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Is Dementia the Death of the Self?
Suicide in the context of terminal illness, or a loss of quality of life, physician-assisted suicide … I have conflicting feelings. I am adamantly opposed to physician-assisted suicide. If people want to kill themselves, they can acquire their own means to do so. Yes, this is a disadvantage to some, but by insisting all have the same opportunity we open the doors wide for abuse.
These thoughts are shaped by my religious beliefs, as well as my experiences with kids and adults with developmental disabilities, and my work with medical patients. I certainly don’t expect anyone who doesn’t share my religious beliefs to agree.
However, I often hear arguments such as, “If I lose my ability to think, I’m not myself,” or, “If I’m a burden, I’m not myself,” and others that seem to value humans for their ability to think, or care for themselves. Quality of life is often a key component to these arguments.
These messy thoughts are captured in an article in The New York Times Magazine today called The Last Day of Her Life. It discusses the diagnosis and demise of a prominent psychologist and gender studies professor, Sandra (Sandy) Bem. When she was diagnosed with Alzheimer’s, she “vowed that she would figure out a way to take her own life before the disease took it from her.” The confided these plans to her inner circle, who “tried to tune out [their] own anticipatory grief” to “focus on helping Sandy die the way she wanted to.”
As the disease progressed, her life became more limited, and her personality changed, but she continued to enjoy it. Her inner circle began to hope she would reconsider her plan: “The old Sandy, who valued her rationality and her agency, had been clear that she would be unwilling to keep living when she could no longer articulate coherent thoughts. But this newer Sandy didn’t seem unhappy living her life in this compromised way. Ultimately, who should make the decision to die, the old Sandy or the new one?”
The magazine discusses Ronald Dworkin’s famous or infamous arguments in Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom:
[He] wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach.
I like his distinction between critical interests and experiential interests. But he values critical interests over experiential ones. This reflects a preference I often see in very bright or educated people. Dworkin is even more specific:
Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity. The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted.
I often wonder: If someone was adamantly against ending his own life when he was able to articulate his critical interests, but changed his mind when his interests were limited to experiential ones, would Dworkin still be support his original choice? Or does he like his reasoning because it so often works out as he wishes it to?
The next comments are from Sandy’s ex-husband (emphasis mine):
“I still feel as though I’m me,” she told him on one ride. “Do you agree?” He did, sort of. In fact, he was surprised by how much herself Sandy could still be, even as she became less and less the formidable thinker he had always known. He was surprised too to discover that it didn’t matter to him. “I realized how little of the fact that she was an intellectual played into my feelings for her,” he said. “They were feelings for her, not her intelligence. And they were still all there.”
They were still all there … even when her ability to think critically was gone.
As you can probably imagine, this story ends with Sandy taking her own life. What do you think about this? What experiences have shaped your thoughts?
Published in General
The acceptance in our world of assisted suicide is to me a nightmare, a horror film, insanity, unnatural, maybe the ultimate perversion.
Have you not been paying attention? Some day it may be you that isn’t even given the choice to live.
I remember having a philosophical go-round with The Anchoress (Elizabeth Scalia) some years ago about the story of Jan Chorlton Peterson. At the time, I quoted Dennis Prager saying, “We are our memories.” This, in an attempt to understand (excuse?) Peterson’s husband taking up with a widow while still married to her.
Now, however, my family has had the experience of “losing” our mother to dementia. She has zero short term memory and the long term stuff is fading fast. But, remarkably, her personality persists. She’s genial and ornery and funny — an enigma — and, yet, herself. She’s great at faking knowing us, retaining the politeness characteristic of her generation. She’s now suffering “sunsetter’s syndrome” and has had to be put on antipsychotics. But, family who visit her still have good moments and she often seems to enjoy herself. It’s changed my view about what makes us who we are — and I no longer believe we’re only, or even mostly, our memories.
There are other indignities of aging I find more difficult to witness in many ways. Dementia, while not desirable, isn’t the worst of it.
I do often wonder, though, with medical advancements, whether any of us will be so lucky as to die peacefully in our sleep. Does that ever happen anymore?
People do die peacefully in their sleep. As an estate attorney, I have handled those cases, which involved people in their 90’s. One lady lived very well independently until she thought she had caught a cold and went to bed, never to wake up. These seemed to be in the minority, though. Dying is not for wimps.
Estate planning in this area is often overlooked, because it does not cost or involve a lot of money. But it can be the most important document you ever sign. In circumstances such as being discussed here, I have directed that I not receive artificial food, hydration, resuscitation, or other life sustaining measures, even antibiotics. Pneumonia can be the old person’s friend. I wish to receive relief from pain, even if it may hasten the moment of my death. I may add a section dealing with the special problems of irreversible organic brain illness. I have never been a drug user, but I have no problem with any psychoactive pharmaceuticals that may lessen my and my family’s suffering during a terminal illness. If you can’t party then, that is just sad.
I think Larry’s “little diversion” (#23) is no diversion at all. Since we’re talking about the death of the self it makes sense to consider what the self is, as Larry does.
In reference to Larry’s larger consideration of the self… a number of fascinating discoveries have been made through the study of what happens when we “leave the body” during near death experiences. One finding is that children, when out of the body, are no longer children. They have an adult’s understanding of what is happening in the hospital room as they look down (having typically floated a few feet above the body). I personally know of a woman, a science teacher about 60 now, who almost died when she was six months old, and observed with total comprehension – just as studies predict – the process of her revival as doctors worked on her. How the heck can she remember that? Well, she claims she remembers with absolute clarity, which confirms another finding of NDE studies: NDE memories are different than other memories in that they neither fade nor change over time.
This is all fairly strong evidence that our self is there, safe and whole, no matter what stage of our life we are in.
I should point out that “the self” in the title, (actually the whole title), was put on by an editor when the post was promoted. It’s definitely and improvement over my title, and opens up a whole new vein of thought.
I don’t often get into the philosophy of who we are, or what makes us who we are, because I’m not terribly philosophically inclined. However, I do think Larry’s thoughts have added to the conversation. I’ve never heard anyone describe reincarnation that way.
My grandmother died like this. We had gone up a day earlier than planned on my Daddy’s “whim,” and saw her, stayed up talking, sang, and the next morning she didn’t wake up. I don’t know how much it happens now, but surely less often.
Can anyone else see DocJay’s comments? They are blank on my computer.
DocJay’s comments are blank on mine, as well.
Sometimes I wonder if assisted suicide is really meant to relieve the suffering of the observer(s) rather than the afflicted. Have we reached a point that we dare not allow suffering to interfere with the perfect world we have tried so hard to carefully construct in our own lives.
Yeah, I was gonna say something but I figured it was just me. No DocJ here, either.
The body is hardware. The mind is software. The soul is the user.
If you were only looking at the output on a computer screen, would you be able to discern automatic programs from active input from a user? Would you always be able to tell when the user steps away?
Sufficiently complex and dynamic software can easily be mistaken for user activity. Thus, the mind is mistaken for the soul.
Of course the article’s focus is on dementia, but a larger concern has arisen as I recently had my 65th birthday. As I head doggedly toward 66, I will continue to contend with physical issues which limit my mobility and sense of independence. While I do not struggle with the loss of self referred to in the article, I do face a new perspective on life and consider myself very fortunate to have a loving and beautiful wife.
Elders with dementia revert to childhood in many ways. But it is a loss of mature abilities as much as adulthood is a loss of childhood innocence, imagination, and energy. Life isn’t a marathon down a straight road.
People tend to think of the self as some permanent core. But the essence of something can remain constant and yet the features are still important. My car would be the same car model without a stereo, but taking the stereo away would dramatically change how I relate to my car!
So it is that we feel robbed when the features we have grown attached to and built so much around finally decay. But the features only enhance our experience of the essence.
Our bodies will be renewed. They are part of us as personalities. A person cannot be a full human being without a functioning body and mind, as a man cannot be a driver without a vehicle to drive. The better the vehicle, the more a man may do as a driver.
I don’t pretend to understand exactly the relationship between body, mind, and soul. But I think deterioration of the mind is basically a loss of ability (and thus a loss of role) and not of self.
Because we are beings of action, being deprived of control and activity makes us incomplete. But it does not destroy us as individuals. After death, we are made whole again.
I heard an Orthodox Jewish rabbi speak in Atlanta several years ago. He said that suffering was not an acceptable cause for stopping care. He was also clear that Jewish patients were not compelled to seek or utilize possible options, but that if they had, suffering alone was not enough reason to discontinue care.
It was a…let’s say enthusiastic…discussion between he and members of the medical community.
I usually refer to computer hardware and software as magic : ) so either that or my philosophy resistant brain leaves me confused when I read this…which is not an indictment of the metaphor or your writing at all! just my own cognitive limitations
This post describes my nightmare. I might not care much for my physical appearance or being athletic, but the idea of losing my mental strength is like contemplating a move to the North Korean gulag or being used as ISIS propaganda. Were I in that situation, I’d place very little value on my continued existence.
I would strenuously reject the comparison to childhood. Most kids have highly active imaginations, and can engage in physical play. Also, kids can learn things. The thought of spending my final days as a preschooler does not frighten me. The idea of withering away as just a husk of a human being is terrifying.
It is terrible when it happens.
I am “enjoying” some post-seizure cognitive impairment right now, like calling “blisters” “blizzards” and forgetting that cars are called cars (as opposed to “gray things” or “red things”). I mean, eventually I remember what things are called (else I couldn’t type this), but in the heat of the moment…. sigh. Fortunately, I’m expected to recover completely.
Even so, it’s true that life goes on without mental strength. Whether *I* valued my existence in this state or not, the people that love me do, and for their sake, I should be willing to live out my natural days even if this fog never lifted. I would insist, though, that it be something resembling actual natural days.
For, once my mind goes irretrievably, there’s no point in propping the body up artificially. Those LTAC wards filled with row after row of the trached and pegged, being detained indefinitely from their date with death, sound creepy.
I see also this same thing — and I see that my new virus that can target just people who are beyond the pale and remove their comments is working. Sorry Doc, but you knew this had to happen some day.
We tell ourselves that suffering is the only way we can learn anything important because it is comforting, not because it is true.
It’s true that suffering’s a signal conveying information – often an important signal. In fact, a signal so important that our bodies are programmed to allow it to hijack our attentiveness. Suffering is very distracting for a reason.
But not all important information is suffering. Most of us, if we were honest with ourselves, could think of important lessons we learned via joy, or perhaps even relative emotional indifference.
Moreover, the information signaled by suffering isn’t necessarily true information. It may be misinformation or simply noise. People with healthy bodies often fail to realize this – because good health means that your suffering-signals are working properly. But for those of us whose suffering-signals don’t work properly, the fact that not all suffering conveys useful information ought to be obvious.
Re: 49, Midge, although suffering is not the only/best way one can learn, I’m finding that – if there is no immediate remedy for it (and the only way through it is through it) – I can often join myself in compassion with others in difficulty. This lifts the metaphysical ‘weight’ of the situation, so that it can be perceived more accurately (or more easily-dismissed.) Col. 1:24 – not to say that His salvific self-offering was in any way lacking – unites the suffering of the individual believer to Christ’s -rendering it as a kind of intercession…
In the last year and a half, I have lost a sister to cancer and my father to dementia. I would not have contemplated assisted suicide for either had it been legal. What was important was that they made the journey with us by their side. Both died peacefully in their sleep with us at their side. Where does it end with assisted suicide? Would the government or insurance refuse to pay the $13,000 a month for chemo, offering free death as the alternative? Would greedy family members prefer assisted suicide over paying the $8,000 a month for a skilled nursing care bed so they can inherit more money? Taking it out of God’s hands will bring out the worst in humanity…or rather inhumanity.
Agreed.
Even meaningless pain – pain with no informational content whatsoever – presents us with the opportunity to exercise the image of God in us: our identity as free, creative beings. Because all situations in life present us with this opportunity.
Yes, this is the great mystery of life, isn’t it? Safe and whole sums it up. This is why abortion and euthanasia are wrong at their essence. A person is in there.
But, at no time do I think a person should not have the right to die in peace. My brother kept my father alive for two years longer than he or any of us other siblings wanted. We promised my dad not to do anything extraordinary but the medicals told us that if even one person dissented that he would have sway. I never want to be responsible for someone and do them this much harm again. I hope I have learned my lesson sufficiently to fight for what I know the person wants — to be left alone when it is clear this is what they want. But, it needs to be clear — that can help people with the decisions a lot.
^ Like x 1000.
That one dissenter can overturn an entire family’s promise to a dying man is particularly frustrating.
Larry, In all my time as a hospital chaplain – and as a family member who’s had to support both my parents’ end-of-life decision-making very recently – I am shocked and appalled at your experience! Very unprofessional, it seems to me…I’m sorry to hear of this…
My siblings and I have had a very frustrating time of it since my mom’s dementia began 18 months ago.
We saw the way the wind was blowing and got Power of Attorney, made sure her Healthcare Directive was up to date and everyone had copies. We did everything we could think of while my mom still had a few pistons firing.
And yet … every single time we’ve taken her to the doc, there’s some “other” form that we don’t have that’s needed. And the POA covers some things but not others. Even something as simple as changing her address has been a comedy of errors and is still not resolved.
Fortunately, her estate is large enough to take care of her in comfort in assisted living and all five siblings are on the same page. But I’ve seen times like this tear families apart and I sure understand how that can happen.
Sick to death of having to be an expert in so many different areas just to navigate life.
In my experience, so much of this depends on the culture of the hospital. However, we did used to make very dark humor bets about how late in the game, the relative from the furthest distance, least involved in the dying person’s care, would swoop in to save the day and “keep my siblings from killing (insert relative here)”
It is exhausting, mentally, physically and emotionally.
And, on that happy note, make sure you have not only power of attorney, but also healthcare power of attorney. It can make a difference.
A doctor I know calls it the “nephew_from_Peoria syndrome”.
A friend did this when her FIL was dying and it was horrible to watch. That having been said, it’s best to give newcomers to a situation time to adjust and get up to speed. I’ve seen people get bombarded with bad news, making it almost impossible to think clearly.
Like so many things, it’s all about communication.