Napa
CA
As a child I mourned the loss of frontiers. It seemed to me that there were no adventures
into the completely unknown left, nothing where you met challenges never before
encountered. During my career as a
physician and especially during my fifteen years at Joseph’s House (our hospice for the
homeless), however, I began to recognize the last stages of death as a true
adventure into the unknown, a frontier that never disappeared. It’s not that no one has ever died before, of
course, but no one has returned to give us a map, so in our own dying each of
us enters into the unknown.
Alzheimer’s, too, is an adventure, the last stages of
which are shrouded in mystery, and each of us with this disease will explore an
unknown wilderness. There are lots of
people who’ve gone this way before, of course.
Of the 40 million US residents over age 65, almost 5
million have Alzheimer’s. And although
I write this blog to dispel some of the mystery, ultimately neither will I be
able to tell others what the last stages are like. In a recent
post I wondered whether I’ll be conscious toward the end when I appear to
be completely out of it and, if not, what it will be like. We don’t know.
My using the word “adventure” to describe my journey
into the darkness might seem like a form of semantic denial, soft-peddling the
likelihood of future suffering for me and people close to me. I don’t believe I’m in denial, but even if I
were, does that change the reality that this process will be an adventure?
Perhaps we don’t think of Alzheimer’s as an adventure
because we want happy endings and believe that the word “adventure” applies
only to successful adventures, where
the hero faces enormous dangers and suffering but eventually returns to tell
the exciting story. But what if the hero
does not return from the mountain; or does, but without having reached the top;
or does reach the top and returns, but emotionally scarred or physically
damaged? Was it any less an
adventure?
I’m grateful
that I can still sense an excitement.
Growing up, I felt cheated of uncharted territory. But each of us with this disease must explore
it for the first time; each of us faces a unique adventure.
Hi David. This is Shannon Doyle, we met at Joseph's House a few weeks back when you came to talk to the staff about your Alzheimer's. I was with Mary my spouse who also has Alzherimer's.
ReplyDeleteJust read the Washington Post article this morning and noted your mention of "when to give up driving." I would suggest that you consider it. The problem is that you won't know until it is too late that you should have stopped driving. In her early days of the disease one of the reasons I knew Mary was in trouble was because when I was driving her around (before she stopped driving,) when sitting at an intersection she would say, "Why don't you go? The light is green." It wasn't green of course it was red. The opposite would often happen when approaching an intersection and she would yell, "Stop the light is red!" - scaring the heck out of me when in fact the light was green. Needles to say, from that point on Mary never drove again. Of course red & green may never be a problem for you, but something will and the stakes while driving are very high.
My experience with you and Mary was important to me, and I have been very grateful to both of you.
DeleteThanks very much for writing, especially about such an important topic (that I need to write about at some point soon). This issue of driving will obviously be important to me. I've asked my neurologist specifically about the question, and he felt that my disease was too early for me to worry about it. I presume there is an objective level of cognitive impairment at which point, he will recommend not driving.
The other thing that makes me more confident about driving is that up until now I have been highly sensitive to my impairment, perhaps too sensitive. So, I suspect that even before I reach whatever level the neurologist would talk with me I would be aware of it and stop. And if not, I will certainly take the neurologist's advice.
But this is a complicated and very important issue. Thanks for raising it.
I read the Post piece this morning and came by to say hello. I will be checking in often to see how you are. I think it is an admirable and generous effort to write about your changes here. So much of our lives are lived behind closed doors, and nothing tends to be more hidden than these stories of decline. Yes, you are on a journey and an adventure. Thank you for sharing the sights along the way.
ReplyDeleteThanks, Andrea. I look forward to sharing parts of the journey with you. I'd say let me know as you come back, but I'm afraid I tend to forget names pretty easily.
DeleteThis is a fascinating blog. My grandmother had Alzheimer's and knowing that it is in my genetic past somewhat terrifies me. Like you, I've always considered my intellect one of my greatest strengths and so I fear the loss of it more than any physical infirmity.
ReplyDeleteI hope you can continue to use this blog to provide unique insights for many years.
Hi. It seems that today is my day to think about fear and terror (and my post today and another one in a few days deal with it). Exactly what is your fear of gradually losing your intellect, your greatest gift. I understand sadness, I understand grief, but where does the terror come from? I also had a powerful fear of the disease until it was diagnosed. As I've gradually lost my intellectual powers (granted, I'm not very far into the disease yet), I've gained an emotional openness that has actually made for richer life. I'm curious about losing my "greatest strength." the Buddhists have a great insight here: It's hanging on to your conception of yourself that causes suffering. I believe they're right and am doing my best to learn to let go and accept the transience of all things. And, so far, it's not been that difficult. In a sense the disease has become one omnipresent learning laboratory.
DeleteAs crazy as it sounds, it's been good.
David,
ReplyDeleteMy maternal grandfather was in dementia most of the years I remember him. He was a wordly man despite having traveled little so the stories he spun were endless and this helped mask the condition.
My maternal grandmother followed him off the cliff though they had been divorced since before I was born and thus did not endure it together.
My mother, with only one sibling who took no part in their mother's care, watched her mother go over the cliff and linger in body only for several years.
So when her turn came, she could see the edge coming from two perspectives; that of her own mind and that of the history of watching her mother go over it. She lived in terror of it, and in abject fear of existing in body only, a state she abhorred.
The last time I saw her, because I could not bear the pain of not knowing her and her not knowing herself, she looked at me and said, "You look just like one of my sons." When I asked her which one, she let her head fall on my shoulder for a few seconds and then walked away, oblivious, or at least seemingly so.
Genetics being what they are, I suppose I will get my moment of recognition one of these years though I hope fervently that I am wrong in that expectation. Thank you for having the courage to face this openly with us. I am not a praying person, but I will nonetheless pray for you.
Ken:
DeleteI've been thinking a lot about your posts and your grandmother and mother. In today's post and another in a few days, I'm trying to examine this fear and terror we have. What I'm wondering is whether Alzheimer's is very painful for the person themselves. Certainly for the caregiver it's VERY difficult. But did you get much sense of how painful the disease itself was for your mother in the here-and-now. You said she had feared it ahead of time, but was her experience as bad as she feared?
I'm sort of wondering whether there's a vicious cycle that's out there. We fear Alzheimer's so we don't talk about it so we don't really know about it. Ignorant of what's actually happening in the experience of the person with Alzheimer's, we tend to project the suffering we feel watching her onto her. But I'm wondering if that's how she experiences it. And if she continued to feel terror was that about the present moment or from meditating on her future?
Hi David, Danny from New Zealand, I was touched by you story and will follow you blog with interest.
ReplyDeleteMy good wishes to you and your family
Danny Greene
Dr. Hilfiker, I accidentally came across your blog and decided to read and I thought it a great practice for you to start writing everything down. My ex-mother-in-law is a victim of this disease and I saw her last October while visiting in the South American country where she lives. Even though I was never close to her it was heart rending to see such a highly educated and truly smart individual in that condition and even though I am not a doctor, I am a Wellness Consultant, I recommended a few things that "May" help her condition (emphasis on may). They were not designed for Alzheimers but have been known to help the brain. I was very surprised when her son called me to say that her doctor said that he noted a bit of improvement, but that it could be temporary. Yesterday I learnt that her condition did not worsen and it has been five months.
ReplyDeleteA few days later while in the same country, I learnt that a cousin was also in the same state I just could not go to see her.
After seeing your story, I would like to gift you with these same products for you to try. They are strictly evidence based (not for Alzheimer's). You would not hurt my feeling if you refuse because I am doing this simply because I don't want to feel guilty down the road when and if your condition gets worse and beat myself up by saying I should have. I can be contacted at 703-662-3748. In the event I don't hear from you I wish you best.
I appreciate your offer. Possible treatments tend to proliferate around diseases that have no cure. (Four or five people have emailed me with different suggestions since the Washington Post article on Sunday. My bias is not to get side-tracked with them unless they’ve been demonstrated in formal trials to be effective or if there is a trial in progress that I can join, which I am doing. I’ve actually written an entire blog post ("Why Not Try This" on March 8) on this subject if you’re interested.
DeleteAgain, thank you for your offer.
David:
ReplyDeleteI, too, just read the article in today's Washington Post and was moved to come here. I'm overwhelmed by your willingness to share this journey in such an open forum, and I know it will be a blessing to many. While I have had members of my family and close friends over the years with Alzheimer's, I was always - for lack of a better phrase - on the outside looking in. I'm grateful for your desire to let us all in through the door, and I hope you know that my prayers and those of the many others you have touched in your life and career go with you on this journey.
- Matt
Thanks very much for commenting. I have felt very supported and loved in the last few days as folks have responded to the Post article.
DeleteDavid
Dear Dr. Hilfiker,
ReplyDeleteThank you. Thank you for so much. Thanks for having been the sort of doctor too many are not---the sort of doctor our society and our world desperately need more of. Thanks for this courageous public diary and the support it provides and will continue to provide people with serious disease.
I'm no stranger to these issues. My mother, whom we care for here on our Virginia farm, has senile dementia, and my sister-in-law, who lives in Massachusetts, has advanced Alzheimer's. My wife is a P.A., currently working in an extended-care hospital. And I was a victim of reflex sympathetic dystrophy (chronic pain syndrome), a nightmare that lasted one year but from which I have miraculously largely recovered. I had very limited use of my forearms and hands during that year, my hands were red and swollen, and I suffered from a strange, indescribable, nearly continuous ache in my forearms that at times reduced me to a screaming madman. It responded but slightly to medication. Numerous physicians, including UVa neurologists, failed to diagnose the disease---it took 4 or 5 months before I had a diagnosis. I was told that the condition was incurable and that it could spread to other parts of my body. Many RSD victims are driven to suicide. So in essence I was living with the possibility of terminal, or quasi-terminal, disease. I was able to cure myself through intensive physical therapy consisting of exercises I gleaned off the Internet. I learned that I had to retrain the affected nerves by doing the things that hurt.
Well . . . that's my own, little, story about my illness. I hadn't intended to write it, it just spilled out.
You can be sure that many people, including me, will be reading your own story with deep empathy and appreciation.
Sincerely,
Stephen
Mineral, VA
At least with Alzheimer's there is no direct physical pain. On your behalf, I thank God for that.
Dr. Hilfiker,
ReplyDeleteI am grateful to the Washington Post for running the March 30 article regarding your "adventure," as this blog post so appreciatively names the process. I was with my father when he declined over a number of months (cancer) and he viewed his experience toward "the darkness" as you state above in very much the same way. Though he was by no means "happy" about his terminal illness, he was grateful for the life he had, and often said that even during the toughest times, "There are millions of people in the world who would trade places with me in a heartbeat; I'm a lucky man." Unbeknownst to him, that led to the greatest single lesson I believed he ever taught me (and I'm 41).
Your attitude of charting the unknown, with the admirable enthusiasm that you had for childhood adventures, is what - in my humble opinion - drives us to learn about human nature at its most fundamental level. I have no doubt that the impact you are making, and will continue to make, through the sharing of your journey will help change the face of Alzheimer's research and its perception. Thank you for the insight and perspective!
Regards,
Chris Little
Thanks for writing, Chris. From what others are writing to me, your experience with your father is not unusual. No one is happy for this diagnosis, but we can be grateful for our lives so far and approach whatever is coming with curiosity. As with most other things in life, things are considerably easier if we approach them without prejudice, without expectations.
DeleteDavid
Hi David,
ReplyDeleteYou have lead a very productive life and helped a lot of people, and I applaud you for that.
I have a question that I have never got a chance to ask of a person with Alzheimer's: why don't people afflicted with this illness, before they completely lose their faculties, commit suicide? This would seem to me to be a very understandable and compassionate action in light of the inevitable decline. I ask this question very seriously and I would appreciate your answer very much. Is the will to live simply too strong, and the decline too gradual, to provide a strong moment in which the option of suicide becomes viable? Thanks.
Richard, I appreciate the bluntness of your question. It is one of several emails that have stimulated me to write a new blog post that is tentatively entitled "Fear?" that I should publish within the next few days.
DeleteAs for the specific question of suicide, I would refer you to the new post for my personal answer. From what I can see from here, life will retain too much meaning to want to leave it early. Obviously, I can't answer definitively for other people, and perhaps that will change for me, too, but I have several ideas why people might not choose to suicide..
First, while their lives retain their meaning, there are a few but not very many people who will suicide just because of the prospect of future suffering. If life is worth living now, we hang on to it. We are, after all, attached to life.
Second, as I mention in the post, the suffering of the afflicted individual may not at all be what we think it is and there may be little reason to suicide. I have had correspondence with several people who tell beautiful stories about the happiness of patients with very destructive disease. It may be that lots of people with Alzheimer’s don’t experience the suffering that we (not cognitively impaired would imagine).
Third, one’s outlook on the value of life frequently changes as one gets sicker. I founded (and worked for many years in) a home and hospice for homeless men with AIDS, most of whom were admitted when their symptoms were relatively mild. On admission some of them would see other patients about to die and vow to suicide (by overdosing) before they got “that bad.” As far as I know, none ever did or even tried to. Things look different as we approach the end. We lose our capacities gradually so our baseline for what's constitutes a "meaningful life” gradually changes.
Fourth, many people with Alzheimer’s lose their ability to suicide before they decide they want to. The novel Still Alice (written by a person with a lot of experience with Alzheimer’s patients) depicts an intellectual college professor with early-onset Alzheimer’s. She decides she will suicide when it gets "too bad," so she writes herself a note and places it in the medicine chest with a bottle of pills strong enough to kill her. Over the course of her disease as she gradually declines, she discovers the note at various points in her decline but gradually loses the capacity to remember what she meant. Ultimately, she wonders who this woman is who is trying to kill her by writing notes to her.
I don’t know the suicide rate of Alzheimer’s patients, but I wouldn’t be surprised if it were low.
David
Thank you so much for your blog, David. I will share this with my Buddhist meditation group this week, here in Australia. Years ago, I did some volunteer work at Joseph's House,and also spoke with you privately about depression and suicide, following my husband's death. You were kind and wise, as you continue to be, profoundly so. What you share here is so important--I saw this in my mother's last years, how present she was when supposedly 'nobody is home.'
ReplyDeleteWith gratitude,
Joyce
Thanks, Joyce.
DeleteAlthough I claim a Christian faith, I have also spent considerable time with Buddhist teachings over long meditation retreats. As I reflect on this disease, Buddhist wisdom become more and more profound:
** Attachment to the self is a cause of suffering.
** Attachment to any image of the future
** fear of the future causes pain.
** Not really seeing the truth (denial) is a source of pain.
** Equanimity is a way through much pain.
** The only place it is possible to live is in the present and in that moment there is only infinite presence.
Although I think I understand most of that, I can't yet live it fully; nevertheless, it provides an important touchstone as I look at each day in front of me.
A disease like this makes it much easier to get in touch with truths that are otherwise much harder to access.
Thanks again for writing.