"I’m sorry this is just not the behavior of an experienced politician. It’s also not the behavior of a person whose brain is working normally." When dementia is involved, sexuality can be very complicated.
Financial elder abuse is much more common than most of us wish to think. Some believe that it will be the greatest crime of the 21st Century. This abuse doesn't always come from 'scammers' outside the house or on the phone. Often, sadly, it comes from relatives of the elder. When you add dementia to the mix, it's a terrible problem.
There’s a lot of discussion on the Internet right now about an essay published in the current issue of The Atlantic Monthly. In the essay, 57-year-old writer Ezekiel J. Emmanuel makes a radical statement: He says that he wants to die at 75. He says that everyone, including him, will be better off if, as the headline to the article says, “nature takes its course swiftly and promptly.”
Emmanuel, director of the Clinical Bioethics Department at the U.S. National Institutes of Health and head of the Department of Medical Ethics & Health Policy at the University of Pennsylvania, makes a radical statement to get people talking, and boy, did he succeed at that: The piece has only been up for one week and there are already more than 3,000 comments, more than ten times what most websites consider a robust response.
It’s important to understand that Emmanuel isn’t suggesting that someone put a bullet in his brain on his 75th birthday. He’s saying that “living too long is also a loss.” He’s pointing out that too many of our elders spend years and years in a diminished state, in which they cannot work or fully enjoy life. He’s saying that he doesn’t want to be remembered as a shadow of his younger self. And he’s saying that, after 75, he will have lived a full life and he’s not going to go to any extreme measures to prolong his life after that time: no flu shots, no cancer screening, nada.
Of course, the writer’s family is not thrilled with his position. They think that when he turns 75—if he’s still healthy—he’ll move the deadline to 80, and then perhaps to 85.
He points out that “health care hasn’t so much slowed the aging process as it has slowed the dying process.”
As I do geriatric house calls around the Bay Area, I daily encounter patients who might be said to be dying in slow motion.
But here’s where I disagree with The Atlantic Monthly contributor: Being old and frail doesn’t mean that all enjoyment of life disappears. Even my patients with dementia still find joy in a sunny garden, or a chocolate chip cookie, or a hug from a family member. Even a patient who can’t speak may enjoy an afternoon by the seaside. Even a bed-bound patient may eat with gusto, or may enjoy simple card games, or even balloon volleyball.
It’s true that we Americans have for the last couple decades seized on the idea of “compressed morbidity.” Put simply, this is the idea that, thanks to modern medicine, we will all live longer, then suffer from a short, serious illness that’s not too miserable and then we die: longer life, then a short period of suffering and done.
I agree with The Atlantic Monthly author that this notion is what pushes doctors, patients and patients’ families to push for more, and ever more, treatments. I agree that, in many cases, these treatments prolong misery rather than adding years of vitality.
But just saying, “I’m giving up at 75” does not solve this problem.
It does start the debate, and we desperately need more discussion of these issues: What we need is an honest discussion of the limitations of medicine. We all need to think seriously about how we want our loved ones and ourselves to be cared for in later years. We need to write these wishes down. (See my recent post on advanced health care directives.) And for those who do experience a lengthy period of frailty and/or dementia, we need to create a system that recognizes the limitations of some of our elderly but that still tries to make their lives as full and as enjoyable as possible. We need to invest more in our care of the elderly, and in our training and payment of caregivers for the elderly. We need a holistic system that recognizes that even those with dementia can enjoy life. We need a payment system—Medicare, Medicaid, and Medi-gap insurance—that emphasize coordinated care, home health services, pain management and the minimum effective doses of drugs.
Let’s not think we can live forever. But, let’s not pull the plug at 75. Let’s make aging, and old age, as fulfilling as it can be. That’s what I, and my staff at ElderConsult, work to do every day.
UPDATE 5/7/2018: The American Bar Association no longer supports this smartphone app. The other advice in this blog post is still relevant, and includes alternatives to this app.
If you’re one of my patients, or the family of one of my patients, I’ve already nagged you about this.
Make out an advance healthcare directive: figure out who you would want to make health and legal decisions on your behalf if you become unable to do so for yourself. Think about what you want to have done if you are critically ill: Would you want everything done to prolong your life? Or are there certain procedures you’d like to avoid, such as a tube to help you breathe with a respirator?
As a culture, we are not very good at talking about endings. So only a small percentage of people actually prepare these forms, but they’re essential if you want to avoid treatments that are more aggressive than you would want, or if you want to keep some unscrupulous relative from taking over your affairs and your medical decision-making power. Please, please, please, make your wishes known to your loved ones and care providers before it’s too late.
But here’s the other thing you need to know: If you go to all the trouble to prepare advance directives, they won’t be followed if loved ones don’t know where they are, or if they’re locked in a safe deposit box or some other secret spot. If the EMTs show up at your doorstep, and you’re unconscious or unable to communicate, they can’t follow a “Do Not Resuscitate” (DNR) order if they don’t actually see a signed, witnessed copy of that document.
So what to do? Luckily, we live in the digital age. The American Bar Association has developed a free, smartphone app called “My Health Care Wishes.” The app will store all your advance directives on your phone. And most of us have a phone around pretty much all that time, so mischief managed. If your elder doesn’t have a smartphone, the documents can be stored on a family member or caregiver’s phone. The app works on both Apple and Android phones.
You can also store healthcare directives digitally in other ways: For $45 a year, Docubank will make your directives available with a phone call. MyDirectives makes available a Universal Advance Digital Directive (uADD)™ for free, from a web-based database. It makes money by charging healthcare providers to access the database.
At the very least, you should post on the refrigerator emergency contact information, current medications and illnesses to help the EMT's if they are called in an emergency. Emergency personnel are trained to look at the refrigerator for such information in homes.
Be sure to have a conversation with your family, friends and especially your 'agent' -the person who will be making decisions for you. Be sure they know not only what your wishes are, but where you keep your important papers, as well as have access to your computer and phone passwords.
So the directive templates are out there. There are ways to make them easily available when a problem comes up. You don’t have any more excuses to avoid completing a directive.
Just do it. Please. You and your family will not be sorry.
Elizabeth Landsverk, MD, Specialist in Geriatrics
Please join us in San Mateo on Thursday, September 11th for an important talk about early dementia and financial challenges. How would dementia affect your family’s wealth? What happens if an elder starts giving money away to anyone who asks? What if they start gambling and can’t seem to stop? What are the risk factors in not planning financial safeguards? How does elder financial abuse happen- and how prevalent is it? These and many other questions will be discussed with Dr. Landsverk and Certified Financial Planner Ben Pettigrew in an interactive discussion.• 12:00-2:00 • Lunch provided by Les Koonce and Ben Pettigrew of LPL Financial -Contact Adrienne Galvez at (650) 321-6068 or Adrienne.firstname.lastname@example.org
Location: Franklin Templeton Investment Headquarters at One Franklin Parkway, San Mateo, Building 920, First Floor, H.L. Jamison Auditorium