Minneapolis MN
I’m curious about what will happen to my state of
consciousness as I enter more deeply into this disease. At present that consciousness feels no
different from any other time in my life.
Toward the end, however, I’ll be lying in a bed apparently unconscious. But will I be unconscious? If I am
conscious then, what is that experience? If I’m not conscious then, what are the
gradual changes in consciousness that will happen between now and then?
On the Saturday before the Oscars, Marja and I went
downtown for a showing of the five films that were nominated as the best “short
films.” A French film, Henry, made a deep impression on
me. From the beginning, the film felt
confused, almost surreal. It flipped
back and forth in time and was full of strangers who kept acting as if they
knew Henry, the main character. But
they kidnapped him, forcibly injected him with drugs, and kept him helpless in
restraints. He met earlier versions of
himself and of his wife.
It was all very bizarre until, over half-way through
the film, I finally tumbled to the fact that Henry was demented, and the film
was showing his world from his point of view, his own experience of the
world. Mostly he was in his own demented
world, but his sense of himself didn’t seem to change as he passed back and
forth. As far as Henry could tell, he
was the same person whichever state he was in.
Of course, this was only a film, and Henry’s sense of
himself was only fiction. But how does
the inner state actually change as the disease progresses?
An older friend once told me of and event shortly
before her husband died with Alzheimer’s.
He had been completely out of it, intellectually unresponsive for a long
time. My friend visited her husband at
the nursing home and during the middle of her visit, his dull eyes seemed unexpectedly
to find their focus, and he began a normal conversation that lasted some
minutes. He seemed lucid and in those
few moments they re-kindled their emotional bond. He was cognitively present to her.
What happened?
Presumably we’ll someday be able to describe physically what happens in
the brain to bring about such wild swings.
But what was his experience? Was he conscious of himself during their
conversation? Was he in some way
conscious of himself when he was out of it?
What changed as he went into his wife’s world and then out of it again?
In Henry’s fiction world there was no real change in
his sense of consciousness as he moved between the two worlds. Is that what happens?
Several people have said that emotional presence is
one of the last lights to go out as the disease progresses. The experience of the staff at Joseph’s House
is that there moments when Joy, the woman afflicted with Alzheimer’s (“Grace and
Joy”) is still sometimes emotionally present. What is her experience in those moments?
How little we know about this disease. 50% of people
eighty-five years and older have Alzheimer’s yet we know almost nothing about
what the experience is like.
I was surprised that the movie didn’t frighten
me. Henry’s experiences seemed mostly “interesting.” But it did help me to realize how little I
know of what’s coming, how naïve this blog may later seem. And Henry’s experiences and those of his care
givers—along with the questions that the film raised in me—strengthened my
determination to bring a bit more light to this disease.
I feel and fear for you.
ReplyDeleteI don't think fear is a good word here, how can you fear if you have no fear. I read once a disease such as Alzheimer's is a like a gentle hand holding you as you leave this world and pass into the next. We all die, some people die in pain and some in their sleep but the fact remains we all die,the difference is when diagnosed with a terminal disease you get a approximate date, but we all have a date thats much is for sure.
ReplyDeleteMy guess is that most of the fear people feel comes from watching another person with dementia and imagining what it would be like if they were in that position. So they fear the disease because they think they know what the person with Alzheimer’s experiences, but of course they don't. With some exceptions, but most of our fears are of future events; mostly we're afraid not so much of what is happening here and now but of what we imagine will happen down the road. I don't know what's going to happen down the road; I especially don't have any idea what it will be like to experience what's going to happen. It may change, but I just don't feel fear of this disease.
DeleteI am writing a post on this subject that may appear in the next few days, probably entitled something like "Fear?"
Dr. Hilfiker,
ReplyDeleteYou are doing a very brave and useful thing in "bringing light to this disease." However, and forgive me for saying this, in presenting an edited version, you detract from the value of what your are attempting to do. It's as if you are describing the consequences of the disease with a coherence of thought and elegance of prose of someone who doesn't have it, and that will mislead your readers into thinking the disease is more benign than it really is.
I can understand the reluctance of someone as intelligent and accomplished as you to reveal the progressive loss of faculties which made you who you are. But that is the task and burden you have taken on, and to do it, you will have to set aside being a doctor and become a writer. It's an enormous challenge, being simultaneously the observer and object of observation, particularly so as your powers of observation and narration wane.
One of the first principles of good writing is "Show, don't tell." If you are to reveal the true nature of the degenerative process at work you will have to present your thoughts unfiltered, letting the content and style of your prose reveal as much about the disease as the events your describe. If you repeat yourself, or lack coherence, or forget things or can't find the right words, so be it. That's the nature of the disease you are determined to reveal. Let it come through in your writing.
It will necessarily be a humbling experience, but ultimately, a rewarding one, inasmuch as you will be fully dedicating your resources, as you have throughout your professional life, to the service of others.
With every best wish,
David L. Smith
www.davidlsmith.com
I am very grateful for your comment. By happenstance I’m just now completing a post dealing with this exact issue and I'm going to incorporate a few of your comments and my responses into the post. Given your primary point, the irony is not lost on me. Nevertheless, this is a very important issue for me, and I'm grateful for the feedback.
DeleteI'm not sure if you're referring to the editing that my friend Carol Marsh does or to the editing that I do as I write and before publishing. If the former, I suspect you're right. So far her editing has been pretty minimal, but as I deteriorate there will be a tendency to rely on her more and more, which is, as you point out, contrary to the purpose of the blog. So that point is well made, and I'll give it serious thought and post a comment here.
As far as the editing that I do myself before publishing, the issue is much more complicated. I've been a writer for thirty years, and I like to think that I still have that same “coherence of thought and elegance of prose of someone who doesn't have [Alzheimer’s].” I haven't notice much decline at all. Also, unlike some writers, I have always edited as I go, resulting in first drafts that have often been pretty close to what gets published. As I demonstrate with an unedited version of one paragraph in the post, I can't just present an unedited version of my journal; it would be unreadable. So, in some ways not to edit would be dumbing my writing down. Even not checking for repetition would be false to my current state: Never having had a good memory, I've always used the computer's search function to make sure I'm not repeating myself. My impairment is now limited: Some functions like memory and mathematical computation have been quite noticeably affected; others, like speaking to small groups or writing, seem pretty intact. This is obviously going to change as I deteriorate.
For the present, outside of my declining memory (which is also quite difficult to show rather than tell), almost no one notices my decline. So, my current condition is benign; As a writer, I have the best of both worlds, with one foot in the world I've always known and the other foot in a strange land I still can't comprehend but provides lots of material for my writing. In fact, part of the purpose of this blog is to show what it's really like. The picture most people have of Alzheimer’s is people walking around talking nonsense of lying mute in a nursing home. That's certainly part of my (future) story, but it's also important to let people know that at the beginning of this disease, there may be years of pretty normal functioning.
Thanks again very much for writing and helping me to think through these things further. Do check out the post in a few days.
Dr. Hilfiker,
ReplyDeleteI read this post and your comments about consciousness with great interest. I greatly respect and appreciate your courage and strength of character. There are many who are living with this and many others who live with those who do.
Regarding the consciousness issue: My mother has had dementia for several years, and six years ago she stopped connecting with us; that is, she was no longer able to form sentences and seemed to be in a world of her own.
Then - two years ago - she came back, in the sense of recognition. She knows us; she says our names and recognizes us, although she is not physically able to do anything else at all and can only form an occasional word. She is in a nursing home and is physically very weak, yet her soul has returned. This is quite difficult to explain. There really are no words that describe it fully.
I had read about this sort of thing, but the experience of it is quite extraordinary. She appears to be at peace and at times joyful, and often manages to say the names of her deceased parents while pointing at the ceiling. Once she informed me that my grandmother had been there and was 'very good'. On another day she was talking to her father when I arrived. These experiences have happened about two dozen times.
I did not expect this. I certainly wasn't looking for it. Yet it has happened.
I cannot share in her illness. But I can observe from the outside that her soul, her consciousness, her self is very much alive and seems to be bursting the bonds of her body and brain.
So much anguish for so many years and such a long road, yet at the same time there is this life of the soul. Again - quite extraordinary.
This is really a remarkable and beautiful story! For all the suffering that your family and friends might go through, your mother doesn't seem to express any suffering, indeed, seems quite at peace. She can't tell you anything with words but seems to communicate joy and gratitude. I wonder what kind of consciousness she has of herself. It doesn't seem much to be afraid of, though.
DeleteYou speak of "so much anguish for so many years." Do you have any sense whether she experienced that anguish, that suffering, or was it primarily those who loved her that suffered?
Dr. Hilfiker,
DeleteThank you very much for reading my post, and for your thoughtful comments.
In answer to your question, we (my sister and my brother and myself and our families) have talked about how aware she has been of suffering.
From our perspective the most difficult time for her appeared to be the very beginning, when she was becoming accustomed to the news and adjusting to a life where all plans and expectations were changed. That is the part you are writing about now.
Since then it appeared to us that the emotional difficulties and confusion were very intense, but would pass through her and leave. Then the peace would return. It was like a storm moving through. That's the best thing I can compare it to.
For us, I must admit, it was often far more painful and confusing and exhausting in the years since then.
There is one example I can give that actually made us laugh at the time. Mom had a day when she had a lot of fear and confusion and we were all with her. At the end of the day we were exhausted and there were plenty of tears. Yet when I went in to her bedroom after the confusion she was gazing peacefully at the pictures of her parents and then smiled at me.
We were extremely upset for her and with her, but the anguish seemed to leave no mark on her soul. WE were the ones who were worn out! That is why we laughed.
I know this may sound a bit sentimental, but it was very real. The anguish was real and the journey has indeed been a long one. But my belief as a result of this experience and many others is that the failing brain and the soul are not interchangeable. They are separate. That becomes evident through this illness.
Yes, you are correct - she does express joy and gratitude - and even humor, which is somehow the most surprising of all. A few weeks ago she was visited by a well-meaning woman who is rather condescending. I had no idea if Mom was aware of anything. She just watched her. When the woman left Mom looked at me and rolled her eyes and grimaced, just like she used to you. How is that possible? Yet it is.
We had the sense many, many times that she was away - and then back. I have often wondered what she sees when she leaves, besides her parents and my father. Whatever she sees, it is very good.
I am a highly pragmatic and 'common-sense' man. I am a strong believer in God and at the same time I look for proof in just about every aspect of life. I do not rely a great deal on emotion as a basis for decisions.
But I have seen through my mother's illness that these bodies are containers for our souls. I would never have thought it was possible to now this through being a caregiver for my own mother. (That is my limitation! I have learned a few things too) Yet we have lived it - and we still are.
This is a bit long. It is good to write about my Mom. Thank you for reading. Cheers.
Tim:
DeleteThis is so very helpful. I'm sure you are a "pragmatic and 'common sense' man" who doesn't make decisions emotionally, but it's also obvious that you have connected at a very deep emotional and spiritual level with your mother. I deeply trust your reading of her soul. I am now writing a couple of posts on fear, and I just wish every person who is afraid of Alzheimer's could read what you've written. The disease is indeed awful, but do we need to FEAR the experience your mother is having. I don't think so.
David
I'm so glad I came across your blog. In researching for a novel I wrote (entitled, All the Dancing Birds) written from the viewpoint of a fictional character who has Alzheimer's, I discovered that reading and writing are tasks that might continue for quite some time because these are skills taught and repeatedly practiced during our young childhoods. In fact, one way to help a family member remember who is visiting is to make a simple card that reads, for example: "Hi mom, I am your daughter, Claudine." This helps remove some of the difficulty in name recall or face recognition.
ReplyDeleteI personally have no problem with written material edited for clarity and readability.
I wish you well on this amazing journey and look forward to reading your posts in whatever form you wish to present them.
Auburn:
DeleteI'm very curious about your research. Since you wrote from the point of view of a person with Alzheimer's, you must have found material written by people who had Alzheimer's themselves. What did you learn about their states of consciousness? In your book were you able to incorporate much of the inner experience as actually expressed by people with the disease, or were you mostly interpreting your own observations or using the observations of others?
From your second paragraph I infer that you Alzheimer's yourself. If so, I'd be very interested in conversing with you, either here or through email (david(at)davidhilfiker(dot)com.
Thank you for writing.
Even tho I read and tried to understand about my mother's Alzheimers, it was only possible in retrospect. Mom lost the ability to read so she was unable to punch the right button on the auto-dailer to call us on the phone. She also moved into the past, but it was not happy for her, she would ask "Where's Howard?" about my dad who had been dead for 30 years. "When is he coming back?" was painful -- we just assured her she would see him again. Group care was dismal for her and for us. She seemed "gone" then, we would put her in the car for a drive and she would say, "We are headed south" and would be spot on. Sugar, over-stimulation of too many people made her difficult and triggered being "gone" and acting out. Tears were the worst, because we didnt know or couldnt help. I cant see it as a "gentle hand" I see it as a cruel disease.
ReplyDeletesdharms:
DeleteThank you,very much for writing. Lately, I've been afraid that this blog would be only a place for happy stories. Thee are some very happy stories spread out in comments over this blog, but I'm very grateful for your story, too. There is much pain in this disease, and it's important to be reminded of that.
David
First of all, let me say, "You are simply amazing!!" I had my first "experience" with Alzheimer's when I was about 4 years old. My father's mother lived right beside my family, & she fell victim to this disease. I watched many events unfold in the beginning stage. This was indeed a very traumatic thing for such a young child to endure. Long story short, my grandmother lived 12 years with Alzheimer's before she fell victim to it's power. Since then, I have lost my maternal grandparents, (both fell prey at the same time), a maternal uncle, & a paternal aunt to this disease. In 2008, the fear I have carried since I was the little girl who didn't understand what was happening to her grandmother, suddenly came to be as my mother started showing signs of Alzheimer's. I won't drag this out, as I know you are fully aware of what I would say. But, I want you to know that you are doing an excellent job of informing people of Alzheimer's & definitely shedding a lot of light in an almost "blacked-out" world. No one who has been through this with someone very close to them, can never really grasp the effects this disease has, not only on the victim, but the ones who love them dearly. It isn't easy, but it could be a lot worse. Through anything we go through, there is always something to be learned - we just have to be observant & it will be evident to us. Keep up the good work & God bless you for being such a phenomenal person in every aspect of your life. I commend you immensely!!!!!!
ReplyDeleteThis can be such a difficult disease for the care givers and those who are, in a sense, bystanders. You have been touched in so many ways and so many times that I can only imagine how painful it must be!
DeleteYes, sir. It is extremely painful. But, thank God for a father who is the "rock" in our family. I broke down & cried to him for the first time about a month & a half ago. What hurts me the most is the fact there is never a chance for progression, only regression. You are a blessing in so many ways.
Deletegreat post, I am interesting in it!
ReplyDelete