Fungal Jewels an Antidote to Lady Warnock and Dementia

September 30, 2008

Baroness Mary Warnock, a Medical Ethicist from Great Britain Who Postulates That Those Suffering from Dementia Have a Duty to DieAs my mother’s Alzheimer’s disease progresses to the point that she’s now wearing diapers and loving them, we read with interest Lady Mary Warnock’s recent comments that dementia patients may have “a duty to die.” The renowned 84-year-old British moral philosopher and medical ethicist believes that dementia patients should be euthanized, as they are a burden on their families and the National Health Service. Unlike the United Kingdom where Baroness Warnock resides, we do not, unfortunately, have national health care in the United States. And so the burden of care becomes even more onerous upon families.

In America, if you don’t have a clever accountant, a tax lawyer and a crystal ball to time the divestment of your assets at least three years prior to your future illness, the nursing home can get a large slice of the pie. In another common scenario, families sell off farms which have been theirs for generations, or a beloved family home, to pay for the cost of nursing home care or assisted living. When the nursing home depletes that money, they can either kick your loved one to the curb or, more likely, your loved one is eligible for a pittance from Medicare on which to subsist in a home.

 Rare Pink Waxcap, or Ballerina, Mushrooms, Found in An Ancient Churchyard in the North Downs of Southeast England

In my mother’s case, this scenario is yet more bizarre. She has the means to live out her days in the most expensive nursing home in an expensive metropolitan area. It has an Olympic-sized swimming pool. A beauty parlor. Private apartments for those who need an assisted-living facility, which was our original intent when she was placed there in rehab for a broken right hip. However, my mother is not “compliant.” For one thing, she can’t remember that she broke her hip and can’t walk. So, she’s strapped to a bed and sensors emit ear-piercing decibel levels if she tries to get up. Which is, apparently, often. It’s all so Dickensian. This is a woman who has never been told “No” in her entire life. This is a woman who has never even. . . washed her own hair. Amazing! (And weird!)

Center of the UniverseNo one’s told her that she’s been declared legally incompetent, that she is to remain in the nursing home for the duration, that her bank accounts have been frozen, or that the locks have been changed at the house and the burglar alarm password reset. My mother’s only “plan” is to return home and then hire a physical therapist, a handyman and a cook to care for her. (Never mind the fact that she would fire them all within two days, having arrived at the conclusion that she didn’t need their assistance and that “everything is fine.”) Today, one of the staff members told my mother that she’d be going home in less than a month.

It all seems so. . . deceptive. . . Sir Walter Scott springs to mind: “Oh what a tangled web we weave, when first we practice to deceive.” The actual truth is, all of her daughters are afraid to tell her the truth — except, perhaps, this one. We know what we’re in for. We will be shoved and hit. She will get right up in our faces and spit on us and tell us that we’re no longer her daughters. Ouch. Not being masochists, we are reluctant to undertake the mission.

Citrine Waxcap Mushrooms, or H. citrinovirens, Found in An Ancient Churchyard in the North Downs of Southeast England

In a mid-September interview for an October 2008 article which appears in the Church of Scotland’s Life and Work magazine, Warnock said: “If you’re demented, you’re wasting people’s lives — your family’s lives — and you’re wasting the resources of the National Health Service. I’m absolutely, fully in agreement with the argument that if pain is insufferable, then someone should be given help to die, but I feel there’s a wider argument that if somebody absolutely, desperately wants to die because they’re a burden to their family, or the state, then I think they, too, should be allowed to die. Actually, I’ve just written an article called ‘A Duty to Die?’ for a Norwegian periodical. I wrote it really suggesting that there’s nothing wrong with feeling you ought to do so for the sake of others as well as yourself.”

While eminently practical, Lady Warnock’s ideas were, predictably, ill received. While a surprising number of Telegraph readers who had relatives with Alzheimer’s or who were caregivers for Alzheimer’s patients agreed with her from a quality of life standpoint, other readers responded with comments referring to the “lebensunwertes Leben” (“life unworthy of life”) concept popularized by the Nazis. No one seemed happy with any aspect of the discussion. And so we grapple with the issue of “quality of life” regarding our mother. Her life is changing in ways which would have horrified her five years ago. She has a living will and Do Not Resuscitate (DNR) orders. Ultimately, one of her daughters is going to have to make some hard decisions.

Golden Spindles (Clavulinopsis fusiformis), or Fairy ClubsIn case you’re wondering why gorgeous mushrooms keep popping up in this blog post, it’s because they have brought me pleasure from afar, at a time when Pajamadeen needed something nice to happen. The photographs were taken by Ruth D’Alessandro, The Wildlife Gardener at NatureNet, a British website. As D’Alessandro wrote of the “Barbie pinkness” of the pink waxcap mushrooms and the delight they brought amidst a dismally soggy gardening season, Pajamadeen. . .smiled. D’Alessandro wrote: “They glowed out from the moss and clover like little ballet dancers, and that is exactly what they are: Pink, or Ballerina waxcaps (Hygrocybe calyptriformis). They are the only pink toadstool in the UK! They also have their own Species Action Plan in the national Biodiversity Action Plan.” And who could have dreamed up the Golden Spindle mushrooms, also known as Fairy Clubs? Thank you for sharing, Ruth!

Read about Pajamadeen’s birthday “surprise”.

Photo credits: Ruth D’Alessandro and The Daily Mail

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