Sunday, March 31, 2019
For those who read this Blog regularly, thank you. Especially as I have been leaving the bulk of recent postings to my wonderful blogging colleague and all-round elder law guru, Rebecca Morgan. Thank you most of all, Becky!
It is early morning on a Sunday as I type this. The Arizona sun is not quite above the eastern horizon. A calm morning after several days ... okay, I confess, weeks ... of small troubles. I had time to read The New York Times, and there it is once again, an article with a title and content that seem right on point for what I am pondering:
For the last several weeks, my sister and I have been struggling to understand how best to help our mother in the latest part of her journey with dementia. Recently she fell twice in single week, when rising before dawn and struggling to get dressed by herself. She did not need to be up so early, but in a lifetime of early rising, it is hard to change. Learning new routines, such as calling for help, is never easy, but especially so when memory and awareness are impaired by dementia. Her second fall resulted in what Mom had long feared most, a fear that will resonate for many people. She fractured her hip, as well as a few annoying ribs.
This put the three of us, my sister, my mother and me, squarely in the middle of doctor consultations, hospitals, rehabilitation centers, home care agencies and a search for alternatives for care. Do you have a mental image of Queen Elizabeth in London? Perhaps you have seen photos or news footage of her in recent weeks, walking with determination and carrying her purse, as she attends to her royal duties? Well, Queen Elizabeth and our mother are the same age and seem to have very similar abilities to persevere. We think of our mother as a slightly smaller version of the Queen, perhaps walking a bit slower although with equal commitment to the task, complete with her own favorite handbag. Or she was until the recent set of events.
At age 93, Mom sailed through surgery to stabilize her fractured hip, and even did pretty well during the first phase of recovery in the hospital. One small blessing for Mom is that she has no memory of the falls, no recollection of the surgery, and no memory of pain. Thus she's surprised when it "hurts" to try to stand, much less walk. Of course, both pain and understanding of what pain signifies, are important reminders of the need to take things slow.
We've done the hospital surgery stay "thing" before with Mom, and we've learned to treat such events as a marathon, rather than a sprint. We've learned, for example, that our mother's agitation after surgery makes IVs difficult and that any form of narcotic pain medication is likely to trigger days of vivid and disturbing hallucinations. For pain, fortunately tylenol is enough with Mom. We work hard to come up with a way for someone (usually my sister, until I can fly in) to be there each night, when we know hospital staffing levels can be low and call buttons may not be answered quickly. We know that without being there, when Mom does sometimes complain of pain, we will to need to remind the staff that tylenol is usually sufficient.
We try to rotate nights. My sister is a pro, and after weeks of my somewhat frantic naps on airplanes, I've become pretty good at falling into a wakeful sleep mode in an upright position. Staying overnight in a hospital is disorienting for the healthiest person and much more so for someone like my mother who cannot understand why this "hotel" has staff members that keep waking her up at night to take her temperature and hand her medication to swallow. I will be forever grateful to the nurse who, after my mother spit a full mouthful of water and the medicine back in her face, nonetheless returned promptly to help throughout the third shift, still offering smiles and kind words. The nurses who advocate for change in The New York Times article have it right -- "safe staffing levels" are one key to sound hospital care; only with adequate staffing can nurses be expected to keep working in such taxing circumstances.
The next decision was about where to go after the hospital. One option presented by the discharge planner was to go to a skilled nursing facility, a/k/a nursing home. We had previewed a wide range of places and we already had a list of possibilities. But we were pretty confident Mom could tolerate physical therapy, and therefore, after consultation, we opted for a facility that specialized in rehabilitation.
One complication: The rehab facility's admissions director said that they were not willing to take someone with dementia unless the family made sure there was 24/7 assistance during periods of confusion and, they emphasized, to keep her from wandering. With gratitude, we accepted a brochure offered by the admissions director for a local home care agency that they had worked with before. My sister, a true angel, and I, very much a mortal, knew we couldn't do this alone.
And thus began a strange variation on the "Bell Rings; Nobody Comes" theme of The New York Times article about hospital care.
The first yellow flag was when one of the line staff, a certified nursing assistant (CNA) at the rehab facility, who heard we were hiring companions from an agency, commented, "Well, okay, if you want to do that, but just so you know, these people don't do a darn thing. They won't lift a finger to help." I didn't know what to say; I think I said something like, "Well, let us know if there is a problem."
The "problem" emerged quickly. Companions from the home care agency said the rehab staff were not responding to call buttons when help was needed for our mother. The rehab staff were complaining that the companions didn't provide any help. I talked to an administrator at the rehab center. He assured me that their policy was for staff to respond promptly to call buttons and that he would remind the staff that a family member or hired companion was doing "the right thing" by using the call buttons to seek help.
But the reports continued, even as Mom began to recover more function, and thus actually needed more help in key tasks because she was more mobile. Different companions and even friends reported that the CNAs at the rehab center would, for example, help our mother to the bathroom toilet, but then would refuse to stay until she finished. Some reported the CNA turning to the agency's companion and saying with disdain, "You should handle it from here."
I tried talking again with Rehab's administrators, this time the director of nursing. She was also quick to reassure me that we were not wrong to ask the rehab staff to assist our mother in the bathroom and to remain with her till she finished, as our mother was still unable to rise on her own and also could not or would not use the pull cord. She thought the most recent report was about one new rehab employee, who may not yet understand his or her role.
But the reports continued. One report came from a friend visiting Mom. She noticed buzzers ringing endlessly on Mom's floor, even when available staff were chatting nearby. I tried talking with the management staff again. At one point, the home care agency actually swooped in and removed a companion we hired to help our mother, after the rehab center complained to them that the companion was complaining "too loudly" about the rehab staffing and lack of coordination with staff. In response to the turmoil my sister ended up taking another night shift in rehab (after a long-day as an administrator for a charter school). I started planning another flight to Arizona.
I slowly began to realize that this was not a problem that could be "fixed" with polite requests or even more directly-worded complaints about staffing roles. I learned:
- The direct care workers at the rehab center felt seriously over-worked and under-appreciated;
- The rehab center was often short-staffed, especially when employees called off on short notice;
- The direct care workers resented the agency's companions "doing nothing" when an extra pair of hands, any hands, would have made their work easier;
- There was tension between the direct care workers, most of them CNAs, and the cehab Center's other "higher" staff, including nurses and shift supervisors;
- Family members of other patients were also concerned and confused about what to do about unevenness of care. They weren't required to have a companion as their loved one did not have the dreaded "dementia." But their need for prompt assistance for loved ones recovering from car accidents, strokes, or major surgery was just as great.
A family member of another patient in rehab commented to me, "This is a broken system." At first I thought she meant the Rehab Center. But she clarified. "This is just one part of a broken care system." She meant that all of care is a broken system.
March 31, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Games, Health Care/Long Term Care, Medicare, State Statutes/Regulations | Permalink | Comments (1)
Friday, July 13, 2018
Here's fun news. This week, one-time Arizona State golfer and a favorite pro, JoAnne Carner, shot her age -- 79 -- in the opening round at the U.S. Senior Women's Open tournament in Chicago.
Wednesday, December 13, 2017
Are games and food supplements that promise to stave off the onset of dementia the modern day version of "snake oil?" I promised to write more about the Aging Brain Conference at Arizona State University's Sandra Day O'Connor College of Law on December 8, 2017. Speaker Dr. Cynthia Stonnington, Mayo Clinic, offered an important look at ways in which law, ethics, medicine, and commerce can collide with her survey of a host of approaches receiving "popular" press treatment.
She examined self-described "brain-training" programs, miracle diets, supplements and targeted exercise programs, noting that most studies that purport to demonstrate positive results from these items have serious flaws. Thus, at best, programs that claim to provide "protection" against dementia are usually promising more than has been proven. Dr. Stonnington, along with the morning keynote speaker, former U.S. Surgeon General Richard Carmona, reminded us that
- maintaining social engagement,
- engaging in lifelong learning,
- getting regular exercise of any type,
- having good blood pressure control,
- getting adequate sleep, and
- focusing on good nutrition (including eating plans such as the Mediterranean, DASH or MIND diets)
are far more important than any single, magic game or exercise.
One of the most lively discussions of the day came near the end, in response to presentations by Dr. Patrica Mayer of Banner Health in Phoenix, Amy McLean of Hospice of the Valley. and Life Sciences Professor Jason Robert (ASU) speaking for himself and Susan Fitzpatrick (James S. McDonnell Foundation), about end-of-life considerations for persons with dementia or other serious illnesses. What would be the most likely response of a physician or emergency personnel confronted with a "do not resuscitate" tattoo on the chest of an emergency patient? Dr. Mayer stressed that she is seeking reliable methods of communicating end-of-life wishes, and for her that means a preference for a written, Medical Power of Attorney. She wants that "live" interaction whenever possible, in order to fully explore the options for care for individuals unable to communicate for themselves. But she also noted a frequent frustration when she contacts designated POAs about the need to make tough decisions, only to learn they were completely unaware before that moment of having been named as the designated agent.
I was part of a panel of court-connected speakers, including Arizona Superior Court Judge Jay Polk (Maricopa County), neuropsychologist (and frequent expert witness) Elizabeth Leonard, and experienced Phoenix attorney Charles Arnold. I was interested to hear about -- and will pursue more information on -- the psychologists' use of evaluative tools for clients that use scenarios that would appear to test not just for loss of memory, but impaired judgment. I was speaking on the unfortunate need for judicial inquiries into "improvident transactions" by persons with problematic cognition and I used litigation approaches from other locations -- Ireland (common law) and Maine (statutory) -- as examples. The Arizona legal experts reminded me to take a closer look at Arizona's financial exploitation laws.
For more from this conference, see Learning to Say the Word "Die" -- about a pilot program developed by Dr. Mayer while she was an advanced bioethics fellow at the Cleveland Clinic. I also recommend Dr. Mayer's article on CPR & Hospice: Incompatible Goals, Irreconcilable Differences,
December 13, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Games, Health Care/Long Term Care, Legal Practice/Practice Management, Programs/CLEs, Science, Statistics | Permalink | Comments (0)
Friday, November 3, 2017
One of my favorite parts of the LeadingAge Annual Meeting is my first tour of their Expo. Law conferences are so dull by comparison! There are hundreds of vendors at the LeadingAge expos. You can find a smorgasbord of senior housing options, architects eager to help you with your purpose-designed projects, all kinds of communications systems, management software and health-related devices, even cooking classes. I often find information that helps my research, including data complications by actuaries, accountants and marketing firms about trends in housing and care systems. This year I heard about an "app" in development with a university team that included law students, to offer caregivers options to identify potential concerns, such as financial abuse.
In the years I can attend, I keep my eyes open for my own personal "That's Creative" award. This year, it was the Sky Factory -- where, using solar energy, the company offers a wide variety of windows, skylights, and other wall installations -- but with a twist. These portals offer "award winning illusions of nature." Overhead views show clouds and trees, rustling in the wind. Another window might offer a view of an especially pleasant beach, with waves in motion. That is why the designs need energy, appropriately solar energy, to keep the images in motion.
Perhaps most unique, some of the images are designed so as to offer subtle changes triggered to the time of day (or night). Sunlight plays across the images of nature, and shadows move with the sun. The goal is for individuals who are house-, chair- or bed-bound to engage with nature, with the hope the engagement will stimulate mental response and circadian rhythms in the body. The use of this product is not limited to seniors, or even disabled persons.
Thursday, March 24, 2016
We don't use this blog to promote a specific product, so please don't read the following as that. There is some educational value in learning about efforts of world-renowned corporations to provide products for people with special needs. I'd heard Nike had shoes in the works for people with special needs so I wanted to share this article regarding their availability. Nike Expands Shoe Line For People With Special Needs was published in the March 16, 2016 issue of Disability Scoop. "The company was inspired to develop the unique system after hearing from then-16-year-old Matthew Walzer in 2012. Walzer, who has cerebral palsy, requested more accessible footwear so that he would be able to go off to college without needing assistance tying his shoes." According to the story, there are several models of the shoe from which to choose.
Friday, November 13, 2015
Studies have shown that those with deep interest in "fun" have healthier, happier lives as they age. Or at least, that's what I hope the studies show. Along that line, I discovered a new definition for the "Century Club," offered by the Dressage Foundation, for the "exclusive group of horse and rider pairs who perform a dressage test at a recognized [horse] show when their combined ages total 100 years or more."
An issue of The Chronicle of the Horse, in an article titled "Older, Wiser and Still Having Fun," features 24-year old dressage mount Toblerone and 77-year old rider Donna Donaghy. Donna is "not done yet" and she plans to keep on riding and showing as long as she can still throw a leg over the back of her horse.
Monday, March 30, 2015
While driving home from the grocery recently, I happened to catch "Press Play," a TED Radio Hour broadcast on the importance of play. It was such an interesting program that I ended up taking my groceries for another couple of spins around the block so that I wouldn't miss a segment!
One interview was with researcher Dr. Stuart Brown, who described his early work with (and about) criminals, including at least one mass murderer. While no single factor accounted for behavior, he noticed that in some of the worst histories, there was a distinct lack of opportunities for childhood imagination and healthy play. He brought this forward into research with the general population, with observations about the role of play throughout life, even for persons with deep dementia. He and other researchers on the program were convincing, to wit, that play, involving pure fun and engagement with others, stimulates the brain in important ways.
Monday, September 8, 2014
Have you ever considered the similarities between caregiving and improv? Probably not--who would-they certainly seem to be quite dissimilar occupations. Yet when you think about their characteristics, they are quite similar. The website, In the Moment, which is focused on "creative ideas for training staff" lists on the landing page characteristics that apply to both, including being flexible, adaptable, courageous, spontaneous, generous, selfless and trusting.
and within twenty four hours ... was on a plane flying to be with ... family and wait for ... Dad to pass away. During that time of sitting, laughing, thinking, crying and rambling -[she]...realized that the world of Improvisation was very similar to the world of caregiving and Alzheimer's disease and dementia.... [unsure] why the idea hit ... then, maybe it was divine inspiration, maybe someone was telling [her] the reason why [her] ... Dad had Alzheimer's or maybe [she] ...was sleep deprived. Probably all of the above... [Having]... attended a lot of very informative and well executed workshops and trainings... [yet] not a very good learner... [she] remember[s] sitting in a class and listening to the instructor talking about effective communication with persons with dementia."
Then inspiration struck, as she says in her own words "[a]ll I could think of was how tired I was of sitting . If she would just do this improv exercise it would illustrate her point more clearly and get everyone up and moving. Hmmmm...." She wrote grant applications, with this excerpt from her abstract, explaining the parallels
The rules of Improvisation parallel the “ rules “ of Caregiving for a person with Alzheimer’s. Each rule of Improv has exercises, hands on techniques to illustrate points of care. Improv itself teaches characteristics that are essential to the caregiver : listening, validation, accepting others’ realities, problem solving and creativity to name only a few. I see improvisation as another tool for caregivers and for trainers to use to create a better quality of life for each person with Alzheimer’s. I want to clarify that this this is not training of how to do Improvisation. But training that uses Improvisation to teach Alzheimer care.
The "rules" she references can be accessed here. The website also provides information about the 6 week training program, training tips, and other resources. Ultimately, the goal of this project is to "[e]Employ ... theater games with creativity exercises ... [to] provide caregivers with the methods to become better at what they do."
Live in the moment--and enjoy that moment with a family member who has dementia---very good advice indeed.
Tuesday, October 22, 2013
On yesterday's ride over the Blue Mountains between my Law School's campus in Carlisle and the campus in State College, I caught a great public radio program, interviewing folks at a "Memory Cafe."
As anyone involved in care for a person with dementia knows, especially those who are "stuck" at home, it can be a challenge. Both the caregiver and the cared-for person could use a good break now and then.
That's where the concept of Memory Cafes come in -- a place where folks won't judge about how Alzheimer's or similar cognitive impairments might affect the ability to have a traditional conversation. Where canes and walkers are welcome. A place that is warm and friendly. Where people understand -- and can share a laugh, along with good coffee.
From Wisconsin Public Radio, here's a bit of history and a description of a cafe in Appleton, Wisconsin:
“'Memory Cafes' got their start in the Netherlands and are common now both there and in England. They are 'judgment-free zones' for people with mild dementia or memory loss.
About a dozen people gathered last week at a cafe session at a coffee shop in Appleton. John McFadden is a co-coordinator of the memory cafe and plays the ukulele to welcome participants. Betty Ann Nelson came with her husband, Duane. The Nelsons have been married 58 years and have attended several cafe sessions since they began earlier this year."
Some sessions might involve activities, such as a program called "Time Slips" where participants pass around amusing photos and are invited to tell the story. One photo showed nuns on bumper cars at an amusement park, leading a customer to describe them as "Holy Rollers."
For more on the concept, follow the links on Wisconsin Public Radio to listen to this radio account.