember ever meeting a person with whom I had a long conversation recently. I'm not frustrated when I can't fix a simple problem with my file drawers. My helplessness is unavoidable. I am not going to get better no matter what I do; my capacities will decline further. This is not my fault.
So I don't fight my inabilities. I can accept this part of myself as real. The sadness continues but not so much the pain of helplessness.
Perhaps part of my symptoms are just my apathy and it would be better to fight more. But even if that were true, fighting my plight has its problems, too: more frustration and tension, less ability to talk so openly about my disease, less c apacity to notice the fine differences in my condition, and so on. I fought my depression vigorously and ultimately it made me feel worse.
Furthermore, I’ve discovered a vocation in this sharing my experience wherever I can, and I can't tell the story if I don't accept the realities of Alzheimer’s. I’m old enough to understand my limitations, my helplessness in these situations. It may be that someone else who fought their disease would do better; I doubt it, but in my experience, at least, it’s been more important to be completely straightforward with my limitations. Acceptance has its own rewards, and I value them highly.
Words cannot convey how deeply moved I am by your blog postings. I followed the WP article to your website and read through your posts from the beginning in one sitting. Thank you for your willingness to share you experience, strength, and hope from your unique and eloquent vantage point. I will look forward to more of your insightful writings and I will take the time to look into some of your past work. Sharing your vulnerability and process so openly is such a gift to the world.ReplyDelete
Thank you, Mrs O. I cannot imagine reading all the posts in one sitting! But I am grateful that you find them meaningful.Delete
I agree with the comment above by Mrs O. Over the last two days I have read through your blog, after I saw a news article about you. When I was in my twenties, my mother (then in her early fifties), had what we thought was a nervous breakdown. After some tests, it transpired she most likely had Alzheimer's disease. Of course it could not be diagnosed without a brain biopsy (something like that anyway). This was in the early 1990's. As a family we tried so hard to protect her from what was happening, rarely talking in depth about Alzheimer's and just assuring her we would always be with her. It's a very long story spanning nearly ten years, in which time, I as her only daughter, spent much time caring for her and sharing any experience we could share together.ReplyDelete
I read your words and it makes me sad my mother didn't have an outlet such as yours - a place she could let people know who she was and how she was feeling. And I include her own family. I have regrets over how we tried to make things normal at the expense of keeping her informed. There was little information about early onset Alzheimer's, and almost no support for people of mum's age as well as young caregivers like me.
My mother died at the age of 60 yrs - the cause listed as pneumonia. She had spent her last 3 years in residential hospital care. She was a courageous woman and will always be my hero.
Whatever trials, tribulations, sadness's and frustrations you have over your journey with Alzheimer's, please know that the essential you will always be there - to you and your loved ones. Sometimes you may have to send a search party in to find you though :)
Keep sharing as long as you can. I have no doubt you are a hero to many - including people all over the world reading your blog.
Reader from New Zealand
Thank you for this comment. I'm becoming more and more convinced that the course of this disease and the suffering it evokes could be mightily changed if we could take it out of the shadow and into the light. We've hidden from it, pretended it wasn't there, been ashamed of it, been embarrassed by it.Delete
What if we all made it public, encouraged those close to us to talk with us about it, faced the possible isolation and worked to overcome it, etc? I suspect one of the worst things about this disease--as far as the person with the disease is concerned--may be the isolation and the inability to share their experience with others.
The other thing that is important in your comment is your belief that "the essential you will always be there." I am very curious about that very issue (eg my post on "State of Consciousness"). I'm beginning to trust that "I" remains long after most of my cognitive ability is gone. There are just too many stories of continued profound relationships that continue deep into the course of the disease.Delete
Indeed, "memories lost" do not create pain - the pain comes as we mourn the expectations that remain. Once we release our expectations, labels, and need to control, we slip into a beautiful "new dimension." We are again able to enjoy the moment - to love. This is not only true for Alzheimer's patients, it's true for all of us.
Before contracting this disease, I "knew about" the importance of releasing expectations, labels and the need to control, but now I can see directly how it works and find it much easier to practice. Perhaps it's easier now that I have Alzheimer's to release these things; certainly other people's expectations of me have changed dramatically. I'm comfortable with not knowing what's coming.Delete
I have just found your unique posting on the web. my father recently died from Alzheimers he was 90 years old and was diagnosed 15 years earlier. He was a brilliant man and still held his dignity until the end. It was very hard to watch my father deteriorate. Their were wonderful moments with him even up until the end. There were moments of recognition where you knew could share love with each other. He would still say his one liners occasionally. I will follow your postings in the hope that they will help me to understand what my father went through. Thank you and my heart goes out to you and your familyReplyDelete
I am so happy that you and others like you are sharing your personal experiences with Alzheimer's especially the positive ones. This is not to hide from the pain of the disease (especially for caregivers and others on the outside of the disease), but it is to say that the picture is not always as bleak as it's portrayed. Thank you for writing.Delete
Perhaps the best feeling I will get today is realizing the joy for you in that you found a "vocation." Which is so close to a "vacation." Am happy I found your blog, and thanks so much for writing.ReplyDelete
I hadn't thought about how close the two words were, but it's true. If one is really in the midst of one's vocation, there's a lightness of spirit, a sense of fulfillment, even a joy. It's not exactly a vacation, but it's not too far off, either. You might be interested in reading my post "Call" on Feb 7.Delete
I am a physician as well and was moved by your posts and by your insights. I think most elements of life are improved by standing boldly and fearlessly looking directly at the "problem". I so applaud your willigness to do this for all of us. I was also gripped by Ms. Russells comment. The roots for vocation (like vocal - a calling) and vacation (vacare - to be free to be empty) are on the face different. But indeed it is through the answering of our callings that we gain a measure of freedom isn't it. A vocation is in my mind different from a job, it is what we have been called to do. It would seem that you may have been called to educate us and in this I pray that there is a measure of freedom and emptiness. We all could only hope to be so -dare I say - lucky ?Delete
Thank you. I actually do feel lucky. Having a "call," a vocation has been central to meaning and fulfillment in my life's journey. My call has changed several times and, for the past several years, I've felt adrift without a clear sense of call. I was constantly waiting to be called. And suddenly, here it is. Like most calls, we don't get to choose it; it shows up and we either respond to it or we don't. Our call comes out of the intersection of the world's pain and our own joy. And I am finding a great deal of joy in trying to alleviate some of the world's pain that comes from keeping this disease unmentionable, embarrassing, and shameful. In the grace of being immersed in call, I find much more happiness than the sorrow of this disease.Delete
David, I'm a member of a closed group on Facebook called 'Forget Me Not' that is a place for dementia patients, families and friends to bond, vent and laugh. We saw your story in the Washington Post and we'd love to 'meet' you. You can email me and I can show you how to join.ReplyDelete
Thank you for sharing your stories of helplessness and your stories of reward. Thank you for helping to chip away at the silent stigma that surrounds Alzheimer's.ReplyDelete
My father was diagnosed with small cell lung cancer in September 2012. I flew halfway across the world to see him and was stunned not by his physical deterioration, but by his failing memory and mental acuity. It is then that we learned that he was nearing the mid-stages of Alzheimer's.
I returned to blogging as a way to deal with some of the emotional conflict I felt at seeing my pillar of strength fighting an invisible cloak of forgetfulness. Finding your blog has been a true blessing. Your perspective from the inside is a gift to us all who stand on the outside trying to understand.
Thanks for your comment. Your seeing your "pillar of strength fighting an invisible cloak of forgetfulness" is such an important insight. I suspect it's at the root my my children's suffering now. For lots of us, parents are those pillars of strength and we somehow fantasize that they will remain that way. But even aside from Alzheimer's, all pillars eventually crack, crumble or disappear. To the extent that we try to hang on to the impermanent we're going to be unhappy. The task is to let go of what is no longer there (or gradually to release that which is gradually disappearing) and to welcome the new that will surely come. We don't like to reverse roles and "take care of" our parents, but many people find great reward in that, too.Delete
Thanks for writing.
"Acceptance has its own reward" is eloquent indeed. My cousin lost his wife to Alzheimer's last year. The members of our WHS delegation shared a recent article about your work, and I will share this material with him today.ReplyDelete
From across years,
Hi, Ev. It's been a very long time! Shep said he would let you all know.Delete
Thank you for your blog. Please, keep writing.ReplyDelete
Thank you, sir, for sharing your experience. Perhaps writing about it will be therapeutic for you, and all of us who are experiencing similar symptoms ourselves or with an important person in our lives. I will follow your writings now and will pass them on to others. As Mrs. O said, your writings are a gift to the world.ReplyDelete
Thanks, Ann. Yep, this is certainly therapeutic for me. After the diagnosis one's inner life changes dramatically; I need to keep aware of how I'm changing and what it means for me, for Marja, for our kids and for our immediate community. I only hope it's as valuable for others as it is for me.Delete
Dear David: I just learned about your blog from the WP article and will now be following it closely. I just copied 80 brief descriptions of you and the blog to hand out at a CME event on Friday where 80 primary care physicians will come to spend a day with Dr. Ab Desai and Dr. Marc Agronin, learning a new way of thinking about dementia. I am a newly retired academic psychologist and have worked with folks with dementia for many years. I know you have much to teach me, just as I have learned so much for Dr. Richard Taylor. My husband (a UCC clergyman) and I wrote a book called Aging Together (2011) in which we argued that we need to learn to view dementia as a disability that is addressed not through wheelchair ramps and hearing loops, but through hospitality and kindness in community. Since it appears that you are open to acknowledging your faith, I can't recommend highly enough a new book by Scottish theologian, John Swinton. It's called Dementia: Living in the Memories of God. I'm very excited that I'll finally be able to hear him speak this summer in Edinburgh at a conference on spirituality and aging. If you and your wife want to come to Edinburgh in July, you'd be most welcome at this conference. All the best to you and your family, and blessings for the journey which I shall follow with care and caring. SusanReplyDelete
Thanks very much for writing. I'm very happy to learn that people (especially medical people) are considering "new ways of thinking about dementia." I look forward to swimming my way through the deluge of attention after last Sunday's Washington Post article and reading your book and that of John Swinton. I, too, am convinced that my faith community with its "hospitality and kindness" will be THE crucial variable in how I and especially my wife Marja experience the next years. I'm beginning to think that embarrassment and shame and the isolation they bring about are the worst parts of this disease; if it were possible to deal with those helpfully (and I'm sure it is) then perhaps there would not be so much agony around the diagnosis.
(I would be grateful if you would email me your email address so we can stay in touch: david(at)davidhilfiker(dot)com.
Hi, I read about your story and this blog on Ellen Painter Dollar's blog. Thank you for sharing your experience with us. I'm very moved by your comments about helplessness and acceptance, and by your honesty. I look forward to reading more of your posts, past and future.ReplyDelete
I hope you are getting involved with clinical trials. There are both AD and MCI trials. Can help you find one if you like - neurologist who specializes in AD.ReplyDelete
Thanks, David. Yes, I will be entering a study at Georgetown University Hospital: A Randomized Double-Blinded, Placebo-Controlled Multiple Dose Study toDelete
Assess the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of BIIB037 in Subjects with Prodromal or Mild Alzheimer’s Disease Biogen Idec
The pre-study evaluation seems to be incredibly thorough, so I feel lucky to have found the study.
Thanks for writing.
I think what you wrote has value when confronting any life altering disease. I think of Roger Ebert, who accepted his diagnosis of cancer and how it changed him with grace. This idea that you will fight your disease is misleading. All you can do is accept treatments that may or may not help stave off the disease progression, and in the case of cancer and good fortune, possibly lead to a cure. When we talk about "fighting the disease" or say someone is strong to defeat a disease, the implication is that if they don't succeed at something they actually have little control over they weren't "strong enough." I think the way Roger Ebert and yourself discuss it is much better. You accept it for what it is and find a way to live life under your new circumstances, which would of course include seeking out treatments that might help mitigate it.ReplyDelete
"Fighting" one's disease is in one way quintessential of the American pioneer spirit ... overcoming impossible odds through strength of will. And at our hospice for men with AIDS, I have, indeed, seen people keep themselves alive until Christmas or until their son arrives, or whatever. And we all have to make that individual choice ourselves. But the downside of "fighting it" is the inability to accept what we've been given, to take the little bits of joy, of love, of gratitude. I receive well-meaning suggestions regularly about this oil or that vitamin or this new drug. I AM in a study of a very experimental drug (which I'm doing mostly because I believe in medical science), but I'd rather not chase rainbows during this important time in my life when there's so much to do, to see, to be.Delete
Thanks for writing.
Please look into to coconut oil and Alzheimer's . You tube has some very impressive you tubes's on the subject. my mother is n the final stages. I just started on the coconut oil. Please give it a try! CrystalReplyDelete
GOD bless you, Dr. Hilfiker. I just discovered your story via the morning CBS newsshow and am intrigued. most of the men on my father's side died with alzheimers. I suspect that I'm also in the crosshairs. I'm not so much afraid of the possible suffering. I'm sad that my wife and kids will bear the brunt of the suffering. but I want to face the likelihood with humor, understanding, even as an adventure. I don't want to hide. I want to celebrate who I am, who GOD made me, whether with A our without A.ReplyDelete
As far as I can see, we with Alzheimer's do not suffer nearly so much as our partners and family. Once we get over our fear and embarrassment, we with the disease seem to be able to enjoy our days; it's harder for those we love. Part of our task is to forgive ourselves the pain we will put onto those we love.
Your blog is an incredible gift. Thanks for every word you share. I have had depression my entire life, but no one noticed when I was a child and no one will accept it now that I am 71. I am a survivor, and my goal is to teach others that depression does exist. I have been at my present residence for over four years. People still tell me, on a daily basis, that I must smile. I refuse to smile unless I feel warm and fuzzy-like. I do have some who understand, and one by one, day by day, I tell my story, even if it is Unmentionable! Thanks for giving me courage.ReplyDelete