What a downer of a topic! Who wants to think or talk about dementia, Alzheimer’s, losing one’s mind? Yet it is the “third great fear” in Buddhist teaching, so clearly the ancient Buddhists wanted to talk about it. They knew that the best way to transform and dissolve fear is to face it. Well, today I’m going to try something that may not be possible—find a positive, uplifting and encouraging way to talk about this.
Well, let’s start by being honest: pretty much everyone over a certain age either knows someone who has dementia (maybe a parent) or worries about getting it themselves, or both. It’s the new great taboo topic, replacing sex and money. Try bringing it up at a party and see how far you get. Let’s also point out one obvious bright side: until recently most human beings didn’t live long enough to acquire dementia, so this illness is a byproduct of modern medicine’s gift to us of longevity. I somehow doubt that anyone reading this is uplifted by that fact, however.
I said in an earlier post that ego can’t conceive of death. But it can conceive of losing control, of losing its capacities, of witnessing its own slow dissolution. For many people that prospect is more terrifying than death, precisely because not only can we conceive it, we can watch the devastating toll it takes on other people and their families.
So this fear is the big kahuna, so to speak. But until the day comes that you get that diagnosis, what is this fear, really? It is nothing more than a thought form, something that might be, could be, that would be terrible if it were real, but isn’t real now. What a teaching! The lesson of all Buddhist teaching, really, is that most of what we think is real is just a construction out of the bits and pieces of memory, sense perception, imagination, and emotion—the flotsam and jetsam of body and mind, what Buddhism technically calls the five “skandhas” or “heaps.” See through this construction project and freedom dawns.
Yes, terrible things could happen to us, at any time. Terrible things are happening right now, everywhere. If you would like to scare yourself, make a mental list of such terrors, go over it several times until your heart pounds, and prepare yourself for a sleepless night. If you would like put some space around these fears, here is a teaching that Thrangu Rinpoche gave once when asked directly what happens to practice and wisdom when a person has Alzheimer’s.
“The sense faculties and mental processes are damaged,” he said, “but the underlying Buddha nature is unchanged.”
These words provide a strong hint as to what this Buddha nature might be, and what its qualities are. One of them, according to the teachings, is luminosity.
I don’t know if I have succeeded making the topic uplifting, but I’ve managed to write 500 words about the unspeakable and I’m still here. I hope you are too!
I do know someone with dementia, and she is perfectly content. She enjoys each moment as it happens, even though she can only recall things that happened years and years ago. She still remembers when we taught together 25 years ago, but doesn’t remember seeing me last week.
Seems to me that is not a bad situation. There are times I wish I couldn’t remember the dumb thing I said last week! or have today’s moment disadvantaged by remembering what someone said to me the last time I saw them. Even when I try to remember that they are entitled to saying dumb things just as I am.
Yes, dementia may be a help in being totally present in the moment.
Julie
Aloha Lew, and thank you again for a great reminder. Living with a cancer, there is an endless stream of thoughts that undermine my day to day ability find peace and joy in just this moment. Reminders like this are always appreciated.
In some moments of clarity, I can step out of the mental prison of regrets and fears and remember the other beings in this world that suffer and find some measure of gratitude for just this breath.
My older brother was an early student of Suzuki Roshi at SF Zen Center. He was taken from us by an under age drunk driver on a sunny afternoon. The worst possible event in my life. I was sure it would break me in two. It didn’t.
Some years ago, before anyone had heard of Bernie Madoff, I was victim of a similar embezzlement scheme. The worst possible event in my life. I lost everything: my home, my new car, my boat and the little liquid cash was already spent to cover bills. I was sure I would break. I didn’t.
Nine months ago my left shoulder was operated on for the fourth time. The outcome was bad news: I needed a complete shoulder replacement. The titanium joint would be a rough procedure and would not give me the range of motion I would need to live the active life I had always known. I felt broken. I wailed in misery and pity. And then I realized, in a most zen-like manner, that pain was inevitable in this human body. But suffering is optional.
So facing the possibility of losing my mind is but another choice: To go on a mind bender, or to focus on my current situation with loving, compassionate awareness. And doing that is the sweetest medicine for the soul.
Gassho
Hi Lewis,
My mother and all of her siblings had alzheimer’s so all of us cousins are keenly aware of the possibility of developing this disease.
The mood swings, anger, and irrationality have touched us all.
Now, as to forgetting, erased memory, all that, doesn’t scare me as being in a void of no successive thought patterns seems to be ok with the afflicted but not for a loved one who is no longer recognized; shared memories gone…clinging to what we ‘knew’ of the person. Such great lessons for us.
My fearful thoughts are the possiblity of my husband having to care for me…if he wanted to..
My mother became docile while her sister became a very angry person who drove her son and his wife crazy…I don’t know why the didn’t institutionalize her.
My uncles were up and down with their emotions.
One found wandering naked on the golf course..in the night..
So, yes, when I forget things…simple things, I become concerned for a few minutes..and let it go. I know there is a possibility…and am learning to accept that and also to
challenge my mind as best I can.
Good topic, Lew. I like the way you’ve approached it. However, dementia isn’t just another thing that can happen to us. It’s something that takes away our ability to deal with it and everything else. It may be my only real fear, but not because I would be losing my mind. What I’m afraid of is not having some plan in place where I can be taken care of when I’m no longer able to take care of myself. My children will not likely do it (for whatever reason), and I can’t count on having a spouse around, or enough money for a nursing home, or an adequate long-term care insurance plan.
I’m not afraid of what might kill me.
I am afraid of what can leave me with neither awareness nor options.
Having had the experience of being without memory or cognition for a couple months (compliments of Encephalitis, an acquired brain injury) I have an inkling of what it might feel like to experience Alzheimers. I remember hearing the words “don’t you remember … yesterday?” I recall hearing those words for various reasons, and no matter how hard I tried, I could not remember what (I was told) actually did transpire. Through no effort or virtue of my own, this was only a temporary state, but I know that there exists the possibility of it re-appearing as my (or anyone’s) future.
This possibility, along with with my own experience, tells me that there isn’t much we can do to prevent or protect ourselves from it’s appearance in our lives. We can, however, and must, develop something within ourselves that is not dependent on time, circumstance, chance or fate. Something inviolable and untouchable, uninfluenced by outside forces. Something that remains independent of the intellect or thought-self. Something that will not allow us to hide behind any contrivance or pretence. Could this be the Soul?
Hi Lou:
Thanks for taking on this very challenging topic. I fear I am right there. I can still keyboard, although I “forget” how to do simple things to access the Web — hence my criptic message to you that I couldn’t read your entire post! Right after sending it, I took a few deep breaths and was able to figure it out. I still haven’t figured how to efficiently use “Face Book”
One of the interesting things that is happening is something my teacher Steve Gilligan used to call “negative hallucinations”–not seeing something that is there. Again and again, I look for lost items that turn out to be right under my nose, so to speak. It is absolutely bizarre and so frustrating.
My syntax is also breaking down and ability to retain things in mind enough to follow complex arguments. So frustrating. This is compounded by internal pressure to remember and a sense of urgency.
My ability to remember proper names has always been a challenge. Now it is hard to keep track of Newspaper stories because I keep forgeting the Names of antagonists and protagonists.
As can be seen, I still can use pretty complex words when writing but while speaking, forget it! Shame that I am “less than’ is hard to shake. And I find it hard to accept that it is happening. It feels like I am “disappearing” but is more than an “ego” thing. It feels more like something essential about me is going away–something much larger than the ego. If, as Rilke has said, “My looking ripens things” I fear the universe is losing an important facet in the Indra’s jewell
It is also hard to deal with what seems like constant headaches, something I never experienced before.
It is hard to admit that it has taken a very long time (and many rewrites) to get this down.
Thanks for listening,
Rob
Hi Lou:
I just did. It seems like I am asked to send a reply to a reply. Things like this are confusing to me.
For the past three years, I’ve sadly watched my mother’s progressing “dementia,” which appears as a loss of memory; fear around this loss of memory; loss of her personality adaptations to life; and to a degree, loss of body control & ability to care. The interesting thing is that while I feel great sadness for her decline, at no other time in our lives together have I felt a heart connection so real and profound. I have no doubt that Buddha nature abides in her; it appears as warm sun when the winds disperse the clouds of her small mind, a mind which she holds with less tenacity than ever before.
For myself, and cousins who’ve watched similar happenings with my aunts and uncles, we’re saying, “not me.” Please help us exit this body before we become lost in it.
I blame the medical technological approach to life-care; a friend of mine says, as we face our sixties and seventies without the financial resources that are required (yes, a separate topic but equally scarey), what is really needed is just to make friends with death. I don’t know which is scarier. So there it is again: fear, more lessons for us fools.
I have to say that I’ve had that moment of worry when I couldn’t remember some simple thing. Is it Alzheimer’s? Is this the beginning, I always think. But if that is where I’m heading, my next thought is, then I’ll deal with it when it happens. Today I’m leading this life in which I remember most things. Today I’m healthy enough for normal activity. Today I have a day to spend with my beloved. If it all changes tomorrow, then tomorrow I will deal with it. I don’t want to ruin today worrying about something that may never happen.
But I could certainly use some help on the second issue, Lew, about the underlying Buddha nature. If everyone has a Buddha nature, even Hitler, Stalin, etc., and I believe that we all do, what does it mean to say that while the sense faculties may be damaged, the underlying Buddha nature remains unchanged? If we don’t have the faculties, how can we realize the Buddha nature? We all have the potential, of course, but doesn’t a fully realized Buddha nature require intact faculties?
In being kind to ourselves we learn how to be kind to others. True compassion and warmth are the abilities of some who have gone through suffering to the same or similar degree that is being witnessed in each day all around us by others. The more we cling to, the harder it is to let go.
So, certain habits I have been dropping through the years with the intent of feeling life without getting what I had wanted, and ending up fairly pleased with a more simple and connected experience with others who take less, or have been given less. I can watch a leaf in the wind, and feel it is me, being blown around by ego.
My mind is no exception, I don’t see it’s main purpose to be a bank of ideas and facts. I shall always be fond of the communal nature of the changing sky, and how the natural world around us has a life similar to my own ups and downs, of taking in and letting go. Nature is my master, that I do not own
My father is now being helped with hospice care, a result of his progressing dementia, which, in his case has destroyed not only memories, but increasingly, the ability to speak and to move body parts voluntarily. He needs more and more care and becomes very agitated and angry in the night sometimes. My mother is the one who suffers so much more–without a Buddhist perspective and without too much memory of her own, except that she is out of control and their lives have changed far too fast for her to adjust. As all try to do, I am making great effort to provide any comfort that is possible, emotionally, spiritually, physically–far, far too little–and working to develop the perspective and skills for my own aging. Right now, there’s no overt fear–it comes and goes–but Rebecca stated the ultimate question clearly: it is probably not possible to realize our true nature in the physical body and in our actions in life when the mind has been destroyed. Can you comment, Lewis??
Thanks for everyone’s comments. When Thrangu Rinpoche said that while the mental faculties are damaged in Alzheimer’s the buddha nature remains, he did not mean that we ourselves could experience it or access it in the ordinary way we access things, i.e. through our mental faculties. Buddha nature is like aliveness itself. An alive thing has it, is it, expresses it.
As some people here have noted, people with Alzheimer’s themselves can be quite sweet and open, like Ronald Reagan seeing a book about horses, and saying, “Oh, a book!”
Our life is always so incredibly fragile–everything about it could go at any time. That’s how it actually is.
Mom has Alzheimer’s, hubby has Parkinson’s and seems to have dementia (have been through times with his having many hallucinations) I get frustrated. Stop and breath. When I forget something, thoughts of mom and my hubby, rush in. Then the pity pot. Not afraid of death. Afraid of burdening my children. Afraid of losing my temper at mom and hubby. Have taken Boddhisatva vows, but not always compassionate for self or others. The worst part is witnessing the paranoia in my formerly gentle, trusting mother. The inability to do simple mental tasks for my hubby. The worst part is when I become impatient. Dementia sucks.
helpful posts, everyone. I sure struggle at times with this fear, along with others. After thinking about this one for awhile, I go back to Thrangu Rinpoche’s “underlying Buddha nature unchanged,” and Lew’s “luminosity” as a quality of Buddha nature…
as things change around us and in us, our essential selves are unchanged..
luminosity is a quality that has always been present in Buddha nature, and will always be…
these sound like the brass tacks for practice in the new year. As I age, conditions arise increasingly for worry, fear, anger…arghhhh. More and more, I’m making an effort to drop these, and simply practice. It’s a shaky proposition, sometimes; but seeing the worry, fear, anger and all the rest of it as reminders to practice means that….I have no excuses….? That luminosity is one quality that underlies all, gets we back to my cushion once more…
metta, everyone!
It’s an obvious point, but the fact that we can think about Alzeimer’s and have fear about it means that we are actually in pretty good shape. Fear means you are alive!
I want to pull on that thread encapsulated here:
“But until the day comes that you get that diagnosis, what is this fear, really? It is nothing more than a thought form, something that might be, could be, that would be terrible if it were real, but isn’t real now.”
I find myself worrying about a number of things, climate change, the current state of the country, the world, peak-oil, and my increasing vulnerability to deal with the outfall of these things as I age. I actually lose sleep over these things. I have to constantly remind myself that the fear of these things are thoughts, that right now, none of these things is what’s in front of my nose. Are there any tools I can add to my practice to help with that?
Thanks,
Willy
Ho, friends,
My (adopted) sister C died in Portland a year ago, following a ten-year slide into Alzheimerland. At first, her adult son was keeping track of how she was doing. When the “D-word” was mentioned I went there and got connected with one of the agencies that was assisting her, and continued to rely on her son.
Two years later the son died. As I was hauling freight at the time I was able to spend 2-3 days a month with here. The folks at the membership organization, Outreach In Burnside, were very happy to see me show up, and I and the staff became good friends. I was able to assist C in various ways, both in person and by phone.
C had been a writer of poetry and short stories, and her ’story generator’ was in full flower some of the time. On the other hand, her physical health and her personality were intact, and we had quite wonderful long walks and meals in restaurants.
Ultimately Oregon took cognizance of her getting lost a lot, and insisted that she live in an adult fostercare home. When that home failed, we found a quite nice secured nursing facility where she was comfortable for the last year and a half.
I now live in California, do Hospice patient care and caregiver relief, among other things. I find this work immensely rewarding, partly as a resuly of that Portland exzperience. I often benefit from an expression of the folks at Outreach: “we’ll just roll with it!”
Best wishes to all, j
Hello Lew,
Thank you for this insightful post. I had never considered dementia as an aspect of the Abhidharma’s “fear of unusual states of consciousness.” I had always heard the teaching in relation to fears that may arise in meditation practice.
In the Dharma, Ron
Hi, Lew,
Thanks for posting a link to your blog on SPOT. Very thoughtful and provoking.
Our grandmother had dementia in her last years– I often remarked that “we lost her before we lost her” — the cognitive and personnality parts that we knew.
It’s all loss; and eventually all is lost — just different parts or different rates.
Thanks again. Gassho, Norm G.