Dementia as Trickster

Dementia is a Trickster! It changes what we know to be true about life. It upsets the plan. It causes us to shift the trajectory of our life and as a result, we learn, we grow, and we are challenged.

Dementia is a trickster that hides from us in times of introduction or brief meetings, it is the playful spirit that comes out, maybe for the first time, causing us to questions how well we truly know someone. It lures us into answering the call to transforming our work to become relational with our loved one all over again. It has us look over here while something else is going on over there. It hides the true meaning of an action, behavior, or word. It tricks both the knowledgeable and the under-trained. It tricks families, friends, the community. It tricks the person with dementia. It evolves and is quick, keeping us on our toes and our head spinning. It brings sadness, but it can also bring joy. It forces us to throw out the textbook and sometimes even the research so that we may best be present for a person with dementia in a new and different way.

As a dementia and creative engagement specialists, we work with the trickster to outsmart it, outplay it, outwit it. Sometimes we are successful, sometimes not. But we are not called to be smarter than it, but flexible, playful, and smart about how we approach it. The Trickster, with all that it does, can never take away the person, the personality, the life, the story that is in each one of us. It cannot take away our relationship, only invite us into a new way of being in relationship. It cannot take away interests, desires, gifts, and experiences, only shift how we see and learn about them. When we take time to get to know the person, as well as the dementia, we can play and grow together. We can continue the story, joining in or staying with this new chapter in the person’s life. A Trickster it may be, but a person they will always be.

Several years ago in a drama therapy class, I came to the conclusion that Dementia is the Trickster something more than a Master of Social Deception. In mythology, the trickster forces a change in the status quo. It is intelligent or has secret information that is used to play tricks on another person, or it breaks what we consider normal or appropriate behavior. It can be a terrible character and in the case of dementia can also be the one that brings out the best in a situation. The Trickster causes us to come face to face with the mortality of life, but also the playfulness of the human soul. In my personal notes, dementia was often written as Trickster, but it was not until I heard that Kyrié Carpenter also call dementia the Trickster that I wanted to share with thought with you. I was pleased to see that I was not the only one making the connection and am now interested if there are more of us out here. What framework do you use to think of dementia? Do you feel the need to think of it as a character? Does it help to think of the world as a cast of characters made up of a set of diagnoses? Or is it simply a diagnosis? Do you see it as harmful? Or, hurtful? Let me know.

A Home to Shelter and Give Life

“The ache for home lives in all of us, the safe place we can go as we are and not be questioned.” -Maya Angelou

Home has a fluid definition with a different answer given each time the word is brought up. Home is the topic of movies, TV shows, plays, songs. It is a place that is more than the structure that gives us shelter, but also the people and the life we live inside. It is personal, sacred, unique, safe. For some, home can be dangerous, tense, nothing more than an address. A home is frequently seen as a marker to how financially successful one is in life, though that is never what it should be. It is, in a phrase, a complex place filled with ups and downs, family and loneliness.

Entering into a further partnership with Distinctive Renovations, as we design a training and conversation curriculum, I think of the heaviness the word Home can bring for those living and working with dementia. Do you stay at home? Do you move in with a loved one? Do you move into long-term care? “I want to go home.”

In the world of aging in place, we, the care team and industry employees, fight over the terminology used and have long discussions as to how much technology should be used by our loved ones with dementia. We talk about the cost and the care needed. We get tunnel visioned, wrapped up in this spiral of thoughts and information that we and forget to check in with our loved one to see how they really feel about what home means to them. With many well-intentioned actions and decisions on the part of the family and care team, we forget the reason for the conversation and turn a difficult subject into a business decision instead of a personal one. How can we refocus on the one we claim, and in so many ways do, care for with dementia? How can they guide us?

I think we can start by asking ourselves, “What is home?” How do we define Home right here, right now? What about our home is transferable? Meaning what about the current home does not rely on this exact structure or location? What makes us feel safe? Most ourselves? What about home brings rest, relaxation, tension, stress? What don’t you like about your home? What about the structure makes this place home? Is it the neighbors? The nearby shops, parks, community organizations? The ease of moving around or the garden outside? Challenge yourself to deep dive into this topic for your self then ask yourself, “What if it all went away tomorrow?” What if a fall, a diagnosis, a financial shift caused you to have to pick up and leave? What can you recreate where you live next?

For those living with dementia, these last questions are the reality of their lives. As a member of the family or care team think of our own answers and use that as the foundation for a conversation with your loved one. Seek to understand what Home means to them. Look and see what the best place to age is for this individual? And, wherever they may live, help to make that place a home by incorporating elements both seen and unseen into this home that stem from the conversation. May each person be safe, wealthy in community, and able to live their life knowing that they have a home, one that does not question but shelter and protect.

The In-Between

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

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

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

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

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

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

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

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.


A New Partnership

Well, here we are three days after we last “spoke” with each other. Time got away from me and the posts just never made it up. It was a holiday weekend and I was spending it with my family, not always relaxing, but doing things somewhat together and for each other, and before I knew it the weekend was gone. Isn’t that what life and care are about? You spend time with family and friends focusing on what is important at that specific moment. It is not always sitting and eating ice cream together, nor is it trying to get to an appointment, it is a fluid and flexible mix of life’s tasks with life’s pleasures, spending time with each other in a variety of different ways. Now that the weekend is over, and some imaginative normality has set back in, allow me to pick up where we left off with a double post today.  

Last week we looked at where I have been with this work. What this last year has looked like, and what formation has brought me to the completion of one year. On Friday I introduced my present, where I would like you to enter into this story of ours. I invited you to write a letter. Please do! I will publish my example soon. Today, I want to talk about where we are going. I want to share with you a new partnership that has formed. 

The world of caregiving is made of many silos. You might have heard someone say this before. We are categorized with few pathways and bridges between the different thoughts and care models, and the different fields that work in the industry. Two of these silos are those specializing in dementia care and the remodeling industry. There is a gap of knowledge and communication between these two groups. Universal Design and Aging in Place focuses on the design and remodel elements but fails to connect with a dementia specialist, and a dementia specialist fails to partner with design and remodeling specialists. This brings about a new partnership between Distinctive Renovations and Bonae Memoriae. 

Distinctive Renovations is an award-winning Design, Remodel, Historic Restoration firm in Appleton, WI, specializing in making new designs flow seamlessly into the architectural style of the home, while serving the client’s present needs. Gary Fassbender, CAPS and Susan Fassbender, UDCP are the owners, and also my parents, although this is not a partnership formed simply because of our family connections. Our hope is that this new partnership between Bonae Memoriae and Distinctive Renovations can lead the charge, helping those living with dementia live well, regardless of where and what they call home.

It came about one night at the dinner table after I had experienced a webinar where someone talked about aging in place, but had no knowledge of remodeling, and my parents mentioned a client they were working with whose spouse has dementia and was looking for assistance. I saw a place where we could come together professionally and help others do the same, all while improving how individuals with dementia and their families live. Not everyone with dementia can live safely or well at home for any number of reasons, but for those who do find themselves able to live at home, after discerning the right path, they deserve every chance to be able to live safely, comfortably, and well at home.  Our hope is to start a conversation between professions, to help families seeking advice and help remodel or adapt their home, to help both parties understand the lens through which the other sees the job. 

We are just beginning. Our hope it to role out blog posts, educational tools, quick read information, and to be a consultant and open ears for CAPS, UDCP, families, individuals with dementia, and others.  A further post is to come that will help explain how to get in touch with us for consulting or training session.  

Bridging the knowledge of design and remodeling with the knowledge of dementia and aging.

To Build Our Community

Day Two!

Today is where you come in. Welcome! Yesterday we looked at the past, and today we look at the present. The tides are changing and so much good is happening. People are starting to include individuals with dementia into the conversation and the development of care. Families have access to more helplines, support groups, memory cafés, and other resources than ever before, and we better understand what legal and medical documents should be filled out, and what to questions to ask our doctors and care community staff. Finally, we are in a better position to do the best we can to support and continue to love our family members and/or friends with dementia through the growth of dementia friendly communities and the people interested in entering the field of aging. We are becoming creative, innovative, and bold in our approach to life enrichment and community building. This growth excites me and brings great hope for what the landscape will look like as we move forward.

Up until this point, you have heard from me, and have hopefully come to understand my point of view. Now, I would like to hear and understand what you see. The bigger we can paint this picture the brighter our community will become for all of us. So I invite you to write a letter, one that you can send to me that I will post on this blog, sharing the different journeys of dementia.

Here are the steps to take if you are interested in writing a letter.

Anyone may write a letter, it doesn’t matter how long or how short.

You can address it to yourself, your family members, the community, to dementia, to your doctors, to God, to anyone or everyone.

The letter will be your opportunity to share your story of dementia as a person living with dementia, caring for a loved one, working/studying in this field, or even address your own fears and uncertainties about this disease. You do not have to be directly impacted by dementia to write a letter.

You may sign it with your name, a pen name, or anonymously.

This letter will not be a way to promote your work or product. It will not bash any individual or organization. While I encourage you to be vulnerable and honest in your voice if we could keep it fairly clean in language that would be much appreciated.

To write a letter you may fill out this Google form.

I look forward to hearing from you, learning from you, and growing this community.

One Year!

ONE YEAR!!! Okay, maybe I shouldn’t shout, but I am happy to say it has been one year since I formalized my work with dementia into what I have been calling Bonae Memoriae. Over the next four days, I will be writing posts and sharing news about where I have been, where I am now, and where I/we are going. I want you to become a greater part of this story, of this experience, of this growth process. There is hardly a one size fits all when it comes to dementia. Each experience is different, each need is different, each life is different. That is part of the beauty and the struggle, and the reason all of us should answer the call to create something greater, better is within the needs and desires of a full and rich life.

So on this Day One of celebration here are a few highlights from this past year.

On May 24, 2017, I wrote a post called Her Signature, and thus this journey started. I danced circles as I worked to introduce this chapter of my work to you. I reflected on my Grandma Marie who had Vascular Dementia and the impact she had on how I view my work. Her voice and approach to life is very much a driving force for me in this field.

In the weeks and months since that moment, I met some amazing individuals, fine-tuned and expanded my work in Life Enrichment, developed training programs, and continued working as a Purple Angel Ambassador and TimeSlips facilitator. I spent my time in New York, Wisconsin, and Rhode Island learning, sharing, and helping others become relational with those with dementia by using creative engagement.

In January I became an AFA Dementia Care Professional.

In March I was on my first podcast hosted by Allison Lazicky and became a Certified Dementia Care Specialist (CDCS).

And now, May of 2018 I mark one year with great joy and filled with inspiration from the many people and organizations who work to help all of us live well with dementia and who invite us to look at aging and the progression of life in new and positive, real ways.

What’s next? Well, this was only my side of the story, come back tomorrow to join in Day Two of the celebration and find out how we may walk together.

Faith and Dementia

As some of you may know, I have started a ministry that partners my work with those living with dementia. It is called the St. Dymphna Dementia Ministry. Today May 15th is St. Dymphna’s feast day. She lived in Ireland in the 7th century and in addition to being known as a patron saint of psychologists, and those living with mental disorders, she is also the patron saint of those living with dementia. You may read more about her here.

This ministry was put in place to help those with dementia and their families continue to live their faith, in whatever faith they may live.  It is important to never strip away one’s faith because of a dementia diagnosis, yet we some sometimes don’t know how to help them practice their faith. That is where I am here to help you. I work through this ministry with parishes and other places of worship, and faith-based organizations as well as with families, guiding them through the process of helping loved ones and fellow members of the community practice their faith in this moment of their journey. I provide training, consultations, as well as faith-based life enrichment programming to help all living with dementia, live with dementia in faith. While I myself speak from the Catholic lens, I have connections with other faith leaders throughout the New York City area, as well as throughout North East Wisconsin.

Faith-based programming needs no research to back it up. Simply by willing the good of the other and helping them continue to seek and grow in faith in whatever capacity that may be, we are adding an unmeasurable amount of meaning and hope to their life.

So, if you, your faith community, or your loved ones are living with dementia and seek to learn about ways to continue practicing your faith with dementia, unsure how to go about it, please reach out to me. I am here to help you, to pray with you, to connect you with others of similar faith, and to support you.

True Experts

This week’s true expert is Kate Swaffer. She is a blogger, author, poet, and activist. She is a beautiful example of what it means to live well with dementia. She shows us what can still be accomplished despite/because of dementia. She shares a perspective that constantly makes me question and guides how I approach my work with dementia.

Join me in learning from the work of Kate Swaffer.

Her website:

Her Second website:

Key Resources

Much like the organizations and individuals, I shared throughout the Thursdays in April, on Fridays I featured organizations I see as Key Resources. These are organizations to have in your address book. If you know of organizations or individuals I should feature in my next series in July, please let me know in the comments or via a Facebook message.


Alzheimer’s Foundation of America

Toll-Free Helpline for AFA: 866-232-8484


24 Hour Helpline for CaringKind: 646-744-2900

Teepa Snow/Positive Approach

Fox Valley Memory Project