I've been reading book about death for a while, wanting to grasp the psychology of it, wanting to know more about my own future. One thing that struck me is that those who care for the dying say they need two things above all: permission to die and company while they do so. In our society today we are terrible at meeting that first need.
What do we do when we see a dying creature?
In some times and places compassion for a dying animal meant giving it a quicker death. Now it means fixing it, at all costs, and caring for it, if necessary, for the rest of its life. Now it means prolonging its death for as long as possible. And if it is dying and there is nothing we can do, lying about it.
What we are doing, that we claim to do in the name of compassion, is not compassion. It is avoidance of pain and fear of death.
We, the living, don't want to confront death. We would rather the burden of carrying a dying creature for fifty years than a week at his bedside holding his hand while he dies. Yet that is what the dying need, I have read. Not to be our burden. No one wants to be a burden.
We know this, deep down, that no one will accept burden status, so we lie to them. We tell stories to make them feel entitled to being burdens; we play a dishonest psychological game with ourselves pretending that they are not burdens, that it is meaningful to carry them, that good people are genuinely happy to do so, that it is their right to be carried, that they deserve it, etc.
But this dishonesty is not kind because dying people need two things: our permission to die and company while they do so.
To turn them into a burden and then lie to them, telling them they are not a burden, is to deprive them of our permission to die.
More than denying them permission, it gives them the message that they are bad to die. It also deprives them of a possible meaningful death.
"Am I a burden to you?" What if they need to hear that they are? What if that is what will give them the strength to face what is perhaps the scariest thing a person will ever have to face? What if we said, "You are a burden to me, a heavy one. I am struggling under the weight of carrying you. But I will carry you, until you are ready to go."
The journey of death is the journey of acceptance. How can the dying find meaning in their death if we refuse to? What if their death could have meaning? What if instead of their death being a failure, it can be a gift they give those who survive them, a lightening of the burdens of the living?
The faceless society cannot bear the dying, individual people must. Because it is the desire to not burden those individuals that gives the dying the strength to go, that enables their death to be a gift. I would so much rather my death be a gift to those I love than a traumatizing event that causes them pain.
Not saying we should run around telling people to die. Not saying death will ever not be painful. But I would like to see a cultural shift in our attitudes about death and especially about choosing to die instead of live and the many times it is a highly rational choice. We treat death as such a tragedy, but it is the fate of each and every one of us. It is not a failure on the part of the dying person. Memes talk about the "courage" of those "fighting cancer" in their "battle against death." I think that often the far more courageous choice is actually the choice to go gracefully. Sometimes the battle is desperation and fear. Especially when I see pictures of courageous toddlers fighting to survive and destroying the lives of all those around them in the process. The toddler isn't courageous of course. And neither are the parents. It is not courageous to sign up for twenty years of medical bill slavery so that a sick child can die in his teens instead of now. Facing death, your own and the death of those you love, is often the far more courageous choice.
Someone wrote to ask me about my position on the elderly and here is what I have to say: In Tibetan Buddhism it is said that a person spends the first half of his life learning to live and the second half learning to die. The elderly are those in the final stages of learning to die. They should never be infantilized nor turned into burdens against their own wishes. Their death is natural and right and should not be prevented or prolonged, rather it should be treated as sacred, beautiful, and theirs.
The dying need two things from the living: permission to die and company while they do so. Most people die today, sadly, without the former. Like labor, the "no" instead of the "yes" can make the experience last much longer than it would have otherwise. Death can be dragged on for years if someone is given the message that their death will cause pain to others.
And the latter not everyone actually needs, just most people. I will want someone to hold my hand. But many people are so connected to their spirituality that they don't need anyone there. If that is the message an elderly person gives by choosing to stay in his own home alone, so be it. He doesn't want to be a burden. That is actually far more natural and right than convincing him he would not be a burden. He should be praised as heroic, honest, emotionally aware, brave, and generous. It is not sad to know that, no matter how much your family loves you, caring for you would be a burden for them – a burden they would bear, but a burden you don't wish them to bear. It is beautiful to refuse to be their burden, beautiful to give them that gift.
Perhaps this isn't a new way to think about death at all. I have read of hunter gatherer tribes in which the old were expected to get lost in the forest. That was how they died. No one offered to carry them. No one insisted the tribe go slower. Similarly, old vikings, when they saw that they were becoming burdens on the living, left to fight in a battle. They did it consciously, knowing they would not survive the fight. They said their goodbyes and then picked a cause to die for. Of course, their main cause was that gift they wanted to give their families. Because life was understood to be endless toil and death was understood to be rest, it was easy to talk about the burden of caring for the old. Contrast that with today, when we can't seem to have honest conversations about death at all.
It is too bad that it is so hard for both those dying and those remaining to talk about their real feelings. I lost a niece a couple weeks ago and I don't think she was afraid to die but she really did not want to die alone. (She didn't.)
ReplyDeleteYears ago I knew one of the first people to receive a kidney transplant. He was not told how sick he was until he had to sign papers saying he was a hopeless case and that the transplant might well not work. He was furious that they had not leveled with him before so he survived and became a counselor to those dealing with death. He and his wife then lived in a truck tastefully labeled re the work they did. Much of their counseling was with people found standing by the truck when they came out from grocery shopping.
I am curious about your thoughts on a related issue. Well before death many old people become unable to take care of themselves, much like tiny children. So I am wondering if your work on child rearing sheds any light on dealing with these often far from death elderly?
Hi Irrevo,
DeleteBy "far from death" what do you mean? The idea seems contradictory to me. How can a person be both far from death and yet unable to care for themselves?
I think when people hit 60, they should be asked what their thoughts are on the level of burden they would feel comfortable being before they would rather die. If I were unable to continue living on my own and had run out of money, I would rather throw a goodbye party and take morphine surrounded by those I love than impose on those I love and gradually sour those relationships.
In my life I have seen many people ruin themselves to be caretakers for those who should not be alive. I could never be one of those people. I met a man at Freedom Fest last year who told me that he had spent 19 years caring for his invalid mother who had dementia, who didn't know who he was. He changed her diapers and fed her. He put off marriage, having his own children, spent a fortune, and didn't have any social life to speak of. I asked if he would want his kids to do the same for him, and he said, "Oh no. I would never allow it. I would rather die than put anyone through what I went through."
So why would he assume that that is what his mother would have wanted?!!!!! I can't imagine a mother wanting that! I would be pissed if my son did that! How disrespectful to turn someone into a burden who didn't want to be!
Sorry. Tangent. Please be more clear about what you mean. (Also, I don't think there is One Answer For Everyone here. But you know that :)
In general, respectful, honest communication and respect for the other person's wishes clears up a lot of problems with toddlers, and I imagine that would be true of the elderly.
Roslyn
Re your rant...;-) My mother just went into a nursing home after a fall that shattered one shoulder. That had been her strong arm and because her legs are weak she relied on it to get out of bed or a chair or off a toilet. She can no longer do that and so needs to have assistance 24/7. She is not ill and though she is forgetful and sometimes confused she can usually carry on an intelligent conversation. We are working on ways to let her continue her artwork and her writing. She is close to death only in the sense of being 92 years old. But she is more child-like in that we have to make a lot of decisions for her. She is not much of a burden to her family because the nursing home takes care of her daily needs and the government pays for that. So my real question is how to manage such a situation in a way that respects the autonomy of the disabled adult in the same way that YOU respect the autonomy of children.
ReplyDeleteI think an underlying issue is that there is usually no clear dividing line re "close to death". Even if a person specifies their wishes in advance it may fall on someone else to interpret whether the time has come. An added complication is that by then they may only be able to commit suicide with help from others, which is illegal in many places.
After making my comment I tried yet again to track down the guy I knew who had a kidney transplant. This time I found him. Though he was once "close to death" what I found was a news story about his celebrating the 50th anniversary of his transplant. He lived a long and productive life but also needed help along the way. In 1990 I was given a one in ten chance of surviving cancer.
Re Maria's post, I get LOTS of similar posts on my own blog. My policy is to ask myself if the comment could just as well have been attached to any other post on my blog -- or some random blog. If so, I kill it. A less draconian measure would be to not allow links that are not germane to the topic at hand or part of the commenter's validation. If Maria is for real I would advise her to include something in her comments that shows she's read the post;-)
I'm sorry, I am not understanding. In what way do you think your mother's autonomy is not being respected?
DeleteFor me, the dying includes all those who would not be alive without enslaving others. Because your mother is not supporting herself, she is part of that group. But I don't think that has anything to do with your question. I think your question has more to do with the situation. Is your question: "Assume an old, childlike person is being cared for. How can I allow them to be as autonomous as possible?"
I don't know what to say in terms of an answer except, "Well, offer them as many choices as they are happy to make, just as you would a child. And then honor what they choose." Honoring what they choose is often hard.
Thank you, I will delete "Maria" post. :)
I think you are understanding me in that I am concerned about what to do in the world as it exists rather than in an ideal situation. It sounds like you have not given a lot of thought to applying your principles to this situation, which is fine -- I can't expect you to solve ALL the world's problems!-) Mainly I wanted to assert that the principles you espouse can be applied to this other situation.
ReplyDeleteSome concretes might help you and your readers. Near the end of his life my sister visited one of our grandfathers in the hospital. He was furious and told her, "I know I'm dying but they won't tell me." They were "protecting" him yet he ended up having to maintain the lie to protect them. The fellow with the kidney transplant was furious that they did not tell him how sick he was until he had to sign papers for experimental treatment. After my mother's fall some family members were lobbying to get her into a nursing home "for her own good." I wanted HER to make that decision. She did eventually accept that she could no longer live on her own, but still she refers to where she is as "the lockup" because of all the restrictions they place on her (beyond her real physical limitations).