Dementia from the Inside Out

Most depictions of dementia describe the impact of behavior and cognitive deficits from the outside – the observations of clinicians, family members, co-workers, and neighbors. It is rare to find a perspective from the inside out – the experience of the person with advanced dementia. A mystery novel is an unlikely place to look for such a portrayal, yet Walter Mosley’s recent novel, The Last Days of Ptolemy Grey creates that perspective convincingly.

A prolific writer, Mosley is best known for his Easy Rawlins mysteries, set in Los Angeles in the 1940s, and for his lively and authentic portrayal of African-American urban life. This book has Mosley’s characteristic earthy dialogue, colorful people, and plot twists. But the main character-cum-detective, Ptolemy Usher Grey, is no Easy Rawlins. He is 91 years old, suffering from dementia, and living in squalor. That is, until an unlikely caregiver, 17-year-old Robyn Small, literally gets him to clean up his act.

Mosley wrote this book after his 88-year-old mother Ella died of dementia. He was a long-distance caregiver for seven years. In an interview in the Wall Street Journal he said that one of the things he attempted to do in his book “is to show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it . . .that struggle for articulation. That’s a very human struggle.”

As Mosley sees it, Ptolemy has a “place behind the door that kept many of his memories alive but mostly unavailable.” Shadows of the past keep intruding on the present, where he lives amid nonstop classical music and news on the radio, a dwindling supply of canned sardines, and fear of intruders.

The complicated plot, which involves past injustices, buried treasure, failed relationships, and violence, turns on the drive-by shooting of Ptolemy’s grandnephew Reggie, the only one of his large but uninvolved family who had helped him do some shopping and banking. At Reggie’s funeral Robyn, who has no family but has been taken in by Ptolemy’s grandniece, takes special care of Ptolemy. The family then sends her to assume Reggie’s role.

Robyn does much more than Reggie ever did, and her kind but firm presence gives Ptolemy the human connection and stability – the love – that is missing in his life. It also gives him a mission: find out who killed Reggie and take care of unfinished business before he dies.

In a Faustian twist, a physician offers Ptolemy a chance to recover his lost memory and lucidity. Dr. Ruben (henceforth called the Devil) is testing a new drug that he thinks will give Ptolemy a few months of clear-headedness but will kill him before he reaches 92. In a macabre version of informed consent, Dr. Ruben openly says the drug is dangerous and illegal in the United States but is being made in “a town in Southeast Asia where there are fewer laws governing research.” Over Robyn’s protests, Ptolemy chooses a few months of “getting his mind back” and signs a form giving his body to the doctor after he dies. No spoilers here: read the book to find out what happens.

The Last Days of Ptolemy Grey is a work that blends realism and fantasy. It is also a tribute to the powerful impact of a caregiver on the final chapter of a person’s life.

Effects of Wisconsin Budget ‘repair’ Bill on Direct Care Workers

Wisconsin’s Budget Repair Bill Threatens Health Care for Vulnerable Residents

This is a guest post by Mike Bachhuber, Executive Director of the Independent Living Council of Wisconsin.

Senate Bill 11, Wisconsin’s “Budget Repair Bill” gives government officials power to change health care available to the state’s low-income residents without public opportunity for input. The legislature has held this power since the beginning of the program.

State statutes provide most of the details for BadgerCare, the state’s federally-supported “medical assistance” program. Until now, these statutes have defined details such as: 

Which people needing care are eligible;  Types of care available to them;
 How care providers are paid and what people needing care must pay.
 When these details are provided by statute, both the Assembly and Senate must pass a bill with the same language to     change the law. The change becomes effective with the Governor’s approval or over a veto with a two-thirds vote in both   houses of the legislature. This process gives the public an opportunity to give their input and tell policy-makers how the changes will affect them.

Senate Bill 11, however, will give that power to the Secretary of Health Services if passed. The bill allows him to change these details by publishing a rule. Unlike with legislation, these changes could become law before the public is even aware. Giving so much power to make these kinds of law changes has not been seen up to now.

The law provides for only two limits on this power. First, the Secretary must give advance notice to the co-chairs of the Legislative Joint Finance Committee. Both co-chairs are currently from the same party so, unless they let others know, most members of the Legislature will not know about the changes until they are published. The Committee chairs can, however, delay or stop the proposed changes by action of the Committee.

The second limit on the “edict” power is that most changes would have to be approved by the U.S. Department of Health and Human Services. If not approved by the federal government, other cuts to medical assistance will go into effect.

Cuts are most likely to affect individuals and families making more than 133% of the Federal Poverty Level, as little as $1,207 monthly. People with disabilities and others have fought hard for protections that give them care to keep them alive or allow them to live in the community and work real jobs. They are afraid that changes might be made to take away these protections before they even know someone was thinking of particular changes. The two limits on power may not be enough to protect them. Read an excerpt of a memo from Wisconsin’s Legislative Reference Bureau. 

Reposted by permission from the Direct Care Alliance.

Healthcare Typecasting – “Nobody Knows My Name!”

Shakespeare had it wrong. If a rose were called a stinkweed, it wouldn’t smell as sweet. And if Romeo’s name had been Rosencrantz or Guildenstern, Juliet might have had a long and happy life. Names signify.

That was the message I took away from Paula Span’s recent New York Times blog “What’s In a (First) Name?” about the way health care professionals address patients. Most comments agreed that doctors, nurses, and other health care professionals should acknowledge the patient’s unique identity by using his or her preferred name. The patient is a person—the first principle of compassionate medicine.

Names also matter to the relative, partner, or friend who has major responsibilities for providing or managing that person’s health care—the family caregiver. But before you have a name, you have to exist. I’ve been professionally and personally involved in caregiving for the past 20 years. In that time many family members have told me, “I’m invisible in the hospital/nursing home/rehab facility.”

“Invisible,” that is, until it’s time for discharge, payment, or major decisions. Then the family member morphs into someone with a name, except it’s not a first name or a full name. And it’s generally not “Sweetie” or “Honey.” It’s “The Wife,” “The Daughter,” “The Son,” “The Friend.” Typecasting is a convenient way for professionals to distance themselves from the individual who is not their patient, but who makes demands on their time and attention. The relationship between family members and the patient’s health care team is ambiguous, sometimes collaborative but often full of conflict.

As The Wife for my late husband who suffered a traumatic brain injury and was left quadriplegic, I was expected to be at the service of professionals, do their bidding, fill in the service gaps, and be the passive recipient of their “teaching.” My other responsibilities and preferences counted for naught. An elderly mother, a full-time job, children and grandchildren—nothing mattered.

The category of The Wife came with certain expectations, different from those of The Husband, who was given far more leeway. Husbands were praised for just showing up, but wives were expected to do the dirty work. I suspect that the same differential exists with The Daughter and The Son. It was not that I did not want to be known as a wife; it was in fact that I wanted to be able to maintain that identity in a way that preserved and honored our long and loving marriage. The only time I remember my husband crying in the rehab facility was when a nurse berated me loudly in his presence for failing to master some medical technique on the first try. He wanted to protect me but couldn’t. By turning me into a distorted version of a wife, the nurse had taken away his identity as a husband.

Who was I? I immediately rejected the research term “informal caregiver,” which bore no relation to my demanding responsibilities. Other terms like “care partner,” “caretaker,” “support person,” or “volunteer” may work for some, but not for me. The British term is “carer,” but that is unlikely to take hold in this country. I finally acknowledged that I was a “family caregiver,” with “family” referring to who I was and “caregiving” describing what I did.

Many people do not recognize themselves as family caregivers and do not like the term. They may feel that this designation deprives them of their primary relationship to the patient or that they may become overwhelmed by responsibility, not an unrealistic fear. At the United Hospital Fund we created a Next Step in Care guide to becoming a family caregiver, which stresses the importance of self-identification in health care settings to assert one’s rights to participate in care planning and obtain appropriate and timely training. Another guide helps family caregivers rebut misinformed claims that the privacy rules under HIPAA prevent sharing information with them. Community services for family caregivers are available for those who are ready to seek them out and are willing to take on the designation for this purpose.

Being proactive is the best way to assert one’s identity and importance in the patient’s well-being and care. Just as health care professionals are supposed to introduce themselves to every patient, family caregivers should introduce themselves to everyone who plays a role in patient care. “My name is _________. I am _________’s ____________ and also his/her family caregiver. Let’s talk.” Having a name and an identity will not guarantee an effective working relationship with professionals, but it’s a good start.

Who stands between you and your doctor

Turn on Fox “News” on any given evening during this health care debate summer, and you will hear threats concerning the future of your relationship with your physician:  “Whatever it is, it’s a lot of government between you and your doctor.”

Regardless of whether the healthcare reform passes, whether it creates any new bureaucratic structures, whether it regulates healthcare delivery in new ways or not, it is a myth to assume that Americans – insured Americans – have an unmediated doctor-patient relationship.

Take for example the Cancer Center where I conduct my research.  I am  a participant observer in a large hematology and stem cell transplant clinic.  Patients and doctors have dozens of meetings a day in the exam rooms that surround the “back of the house” area.  Each meeting involves critical discussions about chemotherapy, radiation, medications to control side effects, prolonging life, avoiding death.  I’ve sat in on over one hundred of these conversations – they are quiet, serious, detailed, overwhelming.

The back of the house is overwhelming in a different way.  A “W” shaped room is lined with computers – at each computer sits a doctor, a nurse, or a nurses’ aide.  Beside them are the files, often five or six inches thick, for each patient.  They read MRI results, blood tests, and doctor’s notes on their computer screens, as each nurse updates a doctor on his or her next patient, or a doctor or nurse practitioner grabs a moment to dictate medical notes in high-speed med-speak.  I stand in the corner to try to stay out of the way.  On a busy day it has the feel of the barely controlled chaos of air-traffic control at a major airport.

One computer stands out from the others.  A white haired woman named Alice sits on a raised stool at a computer in one corner of the W.  She is constantly talking, on the phone, to herself, to one of the physicians, and piles of patient files surround her.  Alice deals with insurance.  All day long doctors shout questions to Alice: “Was the donor matching on Mrs. X approved?”  “Does patient Y have a hospice benefit?”  And the biggest question of all: “Can we get patient Z approved to use Chemotherapy X?”

This last question struck me as odd the first time I heard it.  Especially when I realized that Alice had to call a nurse case manager at the insurance company to get case-by-case approval.  Not for Medicare or Medicaid – those plans have annually approved medication guidelines.   Doctors tell me they have an easier time making a treatment plan with those insurance guidelines because they know up front what drugs are in their arsenal.  Private insurance companies are the problem – those gold plated plans with the high premiums have case managers who haggle over every deviation in the treatment plan.

The problem here is that cancer treatment varies significantly from patient to patient.  One patient may not be able to tolerate the most commonly prescribed chemotherapy and may need a second-line drug.  Or their cancer may not be responding as well as expected, so the Oncologist may wish to switch to a different mix of therapies.  Each of these decisions must be agreed to by the case manager.  In many cases, this is a pro forma agreement.  The physician makes the medical case for the deviation in treatment plan, Alice explains it, the case manager signs off. 

In many other cases, however, the insurance company won’t go along.  I’ve listened as Alice, then one physician and then another argue with one case manager, then the medical director, only to hit a wall.  This is the invisible bureaucracy at work.  The denial is not written anywhere that the patient can see.  Most of the time, the entire battle takes place behind the scenes and in the end, the patient is simply not offered that particular treatment option.   The doctor simply constructs plan C.

How many plan Cs are created every day whithout our knowledge?  How much of our medical care comes under the purview of these shadow regulators?  Perhaps we will never know.  I don’t know about the guys at Fox News, but I’d prefer to have my regulations out in the open where I can see them.