There Is No Place Like Home, Unless You Feel Homeless There

Last September, my husband and I moved from Norfolk, our home of over 10 years, to Arlington. We loved our community in Norfolk. There were our friends and neighbors, who were very much a part of our daily lives. The neighborhood in which we lived was tight-knit and inclusive. People knew me. When you passed someone on the sidewalk you always said “hello” and they said “hello” back. You would recognize people in the grocery store. When our house was struck by lightning, and the fire trucks arrived, multiple neighbors came running to make sure we were okay (they were particularly concerned that Blue the Elder dog was safe). There was a sense of community pride. We were involved in a number of community groups. I knew the people who were homeless. And they were a part of the community. We belonged to each other.

In Arlington we live in a lovely home and a lovely neighborhood with lovely people.

Last month we returned to Norfolk for a vacation. We rented a beach house so we could enjoy the Chesapeake Bay and made regular visits to our old neighborhood to see our friends. It was wonderful, and it felt like home. Yet, it wasn’t home anymore. We loved being there, and it was so comfortable, yet it was also bittersweet. Because we didn’t live there anymore.

This perplexed me. I didn’t feel like I belonged there anymore. And I don’t feel like I belong in Arlington either. I feel… homeless.vintage-1722325_1920.jpgSo, being a Revisionary Gerontologist, it got me thinking. A large part of my work with nursing homes and assisted living communities has been exploring how to create home and community for people living in long-term care. This is a fundamental aspect of culture change.

“Culture change” is the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the voices of elders and those working most closely with them are solicited, respected, and honored. Core person-directed values are relationship, choice, dignity, respect, self-determination, and purposeful living. (From Pioneer Network,

A key goal of culture change is for elders to feel “at home” wherever they live.

Yet, how often, and how much, do elders in nursing homes and other types of care communities feel that they do not belong? That they are homeless?

The comparison of living in a nursing home with feeling homeless is not a new idea. Judith Carboni published an article called “Homelessness Among the Institutionalized Elderly” in the Journal of Gerontological Nursing in 1990. Yes, you read that correctly. 1990. We have been talking about this, and working on this, for at least 28 years. And, unfortunately, this article is as relevant today as it was 28 years ago.

Based on her literature review, observations, and interviews Ms. Carboni suggested that people living in nursing homes experience feelings of homelessness, even though they are “sheltered”. It is important to note that homelessness is more than not feeling “at home”. It is an emotionally “painful experience that brings about deep, existential despair”.

She observed, “The closer individuals move to the state of homelessness, the less able they are to find meaning in the experience and consequently become more disorganized and confused… Because individuals are no longer able to integrate experiences and form them into meaningful wholes, they are left adrift in a strange and frightening world without meaning.”vintage-1722329_1920This experience of homelessness evokes “meanings of non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/ uncertainty, and meaningless space”.

There are several things that are very interesting, and devastatingly sad, about these findings. Clearly it brings to light how incredibly detrimental feelings of homelessness might be to individuals living in nursing homes. And we likely are not paying attention to it.

There are all sorts of outcomes we measure in nursing homes to evaluate quality of care and life. However, I do not think we really give due diligence to how many people are experiencing non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/uncertainty, and meaningless space. What would this look like? It makes me wonder about elders I have seen in nursing homes who seem to be “settling in just fine” because they are not voicing complaints, sadness, or loneliness. But are they feeling homeless?

Interestingly, Ms. Carboni found that a key coping strategy for elders living in nursing homes was what she called “pretending”. What does pretending look like?

  • Living in the past – in their minds, returning to where they have felt at home in the past
  • Keeping the secret – outwardly acknowledging this is their home, but inside denying this is their home
  • Distancing –  not getting involved with other elders to avoid seeing other people’s sense of homelessness that mirrors and reinforces their own homelessness
  • Surrendering – Giving up and feeling there is no choice – “what can I do?

Are elders “settling in just fine”? Or, are they great pretenders?

Another thing I find interesting is that a result of homelessness is disorganization and confusion. While we might (misguidedly) attribute disorganization and confusion to being old, or having dementia, how much of this is related to feelings of homelessness? vintage-1723763_1920.jpgEven more concerning is this ongoing theme in which people living in nursing homes, who feel homeless, who do not feel they belong, lack meaning. That might be the case in spite of the many well-intentioned ways we attempt to provide opportunities for engagement (in other words, recreational programs, visiting, socializing, etc.). Perhaps this is because we do not always know what is important to people. Or we make assumptions about what people need or what is best for them. It is important to note that “belonging” means many different things for people, and it is not always about social connections. For some people, they can feel that they belong, yet be by themselves, happily reading a book. This gives them meaning.

To take that a step further, if you are living in a nursing home, and are feeling homeless and lack meaning, how might you act? Maybe you would try to leave. Maybe you would stay in your room. Maybe you would allow yourself to be conditioned by the routines around you, because they don’t really mean anything to you anyway.fairytale-1735412_1920.jpgWhen we compare living in a nursing home to homelessness, and really understand the lived experience of homelessness, we see that homelessness is not as much tied to having a physical place to live as it is to the meaning we assign to where we live. In other words, you can live in a lovely home (like me), or a beautiful nursing home, assisted living community, or 55+ community, and still feel homeless.

There is also the great likelihood that feelings of homelessness are not just experienced by elders in nursing homes. Maybe people growing older or growing with dementia feel this way regardless of where they live – maybe they feel like they don’t belong in our society.fairytale-1735327_1920.jpgI see these themes – not belonging, not being seen – quite frequently, in nursing homes and assisted living, and in our own neighborhoods. Quite honestly, I see them so often that they are the norm. We have got to do better. But how.

Perhaps one way to consider this is to think less about the problems (e.g. time, money, resources, regulations, etc.), and think more about the possibilities. Because this, in fact, is about building community.

Peter Block, in one of my favorite books, “Community: The Structure of Belonging” says:

“Community as used here is about the experience of belonging. We are in community each time we find a place where we belong. The word belong has two meanings. First and foremost, to belong is to be related to and a part of something. It is membership, the experience of being at home in the broadest sense of the phrase. It is the opposite of thinking that wherever I am, I would be better off somewhere else. The opposite of belonging is to feel isolated and always (all ways) on the margin, an outsider. To belong is to know, even in the middle of the night, that I am among friends.”

How can we facilitate creating communities where elders and people living with dementia feel they BELONG?

How can we create communities where people feel they are a PART OF SOMETHING?

How can we create communities in which elders and people living with dementia KNOW THEY ARE AMONG FRIENDS?

Instead of building homes in which people feel homeless, let’s build communities where people belong, are a part of something, and know they are amongst friends. I have felt these things in a community. And I hope you have too. It is possible. Let’s make it possible for people growing older or growing with dementia. Because we are not building communities for THEM. We are building OUR community, in which we all live.



Seeing Reed

A few months ago I went to the funeral of my friend, Reed. Reed was five years old.

There are no words to describe the pain and sadness of this loss for his family and friends.

To honor his life, I wanted to share a few things about Reed.

Reed was beautiful, with curly, crazy hair, an infectious smile, and a curious spirit. He loved pushing things like toy trucks, or carts. He had a great wiggle when he got excited. He was so happy when he was swimming.

Reed also lived with Fragile X Syndrome, a genetic condition that causes a range of developmental challenges.

I knew Reed from when he was a little baby. My husband and I are friends with his parents. We would often go to their house in the evenings, and the grownups would drink wine, play games, and talk for hours. But we got to be with Reed until he went to bed. I held him and played with him.

I remember how mesmerized I was with his huge eyes, which watched you intently. It made me feel that there was something almost divine in that baby body; his eyes were full of such expression and wisdom.

John Hain,

One day when Reed was about two, I was finishing a run in our neighborhood, and passed their house. Reed’s mom was on the front steps, waiting for Reed’s bus to drop him off. I stopped and waited with her. When the bus pulled up, she went to the bus and retrieved him from his seat.

Reed was so tired and laid his head on her shoulders as she carried him towards me. His eyes were sleepy and serene. When she got close to me, Reed suddenly put out his arms to me, and hopped onto me, laying his sweet little head on my shoulder. Reed’s mom and I smiled and laughed in surprise.

My heart swelled. It felt so nice to be wanted by Reed. I was so glad I could provide a shoulder for him. It was one of those pure moments when you feel so connected. Like you both belong.

John Hain,

One Halloween, Reed and his family came by to trick or treat. I was dressed as Miss Piggy. He took one look at me, and yelled, “OFF. OFF. OFF” and grabbed at my blond wig. He wanted to see me, not Miss Piggy. It felt nice to be seen.

Although there is no one like Reed, there are souls like him in our midst. We just have to see them. See each other.

“Discover the gift of who each person is, and then invite people to live in each other’s hearts…. And then hope that people will not only discover their gift and their own goodness but that they’ll live out of that place with each other….”

– Father Greg Boyle, author of Tattoos on the Heart and Barking to the Choir

There is so much we can learn about each other. It makes us better for ourselves and each other.

Perhaps we can try living so that we assume that every person we meet teaches us something. That they know something we do not know, but can tell us if we listen. We can see this in the eyes of every person we meet, people of every age, background, life situation, or diagnosis.

Reed’s mom shared this amazing video with me a few years ago. To me, this is the definition of pure joy.

I hope it brings you joy, and thank you, Reed, for the joy and lessons you have brought to all of us.

Blue the Elder Dog

Sometimes being a Revisionary Gerontologist can get me down. There are a lot of things that need to change in how we see people as they grow older and grow with dementia, and how we support them. The negative, deficit-based, overly medical paradigm is so pervasive and so deep. What to do? Sigh. I get very frustrated, and then a little despondent.

And when that happens, I watch videos of capybaras babysitting puppies (seriously, look it up). That makes me smile, and then the happy hormones sustain me.

I also happen to have a source of animal happiness living with me, and I go to him when I am in need of rejuvenation. His name is Blue.

Blue is thirteen and a half, so he is an Elder Dog.


Blue is an Australian Shepherd, very smart, tennis-ball obsessed, beautiful, soft, afraid of large black dogs and children, very fond of loud sighs, has a great “side-eye”, and is the strangest combination of serious and silly that I have ever witnessed.

Blue also has diabetes, exocrine pancreatic insufficiency, arthritis, is nearly deaf, and mostly blind.

And he is the best dog he has even been, because of all these things that make him who he is.

As Blue has grown older, he has taught me a lot about aging and living. Here are some of the things I have learned.

1. Blue is still him. And he is changed.

Blue will always be Blue. And, each day he also evolves into something new. Both are true.

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2. Focus on strengths, not just weaknesses.

I realized that, when I was talking about Blue recently, I was only talking about his “deficits” – his diabetes, his trouble moving around, his lack of hearing and vision. But that is not all that is Blue. Blue is many other things too. And those things are pretty great.


3. Curiosity never gets old.

As a puppy, Blue was very mischievous. At the time, I probably did not appreciate it very much. But now, I love to watch him be curious. It is the essence of his spirit.


4. All behavior has meaning.

We hear this said about people living with dementia, in particular, but this certainly applies to each one of us. Our actions often speak louder than words. Sometimes we need to “listen” to what someone is telling us without words. In this picture, we were on day 10 of an RV trip, and Blue started sitting on the table in the RV. At first I thought we had entirely broken his spirit on this RV trip. But then I realized he was tired of being on the floor, where he could not see anything from the confines of the RV. He wanted to see what was out there. So he took matters into his own hands.


5. There is always room for play.

As a herder, Blue always loved playing with tennis and soccer balls. We recently learned, after him getting clocked in the head a few times, that he couldn’t see the ball very well. So now we play differently. He still brings us no fewer than 5-6 tennis balls to remind US to make room for play.


6. Enjoy simple pleasures.

This winter we stayed at a mountain cabin. It was still chilly- the mornings were in the 30’s. But we had such a beautiful view from the deck that we would bundle up and have our coffee out there each morning. Blue joined us too. He developed a habit in which he would go out to the deck, wait for us to place him in the chair, and snooze in the early sun for several hours. He did not care about where we were or what we were doing. We was unfazed by the cold. He just wanted to be basking in the sun. I was amazed by how peaceful he looked. The picture of contentment. And when he was done, he would bark for us to take him down from the chair and go inside.



7. Take time for rest, and when you do it, do it well.

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8. Interdependence is not all bad.

Blue has always been fiercely independent. I have called him a “loophole” dog because, ultimately, he finds a way to do what he wants to do. However, he has leaned into his increased dependence on us, and waits for us to carry him up and down the stairs, or lift him onto the couch.

And, we so depend on him for his love. And, how he makes me laugh at least 20 times a day because he is so ridiculous. And, because he is now such a cuddle-bunny.


And, because a Revisionary Gerontologist sometimes just needs Blue the Elder Dog to help her bask in pure joy.

Maybe this brought you some joy too.


Being Seen: A Passion Project

I was in an assisted living community, about to facilitate a workshop for the people who worked there. It was a “memory care” community, a place that specifically cares for people with Alzheimer’s or other types of dementia. I was milling around, chatting with people. This lady, who lived there, was watching me from across the room. She wheeled herself to me, almost furtively. She grabbed my hands in hers and looked right at me. She had huge, beautiful brown eyes.

She said, “Were you a dancer?”

I was a surprised by the question, because I was. I had danced ballet until I was 15. And I had seriously considered pursuing it professionally.


“Yes”, I replied. “But I stopped.”

She nodded seriously, in an understanding way. “Why did you stop? Were you afraid you would not make it?”

I answered, “Maybe……”

She looked deep into my eyes. “Don’t worry. I can see in those eyes that you are going to go far.”

This was a woman who was living with what we might call “moderate to severe dementia”.


She saw me. And I saw her. She was beautiful and kind, and her words made me tear up. I was seeing her, for who she was at that moment. But did other people see her?

I think about this a lot. That we not only ignore aging in our society, but we really don’t “see” people for who they are as they grow older and grow with dementia. We see lots of things about a person – their wrinkles, their wheelchair, their walker, their diagnosis. But we don’t SEE them.

People tell me that they feel invisible as they grow older. I hear this theme in the many conversations I have with elders living in nursing homes and assisted living communities. They tell me this in different ways. Sometimes, they tell me by making it clear that they do not want to be a “bother”. Other times they tell me by saying they don’t matter – that there are other people who have needs too. I see their invisibility when people pass them and do not acknowledge them. When they are treated as if they are not there.


This invisibility extends outside the walls of nursing homes and assisted living communities. I see it in doctor’s offices, at the grocery store, and in my own neighborhood. This invisibility is even in research, when we group people into categories such as “frail” or “active”. When we generalize millions of people growing older and growing with dementia by putting people into neat little boxes.

People living with dementia tell me they feel particularly invisible. Maybe their friends and families don’t talk to them as much, or maybe not at all. Maybe people see them for just their “losses”, or maybe they create an image of who they think a person with dementia should be.

Yet, each person is a unique human being. Time, cognitive changes, and change of living arrangements do not diminish who a person is.

Invisibility is the opposite of visibility, of being seen.

A basic human need is to be seen. But what does this mean? Do people actually feel like they are being seen, especially as they grow older? Why or why not? When do they feel seen?

I think that all people deserve to be seen. To tell or show us who they are. For us to be ready and willing to take this gift.

We need to see each other for who we are as we grow older and grow with dementia – who we have been, who we are now, and who we will be. We need to be curious about each other as we grow older.

I believe we have to change the way we see aging, and that starts with seeing individuals who are growing older. I believe that the more we see older people for being people, we will do better at how we treat older people, and maybe even change the way we support each other through services and care. Maybe we will find better ways of actualizing what matters to people as they grow older and grow with dementia, and how they want to live. When people are seen, when we see people, we feel more connected to each other.

So, I have started a little passion project.

PicMonkey Collage7

Being Seen is a project about providing a place for people to be seen as they are growing older. Being Seen is about not seeing people for their age, but for who they are at their age. Here is what I know about Being Seen thus far.

Being Seen is not about presenting portrayals of growing older that are positive or negative, successful or not successful, frail or active. It is just people being who they are. I mean, who am I to label their experience?

Being Seen is not about interpreting people’s experiences through our lens. It is about giving people the mic to tell us who they are.

Being Seen is not just who a person was – their life story. It is also who they are today.

Being Seen is about changing the narrative of aging by creating a new narrative, one that is made from elders themselves. Being Seen is about honoring who people are, as individuals, as they grow older. Each person is unique and has their own story. The story we have created about aging has not been built from the ground up. Let’s “go back to the root” and see people for who they are.

Being Seen shares vignettes of people who are growing older and growing with dementia. The definition of vignette is “a brief evocative description, account, or episode”. In the context of photography, a vignette is often regarded as the darker corners around a photograph. The things that we do not look at. But they are there.

These vignettes might be quotations, photographs, or more lengthy interviews. Elders in these vignettes will be from multiple types of communities, from “typical” residential neighborhoods, senior apartments, as well as elders living in nursing homes and assisted living communities.

being seen1

Here is what I do not know about Being Seen – what I am processing and gathering ideas about.

How can I create a place for people to be seen? Is Being Seen a website? A social media site? A blog? A book? A film?

Being Seen is about seeing people for who they are as they grow older and grow with dementia. So, does it target specific age categories, like 55+? Technically, we are all growing older, and people living with dementia vary in age.

What do I ask people to get to the nugget of being seen? What questions help us to see people? Are there specific questions? What does it mean to be seen or not be seen?


So, I need help. I would like you to be a part of this conversation about what it means to be seen. And, to contribute to the story of who we are as we grow older. Here is what I am asking of you.

Consider answering these questions.

What does it mean to be seen?

At your age of [fill in your age], what would you like people to see about you?

At your age of [fill in your age], what makes you feel like you are being seen?

At your age of [fill in your age], who are you now?

You can either share your answers in the comments below or you can email me at

I can’t wait to SEE you.

Hug a Gerontologist: We are Having an Identity Crisis

Screenshot-2018-3-21 Keep Calm and Hug a Gerontologist T-Shirt
This is an actual t-shirt you can buy from

Please hug a gerontologist next time you meet one. I do mean a gerontologist, not a geriatrician. I do not mean to not hug a geriatrician. Go ahead and hug them too if it feels right. I have some friends who are geriatricians and they are, for lack of a better term, “the cat’s pajamas”.  What I mean is that gerontologists, specifically, need some love because we are having an identity crisis.

How do I know this? Here is some evidence.

Almost every time I meet someone and tell them I am a gerontologist they ask me medical questions and where I see patients.  You see, I am often mistaken for a geriatrician, who is a medical doctor specializing in the health of older people. I make it very clear to people that I am not a medical doctor. In fact, I have anxiety that I am going to be speaking at a workshop one day and someone is going to yell “Is there a doctor in the house?”  People will point at me, and I will not be able to help as I have no medical training. Yes, it is true. Gerontologists generally do not have medical training, unless they are also physicians, nurses, or other medical professionals.  Do we have some knowledge of the medical aspects of aging? Sure. Just as we have knowledge of the psychological, biological, social, and spiritual aspects of aging. We are trained to think broadly about the aging experience.

This leads me to another aspect of the identity crisis. It is sort of our fault.

You see, we have really not done a good job of explaining who we are. We really have not owned the uniqueness of gerontology as different from other disciplines that study aging. Lots of other fields of study focus on aging, like psychology, biology, social work, etc. And it can be quite confusing because a psychologist can also consider herself a gerontologist, or a nurse might be a gerontological nurse. Sometimes I am not sure if we know who we are. And I think this had led to missed opportunities in how gerontology as a study and practice can truly be something different.


I realize that no one is asking me to be the Leader of the Gerontologists, but in the spirit of being heard, I think we need a revolution in the field of gerontology, and it starts with reclaiming and re-framing our identity. This is important because the paradigm of aging needs to change. When I say the paradigm needs to change, I am not talking about “those people” need to change. I am talking about all of us, even gerontologists. Perhaps, as gerontologists, we need to be leading the way. However, in order to do this, we need to articulate and embrace our identity, and it needs to reflect a different paradigm of growing older.

In my mind, gerontology is unique because it is the multi-dimensional view of growing older. The very nature of this recognizes that growing older is complex and individual. The idea of gerontology as multi-dimensional, complex, and individualistic needs to be clearly articulated, and operationalized through education, research, practice, and policy in aging.

We are an important companion to our great sister, geriatrics, which also seeks to integrate various aspects of medicine and wellness. To that point, promoting and emphasizing gerontology as a non-medical study of aging is an opportunity that we need to claim.  Because so much of aging is viewed through a medical lens, the field of gerontology is positioned to offer a wider lens of aging by continually trying to understand the multi-dimensional experience of  growing older and applying this knowledge in supporting people to live fully.

Gerontology is about the lived, individual experience of growing older. This is inherently person-centered. This means that central to gerontology should be the voices of people growing older. This also means that we have to take a good look at the “expert culture” in gerontology that positions professionals as holding more knowledge and power than elders, and possible discounting what is important to people as they grow older. Are gerontologists truly “experts” in aging? Or, do we simply offer a perspective of growing older?  What is our role? Are we facilitators of all these dimensions in the multi-dimensional, individual experience of aging? Is our job to infuse this into everything we do?

I have an idea that maybe helps us to think about this. I have a new definition of aging that I have been mulling about.

Aging is the process of becoming oneself.


If that is true, then gerontology is the study of becoming oneself as we grow with age. When I think of the idea of becoming oneself, it means both evolving, which is continually becoming something new, and rooting, becoming even more deeply who you are. In some ways, then, could gerontologists be midwives of growing older? In fact, a definition of midwife is “a person or thing that produces or aids in producing something new or different”. Gerontologists could be those people who “midwife” the experience of aging as a multi-faceted, individual experience, by viewing all aspects of a person. We could bring the lived experiences of individuals who are growing older to everything we do.

I think it is time for gerontologists to really think about who we are. Maybe even to challenge who we have become and whether it is who we want to be. We have such an opportunity here, to midwife, in so many ways, something new. But it would help us if we had hugs.



A Story of Mine to Share

One of my oldest memories of my grandmother is when she was sick.   My mom says she was sick for about eight years before she died and I was eight when she passed away so she must have been sick the whole time I knew her.  I don’t think I realized how sick my grandmother was. I remember she did not go out of the house a lot.  She spent most of her time cooking, it seemed.

In this particular memory, she was crying and she said to me, “Sonya, do you want to see how they are hurting me?” And she showed me her arm, which was bruised and had a small wound from a blood test.  I didn’t know who “they” were but imagined them to be pretty horrible. In retrospect my grandmother had a great sense of humor, sharp and somewhat teasing, so I don’t know if she was teasing me.  I remember her smock that day – the blue one with the patches of flowered fabric.  I especially remember the way her hands looked. They were worn and veined, but always soft from the Crisco she used for, well, everything she cooked. She was sitting in their kitchen, which is where I always remember her. I remember her being small and fragile and soft-stepping.


Yet I also know she was strong and resilient and solid. I remember that she SAW me.

When my grandparents died, I was very worried about them. They died almost exactly two years apart and I imagined they were in heaven together, but I was not sure. As the good Catholic School student that I was, I prayed for them every night. I believed that I could talk to them in my prayers so every night I spoke to them in my prayers.  Naturally, they did not answer back, but I felt that they could hear me and it comforted me.

When I was in graduate school, I took a course in group therapy techniques.  During one of the classes we discussed how people achieve closure upon the death of a loved one and how therapists need to be aware of how this need may manifest.  Our professor described how after his father died he had dreams of a figure who represented his father (it was actually the character played by Jimmy Smitts in the TV series “NYPD Blue”) and this represented needed closure for him.

A few weeks after this class I had a dream.  I woke in one of those groggy states in which what just happened in your brain is still so new and incredibly, heartbreakingly real. In my dream, my grandparents came back to me.  They came to see me at my age, which at that time was about 26.  When my grandmother saw me in my dream, she just cried. Then they told me that they were okay and they were obviously together.  They gave me gifts – gifts inappropriate for that time and my age, gifts for a child.  But I loved them. They gave me a few coins and some trinkets.  My grandmother told me, “I am so sorry that I missed all these years of yours. I am so sorry that I missed you growing up.”


I had felt for many years that I never fully had closure from their deaths.  And this dream gave me a sense of peace because my grandmother was able to see me now and because I knew that she also missed me as much as I missed her.  It gave me tremendous peace to know that they were together and are whole.

Death can be scary to a child, but my parents were very open about it. They demystified it for me. They told me it was a part of life. They told me that my grandmother would always be with me. And she is. She is a part of who I am. And that is why the telling of this story is important. Because it is MY story. It is who I am.

We all deserve to tell our stories.


“Stories must be shared. We live alone, we die alone, and we write alone. But a journey that is not shared is a poorer one. To be ‘seen’ and ‘heard’ by others defines identity. The process does not end at a certain age. Something is added to my life if someone, with an open mind, listens to my story, hears my music, and sees what I have created.”

Written by Ragna Adlandsvik, a Norwegian educator who created writing groups for elders, and quoted from the book “Narrative Gerontology in Research and Practice” by Kate de Medeiros (pg .25)

More about this soon…..

Behavioral and Psychological Symptoms of Sonya


Hi. My name is Sonya and I have behavioral and psychological symptoms of Sonya (BPSS). Yes, it is true. You see, sometimes when I am doing something I don’t want to do, I get agitated. And then there are the times when I am tired or not interested and I have apathy. The other day I was combative when my husband tried to feed me a strawberry and I pushed his hand away (I really do not like being fed by others, although I really like strawberries.). I irritably yelled at my computer for several minutes this morning when I read the headlines. I am anxious any time I have to drive in this heavily congested area. Unfortunately, I also am paranoid. I KNOW that my husband took the car keys and hid them from me.

Maybe you are saying, “Sonya, what are you talking about? BPSS? Why can’t you just say you are angry or anxious? Why the labels? You are so weird.”

Maybe you are also wondering to yourself whether you have some form of BPSS. “I get angry too”, you might be saying to yourself. In fact, you are getting more angry and anxious as you read this. “Sonya, where are you going with this?” you are thinking nervously.

Have you noticed that we take actions of a person with dementia and ab-normalize and medicalize them? I have.

There is a term, called Behavioral and Psychological Symptoms of Dementia (BPSD) that is used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes.

A 2012 study¹ said that 90% of people with dementia have BPSD. Hmm. What percentage of the general population has BPSD? 100%?


I experience these symptoms and as far as I know, I do not have dementia. So, if I have them, and you have them, what are they symptoms of? Maybe of being human? So, because I do not have dementia, they must be Behavioral and Psychological Symptoms of Sonya. And if we are going to describe them that way for people with dementia, it is only fair that I describe them this way for myself.

Note: For the purposes of this article, I will refer to these “symptoms” instead as actions or expressions.

In everyday life we use these terms to describe our actions. They are, for the most part, considered “normal”. Yet, we seem to have a double standard when we are talking about people with dementia.

A person without dementia might be angry because he does not want to wake up. But a person with dementia is agitated when he does not want to wake up.

A person without dementia flirts with the waiter and it is just flirting. A person with dementia flirts with the waiter and she is disinhibited.

I am in no way minimizing the seriousness of these expressions/actions. These expressions are very distressful for both people with dementia and those who care for them. They are very real. But I want to suggest that they are not abnormal. They are human responses.

Being with many people living with dementia, and those who care for them, has taught me that living with dementia is very, very hard. People with dementia are doing the best they can. They are trying their best to make sense of everything and everyone around them. Because they are human, of course they are going to experience the same human emotions as any of us. If not more, because of the challenges of living with dementia. Their actions are expressions. Normal, human expressions to what are often experienced by them as abnormal situations. I have sat with many of these humans, and heard their experiences. They made me change the way I thought about their “behaviors”.

For these reasons, and more, we need to reconsider this term of BPSD. Perhaps more importantly, we need to think about the meaning behind it.

I understand why we use this term. We needed a way of describing some things we were seeing, so we created a term. But there is a danger in this term that is bigger than these words, I am afraid. Because a term is often, if not always, a reflection of a paradigm.

When we define these actions and expressions as symptoms, we do several things:

  • When we describe these expressions as symptoms, we medicalize them. We also then frame them as “abnormal”.influenza-156098_1280
  •  We are suggesting that the only explanation for them is the underlying medical condition of dementia. Then we are less inclined to try to understand the reasons behind these actions. They are “just what people with dementia do”. When we don’t understand the reasons, or what people are communicating to us through their actions, we are not able to meet their needs.
  • When we medicalize expressions that might be normal for the person and his or her situation, although abnormal to us, we also contribute to a paradigm that sees people with dementia as different than us. Because WE certainly don’t ever have those expressions, but people with dementia do because of their dementia. A very concerning possible consequence of seeing people as different than us, “othering” them, is de-humanizing them.
  • When we frame expressions in medical terms, as a medical problem, the next step is to try to address them with medical solutions. This might mean using antipsychotics unnecessarily.
  • To take this a step further, when we frame these expressions in medical terms, even if we are looking for non-medical ways of addressing them, we still see them as medical problems to be addressed by these “non-pharmacological” solutions. The challenge with this is that we are still limiting ourselves to seeing these expressions through a medical lens, rather than trying to understand what they might mean for that person, and trying to address the underlying reasons behind the expressions, whether they be unmet needs, or emotional distress. Even a non-pharmacological solution can be a band-aid and not address the reason behind a person’s action and what it

We are already seeing ramifications of this paradigm in how we view and treat people with dementia. One of these areas is in the use of antipsychotic medications, which are used to address BPSD in people with dementia. A recent report by Human Rights Watch reiterated the overuse of antipsychotics for people with dementia. The article pointed out various possible reasons for overuse. Unfortunately, they are not untrue. Not having enough staff and training to meet the needs of people with dementia is unfortunately real in too many cases. In some cases, these medications are used for convenience. However, in my experience, I think it is more often due to people not knowing how else to respond.

Yet, I think it is something much bigger. It is a reflection of this paradigm of dementia – the story of dementia that we have told ourselves for too long. This is the story that tells us that the way people with dementia act are symptoms or “behaviors”. The story tells us that not only are behaviors bad, they are not normal. Because they are abnormal medical problems, we need to address them with medication.

However, what we are neglecting in this story is this – the way people act, i.e. behaviors, are not abnormal for them. In many cases they are perfectly normal responses to how a person is experiencing the world around him or her. They are an expression of what a person is experiencing, what she or he is telling us, and what needs we might not be meeting for a person.


Yes, it is true that there are changes in the brain that happen as a result of various types of dementia that influence the way a person acts. Parts of the brain that regulate emotions are affected, making it more difficult to control various emotions. There are indeed various part of the brain that cause a person with dementia to see and experience the world differently. So yes, dementia changes the way we might act.

I am also not dismissing the intent behind terminology such as BPSD – to attempt to understand and help people with dementia.

It is for all these reasons that we have to think differently. There is too much at stake, and we want and need to do better for people with dementia.

This term of BPSD can perpetuate a paradigm of dementia that does not honor the human experience of dementia. Who people are as individuals. What they need. What is important to them.

It is time for a new paradigm. One that sees people with dementia as no different than us. That strives to see things from the perspectives of people with dementia so we can find better ways to support them. A paradigm that truly sees people with dementia as whole, not broken. And one part of building a new paradigm is to critically and respectfully question how we are describing and thinking about the way people with dementia act.

Note: I am well aware that I am not alone in this desire to change the paradigm of dementia. I am being heard here, with my own voice, but know that there are many who are in this together. They are people living with dementia, their care partners, and people whose professional lives are dedicated to making life better for people with dementia. I learn from them every day. Rather than speak for all of you, I hope you will chime in, as much more needs to be said.

¹Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and Psychological Symptoms of Dementia. Frontiers in Neurology, 3, 73.

Feeling(s) Unwell

So, I have been sitting around all week, sick with the flu/cold/crud, coughing incessantly. Yuck. Our dog keeps looking at me, as if to say, “Why are you barking all the time?” Now he knows how WE feel.

Whenever I am sick, I think about people who are living with chronic illness. Or any illness, for that matter. I think about them because here I am, feeling unwell all day, for just several days. Imagine feeling unwell every day. Or most days. Imagine being in pain most of the time.

There have been periods of time in my life in which I have experienced this. I had regular migraines for several years. I had chronic pelvic and hip pain throughout my late teens and twenties. I remember being surprised at the emotional aspect of pain, one that no one talked about, but was always there. Frustration, joy, sadness, anger, gratitude, hope, hate.

I am certainly not comparing these experiences to others’. But the fact that we all experience illness and pain, in different degrees, does give us perspective, and perhaps a foundation for empathy, in trying to understand the experience of illness and pain. It is a universal human experience.

When I think about illness and pain, I am struck by the often disregarded emotional aspect. I am made aware of this, not just through my own human experience of pain and illness, but through the many people I have sat with who are ill and in pain.


There are so many emotions you hear when you are with people who are unwell. Some are clearly articulated. And some are just under the surface when people are struggling to appear “normal”. The emotions of feeling weak. The sadness and loss of not being able to do the things you want. The anger and gratitude of dependence on others. The overall emotional energy it takes to function. The joy in moments when you feel GOOD.

And, I think about how we do not really, truly take into consideration this emotional aspect of not being well. Of course, there are overall concerns about our lack of attention to mental health. A lack of attention to depression and anxiety, and other conditions. But I’m talking about more than that. I mean the everyday, wide and deep, emotional experience of being unwell.

I am concerned about how/whether we are aware of, and attending to, the emotional experiences of people who are ill and in pain who are growing older, who are growing with dementia, who are living in long-term care communities, who are living in our neighborhoods. How much of this emotional experience of being unwell is even considered in how we see them, how we interact with them, what we ask of them, and how we can better support them.  I mean, especially for people living in nursing homes, nearly every person is there because they are living with an illness. And, for many of them, they are feeling unwell. Certainly, this has got to color their whole world. But are we in the same world with them?

I can remember working in nursing homes and assisted living communities, and inviting people to join some group activity. It is such a normal interaction in these settings – my job is to convince this person to be involved in activities (benevolently) and I expect I will be met with some level of misgiving. And I remember having these almost existential moments in which I would see myself asking an elder, 96 years old, with severe arthritis, nearly blind from cataracts, to join in the trivia group. On so many levels, it became strange. But I would every so often wonder, how does she have the emotional strength to do this? To get up every day. To keep going. And now I am asking her to be a part of a trivia group. What am I doing? Is this okay? I want to help her. But am I making it harder for her? Am I making her dig even deeper into her well of emotional strength to come to this game? Are there other things she would spend that emotional currency on?


Do we really acknowledge the everyday emotional experience of being unwell, in the sense that this is an experience that likely underlies everything in a person’s world, and perhaps influences every aspect of their living? And how is this manifested in our everyday interactions with them? Are we aware of how much it is there, this emotional undercurrent?

Wendy Lustbader, who I am proud to consider a part of my world, wrote this amazing book called “Counting on Kindness: The Dilemmas of Dependency”. In it she says:

“Those who have had their wings clipped by illness or old age feel the need to do something “crazy” to remind themselves that they are still able to exert influence, if only over their own domain or their own body. This need conflicts with their feeling obliged to give full cooperation to their caregivers. When other means of repayment are lacking, compliance does become the only resource that can be exchanged for sustenance. Those with personality styles that prevent their squelching themselves in this manner lack even the power of compliance. Instead, they turn their helplessness into its reverse, commanding their helpers to follow their exact specifications and blasting their helpers with anger when their directives are not heeded.” (page 21)

Maybe this is how the emotional experience of people who are unwell manifests sometimes. In demanding autonomy. On some level. On levels that seem small to us, but are not small.

Or maybe it looks like this:

“Mustering the courage to usurp gloom is not a once-and-for-all attainment. No sooner do we become accustomed to one set of conditions than illness imposes others. We have to keep devising satisfactions and then releasing our hold on them. Swinging from gratitude to bitterness and back again, the cycle moves with a fierce complexity. We either acquire enough flexibility to open ourselves to new consolations, or bitterness prevails.” (page 42)

Perhaps, then, what we see is, “I don’t understand. She liked going on walks last week. Now she yelled at me this morning when I said I was ready for our walk, and this afternoon she asked me to go with her outside.”

So, what is there to do?

I am not suggesting that we need to break into the emotional world of others, to feel what they feel, to expect they tell us what is happening in their heart and mind. To “fix it”. I am not sure that is for us to do. We do have to listen for it, though.


We have to honor that there is an emotional experience of being unwell. It is likely larger than we know. It is complex. It is not all negative. And, as for all of us, this emotional world in us is so deeply and personally a part of us. To not acknowledge it is to not acknowledge another universal human experience. And that can lead us to DE-humanizing.

The lovely artwork in this post is from Gerd Altmann.


Being Sensitive about Sensitivity Programs

For many years now we have had various forms of aging and dementia “sensitivity” programs. The intent of these programs has been to create awareness of the experience of aging and/or dementia, and perhaps, to foster empathy for challenges experienced by people who are growing older or growing with dementia. For aging, these programs have often included glasses smeared with Vaseline to demonstrate how an older person might see the world with glaucoma or macular degeneration. For people with dementia, it might be a simulation of sensory changes such as voices heard through headphones.


I believe these programs have been well-intentioned. And, perhaps, they have placed on the social radar the need to have awareness of the experience of aging and dementia. Yet, I would like to ask us to stretch our minds a little more.

A great blog by Ashton Applewhite in 2016 addressed these programs by asking, “What do they actually teach?” In the blog she and others pointed out concerns about these programs teaching stereotypes about aging, focused primarily on the negative, as well as neglecting the individual experiences of growing older and growing with dementia. Ashton expressed her concerns that, although these programs create awareness, and teach a story of aging, it is not necessarily a vision of aging that is accurate, universal, or even helpful. It could actually be damaging.

I agree. I would like to pick up this topic, from my own voice, and carry these concerns a step further, as well as offer some alternative possibilities.

I would add the concern that sensitivity programs can contribute to our feeling that older people or people with dementia are different than us – “those people”. It is “those people” who have these challenges like cataracts, macular degeneration, or cognitive changes, not us. Meanwhile, any one of us can and do have these challenges. It sort of feels like we are outside looking in, which doesn’t feel very sensitive. So, here is a question:

Doesn’t it strike you as strange that we need to create simulations of aging and dementia when we indeed have real people with dementia and people who are growing older who we can ask about their experiences?

I mean, do we NEED to simulate aging and dementia?


I have an alternative.

Let’s talk to people who are growing older and growing with dementia. Let’s see them. Ask them about their experiences. Have experiences with them.

I need to confess that I am saying all this as someone who created aging sensitivity programs, earlier in my career. That’s right. I had good intentions. I thought it would help people be interested in aging. Maybe it helped. But then I started thinking differently about it. And I feel that I have to share how this change of heart and mind happened. Because we always, always, always have to keep challenging ourselves to listen and do better. I am willing to share my journey – perhaps if we are more open with the lessons we have learned, we can all view change without judgment.

So, what has made me change my mind?

It has been the voices of the many people growing older and growing with dementia who have shared with me their experiences. People who live some of these difficulties we have in sensitivity programs, and people who don’t. People who have physical and cognitive challenges, and yet, that is not what they are all about. People who have surprised me with who they are. People who have given me different perspectives about what it means to them about growing older or living with dementia.

This made me realize that we cannot neatly explain the human experience of a group of people through a few characteristics that may or may not apply to all of them, and if it does apply, looks different for each person.

Think about it. If I were to gather together a group of my middle-aged friends, and then try to create a sensitivity program on what it was like to be middle-aged, what would that even look like?


It would be tough, as we are all individuals. And it would probably be offensive to be reduced to a few characteristics that seemingly attempt to describe MY experience.

Alright, let’s say we all start talking to people growing older and growing with dementia to try to understand their experiences, what they are all about, what is important to them, etc. Will this tell us what IT IS LIKE TO GROW OLD, as in, THE ANSWER about what aging or dementia is like?

No, because that’s the point. Each one of us is an individual, and the experience of growing older is unique to each of us, even if we share some challenges of growing older, like cataracts, or arthritis, or dementia. Or even if we share gifts of growing older or growing with dementia. These shared experiences might not look or feel the same for everyone.

Should we keep talking to each other? Yes.

Because this is what really fosters empathy – being curious about each other.

Happy New Year!

Hello! This is a short message to wish you all a heartfelt Happy New Year, as we begin again with hope, and wishes for joy and love. A little story for the New Year…..

For background, my parents were both born in Austria, and technically our ethnicity is from Gottschee, a place that is currently geographically located in Slovenia, but wasn’t Slovenia then (it is a long, amazing immigrant/refugee story). Anyways, we have always had a tradition of eating pork on New Year’s Day.

I once asked , “Why pork?”.

My parents simply told me, “It is good luck!”. (P.S. They really like pork, so there is a bias here.)

Well, that was not enough for this gal, so I did a little research. This is what I found….

A pig digs forward when s/he is looking for food, as compared to the chicken, who digs backward for food, or the cow, who does not move when eating. Because the pig pushes forward, this is considered a sign of progress and luck in the new year.

I could not bring myself to use a picture of real pigs, given how we are talking about eating them.

So, in the spirit of this tradition, I wish you all a year of progress. I am glad we are in this together, as we dig forward, in creating awareness of the gift of elders, and connecting us to each other as we all GROW older.