Dementia is on track to becoming a growth area in ethics. How should we treat someone who is no longer in touch with reality, cannot recognise even his loved ones, and is no longer a productive citizen?
While we await a definitive tome on the subject, the resident ethicist of the New York Times Magazine, Kwame Anthony Appiah, has stepped into the gap. He is one of America’s leading public intellectuals, not a mere “Dear Abby” stand-in — a British-Ghanaian post-modern philosopher, cultural theorist, LGBT icon, and novelist, who has taught at Princeton and New York University.
Last month a reader sought guidance about her mother’s love life. Her stepdad has early-onset Alzheimer’s. Her mother was his full-time carer until a few months ago, when he was moved into a nursing home.
Suddenly single and lonely, her mother started dating a man in his 70s who is, according to “name withheld”, a sleazy character with no money and a string of divorces. “My mother seems hellbent on dating this man and is not receptive to hearing our concerns.” What should she do?
Like a good philosopher, Professor Appiah first of all distinguishes. There are two ethical issues: (a) whether should she date this man and (b) whether should she date anyone at all. As for the former, it’s a matter of taste and prudence. As for the latter, his advice is startling:
We talk of marital commitments as running “until death do us part.” We also know that many marriages end in divorce. Having a living, divorced spouse who no longer recognizes you falls into neither category. Your stepfather did not break his vows or re-evaluate them. Nonetheless, he has effectively left the relationship — been removed from the relationship — in a permanent and irretrievable way. Your stepfather’s advanced dementia has, in short, robbed your mother of her husband …
But we should not want our spouses to abjure the companionship of others once we are no longer available to them. Indeed, nobody in your family has the right to expect this of her. The painful truth is that her status is ethically equivalent to that of a widow.
Hmmm. The idea that a person with Alzheimer’s is, for all intents and purposes, no longer a person brings with it many consequences, not only social, but also legal and moral. It’s surprising that a distinguished philosopher is so nonchalant about personhood.
Jean-Pierre and Bernadette Adams: 52 years of marriage
A counter-example comes from France, where a former player on the French national soccer team passed away on September 6 at the age of 73. Jean-Pierre Adams was born in Senegal, migrated to France, played for Nimes, Nice and Paris St-Germain and represented his new country 22 times.
He married a French national, Bernadette, and had two sons.
In 1982 a routine operation on his knee went wrong. During a strike of doctors and nurses, the trainee doctor caring for him was inexperienced trainee and his anaesthetist was overworked; they botched the operation. Jean-Pierre’s brain was starved of oxygen.
He never woke up and spent the next 39 years in a vegetative state.
For all those 39 years his wife cared for him loyally– changing his clothes, preparing his food, exercising him and conversing with him. She believed that he was dimly aware of the people around him.
For a while he was in a hospital, but the staff allowed a bedsore to become badly infected. Enraged, Bernadette moved her husband home so that she could care for him herself. Despite scant financial resources she managed to construct a purpose-built home. She called it Mas du bel athléte dormant — the House of the Beautiful Sleeping Athlete.
Euthanasia? “Unthinkable!” Bernadette told a journalist in 2012, “And it’s not for me to decide for him. I’m not going to deprive him of eating anyway … At first, when he was in a coma, it was my fear every time I went to the hospital, I was afraid that I would be asked if I wanted to unplug it.”
After Jean-Pierre’s death, he was honoured with a minute’s applause before the World Cup qualifier between France and Finland. Bernadette deserves at least that — and more.
We have no right to sit in judgement on the wife with the Alzheimer’s-stricken husband. But on the advice given her by the New York Times ethicist – yes, we do. Bernadette’s heroic dedication is inspiring, but she is not the only wife who has cared for a sick husband for decades. Professor Appiah knows that it is possible. Why does he belittle “for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part”?
I’ll venture a guess that it has something to do with his strong support for same-sex marriage. This kind of arrangement might be a contract, but it’s not a covenant. Lifelong, committed, heroic fidelity is just not part of the New Deal for Marriage.