I was visiting Jane, who lives in a nursing home. Jane is 94. She tells me, rather nonchalantly, that she will die in her bed. She can no longer get out of the bed.

I ask her why. She says it is too painful to move.  She sees my look of concern and tells me that it’s okay, that it is her choice.

We chat for nearly an hour.

She worked for a government agency, one of those agencies that takes you around the world. She lived in Europe and Africa. She was an avid skier.

She asks me at one point what it is like outside today. She is now living in a bed.

She is resilient.

The human spirit prevails.

Our paradigm of aging sometimes tells us that aging is about weakness or that older people are weak. I imagine that, if you read her medical chart, it would seem that Jane is “frail”.  We often use the term “frail” to describe elders. Yet, it does not properly acknowledge the resilience that older people show on a regular basis, in various ways.

On the other hand, so often when we talk about resilience and growing older, we focus mostly on elders who are “healthy”, “active”, etc. Certainly they can be resilient, but in my mind, not because they are “healthy” or “active”. They are resilient because of how they adapt to their past and current life experiences.

How they show up in life, even when they cannot get out of the bed.

I want to stress the point that people living in nursing homes, people living with dementia, people who are not 98-year old weightlifters are also resilient. This is the invisible resilience that we might not see. So I want them to be seen.

To think that any older person is weak is somewhat ridiculous, when you think about it.

I used to do a lot of work in Veterans’ nursing homes. Many of those men and women were challenged physically, emotionally, and cognitively. But I cannot imagine calling them weak. As I spoke with men who were in the Battle of the Bulge, and women who served as combat nurses, I could only think of resilience.

Other examples of resilience that might not be seen:

A woman who just lost her husband after 70 years of marriage accepts my invite to my wine club. It is the first time she has gone somewhere alone in several years. She is not weak. She is resilient.

A man with dementia tells me that it is worth having this disease if he can make a difference by creating awareness about it. He is not weak. He is resilient.

A woman with dementia yells “Help me” to each person who passes her by, because she is lonely and wants human connection. She is not weak. This is resilience.

Resilience can be quiet and invisible. So we might only see weakness, when resilience is really there.

We seem confused about what resilience is and what it looks like.

While we often confuse resilience with strength, they have different meanings. While strength might be thought of as something unflinching or unmovable, these qualities are static. Resilience is a dynamic process of adaptation and elasticity. There is thoughtfulness in resilience. It is imperfect. It involves active thought and maybe reckoning. I like to think it even requires curiosity – of oneself and how one is interacting with the world. Resilience implies growth. In other words, the opportunities for resilience continue throughout life.

It is interesting to me that, in many definitions of resilience, it specifies that resilience is the ability to bounce back “easily”. The “easily” part of this definition confuses me. I think most of us would agree that becoming resilient is quite hard. If we bounce back from something, and it is not easy – it is hard – does that mean we are not resilient? I don’t think so. Isn’t resilience something you work at? I am quite sure it is not “easy” for Jane to live in her bed. Yet, she is surely resilient.

Perhaps we need to reframe the idea of resilience.

I think elders are the experts at being resilient.

Perhaps this is true by the very nature of acquiring more life experiences through growing older – there simply are more opportunities to be resilient. However, perhaps it is also due to the unique challenges and opportunities in “being old” that encourages resilience.

When we think about resilience, we might often think of it in reference to something that happened in the past. A person survived cancer. Or, a person overcame the death of a loved one. Indeed, this is resilience. There is also the resilience of the present, however. How a person shows up every day.

So, perhaps elders are particularly resilient because of what they have experienced, as well as resilient for what they are experiencing now, and will experience.

It is important to emphasize that resilience takes many forms. For Jane, her resilience is in her unending curiosity for learning about others, and sharing her story. For someone else, it might look quite different. This does not make the resilience any less. Maybe we have to pay attention to it more.

I am thinking of various people I have known who were at the end of their lives. Many of them could no longer express themselves with words. Perhaps one might see these people and think they are “wasting away”. Could we consider them also as resilient? Could their resilience be in each breath they take, in how they are living in the world, yet leaving it? Could their resilience be in their gifts to us about the fragility of life, and the reality of death?

I am also thinking of elders I have known who do not leave their rooms or their homes. Who do not want to interact with the world anymore. For some, this might be their own form of resilience, the way in which they need to interact with the world on their own terms. In some cases this might also present opportunities for us to reach out and connect with people so that they can practice resilience, perhaps by providing them with opportunities to show up in ways that are safe and meaningful to them.

Elders demonstrate resilience in their physical challenges and changes. This is true for elders of all abilities. There is resilience in both the elder recovering from a hip fracture, as well as the elder running a marathon. There is resilience in the everyday challenges of bum knees, sore shoulders, or adjusting to changes in vision. There is also resilience in resting, in conserving energy for what is important. And resilience in dying.

There is resilience in living with the cognitive changes of dementia. As a person sees the world differently through the experience of dementia, they try to make sense of it. They are problem-solvers, rather than how we often label them as problem-makers. This is resilience.

There is emotional resilience too. This is resilience that seeks joy, connection, and love, as well as acceptance, loss, and grief.

How can we consider elders weak, when they show us their resilience all the time? What can we learn about the unique ways they experience resilience, and how they get there?

Resilience relies on vulnerability, not weakness. We commonly think of vulnerability as weakness. However, according to Brené Brown (social worker, researcher, author and my best-friend-although-she does-not-know-it-yet), vulnerability is actually courage. It is willing to show up and be seen in our lives. And this is the cornerstone of resilience, because it is only through showing up that we can dynamically experience life, and gain resilience. One cannot become resilient without being vulnerable.

I have reflected on this as I am in the midst of spectacular elders. Their vulnerability in having the courage to show up and be seen, despite challenges, is beautiful. Through their courage and resilience elders are revealing to us how to navigate some of the most fundamental and pure human experiences. The human spirit prevails.

The way elders “show up” might be subtle, and even unnoticed. Maybe it is when an elder first moves into a nursing home, leaving behind everything she knows. Maybe it is how she sits quietly to get back in touch with her self, when she feels like her self is at risk. Maybe it is when an elder has the courage to speak to her neighbor. Maybe it is the first time a stranger helps her with a shower. All of these instances reflect both courage and vulnerability.

“Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it’s our greatest measure of courage.”
― Brené Brown, Rising Strong: How the Ability to Reset Transforms the Way We Live, Love, Parent, and Lead

I think of Jane in her bed, being both resilient and vulnerable. She is vulnerable not because she is weak. Her vulnerability is in her willingness to keep showing up. She is not able to see the world anymore. And yet, she keeps showing up to life. She lets someone like me come to her, and sit with her, so that she can maintain human connection, and be seen. I will admit that, at first, I was so sad to think of what she could no longer do. I was upset that perhaps they were not controlling her pain, or doing more for her. But then, when I considered the incredible resilience in what she could do, and who she was, and her courage to share that with me, that sadness turned to awe.

Vulnerability means daring to show up and be seen, “even” when you are living with dementia. Even when you are the only one in the dining room with a walker. Even when you state what you need, contrary to what everyone else around you thinks you need. Even when you are more reliant on others for getting through the day.

Even when you are never going to leave your bed.

This is what resilience looks like.

 

Al Power, geriatrician and advocate for people living with dementia, tells a great story that Richard Taylor once told him. Richard Taylor is a person who lived with dementia and dedicated his life after his diagnosis to creating awareness of the experience of dementia.

Richard was visiting a nursing home and watched a group of ladies who lived in the “memory care unit” folding laundry.  One of the women motioned for Richard to come over.

“You know what they are doing here, right?” she asked, as she motioned to the laundry. Richard shook his head.

“You see, they bring us these baskets of clothes for us to fold. When we are done, they take them back over there, unfold them, and bring them back for us to fold again.”

Richard asked, “Why do you keep doing it?”

The woman said, “Well, it’s better than a stick in the eye.”

Al closes the story by asking us, “Can we do better than a stick in the eye for people living with dementia?”I believe the things we do to try to support people with dementia almost always come from a good place. We want to help them. Many times we do not know how. So, we do our best at that time.  One might argue that something is better than nothing.

But, is it? How can we do better?

I was remembering Al’s story as I heard this quote from Kyrié Carpenter:

 “When people are starving, they will accept anything.”

These simple and profound words were said in reference to a discussion about “fake” things we give people with dementia (in this case, it was fake pets, baby dolls, etc.).  It resonated with me deeply.  It kept nagging at my brain.

As I thought about it, it occurred to me that this statement held broader meaning and deeper wisdom outside of its original context. It challenged me to consider how the truth of this – that people are starving and will accept anything – might hold for many aspects of how we try to support people living with dementia. It brought up many questions for me.

Is a part of our current paradigm of dementia the idea that “anything we do for people with dementia is ‘good'”, because dementia is so bad?

If people are starving, and they will accept anything, is what we are doing for them really helping them? Is it what they really need?

How are we paying attention to whether these things are actually in line with person-centered values that honor people with dementia as whole human beings, and as individuals with needs that are varied and unique to each person?

Dementia is life-changing. I have had the honor of collaborating with people living with dementia and their care partners for many years, and I can tell you without reservation that they are starving.

They are starving for information and support. They are also starving for relationship, connectedness, ways of finding purpose, being treated equally and with dignity, and many other things. People are suddenly plopped into this world of dementia without a map, and it is scary as hell.  The maps that are available do not present the whole picture of dementia, but only pieces of it, so they only know what they know, and don’t know what they don’t know. When they find “directions” they are not always certain whether they are the right ones.

A person with dementia goes to the doctor to get her diagnosis. The doctor tells her she should not worry, she just has a touch of dementia. She is starving for something, anything, and she accepts this.

A family member is at wits end with his wife, who is living with dementia, because she gets angry when he helps her get dressed. He tells his support group, and they tell him that he needs to ask for medicine for her to be more cooperative. He is starving and accepts this. His support group is also starving and has accepted this.

I have sat with family members who tell me the things they have found on the internet that promise a cure. People with dementia tell me how they are told by someone or read somewhere that they just need to do Sudoku, eat blueberries, exercise, etc. and that will cure their dementia. People with dementia read that they will become sundowners. They are told that all people with dementia will become angry and violent.

They accept these things. They are starving.

This is an important thing to recognize, because when we know that people are starving, and that they will accept anything, we need to be really mindful of what we are offering them.

I do not mean to suggest that people with dementia and their care partners are, or should be, passive recipients of information. However, we perhaps need to acknowledge that this is also a part of the current paradigm of dementia (and needs to be changed) – that “we”, the “professional experts”, hold the information, which by virtue of it being held by the experts, makes it “true”. So, people accept it.

The perils of being starved and accepting anything are especially concerning in education about dementia. People are starving for knowledge, so the danger can be that any education is good education. People with dementia and their care partners accept this knowledge, and apply it.

Even if it is education that refers to people living with dementia as “demented”, or labels them as aggressive, non-compliant, sun-downing, wandering, etc.

Even if it is education that supports a paradigm of dementia that sees people with dementia as problems, weird, different, no longer there. That labels their normal expressions and actions as medical problems, without considering why they are expressing themselves that way, what their needs are, and how they can proactively seek well-being.

Even if it is education that supports a paradigm of dementia that creates more disability than the disease itself.

They accept it, because they are starving.

When we know this, that people are starving and will accept anything, maybe it will encourage us to be really mindful of what we are giving people. Maybe it will remind us to listen more, and speak less. Maybe it will consider broadly what we are saying about dementia through our education, our services, even our research.

Yes, even research. Here is one small example. We provide education about dementia to a group of people, we test them to see whether they have learned what we taught them, and we find that they have. However, perhaps we have taught them a paradigm of dementia that is purely medical and not person-centered, one that does not include the perspectives of people with dementia. They are starving and will accept anything.

Is it better than a stick in the eye?

It is not born of ill intent. We have tried to support people in the way we thought was best. And because they accepted it, we assumed it was okay. But it is time to rethink this. People with dementia and their care partners are still starving. But they should not accept just anything. Let’s give them something better to accept. Maybe even more than accept, but enable and empower.

I would like to see us come to a place where everything we do to support people with dementia, including education, reflects person-centered values. To me, person-centered values honor who a person is and what is important to him or her, and are lived through interconnected relationships with others who know and honor what is important to a person.

Here are some preliminary questions that we can ask ourselves, from my perspective and experiences of hearing the voices of people living with dementia and their care partners, that help us to consider whether person-centered values are present (or absent).

This is not an exhaustive list, but these are some of the things that I think about when I look at information, articles, books, educational programs, presentations, movies, podcasts, blogs, products, supports, services, etc. related to dementia.

• Does it include the perspective of the person living with dementia and those who support him or her? (Or, does it only include the professional perspective?)
• Does it encourage us to ask for, and be curious about, the perspective of dementia?
• Is there an emphasis on what is important to the person with dementia? (Or, does it include paternalistic views that suggest “we” know better than “them”?)
• Is there an emphasis on who that person is, including the multidimensional aspects of who people are, not just their cognition?
• Does it honor each person with dementia as an individual? (Or, does it categorize people by their weaknesses or disabilities? Does it generalize the experience of dementia to groups of people?)
• Does it account for the importance of relationship and partnership?
• Does it include well-being and its various domains?
• Does it present a balanced view of dementia to include the more-than-medical experience of living with dementia?
• Is there a focus on LIVING as the primary goal? (Rather than care and support being the goal in itself?)
• Is the language person-centered per guidelines developed by the Dementia Action Alliance? (Or, does the language label people with dementia or their actions?)
• When describing the actions and expressions of people with dementia, is there an attempt to try to understand how people act and why they act that way, honoring human expressions? (Or, does it medicalize what could be normal for a person, describe these actions and expressions as behavioral and psychological symptoms, or problem behaviors?)
• Does it include strengths of people with dementia? Does it focus not just on what people can’t do, but what they can do?
• Does it encourage autonomy of people with dementia?
• Does it encourage us to see people with dementia as people who are experiencing the world differently, and doing their best? (Or, does it frame people with dementia as problems to be managed?)
• What else??

As Spiderman’s Uncle Ben said, “With great power, comes great responsibility.”

The true superheroes are people living with dementia and their care partners. And we have both the power and the responsibility to do better than a stick in the eye for them.