To the best of my ability, I am writing this from the perspective of love. Let’s be clear, this is not, I repeat NOT about pragmatism. Even though a retired couple’s health care costs will likely be more than the cost of their house. Even though a person’s life savings may be gone through by keeping them in a nursing home. If this is what they want, it would be a betrayal to do otherwise, and a society routinely depriving them of these things would seem eerily like something from Soylent Green or Logan’s Run. BUT nursing homes and hospitals are not what people are saying they want. They want to die in their own homes and be surrounded by their family. Therefore, we should find out what’s going wrong and look for a way to reconcile the wishes of the people with reality.
What Love Is
Before I get into it let’s admit that these questions pull at our heartstrings. Guilty feelings should not be ignored. So let’s make certain what we’re talking about is love.
“There is no love; there are only proofs of love.”Pierre Reverdy
The Reverdy quote above speaks to a certain truth about life: you may feel a strong fire in your heart, and you may call that love, but it is only communicated to others through your action. Betrayal has the power to negate love, to make it untrue, in a way that other emotions cannot be reversed. We can say that a man who has a fire in his heart for a woman, but then cheats on her doesn’t truly love her. So, it is ever-the-more important that we do not betray our parents after a lifelong loving relationship.
On the other hand, love may force us to do things that we don’t want to. We may risk our lives for someone we love, or we may clean up diarrhea for someone we love. Although love is commonly thought of as a warm or fiery feeling, one may experience fear while showing love for one’s comrades-at-arms or disgust while cleaning up after a loved one.
Hollow Mockeries of Love
However, it is possible to have the trappings of love, but not love itself—i.e. to pretend we care for someone when we don’t. This attitude can even envelop an entire society such that it routinely and unquestioningly fakes an attitude of caring.
Consider our society’s concern for health as expressed in the modern food industry. There are thousands of regulations supposedly ensuring the safety of our foods. But look at the end result: almost nothing in the grocery store is healthy. We have the trappings of health, without health. We have the trappings of a society that cares for its citizens’ well-being, but underneath there is apathy. I won’t delve into it too deeply here, but the underlying motivation for these rules are mainly financial, such that one can say some people love money enough that they’re willing to feign a caring for our citizens’ health.
In this same vein, there are those who convey professionalism and the appearance that they can handle your parents much better than you, when really there is no replacement. Legally, there’s a focus on elderly abuse, and this is important—just as it’s important to eat food that doesn’t make you sick—but having the threat of being legally culpable discourages children from wanting to care for their parents in their houses while they are dying. It’s the end result that matters and let’s be realistic: how many seniors, when asked how they would like to be handled when they are too old to care for themselves, would answer, “I want to be locked away in a nursing facility with people I don’t know, and only visited once a month until I die of despair.”
But this is not uncommon. In fact, it’s quite normal. A famous 1970s study by Ralph Nader showed an estimated 40% of nursing home residents are visited less than once a month.
A Stanford study showed that 80% of Americans would prefer to die at home. However, the number who actually die at home is only 20%, with 60% of deaths occurring in acute care hospitals and another 20% in nursing homes. A minority of cases ever make it to hospice care, and this only accounts for the last weeks of life. Do we really need an I.V. and a tube up our nose in order to die? Do we need a doctor or nurses? Why?
Again, consider lockdown. There have been serious restrictions on how often family members can visit nursing homes, and a number of hoops to jump through just to see them for a limited time at limited intervals. This is presented as a protocol of protection; as ensuring a longer life for the customers of the facility. But are these protocols meant to benefit the residents of the facilities, or are they meant to ameliorate the risk for the facilities?
You see, the trappings of care are there: “I don’t want you to die”; but what’s happening is a final act of betrayal.
I don’t mean to criticize all these facilities. In fact, there are various innovations happening which could only come from caring hearts. Seattle has set up an old folks home in the same spot as a preschool. The children take part in caring for and interacting with the elderly adults, and vice versa. In the Netherlands, there is an elderly “village” which resembles a small town in many ways, except that all the residents have advanced dementia. They can shop, play bingo and even go to the pub for a beer. There are also new devices for monitoring elderly adults at home so they don’t need to be institutionalized so soon.
Unfortunately, there are also more cynical innovations like robot pets, artificial intelligence apps, and robots that interact and dispense medications. Let’s hope that this doesn’t come to define how we age and die, being forgotten by the living and kept alive by machines.
Bravery Facing Death
As seen above, most Americans don’t face death head on, but rather get nabbed while running away, dying in hospitals. Is this ideal? The founders of Western philosophy might have frowned on this practice. Socrates died by his own hand and his own choice, having the option to flee Athens readily available. Zeno the stoic and Diogenes the cynic were also reported to have committed suicide, not out of despair but because they had reached old age and were able to face death bravely.
Norm Macdonald recently died of cancer after a seven year battle with the disease, hardly telling anyone about it. During this time he revealed why he kept this secret to an unknowing interviewer:
It’s almost a form of narcissism to say you’re going to talk about it in person, whereas all you’re doing is garnering sympathy for yourself. How is that brave? It seems cowardly to me. It seems much braver to me [to be] like Richard Farnsworth [who] was nominated for an Academy Award for The Straight Story, and if he had said he was filled with cancer, he would have won for sure, but instead he didn’t say it and in fact no one knew it. His family didn’t know it. He kept it from everyone…And then…he did what is called a “stunt man’s death”: you put a shotgun in your mouth, and with your toe you pull the trigger. And so, that to me is courageous. You’re not being a burden to your family. They know nothing about it and then you’re gone.
But this is really too much to expect. There has to be a balance. We can’t ask too much of our parents and not enough of ourselves. A guest pastor at our church told the story of his father-in-law’s fight with cancer. He couldn’t walk, had to wear diapers, and was being fed through his nose. He said to his son-in-law, “I am useless.” The pastor, well-versed in Christian teachings, replied, “No, your daughter, our children and I are all taking turns helping you. You’re teaching us to be servants.” And this is certainly true. We’re taught many things growing up and in adulthood, but one lesson frequently left out is how to be unselfish.
To sum up, while it may be ideal for a man to face death head on, it is ideal for the children and family to provide care unselfishly according to the will of the one dying.
A Person’s Will
By will, I don’t mean a will and testament; this only deals with a person’s belongings after they are dead. I mean what is their will—or hope—of how they will be treated while they are dying. We can extend the control our parents have over their lives by asking them to state their desires openly beforehand, and by making some agreements on what is hoped will transpire. This should take the form of a conversation in which all unfortunate possibilities are discussed and decided upon. As many eventualities as possible should be flushed out so that decisions have already been made when bad things happen.
As things currently stand, this conversation often doesn’t transpire. With no discussion beforehand and the parent in no shape to decide what will happen next, the children usually follow social convention; and the elderly are placed in situations they didn’t originally want to be in.
If there is a medical emergency, the first instinct may be to go to a medical care facility—but then the patient winds up staying. Specialists at the Dartmouth Healthcare Atlas maintain that elderly people are dying in hospitals because hospitals have many empty beds.
“One of the truisms of healthcare is that whatever resources are available, or whatever beds are built, they tend to get filled”
This shows that the decisions are being made by doctors rather than family. Why are the offspring of dying adults eager to put these decisions into the hands of others? Probably a lack of planning. Or perhaps they are afraid of social or legal repercussions if they take the responsibility on themselves and make a wrong decision.
On the other hand, there are situations which are much more gradual. Dementia rarely strikes overnight, so the time to give up hope and prepare for death is not always clear.
My grandmother lived with us while I was growing up, and probably told me fifty times that if she got Alzheimer’s disease, I was to shoot her and put her out of her misery. When the time came when she actually had dementia, her plan seemed so unrealistic that I didn’t know what to do with it. Only upon reflection have I realized my folly. She took over a dozen pills on a daily basis. I never even questioned whether giving these life-extending pills was going against what she would have wanted.
The resistance shown by elderly people entering nursing homes is perhaps only equaled by the resistance shown by young children entering preschool. Both are heartbreaking and the reason for both is usually the same: the most likely caregiver has to work. Although children usually adjust to the new environment, the elderly are much less likely to do so, often falling into despair or desperation as their minds deteriorate.
A 1989 study of Christian Scientists (who receive zero medical care) found that life expectancy was on average two years less for males*, suggesting that two years is the amount of time that health care extends one’s life. But what I would like to know is how much of that two year extension was gained by prolonging the death process. By this I mean: how much of this time is spent in a dementia stupor, too weak to walk, or without control of bodily functions?
*The difference in females was higher—presumably due to birth complications.
However long it is, they can keep it.
Why extend the most tragic and burdening part of your life? When the end draws near, perhaps it’s time to live more like a Christian Scientist—or at least without life extending medicine.
And I don’t think I am the only one who feels this way.
But the amount of money spent on medical care once the twilight period is reached is quite high, such that at the age of 80, you still have nearly a third of your total lifetime healthcare spending ahead of you. Is this necessary? Do people want this?
If you don’t have strong opinions about these things, others will be willing to step in and make the decisions for you. Pharmaceutical companies are more than happy to have dementia patients taking a hundred pills a week (and they spend quite a bit of money convincing doctors to prescribe them). Hospitals will ask you to stay and fill their beds, and nursing homes will try and convince you they care more about your parents than you do. The motivation behind these entities is mainly money, and they don’t mind manufacturing honorless, lonely deaths—so beware.
It’s hard to find statistics on this, but my guess is that there aren’t enough conversations going on between parents and their children about end of life care, and that the talks that are happening are too limited. Make a point of hashing things out, giving real options, and writing things down.
My suggestion is to discontinue all medication for anyone with dementia past a certain point. I think it is immoral to extend someone’s life in this situation. The issue of medication and life extension should be a prominent part of your talk with your parents.
If a person wants to die at home after a certain age, hospitals should be avoided altogether. Plan for this by finding a doctor who will perform house calls.
Once a person enters the phase where he needs constant care, he may not want life-extending drugs or medical care. Discuss this.
Those caring for their parents should be allowed time off in the same manner as women receiving maternity leave. A system allowing an adult to spend some months with a dying parent reflects a society which can see the beauty in life’s cycles; whereas a society which routinely locks their elderly away in institutions and forgets them comes off as selfish and ugly.
Contrary to what I said at the beginning of the article, there is a pragmatic aspect to this. One day you will be in the same situation, so you want to set a good example. However, there is no guarantee that the love and care given by this generation will continue with the next. And so just as every generation must win its own freedom, it must also learn to love.