LIVING IN RETROGRADE
By Barbara Speedling, Quality of Life Specialist ©2018


A friend and I were having dinner at a rather expensive steakhouse recently.  We were both celebrating an event, so we decided to splurge.  As we were enjoying our pricey steaks, I said, “You know, Judy, twenty years ago we thought the steaks at the diner were really good.  Today, we would never order a steak in the diner!”  We agreed that what would have passed for satisfying two or three decades ago, will no longer be satisfying since we’ve experienced something we enjoy more.


How easy is it to go backwards in your life?  I can remember having no furniture beyond a mattress on the floor, some milk crates borrowed from the local grocery store that I used creatively as seats and book shelves, and eating macaroni and cheese several nights a week because it sold for 25¢ a box.  I could return to that time in my life when I had nothing, if I had to, but I wouldn’t be happy or satisfied.


One of the first things I want to understand about someone I’m asked to interview is how far back he’s had to go.  How he’s lived and worked, what he’s accomplished, and how strong his ego is are just the first of many things I want to know about him and his lifestyle.  Understanding the level of success and independence he’s achieved will provide great insight into how he might respond now in the face of dependency.


During a recent conference for social workers in Maine, I asked my audience if they thought giving up everything you’ve worked for and everything that defines you to move into a nursing home is a traumatic experience?  Many said they would consider it a difficult experience, but had not identified it as traumatic.  I offered that it is likely one of the most traumatic things a person could experience – equal, perhaps, to having to declare bankruptcy or becoming homeless.  Assessing behavioral health from this perspective puts an entirely different spin on person-centered care.


As a member of the Baby Boomer generation, I can speak personally about living in retrograde.  Having worked in long-term care for the better part of my adult life, I am already acutely aware of what I will have to give up to live in a nursing home. I currently answer to no one.  Without a doubt, I will not respond well to being directed. I love time alone and having privacy.  I will not want a roommate.  I am obsessive about order and symmetry. I will not want you to rearrange my things. I like variety and thrive on change and new experiences.  I will not tolerate the same routine day in and day out without agitation.  I have trouble sitting still and that will be the biggest adjustment.


I believe that person-centered care means that you must explore ego, lifestyle, occupation, and achievement closely as the first step to understanding someone’s behavior.  How disease and disability impact the person now has to come next.  Considering the move to a long-term care environment to be a traumatic event is the final step in developing an improved awareness and anticipation of where to begin a realistic plan for this person’s care.


Improving the sensitivity of your staff requires helping them imagine themselves living in retrograde.  Rather than lecture about how they should feel, help them to feel it. Ask them to consider how far they’ve come in their own lives and how easy it would be to go backward. Have an open conversation about loss and grief. Many times, the behavior I’m asked to assess is a manifestation of grief and depression – often motivated by the losses I’ve described and complicated by cognitive decline.


Achieving a person-centered, person-directed approach to care sometimes requires little more than looking in the mirror. How would your behavior – your attitude – change if you had to live in retrograde?


Start there the next time you meet a resident who is resistive, agitated, aggressive, or just plain non-compliant. You might find that taking a realistic look at the trauma of a life lost opens a whole new dimension of thought on what causes and what might soothe a change in attitude.

Who Wants to Be First?

By Barbara Speedling, Quality of Life Specialist ©2019


Whenever a new techno-gadget is introduced, we hear about great numbers of people lining up days in advance to make sure they are one of the first to acquire this new device. People with means often pay more for an orchestra seat in the theater or tip the Hostess extra for the best table in an exclusive restaurant.


In a recent conversation with caregiving staff at a long-term care facility, a nurse asked how I would manage the behavior of a resident who demands to be first? This behavior occurs at meals, at social programming, and with regard to how her personal care is scheduled. I said I would let her be first. That wasn’t the response she was looking for, but I believe it is the only reasonable way to avoid the negative response that occurs when she is not permitted to be first.


What is known about how she lived prior to admission? Born in 1932, her history includes that she was married to a man who owned a successful manufacturing company. She did not work outside the home. There were employees who managed the daily housekeeping duties.  She was accustomed to flying first class and spending summer weekends on the yacht.


She was a woman of means who passed the time with the ladies who lunch. She has lived a first-class lifestyle.


The new Federal regulations in Trauma-Informed Care require that trauma survivors receive culturally competent, trauma-informed care. While there are many things that might cause someone to be diagnosed with post-traumatic stress disorder (PTSD), the transition from life in a private home to life in a nursing home or other residential community could be traumatic for many people.


I have yet to meet the happy resident who has made the independent decision to move into a long-term care facility. Most are placed in the environment either by family members or by the judgement of a physician or a court. The stress of giving up everything you’ve worked for, all of the things you’ve acquired, turning over the keys to the car and submitting to the will of others could be extremely traumatic for some.


So, is wanting to be first a behavior or a lifestyle preference? A culture, perhaps, that is being overlooked in the assessment of the individual? Whether the person suffers a dementia or is fully cognizant, the culture she has lived will be the culture she will want to live in whatever environment she is living in now.


A good friend of mine turned 89 this year. He is independent, capable in most things and enjoys a satisfying quality of life. A successful professional, he’s maintained his customary lifestyle.  He dines out often, travels with family and friends, and has several interests to keep him busy.


We were discussing getting older and having to acknowledge the physical changes that cause people to alter their lifestyle. In describing his own acceptance of the need to use a cane, he said it was a traumatic experience for him. The cane is a constant reminder of his diminished physical capacity.


He went on to say that it was even more frustrating and depressing because, “I don’t think like and 89-year-old man. I think like a man.” Making the acceptance of growing older that much harder to achieve.


Consider the lady who wants to be first. She is not thinking like an 87-year-old lady who can no longer live the way she once did, she is thinking like herself. The fact that she has lived a first-class lifestyle will impact the way she reacts to her new environment and the degree to which the transition might be traumatic for her. Allowing her to be first will be far more successful than trying to change the way she has been socialized – her culture.


I believe this is an aspect of trauma-informed care that needs further discussion and consideration in the assessment of new residents. Should we expect that anyone will gleefully give up – or forget - an entire life to live what will be a far less satisfying life than the one they once lived? Would living with people who have been socialized differently be as satisfying as living with people who have shared your culture?


If you complicate the circumstances with a dementia diagnosis or a mental disorder and the disintegration of reasoning and social filters, it makes understanding the culture in which the person has lived the first step in the development of person-centered interventions. This is something the caregivers should consider when pairing roommates or organizing groups for meals and social programming.


The next time you have an occasion to say, “Excuse me, I was first!” ask yourself if that is the way you’ve been socialized or a personality defect? Looked at from this perspective, I think you’d agree that it is a cultural consideration. We are socialized to respect the order of the line.


Talk about it. At the very core of customer service thinking is the simple concept of understanding who your customer is and what they expect. So, who wants to be first?


MANAGING THE BUSINESS OF PEOPLE: LEADERSHIP IN TODAY'S LONG-TERM CARE ENVIRONMENT

By Barbara Speedling, Quality of Life Specialist ©2018


Staff recruitment and retention has emerged as a growing concern for many facilities. As the nation faces a significant nursing shortage, long-term care facilities are competing with hospitals, home care providers, and each other for eligible candidates. Once hired, it is not uncommon for a new employee to quickly, and often without notice, vacate the job for a better hourly rate at the facility down the street.


This constant revolving door, particularly at the management and supervisory levels, causes the facility to remain in a state of instability. The less stable and structured the work environment is, the greater the potential for dissatisfaction among all groups – residents, families, and staff. Dissatisfaction increases the organization’s risk for negative events.


The new Federal Regulations in Behavioral Health expect that all staff be competent and possess the skill sets and resources to provide informed, person-centered, person-directed care.  In other words, you have to know who you’re talking to and arrive at solutions that will address his specific needs.  I think this is a good approach to understanding the behavior of everyone.


Achieving an environment of care that speaks equally to the quality of life for residents and the quality of work life for staff requires education and training that goes beyond addressing what the resident needs. It’s time to begin asking what those working in the facility need.  If you and your staff are satisfied and content, your customers will be satisfied, too.


The industry is further challenged by the changing of the guard at the ownership and administrative levels.  As the Baby Boomers move to retirement, with them goes the generation of leaders who had a foundation in frontline care. Many of my contemporaries worked their way up to ownership or leadership positions from within an organization.  Today it is more common to meet owners and leaders who come directly from academic studies or other types of health-related industry into the real world of long-term care.  The systems designed to prepare someone to be licensed as an administrator are not always a sufficient substitute for actually doing the work of the people you are now directing.


Where there once was a predominance of individually owned and operated facilities, the business of long-term care has moved to a more corporate model. The shift has contributed to the further decline in the organization’s ability to remain stable.  Administrators and Managers come and go.  Facilities are sometimes bought and sold in a manner that causes the staff to be unsure of their job security.  Once distracted by concerns about potential layoffs, labor-management disputes, or the search for a new job, the morale and work ethic of the staff quickly deteriorates.


Maslow’s hierarchy of needs illustrates the path needed to achieve our personal best.  Until a person’s basic needs are met, he will not be able to think beyond satisfying those basic needs.  How much do you know about the culture and lifestyle of your staff?


Could it be that the new employee who is always late is a single parent with three small children who relies on unpredictable public transportation to first bring her children to the babysitter at 6:00 AM and then continue on to her job? An honest conversation about her issue might lead to a viable solution – a small change in her hours to allow an additional 30 minutes for her to arrive. Reducing the stress on the employee and on the supervisor and coworkers who will now know what to expect from her.


The current epidemic of heroin and opioid addiction, as well as issues relative to medical marijuana are impacting people of every sort. Do you know who might be experiencing addiction issues among staff or residents and are there services in place to help them? Who is receiving medical marijuana and what safeguards are in place to ensure compliance with both legal and regulatory requirements?


Are there people living or working in the environment who suffer from a mental disorder? Anyone who is a victim of domestic violence? Someone who is homeless and sleeping in the employee locker room? Any and all of these circumstances will impact the way the person behaves. What services and resources are available to help them overcome whatever challenge is keeping them from achieving their personal best?


The behavior of a group begins with the behavior of the leader. There are some simple steps every leader can take to ensure the satisfaction of the staff remains an important focus in the organization’s vision for customer satisfaction and success:


  1. Cultural intelligence:  Understand the demographic issues impacting the social order. As we become a bigger melting pot of ages, races, religions, ethnicities, sexual identities, and cultures, learning about the social and occupational perspectives of a diverse workforce is crucial to avoiding social discord. Offer opportunities to learn about each other, to discover how much we have in common as people, and how similar we are as workers to the people we are caring for.
  2. Management Training:  Many managers have never had formal management training. Many people are promoted because they are good at their particular job, not necessarily because they are good managers of other people.  Middle-managers are important communicators between the leadership team and the frontline staff.  Cultivating good professionals into effective managers should be a priority in the organization.
  3. Behavioral Health:  Apply the principles and intent of the Federal regulations for behavior to all persons living and working in the environment.  Trauma-Informed Care expects that the facility will acknowledge the responsibility to recognize and address issues of mental health, substance or alcohol use, and post-traumatic stress disorder (PTSD) with programs and services specific to individualized treatment. Whatever mechanisms you are creating to ensure residents receive appropriate care and treatment for psychosocial and behavioral health needs should be applied to the people working in the environment, as well.
  4. Motivation and Morale: What does it take to move beyond the status quo? Motivating staff to remain interested in looking for new and more effective methods of caring may be the most important of all leadership skills.  Caring for people who do not want to be or who do not understand why they are in the circumstances they are in can be a thankless profession, no matter your position or responsibilities.  There are owners and administrators who feel as underappreciated as their frontline workers. Recognizing the need to create opportunities for recognition and rewarding positive, creative input in problem-solving and performance improvement is an effective way to motivate greater interest and pride in the organization’s growth and development.


Anticipating the reactions of a person based on what you know about his circumstances can be a valuable way to avoid many conflicts. Leaders have the power to motivate a new culture, a culture that embraces the contemporary challenges of navigating the business of people. 


Demonstrate an interest in the population to be served and in those who are providing the service. Help your staff to recognize their commonalities with each other and with the populations they serve when it comes to achieving satisfaction and quality of life.


What makes an environment inviting and satisfying? What makes someone want to stay?  Find the answers to these questions and you will have discovered the most important ingredient in the recipe for successful leadership. 

THE IMPACT OF MUSIC ON MEMORY AND LANGUAGE
By Barbara Speedling, Quality of Life Specialist ©2018


Who can deny that music makes you feel good? For most of us, the right melody with the right rhythm sends us into a frenzy of toe-tapping, hand-clapping, hip-shaking glee! While every kind of music won’t elicit the same response from everyone who listens, exposure to music benefits every listener in a myriad of ways.


Earlier studies at Northwestern University on the impact of music on children showed improved vocabulary and reading skills. Moreover, the researchers found that “musical training has a profound impact on other skills including speech and language, memory and attention, and even the ability to convey emotions vocally. 1


For people with cognitive and memory deficits, medical research shows us that music affects the brain in ways that can promote language and understanding beyond the spoken word. Research also shows that music has a significant impact on reducing depression and agitation in people with dementia.2


Music does a great deal to evoke memory, with certain melodies bringing to mind pleasant memories of people and life events. People identify with the song they danced to at their wedding, or the song that was playing when they had their first kiss at the Junior Prom, or sometimes, even the song that makes them remember a broken heart.


Whatever the story, hearing the music brings the memory rushing back with vivid images of where you were and who you were with at the time. Using music in this way can be extremely comforting to people who are having trouble remembering.


Far from the creepy scenes in One Flew Over the Cuckoo’s Nest in which Nurse Ratched plays cheerful music to signal medication time, research supports the fact that music can be used to enhance recall. As such, used appropriately, music can help residents to anticipate certain aspects of the daily routine, reducing the common anxiety seen in people with memory impairment in response to their own confusion over what to do next.


The music offered in most nursing homes and assisted living environments includes piped-in music over a central sound system, radio and/or satellite music in the common areas, or live entertainment in one form or another. In recent years, there has been an increase in the use of smart phones and iPods among residents, as well. While each has their place, reaping the vast benefits of music exposure requires improved planning and thinking about how to use music in the environment.

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1 S.L.Baker, “Music Benefits the Brain Research Reveals, circa 2010,” NaturalNews.com, www.naturalnews.com/029324_music_brain.html

2 Laird Harrison, “Music Therapy May Help Dementia Patients Especially,” Caring for the Ages, Vol.12, No.7 (July 2011): 1

Creating Meaningful, Satisfying Lives One Person at a Time

DO YOU KNOW ME?

By Barbara Speedling, Quality of Life Specialist ©2018


Do you know me?   This is often the first question a resident with dementia will ask me during an interview. When I’m asked to evaluate a resident, I don’t know much about the person beyond what I’ve been told by caregivers or read in the medical record.  Until I sit down and talk with the resident, I have little more than a superficial understanding of what might be motivating the behavior the staff finds challenging.


While there are many aspects of communal living that the average adult would find annoying - like being restricted from moving about freely, going outside, taking a nap when you feel like it, eating whatever and whenever you want, sharing a room with a stranger, and the noise and overcrowding similar to what you might experience on a New York City subway at rush hour - what would otherwise be interpreted as a normal reaction to being limited is seen as abnormal and worthy of psychiatric intervention in the person with dementia.


In some cases, the behavior I’m asked to assess is nothing more than a personality exaggerated by dementia.  For example, a man who has been the head of his household, a business owner, described by family as a “man’s man,” who loves hunting, fishing, playing poker, and watching football with his buddies, is likely to be loud and in charge.  So, his yelling and attempts to tell others what to do is not behavior, but a man with dementia who is doing what he has always done. He just doesn’t fully understand that the circumstances have changed.


Understanding personality, or personhood, is the first and most important step to unraveling the motivation for a person’s behavior. Thomas Kitwood (1997) defines personhood as “a standing or status that is bestowed upon one human being by others in the context of particular social relationships and institutional arrangements” [i] 


In other words, our personhood is shaped by our relationships and interactions in the world over a lifetime. Dementia slowly erodes the memory of these things, but not all at once or in a predictable pattern. It is common for people to experience varying degrees of memory and understanding over the progression of the disease, but retain a sense of self-awareness even in the later stages of decline.


A study published by the National Institutes of Health asserts that failure to recognize the continuing awareness of self and the human experience of the person in the middle and late stages (of dementia) can lead to task-oriented care and low expectations for therapeutic interventions. [ii] 


Looking more closely at personhood will help caregivers to more successfully anticipate a resident’s needs and reactions. If it is known that you have always been extremely modest, the staff should anticipate that you will not feel comfortable being naked in front of a stranger.  They can then work to identify a way to incorporate this knowledge into your care plan.


There have been many times in my experience when learning something pivotal about the resident opens a new school of thought on why he is doing what he is doing. The is the common example of the resident who is a night-wanderer, going door to door, disturbing other residents. When it is learned that he was a night watchman in an office building, his behavior is understood and can be accommodated.


If you are going to understand why someone is doing what they are doing, you have to know who you are looking at. The assessment process common to most long term care environments fails to look deeply enough at personhood. Expand that process to include questions about how the person feels, his perception on the current circumstance, how much he knows about his diagnosis, and his feelings about his declining memory and need for a supervised environment.


In a study on self-awareness, it was found that people with dementia who had supportive family or caregivers retained their personhood more successfully.[iii]  So, person-centered begins with a more thorough assessment of the person now that dementia has begun to chip away at the very core of his being.


Look closer. Look beyond the diagnosis and recent medical history to who he was and how he is coping with who he is now. Learn as much as you can to help him hold on to the last shreds of his personhood. If you can do that, you’ll be surprised at how simple it might be to figure out why someone is doing what he is doing.

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[i] Kitwood, T. Dementia Reconsidered: The Person Comes First; Open University Press: Buckingham, UK, 1997.
[ii] Tappen, R; Williams, C; Fishman, S; Touhy, T.; Persistence of Self in Advanced Alzheimer’s Disease, National Institutes of Health, Image J Nurs Sch. 1999; 31(2): 121–125.
[iii] MacRae, H. Managing Identity While Living with Alzheimer’s Disease. Qual. Health Res. 2010, 20, 293–305.

TODAY IS MY BIRTHDAY
By Barbara Speedling, Quality of Life Specialist ©2018


Today is my birthday.  For me, it is one of three days each year that I can look at as an opportunity for a fresh start, a new adventure, a time to reflect on what has been and what could be. Both New Year’s Eve and the start of school in the fall also hold the promise of what could be, but birthdays are personal in ways the other two occasions are not.


This is the time when I evaluate where I am in my life, as compared to where I thought – or dreamt - I would be. While I’m satisfied with my place in the world and the contributions I’ve made, there is still so much more I’d like to do, to see, and to experience.


I’d still like to learn to be a pastry chef, an interior designer, or a greeting card stylist.  I’d like to own a farm, live in a Manhattan penthouse, travel to exotic places, buy a boat, and spend money frivolously for as long as I can.


Do we ever stop dreaming about the things we’d like to do – someday, when there’s time, when you have the money, when you retire – or do we just stop dreaming, at some point?


In my work in long term care, I’m often asked to evaluate a resident who has withdrawn from social settings or who is declining personal care.  In many cases, the motivation to participate in life is missing. There is little to look forward to, to plan for, or to dream about. For the majority, the admission to the nursing home is seen as the end of the road.


For some, there is the promise of rehabilitation and a return to life as it was, yet little attention is paid to the person’s goals, beyond those that are physical. In these cases, however, the physical goals serve as the motivation to get out of bed and on a path to accomplishing the ultimate goal of returning home.


With no hope of a future, nothing to look forward to, there is a great potential for depression and grief, both of which rob a person of the energy and need to live another day. As I’ve come to recognize and understand this common thread in long term care, I’ve looked more closely at interventions designed to address the depression, to inspire new thinking of what might be, and to provide the type of consistent, person-centered motivation needed to sustain an improved perspective on life and the desire to move forward.


So, why don’t we ask residents about their dreams and aspirations as a crucial part of developing a therapeutic approach to their behavioral health needs? Keep in mind that behavioral health spans both the positive support of a healthy perspective on life and living, as well as interventions to address negative mood and behavioral issues.  As such, understanding what will motivate a resident to continue to look forward begins with a single question:


          “If you could do anything today, with your age, health, or other circumstances aside, what would it be and why?”

When I have asked this question, even when the resident has been impacted by an early dementia or other cognitive or emotional deficit, I have often been able to identify one thing that might engage and divert his attention away from the negative feelings he is experiencing. This has been true across a broad spectrum of ages, disabilities, and circumstances.


In situations where the resident is unable to be interviewed, understanding what life was like for him before his disability and observing reactions to social and environmental situations, a satisfying diversion can often be identified. Once attention is diverted toward more positive things, an elevation in mood and behavior is often the result. Falls and altercations often diminish, as well.


Having reviewed activity programs in many facilities over the past 30 years, I believe many programs fail to provide for the many interests and abilities of a diverse population. In most cases, programming is designed to entertain. Games, music, and movies dominate, with programs offering education, self-help, or community integration are in short supply.


Therapeutic activity is more than playing Bingo or tossing a ball. If done right, it can be the answer to the pervasive problem of lack of satisfaction. The lack of satisfaction, of quality of life, is what motivates much of the behavior I’m asked to address. Whether it be restlessness, wandering, calling out, aggression, or just a sour mood that is offensive to everyone, finding something positive to help influence a better level of satisfaction is the key to solving the problem.


In the end, I’ve learned that the simplest of interventions – talking – can open a whole new world of thinking on what causes someone to do what they do. Talking to them, talking with them, exposing them to conversation even when they are unable to speak, will all help to minimize the most common malady – loneliness.


Consider your own dreams and aspirations. If you were a resident, what would you want the nursing home to know about you and what you hope for now? Do you think you will ever stop dreaming about the future or what could be? I don’t believe we ever do.


Look deeper for what might soothe and satisfy.  It’s not about the food, it’s the dissatisfaction with having no choice. It’s not about the staff, it’s the misery of having to be cared for. It’s not because he doesn’t understand the rules, it’s because he doesn’t care if everyone else is as miserable as he is. It’s not because I want you to have to chase me, it’s because my disease prevents me from the ability to sit still.


There are answers.  You just have to step back and stop looking for clinical answers in favor of human answers. What would make someone feel better, body and spirit?

If you think your staff would benefit from education in this area, please contact me at Bspeedling@aol.com or 917-754-6282.