A Swing Set

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

Key Resources

Every Monday in July over on the Facebook page I featured books I see as Key Resources. Here is the recap.

Start with Yes! by Cathy Braxton and Tami Neumann

Weeds in Nana’s Garden by Kathryn Harrison

The Penelope Project by Anne Basting, Maureen Towey, and Ellie Rose

Being Mortal by Atul Gawande

 

May I Introduce​ To You…

Every Friday in July over on the Facebook Page, I introduced a few people that I follow. Many are dementia specific, others aging, and some about life.  I want to share with you today these individuals and organizations.

 

Distinctive Renovations (CAPS and UDCP)

Home and Place Podcast

Gianna Homes

Music and Memory

Chicago Dance Therapy

Momentia Seattle

Whole Care Network

Dementia Caregiver Talkshow

Dr. Bill Thomas and Hello Milo

Dementia Matters Podcast

PSS (Presbyterian Senior Services)

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.