Appleton Flag Day Parade

This past Saturday was the 68th Annual Appleton Flag Day Parade. My parade as I would call it. You see, I was born on Flag Day, and it was a family tradition to walk down to the parade every year when I was younger. I have fond memories of this time. Every year I think about that part of my childhood as well as past birthdays. This experience and these memories would never show up on a survey or personal story request from a care community, nor would it be something, that unless I spoke of these memories often, would my family know. Yet, it is part of my story, my memories, my past.
Little things, like this connection to the Appleton Flag Day Parade, are what enrich the care we can provide, by filling in the image we have of who each individual is and the place they come from. It helps us become relational with each other on a deeper level and allows us to understand the bits and pieces or the “gibberish” as some would call it, that individuals with dementia may share as their verbal language is fading. Information such as, if the question is, “hamburger or hot dog?” The answer is always “brat.” Well, at least in my world. Or, I prefer marble cake and hate red velvet. In knowing these answers we can anticipate what an individual might want, need, or be remembered at moments throughout the year. This information goes beyond the schools one attended and degrees they earned or the town they grew up in, the music they love, and their vocation.
It impossible to know all the details of a person’s life. Impossible to know what questions to ask, and impossible to always know the right thing at the right time. What is possible is curiosity. To never be afraid to ask questions, to observe what causes joy to radiate through the individual, and what causes them to sink into themselves. It is possible to think that the answer may not always be what we expect, but it can be rich with information, helping us understand how to sit with another person. This is part of what it takes to become relational with those we care for, and yes it takes time, time we sometimes don’t think we have, but time well spent.

I may sound like I am dreaming and unrealistic at times, but sometimes that is what it takes to be crazy enough to think we can improve and expand the care we offer.

 

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.

Creative Arts Therapist on Your Dementia Care Team?

On a Tuesday afternoon, I was going around the halls of an assisted living community inviting people to a program I was about to lead. There was a gentleman there who I always looked forward to saying hi to, knowing quite frequently he would turn down my invitation but enjoyed a brief visit. On this particular afternoon, as I knocked on his door and saw him sitting in his chair, I could see he was waking up from a nap. He looked distressed as I greeted him. The world I walked into that afternoon was that of a battlefield. This man, who had dementia, was reliving his time at war. I could see the trauma in his eyes, the fear in his hands.

At a jewelry store in town, I met a woman whose mother had dementia. Once she learned that I worked with this population she shared moments when her mom would go off into these worlds and she didn’t know what to do. She learned not to fight her mother, but she no longer felt she could connect with her mom whom she loved deeply. She could feel their lives separating.

While leaving a skilled care community I stopped to talk with a family member of a resident who recently passed away after living with dementia for several years. She shared with me no longer knew who she was and struggled to see life without spending each day visiting mom. She feared what daily life would become and the impact this would have on her relationships.

These are common stories one might hear when living with dementia.

We all possess the ability to enter into the world of someone with dementia. We all are able to sit and listen to the stories we share with each other. We all are capable of walking with another person through their struggles. This takes no special skill, no extra training, no letters behind our name. But, what would the impact be like if we invited someone with a little extra training and skills into the picture? What if we invited a Creative Arts Therapist to take a seat on our care team, joining the geriatricians, general practice doctors, elder law attorneys, financial advisors, social workers, pharmacists, nurses, priests or other religious, neurologists, and a selection of family members?

This week is Creative Arts Therapies week. It is a week where all of the fields within the Creative Art Therapies take extra time to promote the work they do in our community and share with us the role they might play in our lives. This includes Music Therapists, Art Therapists, Drama Therapists, Dance/Movement Therapists. They are individuals with special training to combine the already known power of the arts with a skillfully directed therapeutic practice. Their current role in dementia care is often that of Glorified Life Enrichment Specialist, and that may be at times the role they play, but it can be greater than that. They can sit with those who might be reliving a trauma, are struggling with the loss of a husband or their home, a diagnosis. They can support the amazing artist that come into our communities to lead programs based on the visual, performing and written arts. They can show us how to enter the world of our loved ones with dementia. They can aid us in healing during and after our dementia journey. And, they can be the bridge between the medical and non-medical side of caregiving.

Each field within the creative arts therapies can play a special role in our care, for we each have our own connection to one specific art form over another. They can partner with artists, physical therapists, nurses, and doctors to help increase the quality of care and daily living. Frequently I hear concerns about inviting arts therapist into the picture, they say they already have artist providing art therapy yet these individuals frequently are not art therapists, but an artist using the arts in a therapeutic way. (There is a difference that would be a conversation for another time.) Or they feel that the world the of our care communities is already too medicalized and having a creative arts therapist involved would be adding to the medical world. While I agree that we don’t need a creative arts therapist to be able to benefit from the arts and that our care communities lean too far into the medical realm there is still a seat at the table for these specific fields. What a creative arts therapist provides is not more of the same, but something that can partner with programs and with individuals that might need more than the basic elements of the arts. They can add a depth to the care provided. A creative arts therapist can help the families learn how to communicate and transition into this new chapter of the relationship with their loved one, and, once the time has come, help them heal and rediscover their own life once the role of caregiver has been taken away. They can sit with our care community staff and help them navigate their job and minimize the burnout and depression that comes from working with loss day in and day out.

Use the arts with your loved one and for yourself. Find moments of joy, creativity, and satisfaction and growth through the arts, then I invite you to think about the creative arts therapies. Consider opening up a spot on the care team for a Creative Arts Therapist both for your loved one and for yourself. You might be amazed at how they can help you during this time and how we have been limiting the impact they can have on those living with dementia. What has been shared above is just a peek into what is possible.

To learn more about the Creative Arts Therapies and to find a Creative Arts Therapist in your area (credentials to look for):

Drama Therapy   (RDT or RDT-BCT)

Music Therapy  (MT-BC)

Art Therapy   (ATR or ATR-BC)

Dance Therapy    (R-DMT-BC-DMT)

 

 

A Bluetiful Life Continued

Allison Lazicky from Tom-Notch Teams (the same Allison I did a post for in January about Life is Bluetiful) recently had me on her podcast, Bluetiful…Celebrating Kindness Leaders, produced by the Whole Care Network. It was a first for me, and hopefully the first of many. This podcast is, as the title informs, about Kindness Leaders. What is a Kindness Leader? Allison, through her conversations, answers that question and shows us that they are the very people we spend our day with at work, at home, and in our community. They are the individuals that take their triumphs and trials and use them as a way to transform how they care for others, and by doing so, give us all examples of how to better live in community with each other. Each person shares how they find the bluetiful in everyday life.

During our episode, I speak about TimeSlips and how it has become a launching point to further creativity and relationship development. (I will allow you to listen to the episode to learn more. Follow up questions are encouraged.)

After replaying what was said in my mind a few times, I walked away from this experience wondering, how am I a Kindness Leader? This is not something I label myself as or a role I thought I played. I found myself asking, what is the full depth and width of this role mean to me and the people in my life? What I came up with was this, I see it as another form of being a Beautiful Soul. A beautiful (or bluetiful) soul is one who has gone through the deep trials of life and has come out filled with a light and a spirit far beyond previously imaginable. One that can help guide and inspire others. One that can support and stand with those they love and care for, encouraging beauty and joy, and willing the good of all those they encounter. While I don’t know if I would label myself as a beautiful soul, I would accept the role of Kindness Leader. I have undeniably lived through many things that have hopefully transformed me into becoming a better care partner, a more creative care partner, and someone people know they can come to during triumphs and trials. In my Bluetiful blog post for Allison, and again mentioned in our conversation, I talk about how life is Bluetiful when we are seen and heard for who we truly are and want to become. Individuals that are capable of seeing and hearing this are Kindness Leaders. In my life I have had many kindness leaders guiding me along, standing next to me. Allison is one of them. Thank you, Allison! They have been teachers, parents and grandparents, great aunts and uncles, my brother, classmates, therapists, doctors, fellow employees, peers, church leaders, and dementia care pioneers.

When relating Kindness Leaders to dementia, in order for us to transform the way we think about, look at, and care for those who have dementia we need Kindness Leaders filling positions at every level of care and support. We need the CEOs of our care communities and companies to be Kindness Leaders. We need our charge nurses, care admissions team, medical staff, cleaning staff, activities teams, cooks, and building architects and designers to all be Kindness Leaders. We need individuals who have the wisdom and passion to transform our current care system by having the courage to ask, “What is our ideal care community? What is preventing us from reaching that ideal? What can we do to at least take a step towards that ideal care community?” Kindness Leaders are dreamers and doers. They are individuals who have a better view of the way we care for others than what is currently being exercised. It does not take extensive training or a lot of money. It simply takes a human being who wants the best for fellow human beings.

Thank you, Allison, for having me on your podcast.

 

To learn more about this podcast and Allison’s work visit the following links:

Top-Notch Teams: https://www.top-notchteams.com

Whole Care Network: https://www.thewholecarenetwork.com

My Blog Post: https://bonaememoriae.blog/2018/01/06/a-bluetiful-life/

My Podcast Episode, Meaningful Life Enrichment in Care Communities Using the Arts:  https://www.spreaker.com/user/wholecarenetwork/meaningful-life-enrichment-in-care-commu

Changing Our Negative View

“If you are primed with negative attitudes about aging it turns out it has an impact on your health and well-being, on your risk of developing dementia, the first level of impact is on what you believe is possible.” -Dr. Bill Thomas

This was a quote from a Facebook Live session that happened a few weeks ago. Dr. Bill Thomas is, as he puts it, “the only living geriatrician on the internet” (which, side note is scary! We need more than 5,000 geriatricians in this country, and that is about how many we have) and he is a wonderful resource for us all. He got me thinking, how can we address this in a productive and impactful way? Of course, my mind went directly to the arts. Through art, we can transform the negative priming into a positive outlook. Through the way we tell stories, paint a picture, cast a play, and accept individuals into our orchestras, we can change the way our communities look at aging. By having those who are “old” participate in the arts and improving the way they are portrayed, we start a dialogue. By creating intergenerational creative projects we can experience first hand the joy, life, and meaning that can occur at all stages of life. If we start to write stories that are more than doom and gloom, we can lift the fear of aging. If we start to write stories that show life and not “living death,” we can see that joy that can be in each breath of life. If we start to write stories that don’t mock but show a full and authentic life, we start to see the reality of life’s progression.

We are starting to see a shift in this portrayal, if only at the moment just a glimmer. If you saw the new Disney movie, Coco that won 2 Academy Awards this past Sunday you might see what I am getting at. Instead of showing aging as something to mock or fear, they showed a beautiful connection between generations, and a moment where music helped connect a young boy to his great-great-grandmother in a powerful way. We need more of this in our movies, books, plays, TV shows, and artwork. This then must trickle down into our media, the news stations, the podcasts, then into our schools, community organizations, and importantly, into our own homes. We sometimes underestimate the power of what we see and hear as we listen to music, watch a movie, or listen to a news program has on how we look at and think about life.

Art can change the perspective, and encourage a change in dialogue, the language we use, and the portrayal of what it truly means to get older. It cannot do it alone though, I will be bold to say we need to also get rid of euthanasia, regardless of what we are telling ourselves, it is not a choice we are meant to have. We never know what we might be robbing ourselves of, or our communities if we support and participate in this act of murder/suicide. You all know I speak form the Catholic lens. So you had to know that this was coming. I do not abandon my faith when I enter into care, my job, my community, or when I leave the church. It is with me always. This may be polarizing, but it is an example of the boldness we need in how we address aging and care, and value of human life.

This post took a turn I didn’t plan on, but we cannot enjoy the light if we avoid the dark. Thank you for courageously reading this post with an open mind and heart. Art can change the negative priming we have about aging. Art can bring light to the darkness of aging. Art can inspire us to find joy. Art can change the way we think, but without the support of difficult moments, it remains unsupported. Therefore, we must be bold, dynamic, and engage in the community on the topic of aging.

Art Takes Us from “What” to “Who”

There is a question, a seemingly harmless question, that haunts us in childhood, at the start of young adulthood, and at the end of life, “What do you want to be when you grow up?” As an adult, I still get asked this question, and I have found that with older adults it is a question of, “What were you?” This question has never sat well with me, for reasons I never chose to explore. It is a damaging question and one that should be transformed into, “Who do you want to become?” Our careers, our educational endeavors, only one small part of what makes up our lives. It is fleeting, while our values, beliefs, character, and interests are carried with us throughout our life.
It is more the topic of “what” that is a problem than the question itself. As kids we have answers, often times great and big answers to this question. We want to be doctors, artists, lawyers, firemen, construction workers, businessmen. The list is as endless as the dreams we hold. When we are young adults that question of “what” starts to feel like pressure, we have to select a major in college or decide if we are to go to college, into the army, attend a vocational school, or directly into the workforce. As we graduate and move forward into a career we have to balance the dreams we have and the not yet/maybe not of our reality. We may know where we are going, or we may not. We may know what we are doing, or we may not. We may have the golden ticket to our dream job or a door slammed into our face. The question through all of this remains, “What do you do?” This word, this question comes back when we are older, retired, when asked, “What were you?” and “What did you do for a living?”
What. What. What. What. Can we erase that word and replace it with “Who” and ask, “Who are you?” and “Who do you want to become?” For as long as we have breathe, we are becoming. The question of “who” looks at the entirety of a person, it shifts that value of a person from how they make/made their money, to how they live their life. If we are to truly connect with individuals, dementia or not, we need to get into the deep waters of a person’s life. To get behind the “what” of a life, and ask the “who” and “why” of life. I heard in a recent training, “Every time a person has a diagnosis of one form of dementia or another, it is like a library is burning down.” By asking the question of “what” we never are able to explore the books in that library. We are never able to learn from, be inspired by, or be fully connected with them if we fixate not the “what.”
How do we transform the “what” into a “who” when language and memory are slipping? Easy, through the arts and creativity. By playing music, engaging in storytelling, through art explorations and making, by asking, as Anne Basting often encourages, beautiful questions, we push aside the obstacles and reach each person on a deeper level. And in doing so, not only do we become more relational, but we also bring joy and purpose into our relationships and each other’s lives. We should engage in art, engage in creativity, and engage in asking the questions of, “who are you?” and “who do you want to become?” Not just in our encounters with dementia, but also with their caregivers, family members, and with everyone we encounter. Our children should be asked, “Who do you want to become?” Our college students the same question. Our recent graduates, our unemployed, our staff, our recent retirees, and our grandparents. Who do you want to become today? Tomorrow? For the rest of your moments here on earth? Be it through the creation and absorbing of the arts and creativity, or through asking the question.