Changing Roles: The Care Partner’s Journey

We all play multiple roles during our lifetime. These roles can be a care partner, sibling, parent, grandchild, student, peer, employee, artist, gardener, friend, and the list goes on. While on this dementia journey we frequently get stuck in the role of the care partner. Stuck in a place that does not allow us to live fully alive. Stuck in a place that can cause us to become disoriented, unfamiliar with ourselves once the role is stripped from us. This puts a strain on us mentally, physically, relationally, and spiritually. We sometimes forget the other roles we are called and created to play. When we are stripped of our dementia care partner role, along with it we sometimes lose the role of son or daughter, sister, spouse. This loss of roles can bring its own level of stress, anxiety, feelings of being lost, feelings of a daunting personal unknown journey and purpose. The grief that enters into our narrative, opens the gates for so many other emotions and thoughts about our own lives as an indivuals and in relation to others in our family and community. The role of care partner often comes without warning, without an invitation, we fight it, play with it, become accustomed to its presence, and then on some unknown day in an unknown way, it is stripped from us as fast as it arrived. If we allow ourselves to remain stuck with a single role, how do we discover the next single step in our lives?

The role of a family care partner is slightly different than that of a professional care partner. We don’t enter into it having prepared ourselves for the role. There is no formal education, internship, graduation, and first job with someone set as your guide. No, it shows up without that training and we must seek it out, oftentimes our experience become the best teacher, and those moments when we feel like we are going to snap, our hardest test. Our graduation, the day our loved one passes away. All of this without being able to clock out at the end of our shift, on 24/7. Has very different tone to it, right? There are many twists and turns to this role, and we cannot watch another person for a character study. Each care partner is on their own track, but all apart of this same dementia ensemble. The cast of your own journey? You, your loved one, your loved one’s professional care team, and Dementia. You play together, working through trials, blocks, and triumphs. You play off of each other, learning each other’s personality, skillset, and needs. You learn how to work in unison in order to walk this dementia journey to the best of your ability. You learn to find the moments of joy, and you find the limits of our physical and mental capability. You are selfless in your acts, and may at times both bless and curse the moment. You give, and sometimes you lose yourself to this single role.

For many care partners, we see other beloved roles stripped from us as we learn more about our role as care partner. Our loved one’s needs increased and we need to spend more and more time with them. We selflessly serve our loved one, only to find ourselves losing the role of a friend, co-worker, even mother, spouse, or father. As dementia progresses and we find ourselves the sole keeper of our shared memories, the role of daughter, grandson, sister, or brother, fade. These roles, of course, are still there, still inside us, still wanting us to create new stories with us as the lead player. As our time no longer becomes our own, our roles as artist, gardener, lay minister, coach, sneak off in the middle of the night. We lose ourselves in the service of another. We selflessly love those who (maybe) once cared for us. This is good, and the family care partners are never thanked enough. Sure it is in some way part of the deal of being a human being and a member of a family, but this journey asks of us things we wish to never ask for, or be asked of during our lifetime. We find ourselves standing alone with our loved one in the story, the only roles being care partner, loved one and dementia.

This is only one narrative of what can be on this dementia journey, and while parts of our society think that there is nothing we can do to improve the balance of roles while caring for our loved one, that simply is not true. We can do many things. We can do little things. We can do great things while still playing the leading role of the care partner.

Over the last year, I have worked on developing the 3-Dimensional Care Partner Project. Some of you have joyfully assisted me with your input and your playfulness, and in doing so prove there is more to this care partner role than we have currently discovered. I want to share this with all of you over the next few weeks a new story, a new narrative, and a new way of playing the multiple roles we were created to play. I hope to spark new thoughts about what you still CAN do while never negating the struggles and demands of being a care partner. This project was meant to be rolled out in phases over the next year, a book, a podcast, a workshop, and a theatre process, but this year has other plans in mind. Starting next week, I will share with you a segment from the unedited book, leading to rolling out this project a new way. It is important to find ourselves again, living fully alive. The question was asked a few weeks ago by the women at Abiding Together, “What titles are you called to live further into? What does growth in those areas look like?” I think these are questions we can all ponder as we enter into becoming 3-dimensional care partners, living fully alive in the roles we were uniquely created to live.

Emotional Memory

It was not talked about, I never saw the program or ticket, but I knew. I could remember.

When I was little my parents took me to see a local theatre production of Rogers and Hammerstein’s, Cinderella. I was too little to remember anything that happened, from where we sat in the theatre, to which theatre we were in, to what dress I wore, yet I remember. These memories are not from seeing the program, or photographs from the day, or having conversations about it with my parents. There was something special about that experience that tapped into my emotional memory, pulling me in and allowing me to become apart of its narrative, or for it to become apart of mine. The power of storytelling, sound, sight, smell, touch, and creativity all were engaged during that experience, that has allowed me, almost 30 years later to remember this live theatre experience. I think it is why, when asked about my “start” in theatre, in aging, in therapeutics, I respond with this answer, speaking to that time when my parents took me to see something that tapped into my emotional memory, my creativity, my imagination. This experience pulled out of me an emotional reaction, giving something that should have been forgotten, life. 

What is it about some elements of our life that we remember so vividly, so purely, so warmly without the aid of family stories, photographs, or other prompts that enriches our lives? This is it that allows each one of us to have experiences where are emotions run with such strength that it can almost outpace dementia? This is sort of a messy question, but truly, do we understand the full power of emotional memory? Do we know how we can use emotional memory to help someone living with dementia, live fully alive?

Early on in my work with dementia, I recognized the power emotional memory could hold, long before I knew anything about its research and support, the instinct and the results I saw were more than enough. As I worked to become relational with others in a way that would not require them to remember my name, title, the reason for being with them, I found ways to help them tap into that part of there lives, and frequently we found a common connection, a place of beauty, a place of warmth. The emotional memory, and engaging the senses, are, for me, the two pillars of successfully working with those living with dementia. Filled out with creativity, imagination, and seeing the person for all they have and can continue to be and become, these two pillars are powerful! I saw how when we created something new, together, even if it was a reflection on something we both loved, a bond was formed and even on the bad days when one would not remember me, I would bring up our shared connection and suddenly I was no longer someone to fear, to fight with, to be alarmed by, but someone to smile with, to hold hands with, to spend a moment with as we move to the next part of the day. In a small way, I was recreating that theatre experience for us, by creating something that didn’t require logical or linear thinking. I normally fight for logical and critical thinking, but this is an area where the emotions are the shining star. 

There is a great emphasis on improv and dementia right now. Programs are popping up all over the country and beyond. It is used both as a teaching tool for care partners, but also as programming in Memory Cafés, Life Enrichment calendars, and in partnership with community organizations. Last summer I wrote about these programs and my opinion about them remains strong. As we look for tools to help us understand emotional memory on a very simple level, engaging in improv workshops for those living with dementia shows us what each person can do, can remember, and can engage with and in. It always amazes me how someone can transition from not remembering much about their life, to telling me the full story of their college career, their parents, their 40th wedding anniversary, simply and clearly, by allowing the creativity and movement of play bring out stories that cause you to forget about dementia. These stories are not always joyful however, the stories of war vets often come out and haunt you as you move through the workshop and head home. It shows us where we are lacking in care for those living with dementia who are also veterans.

Early on in my work with dementia, I recognized the power emotional memory could hold, long before I knew anything about its research and support, the instinct and the results I saw were more than enough. As I worked to become relational with others in a way that would not require them to remember my name, title, the reason for being with them, I found ways to help them tap into that part of there lives, and frequently we found a common connection, a place of beauty, a place of warmth. The emotional memory, and engaging the senses, are, for me, the two pillars of successfully working with those living with dementia. Filled out with creativity, imagination, and seeing the person for all they have and can continue to be and become, these two pillars are powerful! I saw how when we created something new, together, even if it was a reflection on something we both loved, a bond was formed and even on the bad days when one would not remember me, I would bring up our shared connection and suddenly I was no longer someone to fear, to fight with, to be alarmed by, but someone to smile with, to hold hands with, to spend a moment with as we move to the next part of the day. In a small way, I was recreating that theatre experience for us, by creating something that didn’t require logical or linear thinking. I normally fight for logical and critical thinking, but this is an area where the emotions are the shining star. 

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. 

Blending our Lenten and Dementia Journey

“My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.” – Thomas Merton

As we enter this Lenten journey may we remember that we may not know where we are going. We don’t know the trials and triumphs ahead us. We are unsure of how we will grow and transform over these 40 days of Lent. And, as Care Partners twisting both the Lenten Journey and the Dementia Journey into one, we are reminded even more deeply of the unknowns that God has set before us and that we care called to something of a great ministry. We have in our hearts a desire to grow, to find the good, the true, and the beautiful along this path, but it can feel lonely as the needs of our day to day creeps further into our plans and we may not be able to keep our Lenten promises regarding prayer, fasting, and almsgiving. We are not alone on this journey, for the Father always sees us, for Jesus knows our human desires and pain, and the Holy Spirit is guiding us always.

As we receive our ashes we are reminded that from dust we came, and to dust, we shall return. Those living with dementia are often hyper-aware of this fact. We see the mortality of our loved ones and ourselves through this journey. We experience loss far more frequently than others, yet, there is beauty in that, a cause for finding ourselves grateful for the moments we are given, and the gifts we still can give. As part of Lent, we are asked to give alms, to share our time, talent, and treasure. One thing that we can give as care partners, or as individuals with the diagnosis of dementia, is ourselves. We may not have the ability to give as we once did or would like to, but through our selfless giving, this can be by helping our loved ones attend Mass or a service each week during Lent, to sit a moment or two longer, or smiling at the CNA and other care partners who look down, lost, and in need of something to lift their spirit, we are giving what we have.

As we pray, let us not think about doing more, but doing what we can with great devotion. Don’t overload your plate with 3 different daily emails, devotionals, books, and prayer challenges. Find something that is simple that can be done with great love, well. Some ideas may be:

To follow along and pray the rosary with, The Peace with Dementia Rosary by Matthew Estrade,
Read Matthew Kelly’s book Rediscover Lent or Rediscover Jesus
Sign up for Dynamic Catholic’s Best Lent Ever
Join the #LentFit Challenge through the Catholify App
Participate in a Marian Consecration through Fr. Michael Gaitley’s book, 33 Days to Morning Glory
Pray one Our Father together with your family, or loved with dementia after a meal, when you first get up, when you stop by for a visit and take in every word of the prayer together.

Do one act of prayer, and do it with great love, devotion, and intention.

As we Fast we find ourselves in a pattern continual reminders as we long for that which we gave up, are Fasting from. Those living with dementia or over 59 not required to partake in fasting from food, but maybe there is something we all can do? We are called to holiness, to grow closer to God, and what will help us get there? Only you can answer this question, but again, there is no need to be extreme, maybe it is one simple thing that reminds you of the great gift God has given us through his Son, Jesus, and that we are from dust, and to dust, we shall return.

I am praying for you as you walk your Lenten journey, please pray for me. We are a community of sojourners on this Dementia Journey, but we are also a community walking together towards our eternal home. May God bless you, always!

We Need Others!

Last Friday was Valentine’s Day. In the mix of your typical Valentine’s Day posts, I noticed an increase in posts stating something along the lines of, “I don’t need Valentine’s Day. I take care of myself. Thank you very much!” and “Who needs men/women? I don’t need anyone!” Okay, this is true we don’t need anyone, or do we? While posts on a day like this are directed towards not needing a boyfriend or girlfriend, husband or wife, and this may be true, we do need others. I wonder if it is affecting our ability to be the care partners others need us to be? It seems to be growing, this idea that we don’t need anyone, but we were created to be in communion with one another, to support, assist, care for, and spend time with each other. We all need others because we are imperfect, my gifts and not your gifts. My strengths are not your strengths. I was uniquely created for a specific purpose, and so were you. It is in coming together that we find ourselves thriving as a society, living fully alive. Imagine a world without something you love, but cannot produce it yourself? Imagine life without someone to mentor you in an area that is not your strength? We would fail. We would fall.

As care partners, we live in a swirl of life. Some moments feel like a tornado, others like a spring breeze. (Ah, spring breezes! I am ready for those again.) But, through each moment on our care partner journey, we do need others to remind us of ourselves, to guide us when we don’t have the answers we need to move forward, to take the lead when we have become nothing but a shell that bickers and snaps at the world, and thus causing greater pain for all involved. Why are we so afraid to ask for a community? Why do we feel it is a moment of failure? Yes, it is great when we can stand on our own two feet, accomplishing all we are setting out to accomplish, but we cannot be that person 24/7. I see this puffed up mindset of not needing anyone growing, and it must bleed over into our care. How can we stop the bleeding? How can we come back to the center, knowing that we can stand on our own two feet AND we can ask for help? We have lost our sense of community and what it truly means. It is a buzz word, a feel-good word, and increasing, an empty word.

As children, we need our parents and guardians to take care of food, shelter, clothing, and education. Our family is our community. As students, we need our teachers’ expertise to help guide us through the many subjects we study. Our school is our community. As young professionals and higher education applicants and students, we need people to help us navigate how our purpose and passion come together to impact those around us. Our cohort and company are our community. As new parents, we need the love and support of others and we need our children. Our loved ones and family are our community. As we grow older from birth to death we need our doctors and nurses to care for us when we are sick, we need our therapists and spiritual directors to help us navigate our world, we need our faith leaders to point us towards God and heaven. Our medial, clinical, families, friends, and neighbors are our community. As elders and those living with dementia, we need care partners to help us continue to live a life, fully alive. Those in our life both near and far are our community. At every stage of life, we need people for different reasons, and we all enjoy the feeling of being needed, it is part of our human nature. So, for this to happen, we also need to need others. We are linked. We are necessary to each other. We need a community of family, friends, care and health professionals, and neighbors.

Let us bring meaning and purpose back to the word community and all that it can be for us, for our loved ones. Let us feel the freedom to need others. What does community mean to you? How would you like to see us transform? What action steps will you take to blend standing on your own, and accepting that you too need someone?

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?

What is Missing in Our Accessibility Statements?

You know those thoughts that come to you, and NEVER leave? I have one of those thoughts on Accessibility floating through my mind now. Many organizations have “Accessibility Statements” on their websites and in their literature, but have you noticed what I have noticed? It is all about the physical. They make statements about how they are accessible via wheelchair or walker, and how they have systems in place for those who need assistance hearing, yet, what about those who need help because of memory, over sensory stimulation, and other invisible needs? This goes beyond being dementia friendly, beyond age-friendly, and beyond the physical wellbeing of each individual who walks through their doors or participates in their event. 

Having both of my parents certified in either Aging in Place or Universal Design, I understand the focus that can occur on the physical. I see how an organization must focus on these elements while constructing their physical presence. These statements while limiting are valuable and benefit everyone in the community. Statements regarding the whole person also need to be created. Don’t you agree? 

I dream of a vision statement looking something like this: 

[Our organization] has made an effort to make our main entrance accessible via a handicapped lift that will provide assistance getting from the street level to our building, where a large elevator can accommodate both wheelchair and walker to the various levels of our building. In addition to our entrance and elevator, our restrooms and community rooms are also accessible. We offer dedicated wheelchair seating when applicable. 

Through our main office/box office we offer any applicable ALD devices for any visitor to use during their visit. During our main stage events, we offer an ALS interpreter. 

Also through our main office/box office, we offer large print material for all events that will be available, as well as digital versions you may use via any electronic device to read at home before and after your visit. 

[Our organization] is a Purple Angel, and fully-trained in dementia and how to adapt and best serve those with memory loss. 

We believe that each person deserves to live fully and that their needs deserve to be attended to and their dignity should be upheld. If there is anything that interferes with your ease and enjoyment of our organization, please reach out to the closest staff member, and they will be able to assist you. 

We invite you to give us a call with any questions you have or would like to make us aware of any needs you may have prior to your visit. Our staff participates in yearly accessibility training on best practices for helping any guest enjoy their visit. If you need assistance while here [at organization] please feel free to seek out any staff member that will be throughout our building. 

This is nowhere near a perfect accessibility statement, as I attempt to draft something as wide and generic as possible, but I hope you get the gist. Please feel free to adapt and take whatever you feel fits your new accessibility statement. 

Are We Like A Burnt Tea Kettle?

There is something about a burnt tea kettle that connects all of us. We seem to have those stories, don’t we? Of a time when we forgot to put water in the kettle and turned on the burner or the time when we put it in the oven to take it off the cooktop and later turned on the oven and burnt up the kettle. All of us, either ourselves or someone we know have done something like this. It links us all, much like our humanity.

As we navigate this dementia journey, facing the many unknowns, it is our shared humanity that continues to connect us, guide, us and support us. When we ignore our humanity we become charts, numbers, and task lists. Much like that burnt tea kettle, we forgot to fill ourselves with water, with life, we have forgotten our humanity. Unlike that tea kettle, we can be thrown in the snow when we realize our mistake, human beings cannot be thrown out. They/we need to be renewed, restored, and reminded of the beauty of life, regardless of our trials. Unlike that tea kettle, we cannot run out to the store (or order on Amazon) a new one.

When we realize that we have forgotten our humanity, regardless of any “issues” we or another person may have, we cannot just continue to let them go or throw them out. This is true for individuals living with dementia, residents in a care community, and even for the care partners amongst us. As I think about this idea of restoring human life (regardless of circumstances) I cannot help but think of two quotes. The first is from Audrey Hepburn, “People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone.” The second is from Lewis Carroll in Alice in Wonderland, “I can’t go back to yesterday because I was a different person then.” We can’t go back to before, but we can renew and restore our lives. We are constantly becoming. Each day brings with it something new, a lesson, an experience, a trial, a joy, and these experiences change us. So, when we forget our humanity and allow ourselves to become like that burnt tea kettle, we can’t go back to redo that time, we have changed, we maybe even have a scar or two, but we can be restored and do not need to be thrown out and replaced.

It is reconnecting with others, with ourselves that we are filled back up with water again. We can share our stories of that time we burnt the tea kettle with laughter, an eye roll, and a smile and suddenly we have found a moment within our humanity that brings us joy and connection. At the beginning of this year, we are like a tea kettle filled with water. We look forward with hope and joy, excitement and energy. May we, along the way, remember to refill as we give to our careers, our families, those we care for, and those we serve and encounter. May we end 2020 not like the burnt tea kettle, but like a well-loved one that has helped bring moments of connection to others, constantly refielled, and restored.

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.