The purpose of this blog is to be a guide for those who read it. It is not meant to be a medical or mental health resource, or diagnostic guide, but to discuss moments of the dementia journey. Not everything will be founded in scientific research, but all will be based on experience, both that of my own and of those I work with who have given me permission to share their story on this public platform. This blog is to serve as a discussion starter, and place to develop our shared story. If you have questions about anything I have posted, or find an inaccuracy, please do not hesitate to contact me directly. The opinions and stories are my own unless otherwise stated. Should something be referenced you will find the proper citation at the bottom of that particular post.
I don’t often have guest authors, however, if you would like to write a post for consideration I will gladly consider your submission. If you would like to share your story of dementia please consider writing a letter for the Dementia Letters Project. You may submit your letter by emailing email@example.com.
When I think of all that is wrong with aging and dementia care, the list is long, both specific and vague, and quite frankly, overwhelming. I think of how stale this industry has become. How afraid we are of changing what has been even when we know it is not working. We hide behind certifications and programming that bring us warm fuzzies. We are training the next generation of medical, clinical, and social care professionals to reinforce stigma, not alleviate it. Given our actions, we have no clue what person-centered care is or means. We are more concerned about visits from the state, census numbers, and how luxurious our build looks that we forget about the people who bring reason to our very existence. We fail our residents, their families, and our staff day after day after day.
We are not playing the long game in aging and care. For lack of innovation? Or fear? But much like the dementia journey, the care industry is not all doom and gloom.
It is in our professional DNA to be innovators! We straddle the line between science and art, using our humanity to transform the world around us. We entered this industry for a reason. We have compassionate hearts. We believe in a quality of care that does not rest on keeping someone alive but in helping them live. I see this in many of my peers as they navigate the day-to-day, thinking of new ways to design buildings and schedule programs. We have the responsibility to use the positions we hold in care (regardless of where we sit on the professional hierarchy) for innovation. We are in a position to educate others, both in the sciences and the arts, on dementia so that they can become leaders and innovators as well. We don’t need permission to innovate. We only need to start working together, and little by little, replace fear with innovation.
Innovation in care isn’t some dream or out-of-reach idea. It won’t be easy, but it can be done. Innovation is simply a way to think of how to do something we already do, but with a refresh. We work with what is in front of us and then try something new. We can think of what can we do? Not, what can’t we do. We allow ourselves to use our imagination. How would I like to do x if I was in control and could start from scratch? Then once you allow for enough time to dream and wonder, look to see what can be done right now. Then once that is done, what can we do with this moment before us. You continue the process, you invite others to join you, and you work to keep the changes that work, transform what didn’t work, and keep going. Matthew Kelly is known for saying, “Just do the next best thing.” That is all it is, innovation and transformation. You work moment to moment with your whole heart and begin to create something good.
As Life Enrichment Specialists, what is your next best thing? How can you, even while calling bingo, transform the experience to better align with why people show up to play the game? If they are there because they love the game, well, then call bingo as you have never called it before. If they show up because they like spending time with their friends and neighbors, how can you play the game to reflect that purpose? If they show up because they enjoy helping out their table mates, how can you position the game so they can help out those who might need some assistance?
Whatever your role may be, how can you innovate with the moment before you? What is one thing you can do that accomplishes the task at hand, but in a way that is better than the last time you did the same task?
Don’t be afraid to innovate. The pressures, demands, and stress of working in care are remarkably heavy. The weight is real and ever-changing. But, what is one thing you can do right now that over time will transform the care industry into something we can only dream about today?
Faith can pull us through our struggles, fears, anger, and our sadness. Faith helps us hold onto the light of our joy and successes in times of darkness. As we journey with dementia, our lives continue to experience a range of emotions, trials, and joys, so why does our faith get crossed off the list the moment memory and language start to waver? How can we, as persons living without dementia, help those living with dementia continue to grow in faith?
We are all the woman reaching out to touch the Hem of Christ. We are all the woman seeking healing after a period of suffering and pain, having faith that if we simply touch Jesus’ garment, we will be healed. Through our prayers, our interactions with our faith community, our church attendance, we seek healing from the many things that ail us in this world. We seek healing for physical, mental, emotional, financial, relational, spiritual pain. We cry out to God to be merciful and bring us peace. We pray for miracles and angels. We search for meaning in our pain and pray for healing, not knowing how long our pain might last or if it will end. We are all the woman reaching out, believe that we will be healed, if only we touch a thread from Christ’s garment.
While we are all seekers in need of healing, we are also the hands and feet of Christ. Because of us, He can answer the prayers of others. As individuals living with dementia, as care partners, family and friends, and as community members, we become the hem of Christ for those seeking healing in this life and those walking with us on the dementia journey. We likely cannot provide the miracles those on this journey pray for, but we can alleviate some of the sufferings. We can walk with our fellow men and women in faith.
Why then is faith pulled away from those who need it most? Why do we disrespect the faith of someone living with dementia because of what we assume they will remember? Why do we pull Christ’s hem closer inward when someone is reaching out to meet us?
For those living with dementia, faith is the one constant that does not care about memory, an ailing body, or the humility one sometimes feels while receiving care. One’s faith community may be the only thing standing once the diagnosis of some form of dementia hits the charts. We then must prepare ourselves to accompany those on the dementia journey, becoming the hem of Christ. Becoming the very thing that will alleviate some of the sufferings, heal the wounds of isolation and being left behind.
For those of you who have been with me on this journey for some time may know, walking with those in faith and dementia has been a major part of my work. Since 2013, I have dedicated a part of my life to helping those living with dementia and their care partners live fully alive, connected to the community of faith they seek. In my visits, I bring with me the Eucharist, prayer, conversations of faith, Advent and Lenten reflections, and much more. Over the last 2 years, I have discovered ways to formalize this work, so that others will have the training, support, and faith formation required to go where I alone cannot go. The Hem of Christ Ministry is taking steps to become a non-profit organization and full ministry of the church. After 3 years of ignoring the call, I have decided to make it happen, for it is only through the Holy Spirit’s guidance that any of this is possible. The details will come in future posts, but I ask for your prayers as I continue this journey of faith. If you would like to be a minister of this ministry please reach out to me at firstname.lastname@example.org, and I will work with you to train your church, support the work you wish to do, and magnify the gifts you can bring to the ministry, and add you to our daily prayer.
For the Glory of God Alone! May we accompany those living with dementia and their care partners!
Assumptions can sting, can’t they? But, we do it all the time about ourselves and others based on the past and what we know about a person. So often, these assumptions are not entirely correct and can limit (or try to limit) a person, preventing them from achieving success, in accomplishments both large and small, from forming deeper connections, from living the quality of life they desire. We stop ourselves. We stop others. Many assumptions have been made about who I am and what I am capable of doing. Twice something was said by the same person, assuming I am not capable of something because I grew up in the Midwest. They assumed I likely do not have what it takes to become truly successful working in New York in a job that is all about connections and building relationships. They assumed my “Midwest Nice” was a flaw, a point that would make me weak, unable to stand my ground, or know how to communicate with “born and bred New Yorker.” I have had many assumptions about what I can accomplish because of my age, religious background, and political views. I, sadly, am not the exception, but the majority. And I, am guilty of making assumptions as well. I am sure you can find ways where this is true for yourself as well. In dementia care, these assumptions not only alter the mood or the relationship but a person’s purpose as well. When we assume someone cannot do something because of dementia, we are forgetting all of the other things they can do. We are limiting our creativity and falling into the trap of stigma and stereotypes. When we assume something about someone because of one’s chart, current living situation, or even a first impression, we are limiting their ability to live fully alive. Each person has some control over their life, yes, but no one has total control. We are made to help each other. We have been created to live in service of one another, to help each other live fully alive, and the assumptions prevent the puzzle of life from reaching completion. How often is it someone else that has opened a door so that we might walk through and achieve the next step in living out our purpose? How often has someone aided another to get an interview for that job they want via a letter of recommendation or an internal referral? How often does someone else point out a gift we have to give that we didn’t see ourselves, and once we were able to see it, we went running into it, and it enriched our lives beyond words? When we assume something because someone has dementia, we are preventing these moments in their life. We must work to live beyond the assumptions we make about others and ourselves, and in doing so, explore the richness of this world and our community when we help each other live fully alive.
“Look forward! Just Grind” was the response I received after asking how the past few months have gone for an individual professionally and personally. There is something about that word, “Grind” that grates on me. Yes, we want to work hard, but have we thought about the need for silence, reflection, and slowing down? Have we thought about reframing how and why we work? Not only have I thought about the ever-popular hustle approach to life, and how it impacts our society at large, but I also have pondered the negative impact on those living and caring for those living with dementia. When we say, “just grind” we are intensifying this idea that one must be a “productive” money-making member of society to have any worth. So, when someone living with dementia no longer can work (even if they want to) and their care partners are having to step back to care for them, we are telling those on the dementia journey that they don’t matter. We are saying to the world, that our current view of what it means to be active in the world is okay. And, while to some degree it is okay, we have an enormous amount of work we need to do to shift away from the “just grind” mindset and into intention-filled productivity.
As we work and live with dementia in some form or another, we know that there is greatness to life, even with dementia. We know that life does not end after retirement, or with the diagnosis of some form of dementia. But does the world know this? I don’t think so. Stepping back to take an even wider view, how does this impact all who have retired, or have decided to become the stay-at-home parent? We have come to think there is something wrong with this idea that we can simply be where we are called at any given time, and that too is a beautiful productive life.
Those living with dementia have had this productive label removed from their lives. Not by choice, not reflecting the reality of the situation. I know individuals who live with all different types of dementia who are doing great things! They are writing books, creating art, volunteering, connecting with grade school students, and leaving a lasting positive impression on their life, and many are praying for the world and those who come to them asking for their prayers. I know many productive individuals living with dementia who are giving themselves to the betterment of their community, just as much as those who are immersed in the “just grind” way of life.
I wonder what will become of these “just grind” individuals when they get older? Will they lose all sense of self upon retirement or after a situation that requires them to stop working? What is the impact on their family? And, are they taking enough time to spend with their older relatives and friends? Do they realize the beauty and gift that can come to both their relationship, their personal life, and their work-life if they step away from the grind and into intention?
We have a responsibility to accompany those as they transition from work to retirement, from life before dementia to live with dementia. I don’t think we are doing a great job of this accompaniment. The greatest way to accompany someone in this area is to transform the way we live ourselves. We can shift our mindset away from what is or isn’t productive, unravel our purpose from employment, and engage with others. We can take time to, yes work hard, but also stop for reflection, silence, and live a holistic life.
I fear the negative impact this “grind and hustle” culture will have on our society as we move into the coming years. In reflecting on the past, generations before us did work much harder than many of us do today. Factory and farm life were grueling for generations of individuals. The safety of their job was not what it is today. The hours they had to work so they could put food on the table, and clothing on their children’s backs far exceeded what many families must do today. We can reflect on where we are now vs then and use it as an excuse to hustle, OR we can realize how far we have come as a society and better distinguish the work needed to take care of our food, shelter, and clothing from the cultural pressure to keep going. Today’s working population will require a new group of individuals to help guide us into retirement, care, and even illness. If we don’t start taking time to reflect, sit in silence, and realize a productive life is more than the money we rake in and the professional status we reach, we are in for a rocky road.
As care partners, we cannot rely on that perfect morning routine we read so much about and follow the somewhat universal belief that if you start the day “right” you are setting yourself up for success. Elements are true, but we cannot stress when our day begins in a way that is eons from that “perfect morning routine.”
For we may start the day on our terms, and then be immediately thrown off, undoing all that work we did when we woke up. A loved one may fall, communication may be difficult, or a routine doctor’s appointment is turned into something more.
In a way, this could be anyone’s life, not just the life of a care partner. Everyone has bad days. All of us have moments when the plan for the day or even the hour is thrown out the window. No morning routine can save you from the trials of life. To some extent, all of us are living in service of another, yet when one is a care partner, the mindset, the need for flexibility, and the possible strife greet us differently. Our emotions are fully invested in our work, along with our body, mind, and spirit. This is why care partners must find moments and easy ways to restart their day. These moments are more important than a morning routine. Care partners should be guided to find a moment to refresh their minds and be able to go out into the next hour or even minute with a sense that life is still beautiful, still good, and that we can all start again. When we try to start or reset our day, care partners sometimes need that extra bust of encouragement, grounding, and peace.
Fulton Sheen said, “There are two ways of waking up in the morning. One is to say day, “Good morning, God,’ and the other is to say ‘Good God, morning!” I think of this quote often and find it to be the best morning routine. It can set up or a day when we cannot spend two hours every morning journaling, working out, meditating, praying, and “eating that frog.” Our biggest project is to serve and care for our loved ones. That 5:00 am Club will have to wait because that block of time from 5-7 may be the only hours of sleep we get. The journal pages will have to remain blank for now. That book will have to wait. Our morning run may have to become a 10-minute jog right before bed.
So what does all of this say? For care partners, your best morning routine will be to thank God for a new day. To find a millisecond of thanksgiving before you fully open your eyes. Your morning routine may be saying a quick prayer or voice dictating an email to a friend or loved one while you walk downstairs to make breakfast. Your morning routine will have to be one of thanksgiving to get your mind and heart set up for a day that may be the best day of your care partner’s journey or the worst.
It is important to remember, when road bumps hit, that you can restart your day. Re-enter that moment of thanksgiving for something, anything! That sip of coffee or tea. The sunlight. Your ability to stand, walk, put dishes away without too much effort, clean clothing. Something. During times of respite or quiet, create a list of everything you are or could be grateful for and keep it in reach for these moments when you need to restart your day.
Throughout the day, find ways to engage with what is important to you. It may not be the 110% effort you once knew, but engage with it. Read a page of your favorite book or an article on your passion topics. Find ways to have your loved one help you bake your famous cookies. Say a prayer while you help your loved one get in the car for a doctor’s appointment. Do something with the 30 seconds, or 30 minutes, that you have to reset your mind, your heart, and your day.
Morning routines are the buzz topic right now. I cannot help but read about what someone is currently doing each morning, or seeing the competition about who is getting up the earliest or accomplishing the most before 8 AM. Yes, a well throughout morning routine can set up your day for success and in turn your life, yet even that may be a luxury for some. We can all wake up with a grateful heart and find 30 seconds throughout the day to refresh the spirit in a way that will carry us through until our head hits the pillow. We can all take a moment to breathe even if our hands and emotions are full.
Over 20 years ago, Tom Kitwood introduced the world to Person-Centered Care. That was in 1997. It is now 2021. Where have we taken his invitation? Person-centered care has become a buzzword, a warm fuzzy to slap on a marketing brochure or announce at a conference, or talk about in a YouTube video. Yet, are we? While some care communities and organizations have taken a great charge in this direction, working to enact Tom Kitwood’s findings and invitation, few have done anything with it. Much like Creative Engagement, it has become something it is not. So, how do we get back to the roots? How do we start from the beginning and accept the invitation to live a person-centered, creative life with dementia?
We are called to become relational with everyone we meet.
It is that simple and that complex. Become relational with your residents and clients, and you will find yourself in a person-centered care community. You will be open to the creativity required to help each person live life to its fullest, rich with purpose, joy, and connection. Okay, so how do you become relational with someone in this setting, who might be living with dementia, who doesn’t remember me, who may not be able to communicate? I hear your questions, and I have a somewhat simple answer for you.
First of all, everyone can communicate. Communication is far more than the words we speak. Second, how would you become relational with a new friend? A new employee, peer, or volunteer? How would you become relational with a family of one of your residents (or soon-to-be residents) when they are touring the community or coming in for a visit or care meeting?
You would likely follow any number of the following steps.
Greet them. Say Hello, state your name, and add a “good to see you!” or a “lovely to meet you.” We would not get right down to business. We would have a greeting a moment to say hello, to see where the person is at that moment. Each resident deserves that same respect. They don’t need to know your name, title, or reason be being there. They need to know they can trust you. That you are there for good and not ill. Say hello, share your name if they don’t call it out when they see you and exchange a pleasantry even if they are not able to respond as you would respond. If you have attended one of my training workshops, you know about the creative greeting. This would be the time to enact that moment of creativity. Do this at their eye level. Don’t bend over at the waist, but sit in a chair next to them, or crouch down.
Be observant and find a point of connection. Look at the clothing they are wearing, if they are carrying anything with them, doing anything when you happen to walk up to them. Take note of what they have in their room. Keep what you see in mind as points to create conversation or spark a program or event they might be interested in. Comment on something you see or ask a question. Connect what you see to something that is part of your story. If you both appear to like the same artist, have traveled to similar places, or even have the same number of members in your family. Connect with them in a personal and emotional way. This doesn’t mean spilling your entire life’s story but finding moments of shared interests, experiences, enjoyment. This can be food, family, faith, hobbies, artistic interests. Do this in a way that respects the many years of life experience they have lived, the journey they have taken, the wisdom they have acquired. If they don’t want to engage in something you bring up, move on. In whatever way they respond, take it in and be present for them. Don’t shy away from “negative” emotions.
Invite them, and continue to invite them to programs. Even if you always get a no, invite them anyway. Unless they told you not to do so for any given event, sometimes the simple act of an invitation is enough to feel connected to you and the community at large. You never know what conversations may occur while giving the invitation. You may learn that they love music, but hate the music that so often is played. With this information, you can ask them what music they enjoy and see if it can be included next time or in future programming.
When something is requested, be it a small moment for conversation or sitting in silence looking out the window, or a request for a program or the ability to participate in an element of their faith, do all you can to offer that program or moment.
Engage the person. Don’t talk over or around them. Don’t assume they cannot participate, communicate, or have something to offer others. Learn about who they are, ask them questions, learn what they love and what they hate (not just what the family tells you,) and do what you can to bring joy into their life simply by being your fullest self. Smile, communicate, engage. Allow them into your life to the appropriate point and allow yourself to enter their life. Think about what matters to you in a relationship, and offer that to your residents.
Person-centered care is what we strive for, yet we stumble and fall. We hide behind its words and use it as a shield. It is time we take the invitation from so many years ago to heart. It is time we embrace what can be and the beauty of our humanity across the lifespan.
Who said you can’t bring your fullest self into the care partner relationship? What’s stopping you?
My obsession with history and my curiosity about others was ingrained into my DNA and part of my interests long before I picked up my first American Girl Doll. For many of us, the toys we play with and the things we watch form us and our interests from an early age. For me, it was not the toys or movies so much as it was the books my mom purchased for me and the stories she read out loud.
When I was in 1st grade, Mom purchased for me all of the Meet Samatha books from the American Girl Collection, and my obsession with historical fiction began. I went on to read all the books that went along with the first five dolls, Felicity, Kirstin, Addy, Samantha, and Molly. I devoured these books, and up until I went off to college, they continued to hold pride of place on my bookshelf, a constant small reminder of where it all began. American Girl is not the same today as it was back in the 1990s, but Pleasant Rowland’s creation formed me as a young girl as much as the work and imagination of Francis Hodgson Burnett, Kay Thompson, and many, MANY others!
My love of history, people, and historical fiction grew as I got older and evolved with me. But it all started with American Girl. Who knew that a book series with corresponding dolls could hold so much for such a small girl. When I started collecting the dolls, accessories, and books, American Girl was not the status symbol it has become today. One would pick a doll based on the story they wanted to live in, not as a way to compete with another girl at school. Some classmates only had the books, and some classmates had all five dolls. We shared with each other, and we talked about the books and the places we would go in our imagination as we entered the various time periods. Great adventures and quiet moments were sparked by each book and the play we entered into with our dolls. Living in Wisconsin meant our moms could go down to Middleton to the warehouse sale where they would pick up accessories, patterns, and fabric to expand our collection at a lower cost than that of the catalog price. Roxanne’s Doll shop downtown allowed us to enter even more worlds as we uncovered different time periods not addressed by Pleasant Company. The world of American Girl knew no limits and made up most of my childhood.
How does this relate to dementia you ask? Well, everything! You see, it was this pivotal element of my childhood that formed who I am today. That formation has informed how I become relational with clients, and over the years, AG has been a direct point of connection. It was in sharing my love of historical fiction and how I came to love this type of literature that the subject of the dolls came up. When it came up in conversation, it became our emotional tie to each other. This lead to Wednesday conversations and programs designed specifically to address what made these individuals feel fully alive. My programs such as A Deeper Look, Women Through History and Fashion, A Page a Day Book Club, and many others including, the Dementia Letters Project, find their roots in the conversations we had about historical fiction and American Girl Doll.
It was in sharing of my love of American Girl Doll that we had conversations about the toys and books that formed us as children, and went on to form their children and grandchildren. One person even told me how they spent so much money on Barbies in one year for their granddaughter that they could have purchased an American Girl and all of her outfits. She thought American Girl would have been the better investment. We agreed with each other, that it is about having a few great toys instead of an entire house filled with the latest and greatest. I could write for hours about the conversations that this topic alone started, but I will stop here before this story twists out of focus.
What part of your life could you share with someone you are working with right now? How can you share your fullest self?
If I did not share my fullest self, I might have never come to know the fullest version of the clients I work with, and we would be stuck in the cycle of programming and 2-D relationships we so often see in care. Forget about dementia for a moment, and engage with others. Now obviously, there are times when you don’t (and even shouldn’t) share elements of yourself and your life. But focus on what you can share. Yes, this is a professional environment we work in, but for our clients and residents, it is a personal one. It doesn’t require us to go through your life’s history, sharing every element of your life to be successful. That is not necessarily your fullest self. Your fullest self is to be present, to engage in conversation, to share with them what you love and who you are when it naturally comes up, and to think of the relationship as two human beings, instead of the person with dementia and professional care partner.
Next time you are at the crossroads of, to share or not to share, consider sharing a bit of your life with those who sit before you. It could change your entire world for the better!
What do you do when the “you-ra-ra” of an awareness and advocacy moment ends? What do you when it starts? This month is Older Americans Month, and next month is Alzheimer’s and Brain Awareness Month. I have already started to see the events for the Longest Day gearing up. These dedicated months shine the spotlight on aging and dementia and those that walk the dementia journey. Organizations and communities launched new initiatives, programs, and coalitions. People get involved and become cheerleaders, fundraisers, and walk participants. Flyers are on every bulletin board and in every email. But what do we do with this momentum? We can’t put it on a shelf until next year or until the next time the spotlight moves once more to flood us with its light. Action takes more than a cheerleader-like hype, it takes work, hard work. This work sometimes moves very slowly and sometimes quickly. Action means making lots of mistakes and creating the much-needed positive changes everyone seeks. Some of those who have joined us during these awareness months will fall away, yet their presence still made a mark. We are not all called to the continued life of advocacy. We must be okay with that. However, it is left to those of us who remain standing day after day, hour after hour, still marching along to take what we have collectively created each month and transform it into everyday impact.
Here are ways you might be able to move forward and beyond the “you-ra-ra” at the end of each awareness moment.
Reflect on all that was created or highlighted during each awareness month and see what resonates with you, your skills, the time you have, your talents, and your personal mission.
Commit to continuing to learn and grow in knowledge and understanding of dementia (or any topic that came up for you.) This can be through formal education, workshops, or consuming and internalizing the content created by those living with dementia. This can be in the form of podcasts, blogs, books, keynote addresses, and social media accounts. Maybe find a way to connect on a personal level with these individuals by engaging in the comment section, sending them a message, and supporting them the way you would wish to be supported, or in ways they have stated they need support.
Create a personal action plan that enhances your educational path, this can be through donations, volunteer work, hosting a workshop, or hosting a speaking event. Maybe your action plan is paying attention to the language you use about dementia. Is it in a positive light? Are you reinforcing stigmas or a negative narrative?
Take the time to visit those in your life who have dementia. Make is a regular commitment, and if you cannot visit them in person, find other ways to connect on a daily, weekly, or monthly basis.
Continue to grow, create, and strive to live fully alive yourself and help others on the journey to do so as well.
Donate to CaringKind and help them continue their mission to serve all on the dementia journey not only in the city of New York but beyond.
Support the work of Dementia Action Alliance through your donations, interactions, and commitment to further growth and knowledge.
VISIT YOUR LOVED ONES!!!!! In any way that you can! Small ways and grand ways. With your children, your spouse, invite other family and friends to join you. Do it, do it every moment you have/can create in your schedule. They deserve your love and a time on your calendar.
If you own a business become a Purple Angel (As an Ambassador I can help you become a Purple Angel) and invite the places of business you visit to become one as well.
May I join you on your journey? Work with me to create and/or learn something new!
Stuck in-between research and the human heart is where you will find most care partners. They are family members, friends, CNAs, doctors, life enrichment teams, care community staff, and partner organizations. It is in this middle ground where the language of the academic and medical word gets shuffled around as we try to make sense of it all. It is in this middle ground where we battle with the practices of using medicine as a crutch and the false belief that the human spirit is simply not enough. The truth is, medicine is not a crutch, and the human spirit is enough.
We need visionaries in aging and dementia to become the leaders guiding us out of the mucky middle ground and into clarity and greater hope. The middle ground is often where we want to be. It is where ideas blend and strengthen each other. It is the middle ground where we think we will find joy and forward-moving action, yet it has made us complacent in care. The middle ground has turned into a place of safety where we are debilitated by the fear of harm, behaviors, and the powers that could shut us down.
There is so much we don’t know about dementia, but there is a lot we do know. If we ever get lost, let us find those with the diagnosis and ask them to guide us out of this middle ground and to a place where we stand on top of the medicine, research, and the human spirit. May we ask them to show us how to infuse our work with humanity and the care they are truly seeking.
I am not sure if you have noticed or not, but there are incredible people out there doing amazing work in aging and dementia. They work and live in every area and are academics, medical professionals, artists, individuals living with dementia, clinicians, and educators. Everyone from Teepa Snow to Anne Basting, to Dr. Bill Thomas and Becca Levy, to Brian LeBlanc and Kate Swaffer. These people and many MANY more have risen to the top of the list simply because they are visionaries and guides willing the good of the other. They have taken medical terms and infused meaning into them, they have called us out when we may be drifting too far one way or the other. They are the visionaries and guides we need, which leads to the question,
If we are not visionaries in aging, are we then complacent care providers?
If we are not looking forward, then are we finding ourselves running in circles complaining about (or worse, no longer caring about) the state of our care communities and providers? If we are not using our imagination and knowledge of what we and others truly need, are we causing harm while trying to keep the status quo?
Encouraged by the power of creativity and positive thinking about aging and dementia infusing our daily conversations melded with our collective experience of the harm of isolation over this past year, may we have the courage. May we have the courage to stand on the foundation of the medical, academic, and simple beauty of the human spirit, daring to become visionaries in aging and dementia? We can tend to think that there can only be so many visionaries, guides, and leaders in any given profession or area of work, and I am here to tell you that is false. Each one of us is called to this role. With our skill set, time, and energy in tow, each one of us has the capability to create something new, unknown, with a lasting positive impact, helping all of us live fully alive on this earth.
Let us not be known for our complacently, but for our vision, courage, and creativity as we work and live in a world with dementia.
When did caregiving become something that is so incredibly shameful? When did it become a burden instead of a gift or purpose in life? The reluctant care partner has become the socially acceptable way to refer to oneself, and it has me wondering what it truly means to work in service of another’s care.
Since March of 2020, a flood of posts and articles fill my inbox about the reluctant care partner. The mother, now working from home and helping her children further their education. The daughter or son who pulled their loved one from the care community for fear of never seeing them again if they didn’t act. The wife taking full care responsibilities after the in-home care aid is no longer allowed to visit by the organization or by family choice. Stories about the burden and challenge of care, personality clashes, and old wounds reopening when the role of care partner intensifies. These stories are recited almost in unison. We, as a society in 2021 look down on care partners. That is loud and clear. And we do it in the worst possible way. We increase shame and stigma in how we talk, act, and dramatically complain about what it means to care for another. We don’t want to sacrifice ourselves in a time when “I want when I want it, and I will get it” is the strongest desire. We care in terms of black and white, one task after another, and the unwillingness to make a sacrifice for the love of another. Non-care partners patronize and abandon care partners in need. Family that was quick to receive help and a listening ear, now are silent when that listening ear requires one herself. Both sides belittling themselves, adding to the stigma of care.
The split between professional and family, skilled and unskilled, is only that much more palpable. What it means to be a mother, father, sister, brother, friend, community, physician, and therapist have changed, altered through social distancing, isolation, lockdowns, and the intense magnifying glass of our world today. We vilify the nuclear family, yet that is what has saved so many of us this past year. We don’t allow our doctors to care and heal, only fix and report as they look, beady eye to beady eye, unable to fully see the person they are in front of because of masks and shields. We have forgotten that we are all care partners. We have forgotten what it means to live in service of another, helping them live fully alive. We have forgotten what it means to be alive. We have become ashamed of the journey of care partner because it messes with our “perfect life” idea. As we all know, perfect does not exist in this world, and we all play many roles, with great visions for who we are and how we want to live. Maybe it is time to start factoring in the role of the care partner, to live in service of another, to create, little by little, a better world.
May we remember what we are all human. We are all facing our trails in search of our triumphs. We are all capable of living in service of another in ways that never deny us who we are but ask something of us and our love. May we remember that this journey can be one of back and forth, taking care of each other, honoring the family, AND the professional life.
We don’t need to be ashamed of the care partner role. Play it with pride, with joy, and with great comfort in knowing you are easing the suffering of another.