For A Time Such As This

We were created for a time such as this! In our ever-changing world, we were created with this moment as part of our narrative. As the Dementia Letters Project community, now is the time for which we will thrive together. Now is the time when you can share with younger generations the beauty of your strength, your joy, your hope, and the stories of your life.

The Dementia Letters Project was created for a time such as this! It was created as a way to share something we felt compelled to share about our dementia journey, for ourselves, for dementia, for our families, for our community. During this time I have been sending out my own letters to family, friends, and to residents in care communities, to share a moment of light in the darkness. 

As artists and storytellers, we were created for a time such as this! We were created to create and this moment has inspired or has provided us with the time, to create what our heart has longed to put out into the world. Some of us are creating new things each day, each hour, some of us are dreaming of the art we would like to create but have yet to open our ArtBin. No matter where you are, you are right where you need to be, doing what you need to do. Sometimes simply daydreaming about all the things that inspire us brings greater joy into our lives than actually creating something new. I trust that someday your art will make it out and on to your canvas, paper, or through your fingers and onto the keys. 

We were created for a time such as this! No, this is not a declaration of punishment, of despair, or ugliness. It is a declaration of the beauty of the human spirit to survive, thrive, and grow no matter what the world may look like at any given moment. This can be hard. It can be hard for everyone no matter what age or status in life one may be currently living. But, for the care partner, there is a special moment of prayer and gratitude that goes out to you! 

As family care partners your world has been thrown off, that routine you worked hard to develop and keep is no longer possible. Life has gone virtual and not all of us were equipped to make such a move. There are homes without a computer or iPad, or even an internet connection. Some families now have children home full-time needing assistance to attend school via online classes, with parents trying to care for their children and help their parents stay connected. Some programs don’t work via Zoom, which cannot simply flip the switch. Some programs can work, but we may be struggling to navigate the new world feeling disconnected, anxious, and out of sorts as we work a video call. And then there are our own emotions, worries, and health. We are navigating the dark unknown during a time such as this. 

As professional care partners, you are on the front lines, you are navigating a world that many of us may not understand. You are caring for our loved ones and community members, doing your best to make sure they don’t get sick while now trying to also figure out how to engage and create with the residents. You are meeting them, quite possibly, in true person-centered/relationship-centerd care form. You are learning new ways of becoming relational with those you serve. You are forced to become relational with the residents in ways beyond a task list, in ways beyond the role you initially signed up for when to took this job. And because of this, our care communities can make this moment a moment of transformation into a new way of living. Yet, this time is painful, dark, and scary. You may not see the growth, only the dwindling resources, the fear of getting sick yourself and bring it to your family at home or your residents. You fear a spread of illness, on top of the many other concerns you might have during a “normal” time. You are exploring a new world during a time such as this. 

We were created for a time such as this. We were created to grow, to transform, to love, and to care. We were created to create something new, be it in the fine arts, or in our community, or in the world of health care. Our differences have been magnified, but so has our collective humanity and goodness. We are walking the unknown journey towards an unknown end, but we are walking it together as human beings in communion with one another. While we see the true colors of many leaders and peers, disagreeing with or being encouraged by what we see, it is our task to respond with compassion, prayer, and understanding as they too are scared, struggling, and wondering if what they are doing is enough. Now is not the time to criticize, but to support and understand in a time such as this.

We were created for a time such as this, to dream and to hope, to find joy and to allow ourselves to mourn. The world has been through darker times, so we frequently hear, and that does not always help. But we have the strength of our human spirit, and we can see the light along this unknown journey, and together we will walk to support each other, to encourage each other, and to live during a time such as this. 

For You, Our Activity Professionals

We are 3 days into National Activity Professional week. It is not without our Activities and Life Enrichment staff that we could provide care and cultivate community to the best of our ability. The teams that lead everything from bingo to imaginative programming developed specifically for a group of individuals, are the front lines of our care communities. They are the individuals who are charged, not with a clinical or medical checklist, but a personal one and are called to become relational with our residents in a way that is unique and quite remarkable. This is the team that has the least amount of specialized training yet hold the greatest impact on the day to day life of the community. They become friends, companions, and family, and they hear the stories of each life with great compassion, curiosity, and at times sorrow. If you work for a care organization and do not know these individuals, get to know them and thank them. Call them up, drop a card in their office, or give them words of gratitude the next time you see them.

Activity professionals are more than the staff hired by anyone community, this group also includes those who are contracted to work with a community for any length of time or amount of sessions. These individuals are true salmon swimming upstream, seeking to provide programming, connections, and joy, all the while not having a team to support them, or the stability of a single community. These individuals are often paid anywhere between 60-90 days after the end of their service, making their dedication, a sacrificial one. They too deserve a, “Thank you.” Send them a card or an email. Call them up or text them. Hire them!

The work of activity professionals is more than what meets the eye. The programs they offer can transform our communities. The type and richness of each program seeks to improve the quality of life for everyone. triggering a chain of events that leads to a reduction in medical needs and staff burn out, saving the community time and money.

Often when we think of programming in our care communities we think of the standards, bingo, trivia, movies, music, games. We think of a few people coming out for an hour or two, or a large crowd gathering, seeking connections. But programming can be so much more than that. It can be creative, playful, childlike (NOT childish!), and it can be truly tailored to the specified personalities, interests, and hopes of the individuals we serve. No matter what programs are offered, there should be a much greater goal than filling a calendar or creating a feel-good environment for the sales and marketing team. Activity professionals are called to help reach the spirit of each person they are asked to serve, to help them continue to become, instead of solely reminiscing about who they were. They are called to see beyond (just as all care staff and community members), to see what each person can do, and encourage that movement to take place. They are expected to know how to work with individuals with dementia, move a wheelchair down the hall, support the resident in completing a task associated with the program, and understand the complexities of the multiple needs of the community. They are asked to pray for and with the residents, to hear their stories, to support them emotionally. They do all of this with little support, continued education, and recognition. They do this in part-time roles without benefits, a small hourly wage and little to no options for growth. They are remarkable people, with hearts larger than mosts. When they struggle, their struggles lie mostly in the abandonment of the administration of the care community. When they succeed their wins are taken by others. Often they are given the tools, but not supported in implementing those tools. They receive lip-service and are scolded when the medical team does not see the beauty of their role. Now, in saying this there are exceptions, but I have not met many.

To all Activity Professionals, working in great and beautiful ways, I say, THANK YOU! Keep going! We need you! You enrich the lives of others in ways you may never be able to understand. Keep dreaming, imagining, playing, envisioning a better way to fill your calendar and the time you spend with those you serve.

In a perfect world, your community would support you in attending conferences, training in the programs you see as beautiful additions to your portfolio of work, and would allow you to live fully in your role. They would value you the same way they value their highest administration professionals. To the communities that support this vision, THANK YOU! I hope you become the industry leaders, the change-makers, the new “normal.” But, since we don’t live in a perfect world, how can I support you?

One way that I am attempting to support you, is by offering on-line training in Creative Engagement and Dementia, to help you become better activities and life enrichment professionals working in our care communities (dementia or not.) Since this is a week when we finally recognize your great beauty and work, if you are an activity professional, let me know, and I will give you a code to take my online training at a discounted rate. Because this post is not meant to be a sales pitch (we all hate those, don’t we?) the details will be linked here. But I do hope you consider joining me. Let us change the story of the activity professional together!

Because I cannot say it enough, we cannot say it enough, THANK YOU!

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.

Seeking a Better Way

On a September morning, while attending a meeting with other aging and dementia professionals, I was having a conversation with someone from one of the local care communities. We talked about how she has to work within the guidelines corporate sets in place, from the way her staff dresses, to the programs they provide. I was saddened by what she was telling me, having experienced this before while I was still working as a Life Enrichment Specialist. Later, during the formal introductions, this individual went on to talk about how wonderful it is that her community is a person-centered community. A reaction happened inside me, how contradictory these two moments are, one talking about how corporate dictates the life for people they likely have never met, and the other, a care model that only works when each individual is involved. It was clearly a marketing tag line, not the model of the community. It makes me ask the question, where are we going with our care communities? Is this the experience we want our parents, grandparents, and even ourselves to enter into when we need care and support? Do we want our home to be like a hotel, with college styled brochure and sales pitches, but no longer living a life that feels to be ours? In a world where authenticity gets a spotlight, where “YOLO” is still a phrase we use and hear, how can we help others live in an authentic, beautiful, joyful way, that even until the last moment of breath causes the laugher and freedom of “YOLO?”

My grandmother’s doctor told my parents when my grandma was moving into a skilled care community that, “this is as good as it is going to get.” Over the last 10 years, I have come to see the truth of her statement, and my heart sinks. As a professional care partner and educator, I have made it my mission to help turn path we are heading down. Will you join me?

Not all care communities are simply a sales pitch, in search of great financial abundance. Some are doing beautiful things, and are living saints to those in their care and for their families. Some are visionaries, creatives, and disruptors in an industry in distress. We have work to do. Lots of work! Where do we start? We cannot change everything overnight, nor are the robotic marketing models going away anytime soon. We can start by loving those we care for, that is to say, will their good, and desire a life for them that is filled with awe, joy, hope, and connection. If we don’t desire life for another in that way, we cannot make an impact. We must do small things with great love. We can then open up our own heart to see what we believe, understand, and seek. It starts by seeing the person, then understand the fullness of their trials and triumphs, hopes and dreams. We must let go of ideas such as individuals with dementia cannot also be “active seniors” or ”abled-bodied?” Each person that I have encountered throughout my work has proven this idea inaccurate. Finally, we can seek out further education, both from those we serve and the research. A blend of the two is crucial, for one without the other only helps us standstill.

So, love, serve, understand, and work. Work for better care and support for those in need right now, for your family, for your future self. Escape the carousel of marketing tag lines, of robotic care, of complacency, and be free and bold to enter into creativity, joy, and hope. We must become visionaries. We must not only state and train, but implement and grow. If we can dream a better reality for our communities of care, we can take action steps towards making that dream a reality. It will take time, courage, commitment, and vision. Seek out those around you who dream of a better way of aging, partner together, and the impossible will become possible.

“At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done–then it is done and all the world wonders why it was not done centuries ago.”
― Frances Hodgson Burnett, The Secret Garden

The Kitchen is Missing!

The kitchen is missing!

What is is about the Kitchen? It pulls us in like a magnet, to cry, to dance, to talk, to come together as family, friends, and community. Growing up it is the place for homework, helping Mom decorate Christmas cookies while also trying to sneak one behind her back. It is the place you get shooed out of, being told to, “get out of my triangle!” while Mom and Dad are preparing dinner or a holiday meal. It is also the place you are welcomed into and shown how to cook and you learn about food and how to prepare a meal. It is the gathering place when company comes over. It is the place for dancing and games, cries and laughter so hard your stomach hurts. The kitchen, while it’s primary purpose is to prepare food, it ends up doing so much more than helping us nourish our bodies, it also nourishes and heals the soul.

I understand the health and safety concerns as to why there is not a kitchen for the residents of care communities, some only having a kitchenette type set up, but these kitchenettes are far from the warmth we have come to seek in our home. They are frequently cold, a place where it is more about what can’t be done than what can be done. It turns into the place where aids come to gather to listen to their own music or complain about the day and gossip. We have failed to make our care community kitchens/dining areas a place of home and failed to create a new space that does what our kitchens have done for us over the course of our lives. Can we change this? Can we find ways to work with the health and safety regulations while also restoring the warmth and nucleus of our home? Is there a way to start now?

Food and sharing a meal together in conversation and connection is a major part of becoming relational with one another and I wonder if we are going about it all wrong. It is clear that our community rooms are not the “new kitchen” in our care communities. I cannot go a day without hearing about how bad the food is or how the menu rarely serves what they are hungry for, yet we have food all the time. Programs revolve around serving food, but never the right kind. There are sweets or cheese and crackers. There are quick breads or party mixes. There are ice cream socials or fruit trays. But we are missing something because residents, visitors, and staff are still hungry. Do we think that serving food at a program helps build connection and replaces what the kitchen once became for us? Or are we missing something that often partners the food? The emotional memories of dishes and flavors, combined with real conversations and connection. The physical nourishment with the spiritual nourishment. Are we doing something to cultivate real community? Are we truly seeing those we serve each day? Are we listening?

How can we create a new kitchen, a place of warmth, connection, and nourishment?

A Swing Set

My brother recently purchased a new home and in the backyard, there is a single swing left by the previous owner. While at his house for a visit I thought of a resident I worked with several years ago who once said, “I wish there was a swing set for us old people. We want to swing too you know.” This was her reaction after seeing a group of children out for recess. There is something about sitting on a playground swing on a nice day that brings back memories from my own childhood, and for this woman, also memories of pushing her kids in the swing and teaching them how to get the swing to go higher and higher with each movement of their body. It brought back memories of enjoyment, friendships, motherhood, and summer.
We have often looked at play and aging, it is the broken record topic, that until we universally realize the depth of the human spirit we must revisit this conversation. The comment the woman made to a volunteer that day, I found, did more than tell us she wanted to swing on a swing-set, it was an expression of the desire to live a fuller life than the one currently supported. She was a resident of a care community that dedicated itself to those living with dementia and was becoming a leader in the industry, but they still missed the mark. They missed the active part of life and focused solely on the passive enjoyment gained from watching others. She wanted to play. She wanted to dance with the program facilitators. She wanted to live fully within the bounds of her current physical and mental limits and then see if she could stretch them. How can we, the caregivers and care team, help others stretch and play with the limits of their perceived capabilities? How can we stretch our own thinking and our own limits to see what we can do to better care for others? How can we build a swing set for those “old people?”

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.

 

An Introvert in a Care Community

This afternoon it was brought to mind how extroverted our care communities are by design. As an introvert, I have been able to recognize the different personalities of others I encounter and adjust to their needs, but not all recognize the differences or that a blanket statement about what the community’s needs might be, is an inaccurate approach.

As a former Life Enrichment Specialist who worked in several communities, this was one thing that always bothered me, and I worked to encourage the expansion of our offerings. It ultimately was more like trying to mold a block of stone instead of a ball of clay. We see the obsession our society has with Myers Briggs, the Enneagram and the many personally tests created for both meaningless fun and scientific research, but we don’t do anything about what they tell us. We obsessively take these test to find out that I am an INFJ, I think I was a 4, 2, 9, on my enneagram, I am more of an Jane Bennet more than an Elizabeth Bennet, and my “real” age is 56. None of this matters unless we know how to sift through this information, to understand what is fun and what is real, to understand how this information informs our interactions and needs. I am not a fan of these tests for that very reason. We take them, we see the results but it does not change things on the larger scale or long term. It becomes a crutch, an excuse to not truly get to take the time to know someone, yet we don’t know what that crutch is saying. It is much better to realize that we will come across many different types of personalities in care. This should encourage us to truly see, hear, and understand the person in front of us and decipher how we can best serve this individual without a personality label. With that said, we like to put people in columns, to label, and to organize because it makes life easier, maybe more predictable, and fills a desire for order in chaos.

Just as our educational system and our world at large are designed for the extrovert, so too are our care communities. Music can be loud, people come towards us and pick up our hands and move them around while we sit in the wheelchair and they dance. Games are played as large groups and at times get rowdy. Meals are served in a packed dining room. Funny hats are put on us and we are put in the spotlight. And we don’t speak up about any of this because we know your job is hard at times, that there are not enough staff on duty at times, and we don’t want to hurt your feelings. These activities and way of life can be great fun and pure life enrichment for those who thrive off of others and spending time in social environments. For the introverts, this is not fun, but draining, uncomfortable, maybe even brings feelings of embarrassment and feels demeaning. The individuals that are introvert may not participate in bingo, music programs, and may not often speak with others at dinner because they are drained, their needs for time in quiet, spent by themselves, are not met. Unfortunately, they are quickly labeled as problematic, uncooperative, or in weaker (poor) health than they really are because our care communities are designed for the extroverts amongst us to excel, thrive, and live.  They, in addition to being labeled, are frequently ignored by staff when making the rounds inviting the residents to programs, or they are thrown coloring pages and iPods, then it is recorded that staff provided art therapy, music therapy, and life enrichment to these individuals. In addition to this not being art or music therapy as it is formally developed, this is also not life enrichment. We cannot change our care system overnight, but we can change the lives of the introverts in our communities starting this moment.

How? Well, here are some ideas:

1. Get to know this person as an individual, not as a chart, as a label other staff have given them, or as the form, their family might have filled out upon moving into the community. DementiaRAW has a wonderful form call, My Soul Purpose, that can start this conversation. I have linked to their name. I also have one that I will upload soon.

2. Coloring pages and iPods are good, but make sure the person likes to color, likes listing to music and having headphones stuck in/on their ears.

3. If they like pets, make sure the community’s cat or dog comes for a visit. If a therapy dog comes with a volunteer, make sure they visit this person.

4. Schedule time for you, yourself, to visit, just you and that person. Or you can set it up for two or three residents that get along to sit with each other, talk, watch a movie, listen to music, play a game, do something they will enjoy together that is low key, calm, and re-energizing for introverted individuals.

5. Be okay with them sitting in their room or apartment and/or not talking to anyone at meal times.

6. Even if they turn you down every time, always invite them to each and every program. And if they do say, “Yes!” to joining you, allow them to determine the level of participation. Be okay with them sitting and watching all that is going on without active participation. Be okay if they don’t want to dance or sing along. Be okay if they leave early or come late. Don’t put them in the spotlight, allow them to walk into the spotlight.

7. Invite them to compose the thank you, birthday, and celebratory notes you might send to staff, residents, families, and volunteers.

8. Don’t be afraid to engage in conversation with them, but don’t be offended if they don’t participate the way you wish they would. Ask them questions, but be okay with one-word answers. Ask them if they need help, but be okay with being ignored. Follow their lead. Make sure they know that you care about who they are and are here if they need/want you.

9. If they appear to want to get involved and help, find ways for them to help out with something, from the typical folding of napkins to waiting to turn off the DVD player and TV after the community movie has ended. These are not the greatest examples, but listen to how they want to help and be apart of the community, then find ways that are safe for them to do so.

10. When you approach them, match how they interact with you. Don’t barge into their room, but knock, ask if you may enter, speak calmly, speak cheerfully (just not cheerleader cheerful!)

This list only scratches the surface and will need to be revised for each person you interact with, but if you can remember the following you will be successful in care.

Introverts gain their strength in the quiet solitude, in their time alone often cut off from the outside world. They lose energy by participating in large social programs and spending time with others (especially extroverts.) Don’t label them, but see them. Socializing is crucial to living a full, vibrant, healthy life but make sure that what you are offering does not simply fill a quota or put into action the research you have read, but is catered to the individual, who they are and what they truly need and seek.

Living in a care community is not easy. I have yet to meet someone that is there by choice but are there because of doctor’s orders, family decisions, or they feel it is best but not what they want. This can be difficult for anyone as the life you worked to create for yourself is stripped away. Each and everyone of us will sort through this process in unique ways and sometimes, for introverts, when in this situation our batteries simply die faster than they might otherwise so be patient, know we are not wanting to be rude, cold, snobs, ungrateful, or any of the other labels that get pinned to our name. We care about you and seek for you to care about us.

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

The Depth of a Life

Have we become complacent in care? In Life Enrichment? Have we thrown around term “Person-Centered Care” so much that it has lost meaning? Have we felt a lingering burnout and forget to become relational with the person we are caring for? Far too often when a new employee comes on board, they are giving a 2-minute briefing about a resident, then told to look at the board outside their door or at the possessions in their room in order to get to know a resident. This small segment of information does not show the life each individual has lived, yet it is relied on by care professionals and seen as enough knowledge to proved proper care. They believe that in taking in only this information they now know the person, have become relational with this person and can do their job successfully. It is time to reconsider this belief. We frequently feel that there are not enough hours in a day to learn more than what this picture shares, but how can we provide care without learning more?

When looking in a person’s room or the objects outside of their door, more often than not we see only what the family has selected, what they feel is important to share. It is another person’s narrative of the life of the individual sitting in front of us. The comments made by fellow co-workers is again, another person’s narrative. It can be cold, short, and sometimes inaccurate. Dementia or not, the person’s narrative of their own life is far more impactful and informative. When we look beyond this layer, we understand the deep, dynamic, beautiful life this person has lived and wishes to continue to live. Only when we use this information as a launching point towards becoming relational can we provide the best care and support possible. There is a major hurdle to becoming relational with a person with dementia, and it is not what you might think. It is not their memory or loss of language that makes it difficult. The biggest challenge is that frequently fellow staff warn their co-workers and volunteers about the residents, instead of inviting them to get to know each individual they will encounter. They become a care machine that erases the freedom of time to sit and talk or sit in silence with a resident. A life is more than a collection of things in a room. They are more than the chart at the nurse’s station. They are more than the warnings from fellow staff.  Can we really enter into a relationship when we have warnings and judgments about who this person might be? I was once told to watch out for a resident, for they will surely make me cry. That this person is nasty and cold. I have been warned about a resident who was labeled as a challenge and a disruptor, not worthy of engaging in conversation with under any circumstance. Do you want to know something? They become two of my favorite residents, and they impacted my life as much as I hope I impacted their lives. I frequently was the only person to speak with them other than for medical purposes. Their belongings and chart became human only at the moment when I was willing to enter into a relationship with these residents, allowing me to provide the programming and support they were seeking.

Life does not end, the individual’s interests, stories, and joys do not disappear when they move into a care community. Care communities in general lean too heavily on the chart, and a second “chart,” the possessions in the resident’s room. If that was our only knowledge, one would never know the struggles and triumphs in a person’s life that made them into the person we see before us. These individuals would remain a 2-dimensional task item on a list of to-dos.

The work of a care team, from the CNAs to the Life Enrichment team, to the doctors, is fast-paced. Many are often overworked, having limited time available to spend with each resident. They fear HIPPA and the Ethics boards and use it as an excuse to avoid becoming relational with a resident. (If you are working within your scope of practice, and are not sharing the information with others, you are okay.) It is the sad nature of health care. I must ask the question though, if you don’t take the time to become relational with the individual, to really get to know them, beyond a medical chart, beyond examining their belongings, can you really care for an individual properly? Do you simply prescribe medications and complete tasks that you masquerade as care? Do you see them as a burden because they will not play bingo, and then force coloring books on them so that you may fulfill your team’s engagement quota? Or, do you care for the person at this moment, in this moment, and work to improve their life? How can we make the time to SEE the person, to become relational, to provide care that is directed by their interests, needs, and desires? How can we change the way healthcare operates, transforming this “machine” into a community, one that is constantly willing the good of the other? Isn’t that what we are all seeking anyway? Isn’t that what pulled us into the work we do in the first place?

Each person we care for has lived a dynamic, complex life, one that is still evolving, growing, seeking. The chart, the words of our co-workers, and the objects in a room can help us crack open the book, but it hardly tells us the story. Find the time. Make the time. Engage. Seek to know the depth of a life.