Making 2021 Better

Well, we are a full month in and where have we been? What have we accomplished in 2020 that will make 2021 better?

A little early to be asking this question? I don’t think so.

Everything we do has consequences, good or bad. The people we do or do not reach out to, the jobs we do or do not take, the ideas we follow through on or don’t. One thing that I heard repeatedly in the final two months of 2019 was, “We have not gotten anywhere in improving aging and dementia this year!” While I don’t agree with that statement fully, why was that? Sometimes red tape, funding, and paperwork hold us back, but in a day and age of LinkedIn, YouTube and other platforms to get information out into the world, we don’t have an excuse. There is a lot out of our control, but there is a lot we can control. What can we control?

Our interactions with others in our care.
The relationships we build professionally and personally.
The ideas we have that we can share with others to work to put into motion.
Our ability to see and listen.
Our programming (most of the time.)
How we support and educate our team.
How we seek out our own education.
There are many more! What would you add?

Knowing what is in our control we see many areas where we can improve the way we walk with others on their dementia journey. We see areas were we can improve ourselves and our teams that will have an important, local impact that may inspire other teams to follow your lead. We see ways a small moment with someone seeking connection with another human being can ripple through our community. We can control more than we think we can. So through the next 11 months left of 2020, let us take steps towards making 2021 better than today, filled with creativity, charity, kindness, compassion, and community. Let us use the public tools we have as brainstorming platforms, as a question and answer forums, as a way for us to make even a mustard seed size dent in the field.

Are you with me?

How do We Value Our Care Communities?

I did some scrolling recently in aging and care. I looked at the communities and what they were promoting. I looked at the education of the people working in these care communities. I found a problem. You know how I feel about “person-centered care” these days, how it has become nothing but a warm fuzzy badge people put on their marketing and sales pitches. Taking closer examination, we know this is not always the case, but still, it happens too often. Corporate is dictating what must happen for individuals whom they will never meet, and staff is providing programming without first becoming relational with the people that trust them with their care. In the few times, I have been able to have candid conversations about the state of care, I have walked away saddened and furious by the direction we are heading.

There are two areas I find alarming. The education required for staff when hired (and after being hired) and the building design ego.

A level of formal education achieved, does not equal one’s intelligence, talent, character, or ability to do great things. To reach a level of education is not a marker for anything, but a point in one’s journey through this life. So as you see others achieve what they have set out to accomplish in this life academically, remember education comes in two forms, formal and informal, and your actions with the purpose you carry within you are what is truly remarkable. Yet, lawyers, socials workers, MBAs are being hired over people with true experience and passion for working in elder care simply because of the letters behind their name. The education of an individual cannot do all the work.

Once hired, we rarely provide the education our staff truly seek in dementia, in creative engagement, in becoming relational with a wide group of individuals, in current and best practices. Why are our networking groups filled with the sales and marketing team, when it should be filled with our CNAs and Life Enrichment staff?

Without beautiful care partners working within the building, without a care model that is not about money, image, census, corporate demands, or marketing warm fuzzies, with an organization that puts the sales department ahead of the CNAs, Nurses, and Life Enrichment team, this is not a community anyone of us would want to live in. Yet, we comment on the feel of the building before talking about the quality of life. The beauty of the building you offer your residents and community cannot do all the work.

I am not naive enough to think that education, money, sales, and image can just be left at the dumpster. Money is needed to care for your community, to keep lights on, to hire the staff you need. With all of the “beds” filled and a waitlist, you have stability. These are not bad things, but what is, is the way we view and treat each element of care. So what can we do?

I wonder if the industry is paralyzed by fear and the judgment of what the community and industry will think of who they are as an organization and care community? I wonder if we fear to look like a stereotype or will be judged if we don’t have a chandelier in our entryway?

Any real and good change starts at the lowest level in my book, yet without good leaders at the top, the culture change will be painful and difficult. Most people that work in the care industry today are good people. They came to the position they hold wanting to help, to make a difference, they saw something within themselves that said, “you will be good at this.” And, some maybe even came to this job because they needed a job, but even then there was something that sparked within themselves when applying for the position. Yet, we cannot rely on passion and character alone. We must support the specific, narrow, dedicated continuing education and support to help each individual thrive, both staff and resident.

What are our actions steps?

Allowing for our CNA’s and Life Enrichment staff to network with others, to expand their education in creative engagement and dementia.

By finding ways to implement those programs and certifications we have earned so they are integrated into our care model.

Engaging family to participate in programs and meals, allow staff to share meals with residents. We know the power of breaking bread together, so let us find ways and times to make that happen.

Forget about the judgment of others! All areas of life need this statement. I know the State has its guidelines and we have rules to follow, but where can we play? Where can we drop the judgment of other care communities and aging professionals, and find the freedom to truly connect with the community we are seeking to cultivate?

Don’t hire because of a degree (I know you do) and place into balance the informal and formal education of an applicant. You can a Social Worker is not needed to lead a Life Enrichment team. Think about where that advanced degree truly is necessary, and allow passion and experience to fill in the rest.

#FREEFROMAGESIM – A Process of Transition and Freedom

I have been watching videos for LeadingAge’s #FREEFROMAGEISM. Sharing our stories of aging and ageism. The process of the old being replaced by the new, the time of transition and change. The complexities of aging in appearance and allowing it to happen. The process of allowing ourselves to no longer be “young.” As part of this #FREEFROMAGEISM, we have been encouraged to share our thoughts, experiences.

We see our obsession and discomfort with aging all around us, in the products we buy and their corresponding marketing campaigns, in the movies and TV shows we watch, in interviews and YouTube channels. I don’t think we are always afraid to grow old, but we are afraid to age. We are afraid of losing our youth. We want both the wisdom only time can provide and our young years (well, maybe not the years but the physicality of those years.) We can’t have both, nor should we want to. It is frequently said, “Growing old is the only option. The alternative is death.” We highlight the great freedom that comes with getting older, not caring with others think of us as much, not feeling the need to impress someone, yet, we envy those still in their teens and twenties. We have that light spirit of growing older, but we don’t want to look older, revealing the shallow parts of our world.

This shallowness informs our agist mentality that we call carry with us, got to battle with, and hopefully overcome. Agism happens across the lifespan. We are always too old or too young. Others judge us and our ability based on how many years since our birth, and not the life within those years. They see items in a medical chart and determine our ability. It happens all the time and people get away with it every day. We rarely acknowledge that this is a form of discrimination, be it for a job, a grad school application, or a volunteer position. Instead of seeking answers, labels are given based on our age and the perceived ability and life within that age. It knows no limits and reaches every person on this earth.

I have always (or so they say) looked younger than I am. Up until about a year or two ago, people still placed me in high school. I would roll my eyes then think, “I will thank them one day.” Am I feeding ageism with these thoughts? As my group of peers turned 30 this year, we are fed messages of, “Your youth is over, prepare for the decline.” and “You have not yet accomplished x, y, and z? You are almost 30!” While the group responds saying things such as, “Oh gosh I am 30!!!!” and “Time has run out! I am too old to do a, b, and c,” I found myself out of place with these responses. I realized I had no fear of turning 30, no fear of growing old, no fear of looking older. But, was I still putting agist pressures on myself? The few strands of grey on my head I have had since I was 5 years old, they don’t bother me. When I look in the mirror I still see the person I was 15 years ago. I don’t feel any older, but I do wish for those years of “youth” to come back, to change the way I did things, saw things, experienced life. These thoughts are part regret, part wishing I could live it again to see something new. What is stopping me from seeing something new these next 15 years? Is this thought from the external world, because it is not internal? For me, I never felt pressured to do anything from marriage, career or education. Any sense of urgency came from knowing my vocation and wanting to start the work God set before me. Yet, I still hear and see the messages (we all do) and I am not immune to the noise. In those thoughts, that I will one day thank all who still think I am much younger than I am, am I caving to those agist messages.

For those wanting to study and work in aging and dementia, we are discriminated against in an agist fashion and that too is a form of ageism. We are discouraged going into geriatrics and the many branches that come from working with that population, fear is instilled in perspective aging and dementia professionals, and individuals are cut from programs based on the population they want to serve. It is harming our ability to care for others, especially our elders who will soon outnumber those under the age of 18. Who will care for you when you grow old and need extra support and care if we do not change this perception soon? Who will be left to research cures for Alzheimer’s or other illnesses and trials facing us as we age, if we do not shift our perspectives soon?

What are your experiences of ageism, agist thoughts and comments?

Continuing the Work of Alzheimer’s Awareness Month 2019

Last Saturday may have ended 2019’s Alzheimer’s Awareness Month, but for us to make any true impact, we need to continue our attention and support throughout the year. As we make the transition from the hype of this past month, into the Christmas rounds of giving and visiting your local care communities, we likely have a collection of lists, graphs, charts, and quotes all aimed at guiding and educating us about dementia. How do we take this information and implement it? How do we make sure that these lists and charts don’t remain on the page, but inform each interaction?

We may have donated to our favorite dementia organization on Giving Tuesday, others may be taking their classes, scout troops, and children to sing, decorate, or visit those living with dementia during the Christmas season. This is a start to the implementation of what we have learned, but it needs to continue, it needs to grow.

The charts set a foundation.

Alzheimer’s is a degenerative brain disorder, NOT a normal part of aging, with more than 5.8 million Americans living with Alzheimer’s. This number is projected to triple by 2016. No one should be afraid to speak about Alzheimer’s disease. (AFA, 866-232-8484)

The 10 Signs of Alzheimer’s include memory loss that disrupts daily life, challenges in planning or solving problems, difficulty completing familiar tasks, confusion with time or place, trouble understanding visual images and special relationships, new problems with words in speaking or writing, misplacing things and losing the ability to retrace steps, decreased or poor judgement, withdraw from social activities, changes I mood and personality. (Alzheimer’s Association, 800-272-3900)

What else can we do?

Continue to learn and grow in knowledge and understanding. This can be done formally or informally. Find YouTube videos, a podcast, a book, someone living with dementia who puts out content to follow.
Volunteer or consider a career in aging and dementia that fits the specific gifts you have been given.
Begin a pen-pal friendship with an individual (living with dementia or a care partner) showing them your support, friendship, and let them know they are not forgotten.
Continue to donate to organizations in your area.
Become a Purple Angel Ambassador or consider helping bring awareness to dementia (and its many types) to your local businesses and community partners.
Encourage your faith communities to form a ministry for care partners and those living with dementia.

What else can you think of to add to this list? What are you doing to continue the spirit of November’s Alzheimer’s Awareness month throughout the year?

Aging and the NADTA Conference

A conversation has started. Finally!

This past week, I attended the North American Drama Therapy Association’s annual conference as a presenter. It was a groundbreaking year with an entire afternoon of workshops and discussions revolving around aging. In a profession that has intentionally or unintentionally discriminated against working with this population, this is a massive step forward. For almost three hours we sat down and had a conversation, looking at the past, the present, and the future.

The past can be summed up as bleak, with few individuals working in the area. The work they did, and are continuing to do, however, should not be dismissed. The work is good, needed, supportive, but not nearly enough. When asking for books and research in the area of aging and drama therapy, only one book is ever mentioned. This book, Waiting at the Gate, while a starting point, is decades old, and outdated. I see a field that has become complacent. This profession needs a shakeup. It needs to leave egos behind, and spotlight populations must fall away in order to make way for Drama Therapy to live in the fullness of its ability and purpose.

The present is not much better than the past, but with the work of some visionary people, it is not quite as bleak. There still is great discrimination and academic snubs. The updated media packet was disappointing, to say the least. Much of the work rests in the place of a life enrichment specialist and manager, doing work that anyone else could do. Aging and dementia are not spotlight populations and bring comments such as, “Isn’t that work better suited for music and dance therapy?” Nadya Trytan, Kari Rogenski, and Karen Knappenberger have set out to change this view with their current research, that I hope produces a book. And, with this conference, a conversation has started. Each workshop was well attended and engaging. So, what’s next? There is great hope!

Each individual in the field of drama therapy needs to get behind education, support, and research, if not working directly, becoming indirectly supportive of such work. In the past, I have spoken about this, but we need to continue, recognizing our own fears, and seeing what causes us to push this population away. We need our educators to not discriminate against prospective students because they want to work with this population. And, we need to listen to those we serve. They are seeking the specific support a drama therapist can offer, may we step into that space to answer the call.

We need to continue the current work, but recognize the great skills and knowledge acquired during training, seeing the need for support in mental health and healing, not just in pursuit of joy and comfort. Each creative arts therapist must pick up where LETs leave off, in a way only a creative arts therapist can. Don’t rest in the past, run towards the unknown future.

In the days leading up to the conference, I couldn’t help but think of all that can be done in the area of drama therapy and dementia, as well as the performing arts and dementia. The statement that kept running through my mind that I shared at the conference was this, our current society puts out the message of, “I am repulsed by your weakness! I will medicate you and leave.” But we need to transform this statement in our work practices, in our hiring, in our acceptance of new students and further development of academic programs, and in our hearts to say, “I am NOT repulsed by your weakness and trials. I will stay and help you live the life you were created to live.” Drama Therapists (and all aging and health professionals) can transform our current state, but each person must use the specific talents, skills, and training they have to do so. We can do this if we are bold enough to trek through the storm. The past and present are messy and bleak, the future is filled with trials and unknowns. Hope persists so long as we listen to those we seek to serve, asking them to be our guides, supporting them through our creativity, joy, love, and community.

This conversation must continue, to look at specifics, engage in new ways of thinking about the profession, and to call out any BS in the education and training of new and established drama therapists.

Are you a drama therapist? What are your thoughts?

Helping People Retire? Ageism? Moving Forward

This statistic came across my Twitter feed again today, “by 2035, older adults will outnumber children under the age of 18 across the country.” When an older adult is generally considered to be anyone over the age of 65, we have a lot of work to do to better our society and our world. This asks us to deeply consider if we have the responsibility to support each other as we enter into becoming care partners for loved ones, and transition into retirement. It requires us to think long and hard about ageism and how our communities are built and function.

Do we have a responsibility to help our employees and fellow neighbors age? Do we have a responsibility to support those looking to enter into an aging and dementia profession? To support those already working? I think so, though the answer is as layered and complex as the question.

We live in a society where we are defined first by our profession and second by our hobbies, family life, and interests. This obstacle is only growing and gaining intensity in many circles. While our careers and the professional titles we hold are important to us, they are not the sum of who we are, our worth. There comes a point when for, whatever reason, we need to leave our jobs, retirement, family obligations, our health. What do we do next? Some feel shame, lost, or guilty, while others rejoice, feel great freedom, or maybe feel neutral about the whole thing. So, what can our places of employment and our society do to improve how we age and transition from active professionals into continuing one’s vocation outside the traditional form of employment? In addition to saving money and taking care of one’s health, we all must also look at our personal lives and know what brings us joy, our priorities, what sustains us emotionally, socially, spiritually, and intellectually.

When looking at agism we need to understand not only what it is, but also its many forms. We see and talk about the discrimination that happens along the spectrum, from those that are “too young” to those that are “old,” but do we ever consider the age-related discrimination that happens when someone wants to work with older adults, but is not admitted into the school because it is not one of the “it” populations for that program. Do we talk about the age-related discrimination that occurs when we separate the population into “abled-bodied” and those with “mental or physical limitations?” These points need to make it into our conversations.

Do the staff members within our care communities and in-home care organizations have a responsibility to help individuals who have recently retired or are transitioning into needing the next level of care? Making sure they are supported in the fullness of life? Do they have the responsibility of understanding and helping maintain the life each individual has created for themselves beyond their professional life? I think, yet again, yes.

We are holding on for dear life to the value of our professional selves, and it is not serving us well. How do we let go? How do we allow ourselves to be the sum of our professional and personal selves at every age?

This is not meant to hold the answers, in fact it may raise more questions, but we must talk about this and find ways to take action. Comment below what you think. I want to hear from you.

Hope and Healing

One of our strongest bonds is that we are all seeking hope and healing. We all want to live fully, with the strength of family, friends, and community around us, while exploring the depth and richness of this life.

In April, I facilitated a dementia and theatre workshop at the NYU Theatre and Health Forum. While attending this forum I witnessed this very desire for hope and healing. I saw the great wedge that gets in our way of living in hope and health, disappointed to hear time and time again how our elders are “able-bodied” or they are “declining bodies.” I cannot help but wonder, in a field that is striving to become innovators in care, why we are becoming the very roadblock we are trying to dismantle. Why do we silo those we seek to serve? Are we, in trying to “heal,” encouraging “the other” to occur instead? What is the role of the theatre artist, the drama therapist, and the theatre educator in transforming this thought process? What would happen if we worked to blend academia, medicine, and creativity, with human dignity, working in one true visionary partnership? There is a need for worlds to mesh, and an offering of an invitation into beautiful creativity if there is hope for healing. How do we blend head and heart? Medicine, academics, and human desire? Where is the line between helpful and demeaning? If we are not acting as visionaries are we complacent? How does our faith play a role in this hope and healing? How are we reinforcing this negative idea of aging by the way we approach our work?

So, what really is the role of the arts in aging? How can theatre truly enter the landscape of our health? Studies have shown the importance of creative engagement, but how can we take it one step further to dismantle the idea of the “able-bodied” and “other?” If we are to use theatre as a way to transform our health and our community, then maybe we need to transform ourselves and take a step away from ego, high art/low art, the political, and our perceived ideas of what aging is, and work instead from the point of beauty and humanity. Theatre is a great educator, and working in the development of theatre even more so. The process of creation and performing a story not only can help us understand aging and dementia, but can also be used to help children in our schools, doctors in our hospitals, and family care partners break down stigmas and prepare our communities for better encounters with individuals living with dementia. In this creation process, we come together to research, learn, play and explore the topic, develop a show, and perform it for the community. A key element to making all of this work though is the inclusion of those with dementia, of all different types and stories. It is from them that we will learn the boundary line, the place where helpful turns into demeaning, where good turns into harm, where head separates from heart.

When working in this field, it is those with dementia that will be our true guides and experts. We can look to the work of Anne Basting and Dr. Bill Thomas to reinforce the importance of theatre and storytelling. If we long to create a better world for us as we age, solving the deep-rooted trials of our care communities and communities at large, we need to better understand, explore, and play with the very real experiences of our neighbors currently living with dementia or in our care communities. It has saddened me that aging, while “trending” is still seen as a “less than” population, divided into two groups based on their perceived ability. It is a population less popular to study and work with giving way to other “spotlight” populations. I believe strongly that theatre is THE key to shifting the stigma of aging and dementia. Instead of a lecture or a one-hour training workshop, if we use theatre, we can show others (and ourselves) how to transform the field. We can become the visionaries that play with these difficult topics. We can show our care partners how to enter the world of aging and dementia, therefore transforming the approaches needed to no longer be complacent, easing stigmas, and no longer fearing our own aging and death.

The In-Between

“You have personality, Honey. That is so important in a woman!” -Mary R.

These words were repeated to me each day by a woman I once worked with, and for, in an assisted living community in North East Wisconsin. She was vibrant, she was honest, and she gave us a new way to look at aging. She was not 108 years old and still living strong, or a 90-year-old marathon runner. She also did not live as if life was over because she was “old.” She showed us what it meant to live well despite needing a wheelchair and living in an assisted living community. She found ways to love life, to bring joy to each moment. She found ways to give to others even if the gift she gave was only a smile and a “hello.” She proved to us that you don’t need to extraordinary to live well at an older age. Had her story been projected into mass media, our view of aging would have shifted towards the positive, if only by a few marker points.

For all of us, exists the ups and downs of life. We have moments when we ache or feel old. We have moments when life feels like it is bursting open for us. We have moments when life is just…well…life, with the mundane tasks and the exhaustion of our responsibilities. For those of us under a certain age, society is still on our side telling us we have our entire lives in front of us, or that we still have many great years to live. The world is telling us we still have a reason to get out of bed in the morning, to have hope, and to live our lives. This allows us to combat the downturns and sadness, but what if we didn’t have that cheer team? How would we react if the world is saying to us directly or indirectly that, “Your best days are behind you” adding to our bad days, feelings of hopelessness? No wonder depression rates climb, people get “cranky,” and overall health is not all that it could be for the older population. The way our world reacts and interacts with the elders of our community should not be negative, but positive, allowing each person to flourish in ways that are right for them. Ageism clouds our relationships and our thinking.

Even with the upswing and support rallying behind this subject we still are stuck making little, if any, changes in our communities. We have dementia friendly communities, and advocates for dementia and aging who are easy to search and learn from, yet our media and our actions show no sign of this upswing. We praise the 90-year-old who just sold their first painting and the 100-year-old figure skater, but we tell the 93-year-old who is bound to a wheelchair in a skilled care community that they are a burden and don’t need to live any longer, or we make invisible the 89-year-old down the street and wonder why on earth they are still living at home. We think everyone over a certain age is no longer capable of living in anything but an assisted or skilled care community and that they all have dementia. We criticise the “old” then moments later share that viral social media post of a 98-year-old who still swims laps at the local pool. There is something between the youth and the extraordinary older adult, it is the in-between, who regardless of where they are living and what their chart looks like still desire to live a full and joyful life, seeking friendships and connection. We should work to help fulfill those desires.

All of us are guilty of ageism. It is not reserved for the elders of our society, and I, in fact, have fallen prey to it on the younger side more times than I can count but life is set up to have an easier time overcoming younger ageism.

I have been thinking a lot about this topic after I caught myself falling into its trap. I started to panic when I took some time to look at what I would like to accomplish personally and professionally in the coming year. I saw wasted time in my life because the checkpoints I wanted to hit in this past decade have gone all but almost untouched. I, for the first time, felt the pressure of my 20s and that time was running out. What does this say about my future if at 29 I felt the time was up? What about when I am 39 or 69 or 99? Do the years between now and then not account for anything? Can they not be filled with joy, accomplishments, family, friends, experiences, and even sadness? I jumped from being on the receiving end of, “You are too young and inexperienced” to “Holy crap life is over.” From the external comments to the internal thoughts that were put into place by our society and what they value. This was not what I truly believed about age and life. After I backed away from this dark hole, I felt funny for having actively fallen into an ageist mindset when I preach the importance of breaking down those harmful thoughts. But we are all human, and no one is immune to the effects our society’s persuasion. Therefore we must be kind, willing to support one another, and willing to seek to weed out those ageist thoughts and comments. Not all of us are called to create a commercially successful project that could change the view of aging in this country, but all of us can work internally, in our families, and in our communities by seeking connection with those of all ages, by listening and seeing each individual.

Mary shared with us what it can look like to be “average” in ability yet still light up the lives of others. She showed us through her fun jewelry, her love of colorful glasses, and her giving spirit what it means to age with grace, what it means to age well. She showed us we don’t need to be in a nightly newsreel or viral social media post to have value and still contribute to this life we are all living. In doing so those that worked with her never saw her age, what she could or could not do, they saw her smile, her eyes, they saw Mary. She helped move us closer toward internalizing a positive view of what it means to age. After all, we are all aging.

To Change the Landscape

I have always been interested in the connection between emotional memory and a theatre experience. Why can it at times tap into a part of oneself more than music? Yes, I dared to share that, MORE than music. My parents first took me to the theatre when I was 3 years old to see Rodgers and Hammerstein’s Cinderella. By all logical means, I should not remember this experience the way that I do, but it tapped into my emotional memory that was then built upon by every experience that occurred after that moment. Now you could argue that music played a large part in this as I saw mostly musicals, but I don’t think it was the music alone that did it or the rhythmic dance of dialogue. I saw my first movie in the theater I was 4, one year older, yet I have no memory of the experience, and music was involved as it was Disney’s Aladdin. Somehow A Whole New World didn’t stick, by In My Own Little Corner did. It was this particular form of storytelling, theatre, that found a way into my emotional memory.
As my interest and work in dementia progress, I become more curious about how theatre and dementia can work together. That same emotional memory that pushes forward my experience when I was 3, is that same emotional memory that helps us connect with loved ones with dementia, helps us become relational with them, that same memory that is untouched by the disease. All of the arts have the potential to use emotional memory to help someone living with dementia live well, and music and dance are getting a lot of attention right now in the field for this very reason (and rightfully so!) however, how can we best use theatre and theatre storytelling techniques to tap into the emotional memory to create valuable life enrichment programming? How can we use it to create an educational tool for children to teach them about dementia? How can we use it to teach others to become relational with dementia, and to not fear dementia which further engrains the stigma and doom and gloom narrative that has existed for decades?
As I have stated before, the arts have the greatest potential to shift the negative view of dementia. We listen to stories, to music, and view art, and while theatre is maybe not the strongest (read: most popular) player in the bunch it is one of the most versatile. Through the creation, exploration, and participation (passively or actively) in theatre, we can create training and workshops that can have a long-lasting impact on caregivers, children, and students who will potentially enter the field of aging. By engaging in a wide array of storytelling approaches we can become relational with those living with dementia, changing the landscape. With arts-based research and a larger emphasis on creative engagement and artful aging, I hope to see more imaginative processes blossom in the field of aging and dementia, in how we care for, in how we educate, and in how we support those living with this disease.

A Shared Story

“Tell me and I forget. Teach me and I may remember. Involve me and I learn.” -Benjamin Franklin

This quote, which apparently has several variations when trying to research its exact origin, came across my Facebook feed this morning. When I read it, I thought it was a near perfect way to describe how we should approach memory care. Tell a person with dementia something, and they will often forget it, teach them something they may remember, but engage them, include them in the full process and they will learn and be filled with purpose and joy.

Each program I develop, each moment spent with an individual with dementia, I make sure that they are directing, I am simply facilitating. I work to make sure that a connection happens that is more than verbal. That we laugh or cry together. That we create and study together. That we connect emotionally. Many times, if I share with someone my name, they will forget it, sometimes because of dementia and sometimes not. If I share my name and the origin of my name they may, next time, remember my name or that my last name is German. But, if we sit and talk, learn about each other and find a common bond, things start to happen. Through that common bond, we may create a greeting or a phrase to say every time we see each other.

There was a woman who I was told, was having more bad days than good days and that she was a “challenge.” When I met her she was friendly and not the person I was warned I might visit. We talked for a while, learning about each other, and looking out the window as the April day slowly started to show signs of spring and the warmth of the sun poured through her window. Through our meandering conversation, I learned she loved poetry. I asked her who made the cut for her favorite poets, and the last name she said was, Robert Louis Stevenson. That name hit me and suddenly a memory came flooding back. I could hear my mom reading that poetry to me. I had tucked that memory back deep in the corners of my mind and our conversation caused those memories to come rushing back. The only one I could recall at that moment was My Shadow, or at least I could remember how it started. I shifted my body to face her, smiled, looked her in the eye and said, “I have a little shadow…” Her eyes lit up and she replied, “that comes in and out of me.” In that connection, we created what became our greeting until the day she died. That connection was a gift to both of us. We made a leap forward to become relational with each other, we learned about each other, we created, we explored how we might work together. We developed an emotional connection that would survive the bad days and pull us back together when we drifted apart.

In that moment she gave me the gift of remembering a piece of my past. That day I didn’t tell her my name, my title, or why I was there. I didn’t explain to her how our time would be spent. I involved her in conversation and invited her to become a partner in her care. I invited her and she accepted the invitation. Moments like this don’t always happen, and it doesn’t mean that every moment that follows will be easy, but it does mean that we acknowledge our shared story, our shared connection. That is why I continue to swim upstream in the current landscape of care, and I invite you to join me.