I was talking with my friend and colleague, Sister Imelda Maurer.

Sister Imelda is a gerontologist, former nursing home administrator, Sister of Divine Providence, and an Advocate with a capital A. She has devoted her life to standing up for others and currently this includes people living in long-term care communities. Her life as a change agent has been long and it is not unusual when you are talking with Sister Imelda that she casually says something like, “Back when Sister Bernie and I were organizing the textile workers in Appalachia…”

Anyway, I digress. Sister Imelda and I were talking about supporting people living with dementia in residential care communities. Frankly, we were sharing our frustrations. About how the medical model of care does not truly meet the needs of people living with dementia. About the stigma of dementia that sees people living with dementia as “not there” or less than, and how this manifests into how we create systems that are lacking in truly honoring the human spirit.

Sister Imelda tells me a story about “Sister Catherine” (real person, name changed).

Sister Catherine is a fellow Sister who is living in a nursing home. She lives with dementia and she is not happy with where she is living. Sister Imelda had asked her what the nursing home could do differently.

Sister Catherine says, “I wish they would let us become who we are.”

Whoa.

 Let’s unpack this profound, beautiful sentence.

With these words there is the expressed sentiment that Sister Catherine not only knows who she is, but feels that she cannot be herself. It leads one to question whether, when we hear that a person with dementia has lost a sense of self, it is because we are not creating the conditions for a person to be themselves. In some cases, we might be actively keeping a person from being themselves. The self is there. It just cannot be expressed. It cannot be LIVED.

Then there is the fundamental idea of becoming oneself. This expresses that Sister Catherine is “still” growing as a person. She is evolving. Maybe she is changing into something else. Maybe she is becoming more herself.

We often say things about people living with dementia like, “She is not herself anymore.” Or, “He is not the person I knew.” Yes. Maybe. But what about seeing a person for who they are now? What about being curious about who someone is becoming?

“I wish they would let us become who we are.”

This simple sentence speaks to a lack of acceptance of who Sister Catherine is. And yes, a suppression of who she is. “They” are not “letting” her be who she is. Why do “they” control this? Who do “they” want her to be? Who do “they” not want her to be? Is she “supposed to be” someone in a nursing home?

Why can’t she become who she is?

I feel it is important to point out that Sister Catherine, when asked what could be better, did not talk about the food, or the care. Or the indicators of quality of care and life that nursing homes are primarily judged by.

She instead talked about the fundamental, unchangeable need to be human.

What if the purpose of a nursing home, or a senior living community, was to support a person in becoming who they are?

I am serious.

What would this look like?

What would this not look like?

I don’t think it would look like anything we currently have.

When you look up the word “becoming” and its origins, here are some of its meanings:

To arrive

To come to be

To happen

How hopeful are these words?

In German, “becoming” derives from the word “bekommen”, which means to receive. When we receive things, there is a giver.

Nursing homes and senior living can be givers. Maybe they give opportunities for becoming, instead of taking.

Many thanks to Sister Imelda for her many inspirations to my thinking and for challenging us to think differently. She is indeed a facilitator of becoming. I hope that Sister Catherine keeps becoming who she is.

First, I should let you know I am okay. Don’t worry.

I have written about this before.

To catch you up, I believe that our dog, Blue, who died in 2018, comes back to us in the form of a Monarch Butterfly.

In this silly, pain-filled, yet still beautiful world, why would one not believe this?

When Blue first died, he came back to me rather often. Butterflies would follow me down busy streets in Washington DC. They would dance around me in fields. They would come out of nowhere while I was having lunch outside in a cute little town I was visiting, and had never been to before.

Then, I did not see him for a long time.

Perhaps he had other things to do. I don’t know.

A few weeks ago, I was walking past our neighborhood garden. A butterfly dive-bombed me.

Oh, hello.

I smiled at him and kept walking. This could be any butterfly.

A few days later, the same.

And then again and again.

I started to look for the butterfly, changing my walking path so I could visit him.

Obviously, Blue has come back to be with me.

He seems changed. But I know it is him. It is kind of like when Gandalf the Grey comes back as Gandalf the White, for those of you who are Lord of the Rings fans. (If you are not, very succinctly, Gandalf the Grey is a wizard who dies, and when he comes back as Gandalf the White, he has even more wisdom and power.)

Anyway, maybe Blue also had some sort of exciting existential transformation and he couldn’t wait to show me. He had to share it with me.  I can’t explain what happened to Blue the Butterfly, why he was different, or why he was here, but he was. Trust me.

Why am I telling you about this? What does this have to do with revisionary gerontology, with my work in changing the culture of aging, dementia, and long-term care? What has this to do with honoring personhood? With seeing people for what is right with them?

I don’t know.

Maybe it has to do with everything.

I have been trying to say “I don’t know” more often. It is very freeing actually.

I don’t know…….

And, there is something very essential about this butterfly buddy of mine, who may or may not be Blue.

Maybe there is something essential about finding a small moment of joy.

Maybe there is something essential about seeing something in someone that you did not expect to see.

Maybe there is something essential in knowing something has changed, but is also the same.

Maybe it is something essential about stopping for a moment and just paying attention.

Maybe there is something essential about looking for something, for the smallest thing, that makes you feel good, like everything is all right with the world.

Maybe there is something essential about being reminded of beauty.

I don’t know why, but when I see the butterfly, it makes me think of other things too.

A person living in a nursing home sitting outside in the sunlight, taking a nap with a serene face.

I see a Zoom gallery of people living with dementia who are coming together to hear and see each other and support each other.

I see a person look at her wife, who lives with dementia, and say that she loves her more than ever, and that she is the best thing that ever happened to her.

I see one of my students telling me about her dreams of how she wants to make things better.

I see a nurse aide bringing her baby to meet the people she cares for in the senior living community where she works.

I see the hope of better systems to support people who live and work in long-term care.

I don’t know….

but I think this butterfly has everything to do with the work I do.

(Blue would of course know this. He was a rather smart dog.)

I do know that when I see my Butterfly Buddy who may or may not be our late dog Blue, something important happens.

Maybe it is like an opening in the world?

This post is not about aging or dementia.

It is about love, connection, loss, grief, and joy. Living.

So maybe it is about aging and dementia?

On the one-year anniversary of the death of our dog, Boomer, I share his obituary.

Boomer Barsness

February 2, 2011 – March 6, 2024

Boomer, aka Booms, Boomie, Boomsie, Boomarang, Boom Boom, Boo, and Boo-Boo, left this Earth Wednesday March 6, 2024 surrounded by his favorite human, Sonya, and spare human, Brendan. Just kidding, he loved them equally and for different reasons.

Before he came to Sonya and Brendan, Boomer spent the first 10 years of his life with his best dog friend, Wilbur, and his human family, in Washington DC. When Wilbur died, Boomer became extremely depressed, and due to challenging family circumstances, his humans made the very difficult choice to find a new home for Boomer where he could have the attention and healing he needed. 

Ten-year old Boomer came to Sonya and Brendan as a foster through New Spirit for Aussies, a rescue for Australian Shepherds. Sonya and Brendan were quickly won over by his endearing and weird qualities, and he was adopted by them a month later.

Sonya and Brendan were a perfect fit for Boomer. With both working from home, Boomer had a lot of human time and attention. As a Velcro dog, Boomer was thrilled to have humans around him most of the time.

When Boomer moved in with them, Sonya and Brendan quickly realized that Boomer did not know how to give or receive affection. After many sessions of forced love, sometimes overlove, Boomer developed a tolerance for affection, and even began showing it. His shows of affection were authentic but awkward, with him rather aggressively throwing his head or whole body onto your body. When receiving affection in the form of deep belly or head rubs, Boomer seemed to lose himself in it, making weird groaning noises. He loved affection in the form of baby talk and little soft kisses on his head, until he didn’t, and then would turn his entire head or body away from you, subtly letting you know he was done.

Boomer had several interests.

Boomer loved light reflections. In Sonya’s home office, he would watch the changing light on the walls or ceiling for hours, doing little tap dances of joy while he followed them, his little nubbin twitching excitedly. In the car, Boomer also loved watching the light reflections, which was less cute, as he felt he needed to attack them throughout a car ride. This resulted in Boomer spontaneously jumping at the car roof, the dashboard, or Sonya and Brendan, to catch the reflections.

Boomer also loved following lasers, but he was only allowed to do this sparingly, as it made him quite neurotic.

Boomer was obsessed with squirrels, and would take any opportunity to chase after them. This is the fastest one would ever see Boomer move. Boomer particularly found it important to follow a squirrel to its tree to be sure it did go up the tree. Boomer was very detail-oriented.

Boomer likened himself to a detective, always searching for new knowledge. If Boomer came upon a bush or tree that was peed on by another dog, he would take in the scent with utmost seriousness. Then he would sniff his own wee-wee to see whether the pee matched. If not, he would move forward in peeing on the bush to ensure it did indeed now have his scent. Mystery solved!

Boomer was a unicorn – a low-energy Aussie. He was quite happy spending his days lounging in Sonya or Brendan’s home offices. It is likely he picked up a good bit of gerontology or data science and could probably easily have filled in for his humans in a work crisis.

Boomer was clumsy for an Aussie. He would misjudge his jumps onto the couch, and couldn’t really catch a ball for the life of him. This did not seem to affect his ego; he was not high achieving but just happy with being himself.

Boomer had very little mischief. About 6 months after being adopted by Sonya and Brendan, Boomer started retrieving a single tissue from the the trash and leaving it in the middle of the floor for all to see. It was a valiant, but subtle, attempt to exercise mischief, as if he really didn’t know how to do mischief. His humans would cheer him on for trying. Eventually he took it up a notch and started stealing gum and hiding it under the bed, although he would never eat the gum.

One of Boomer’s most endearing qualities was his “swimmies”. Boomer would lie on his side and move his front two legs as if he were paddling in water. For symmetry purposes, he usually needed to do both sides. Swimmies varied in tempo, from slow and thoughtful, to fast and manic. Boomer did them nearly every day, especially after his morning walk and breakfast, before taking his morning nap. Swimmies seemed to be a sign that Boomer was happy, and that made his humans happy.

Boomer had no tolerance for humans exercising and did what he could to discourage it. There was no better place for Boomer than in the middle of a yoga mat when one was doing a downward dog.

Boomer was a love bug but did have his nemeses. This included the mail carrier Latiesha, Prime delivery people, UPS delivery people, FedEx delivery people, and all food delivery people. Latiesha, thank you for your graciousness in always smiling and laughing at Boomer even when he terrorized you from the front window. Boomer also had as his nemesis “brown dog around the corner”, who would bark incessantly at Boomer whenever we walked by his house, causing Boomer to become very emotional.

Boomer leaves behind his heartbroken humans, Sonya and Brendan, who received constant joy from him.

He is predeceased by his hamster-sister, Skittles Lazypants, with whom he had a complex and ambiguous relationship.

Boomer is also predeceased by his dog brother, Blue, whom he never met. However, his humans feel pretty confident they would have been great together, with Blue being a strong leader and Boomer a loyal follower.

Boomer is survived by his dog cousin, Oliver. Boomer and Oliver contentedly coexisted at family get togethers, although they occasionally would have a spontaneous yet halfhearted 30-seconds of play together before both deciding that was enough. Boomer is also survived by his other dog cousin, Toby. Toby did not care much for Boomer, but Boomer was too frightened of Toby’s 5-lb lofty presence to get in his way. Boomer leaves behind his great-dog-nephew, Stanley, who he thought was “a bit much at times”, but could connect with him when they joined forces to bark at delivery people.

Boomer treasured his favorite toy, Lamb. Lamb was quite overloved, and this caused Lamb to have several surgeries, including 4 amputations and 3 squeakie-ectomies. Unfortunately, his other favorites – unicorn, octopus, and lemur – suffered a similar fate.

Boomer is survived by several other humans important to him. Boomer spent a lot of time with his grand-dog-parents, Maria and Henry, and considered their home his second home. His grand-dog-mom, Pam, gave Boomer great rubs, and was quite skillful at preventing Boomer from leaping all over everyone to get to light reflections during road trips. Boomer also lovingly leaves uncles Paul and Eric, and aunts Stephanie and Denise, as well as human cousins Lexi, Landon, and Talia.

Boomer was loved. Every day. And he gave us joy. Every day. He was such a good boy.

Does everything we do to support people living with dementia need to be evidence-based? (Note: The term “evidence-based” broadly means that a support, service, treatment, etc. is supported by scientific research¹.)

Really, I am asking for a friend.

Okay, that’s not really true. It’s for me.

But, actually, it is a for a friend, in a way.

I want to know, on behalf of people living with dementia, why everything has to be evidence-based. Because what if I am a person living with dementia, and things are not offered or available to me because they are not evidence-based?

What if there is a cool program where my friend living with dementia can volunteer with dementia-inclusive community organizations? In this awesome program, my friend receives support to participate in a volunteer opportunity with an organization (whether that means transportation, training, coaching, etc.) and the organization receives support to engage people living with dementia (that could be training, adaptations to support volunteers with dementia, etc.).

Oh, wait. The program is not evidence-based, so it’s not available to her. I am going to encourage her to get to the bottom of this. I encourage her to call the 1-800-EVI-DENCE hotline.

Hello. We are EVIDENCE based here. This is Amelia speaking. With whom am I speaking?

Hello, my name is Faith and I live with dementia.

Hi Faith, it is nice to meet you. I am happy to help you. I am glad you mustered the courage to call me on your own. You know, scientific evidence does indeed support the idea that people living with dementia should exercise their autonomy and set goals for themselves. So that makes it all okay that you called!

Okay….thank you. Yes, I am calling because I heard about this program called the Purpose Project but I have had trouble finding it. Then someone told me I can’t get it because it is not evidence-based. I am wondering if you can tell me how I can get into it so I can try it?

[Sounds of typing]…….Hmm. Can you tell me the name of that program again?

Sure, it is the Purpose Project. It was started by someone named Sonya Barsness but it hasn’t really gotten going yet. She seems pretty cool and passionate, by the way.

Faith, I think I see the problem. Has she gone through the necessary vetting to determine that it is evidence-based?

Um, I am not sure – what do you mean?

Well, has she evaluated the project in a quasi-experimental, or experimental design….

I don’t know. I just know that I would like to do it, and apparently, I can’t, because I read somewhere that I can only do things that are evidence-based.

Yes, that is correct, Faith.

Why, Amelia? I am not understanding.

Well, there are limited resources out there to support people living with dementia, and so, we need to be really careful about the types of programs and supports we suggest. We have to make sure that the things we suggest really work in order to invest in them.

But who decides whether they work? What does it even mean to work?

That is a complicated question, Faith. I have to say that you bringing this up is contrary to the evidence I have that says people with dementia are not able to reason very well. Not sure what to make of that.

Anywhoo…Each program or idea has to go through a rigorous process to determine whether it is effective – for one program, being effective might be that it results in people with dementia having improved scores on cognitive tests. For another program, it might mean that people with dementia need less anti-psychotics after they participate in that program. And for another program, effective might mean that they have less depression.

Well, to be honest, I am not interested in taking any more cognitive tests, and I definitely don’t want anti-psychotics. And I don’t think I am depressed. So, those things aren’t really important to me anyway.

What is important to you, Faith? Just so you know, I am using evidence-based principles of motivational interviewing.

That’s nice, Amelia. Well, there are lots of things that are important to me. I do want to feel needed, like I am useful. That is why I wanted to do the Purpose Project. Why can’t things be available to me because they could be helpful, or even because I think they are important? Why do I need someone else to tell me what will “work” for me?

[Sounds of shuffling of papers] Umm…..Faith, I literally don’t have answers to those questions in here……

But back to the program, sure, nothing stops Ms. Barsness from starting it. I mean, it isn’t on the list, so it is a bit of a risk for you because we don’t know whether it will be effective for you.

I will take the risk on finding purpose, Amelia.

Faith, I am struck by how you are both supporting the evidence that people with dementia have a sense of humor, and at the same time demonstrating poor judgment. Yay for Science!

Back to Ms. Barsness trying to offer the Purpose Project, even though it is not on our list. She can try, but because it is not on our list, we wouldn’t be able to help promote it, and it might not be seen as “legitimate” in the aging and dementia community. We couldn’t ask any of our partners, like large community organizations or healthcare systems to use it. I mean, they would want to know the evidence-base, of course. She probably would not get funding to start it, but she could try? And then once she has spent several years doing it, she can apply for more funding to do an experimental study, where she can compare people in the Purpose Project with people who are not in the Purpose Project, and try to confirm her hypothesis that people living with dementia will fare better when they have purpose – I assume that is her hypothesis…..Then she can get on the list, maybe.

I hear what you are saying, Amelia. But coming back to me…. I need this now. Not in 5 years. I don’t have the time for all that.

That is a pickle. According to research, the system does not adequately support people living with dementia, so you are right on target in identifying this gap.

Amelia, maybe you can make a note in your database that this is a gap? That would be great- maybe other people are also seeing this gap so we can try to get things moving forward with solutions.

I am sorry, Faith. I can only put information in here that is evidence-based. And although I really value your voice, it does not qualify as evidence-base. Your call is so important to us!

Sigh. Well, I am not sure what exactly to do next, but thanks?

You are so welcome, Faith. Please remember to work on the six or eight pillars of brain health, depending on what model you are talking about. And keep in mind that while some organizations kindly translate and report research results for public view, you would not typically have access to the actual research articles, to evaluate dementia supports for yourself, unless you are affiliated with an academic institution.

Seems a weird way to close a conversation, but okay. Thanks, Amelia!

I do not intend to send the message that seeking evidence for supports – programs, services, ideas, etc. is “bad”. Clearly, research has shed light on many things that have been helpful to people living with dementia and their care partners.

I do recognize that a program does not have to be evidence-based to be available. However, it needs to be acknowledged that supports that are not considered evidence-based might not be promoted, funded, accessible, or considered “legitimate” in the eyes of stakeholders in the dementia support community.

And this could be limiting to people living with dementia.

If service providers, families, and people with dementia are primarily encouraged to seek out evidence-based dementia supports, this inherently suggests that supports for which there is not an evidence-base are not “good enough”.

I do recognize the importance of determining whether supports are working, how they are working, and for whom. I also think we need to question whether supports that are non-medical need the same evaluation approach than supports that are medical. Would a dementia choir need to have an evidence-base in the same way that a medication management and reconciliation program might need an evidence-base?

I am trying to present the concept of “evidence-base” as it might be seen from people living with dementia and their support partners – they do not have the time to wait for something to help them, and might be taxed by the need to limit themselves to things that are only deemed evidence-based.

I do hope to inspire thought and conversation.

Here are a few questions we might consider:

Does everything we do for/with people living with dementia need to have an evidence-base?

Are there things to support people living with dementia that do not need an evidence-base?

How do we know whether a support works? Who gets to decide?

How do we address supports for people living with dementia for which there might not need to be an evidence-base? Do we still need some sort of vetting? Who does this vetting? Is there a need to educate the public on how to discern information and services related to dementia so that they can participate more fully in decisions about supports?

How do we balance the growing of ideas to support people living with dementia with the need to “vet” them as effective, not harmful, helpful, etc.?

If there are limited supports that are considered evidence-based, and we feel that things need to have some level of legitimacy to be offered to people living with dementia, how can we encourage more supports to go through a process to determine whether they are “effective”? How do we make them more widely available? And in a timely manner?

How do we ensure that supports are person-centered, whether we consider them evidence-based or not? Could supports for people living with dementia actually be evaluated based on whether they reflect person-centered values? (Or, support the human rights of people with dementia?)

1. There are details to how something becomes evidence-based and there is also a lot of variability in how that term is used. BIG topic in itself. How something achieves the “designation” of evidence-based is driven by guidelines set by the government as well as the research community. ↩︎

I have been thinking lately of the people I have met in all the nursing homes and senior living communities I have visited. Wow, what a privilege I have had. What a gift to uncover these humans, who are sometimes not seen.

I like to shine a light on them.

I’m thinking of my friend June, whom I met while I was volunteering at a nursing home. June lived with dementia and I would visit her every week and we would just hang out together. June told me how she was a former model, and also that she owned a dress shop for many years. She was very interested in fashion, so I would bring fashion magazines. We would look through them and comment on different styles.

June was very astute and I loved hearing her commentaries on both the outfits and the women who were wearing them. She was very in tune to their moods. “She certainly looks excited,” she would say and point to the model. “Oh my, she does not look happy with that,” she would frown.

I also learned that she loved parakeets and had several throughout her life. In fact, she had bred them. So I would pull up videos of parakeets on YouTube and we would look at them together, which just delighted her. I told her about my parakeet, Abu-Dabi “Larry” Bird (who we called Boo). And then about our cockatiel, Englebird Humperdinck, who I got for my husband as a birthday gift. Unfortunately, Englebird felt like I was his person, rather than my husband, so he would just peck at my husband incessantly when he got too close. This also delighted her.

She told me about her ex-husband, who she said was “good for nothing”. She said other things too about his character, but I cannot print them here. She told me how she “kicked him to the curb and never looked back”. I liked thinking of June all dressed up in her beautiful clothes, surrounded by her beautiful birds, slamming the door on this person who hurt her.

I really enjoyed getting to know June.

One day, as I was saying goodbye to her, she grabbed my hand, looked into my soul, and told me,

“You know, you’re my emotional and cognitive buddy.”

Wow. My heart just about exploded. Is that not the highest praise?

I would never have come up with that phrase on my own. It was perfect.

In my mind, she was telling me a few things. She was telling me about the value of our emotional connection. Maybe she was noticing that I was really interested in what she thought about things. That I wanted to hear what she had to say. I think she was interested in what I thought too. Perhaps she felt that I was a person that she could feel and think with.

Overall, I think she was saying that I got her.

What a beautiful, and unexpected, way of articulating our friendship.

She was my emotional and cognitive buddy too.

Shortly after, I went in to visit June and she wasn’t there in her room. I tried to ask the staff where she had gone. They weren’t really sure. They think she was transferred somewhere else, is all they said.

Transferred. Like a package. A package with beautiful ideas and vocabulary.

I was astounded and hurt that no one was able to tell me where she went. No one even thought of telling me that she wasn’t there anymore. I had been visiting her weekly for about six months.

It struck me that this was probably because nobody noticed I was even spending time with her. I don’t know that anyone noticed June in general.

This was a place where many of the people who worked there seemed to have pretty limited interaction with the people who lived there. I can’t fault them because this was the culture of this place. Probably no one was their emotional and cognitive buddy either. It was very institutional, so, it’s not surprising that the general milieu of the place was not based on connection but disconnection.

Still, it was somewhat devastating to me. Did they not know how beautiful this idea was – to be emotional and cognitive buddies?

I felt grief because this was a real loss to me. I was angry too. They did not see her. Maybe they did not think about where she went because they didn’t think she was there in the first place. How could anyone possibly think a person like June is no longer there, a shell, incapable? You don’t tell people about them being your emotional and cognitive buddy when you are not there.

I am at a place now where I feel sad for the people who were around her in that nursing home, who missed the chance to be June’s emotional and cognitive buddy. .

What does it mean to be a emotional and cognitive buddy? I can’t be sure. But knowing June, I feel like she was expressing this beautiful idea of how we make each other feel seen. June was needing to be seen, and her telling me that I saw her was so powerful to me. It made me feel seen too.

I didn’t just care about June (being an emotional buddy). I was also genuinely curious about her (being a cognitive buddy). And she did the same for me. I can’t stop thinking of how “an emotional and cognitive buddy” is such a great description of something so undefined. June was brilliant.

Do you have an emotional and cognitive buddy? Are you an emotional and cognitive buddy to someone? How do you know?

I never saw June again. I hope someone else is being her emotional and cognitive buddy.

Thanks, June, for being mine. I didn’t get a chance to tell her that, but I think she knew.

I learned about an interesting thought experiment in a positive psychology class I am taking.¹ And it goes like this.

So you are on a walk and you come across a lantern – you rub it (of course) and a genie pops out. The genie says, “I’ve been waiting for you! I can make you a superhero! But you have to choose what kind of superhero you want to be, by choosing what color cape you want. If you choose the red cape, you are a superhero who is fighting AGAINST things – like injustice hate, discrimination, and evil. If you choose the green cape, you’re a superhero that’s fighting FOR the things you want – things like peace, harmony, love, belonging and peace. Which cape do you want? “

Which cape would you choose?

The thought exercise goes on to explain that, in actuality, each of us has both a green cape and a red cape. But most of us wear the red cape more often. After all, there are a lot of things to fight AGAINST in our world. Positive psychology tells us that we can benefit from trying to also wear the green cape. We can try fighting FOR things at least as much as we fight AGAINST things. Positive psychology is quick to clarify that the red cape is a good thing. We need to fight AGAINST things. If we did not address the wrongs we see, then the things we are fighting FOR – the things we want to see – would probably not be able to happen. The metaphor they give is: if you are creating a garden and plant all sorts of good seeds, but you don’t pull out the weeds, your garden is probably not going to grow

This exercise resonated with me because I feel like a lot of my work in fighting to change the culture of aging, dementia, and long-term care has been me wearing a red cape. For my whole career I have been fighting AGAINST the institutional mindset in long-term care and AGAINST the systems that do not support us to live well as we grow older or grow with dementia. I have been fighting AGAINST the deficit-based narrative that dehumanizes people living with dementia. I have been fighting AGAINST paradigms of aging that define us by our age or abilities, and overmedicalize the multi-dimensional, human experience of aging. I have been fighting AGAINST the pervasive ageism that is the root of all of the above challenges.

I have always felt strongly that these are things we need to fight AGAINST, that we need to use our voices to point out that these things are wrong.  There is so much wrong! It is frustrating as heck because there is always something else to be fighting AGAINST. Every time I pick up a newspaper or look at social media I see the blatant ageist messages, the not person-centered approaches to seeing and supporting people with dementia, a broken system of long-term care and senior living that is too driven by risk avoidance, profit, and maintaining people than supporting people to LIVE well. AGHHH!  While my red cape is blowing aggressively around me, it can block my view of the good things that are happening too.

Wearing a red cape can be exhausting.

There are other dangers of mostly wearing a red cape. When we only fight AGAINST things, we run the risk of showing others only what they shouldn’t do or believe. Take ageism, for example.

Don’t say elderly! Don’t get birthday cards with ageist messages? Don’t say that aging is awful!

We don’t want to say or do these things, because they are ageist, and we need to learn they are ageist. But if we only focus on what we think aging shouldn’t be, we might not leave room for conversation about what growing older IS. What aging can mean. We might not leave space for exploring how we might talk about aging. We might not leave space for real fears about growing older, and the conversations that can help us be less afraid. If we shame people for their ageism with only our red cape, we might limit the opportunity to really try to change the way we think about growing older. To allow space for honest conversations and questions and learning.

With our red capes we have fought AGAINST ageist injustices, discrimination and stereotypes. In our red capes we have pointed out when language, policies, ideas, articles, and beliefs are ageist and why.  We still need to fight AGAINST. But perhaps we need to add the green cape.

I’d like to put on my green cape for a little bit and share some ideas about what I think we should be fighting FOR.

What are we fighting FOR?

We are fighting FOR a paradigm of aging that:

Accepts aging as a part of life.

Identifies aging as a universal experience that we all share as humans.

Celebrates the experience of growing older.

Sees each older person as a unique person.

Includes both the gains and losses we experience as humans.

Recognizes that aging is multi-dimensional and people are multi-dimensional.

Honors that aging is different for each person.

Recognizes aging as a process and transition.

Explores the idea of elderhood and what that might mean.

Sees people with their age, but not defined by their age.

Encourages us to continue to do and and be what is important to us.

Promotes an experience of growing older that has possibilities and growth.

Actively includes older people in communities and life.

Supports older adults as valuable assets.

Sees the perspective of an older person as equally important than others’ perspectives.

Honors autonomy of how a person wants to live.

Assumes that an older person has an idea of how they want to live.

Seeks to understand individual experience of growing older.

Ensures that the voices of older adults are at the table.

Promotes the reality that older people continue to learn and grow.

Highlights non-medical and non-physical aspects of aging, like the psychological experience of growing older.

Treats older people as equal to people of other ages.

Recognizes the importance of adaptation so people can continue to live in ways that are important to them.

Focuses on living regardless of what cognitive, physical, emotional challenges individuals face.

I have to be honest. When I sat down to do this, it was sort of hard. It was tempting to go to all the things that we need to change about how we see aging in our society. I had to keep telling myself, yes, that needs to change, but what are we wanting to move towards?

I want to be clear that I am not saying we should only focus on the “positive” aspects of growing older. When we put on our green capes we cannot use them to try to dismiss the challenging realities of what people experience as they grow older – loss, illness, disability, discrimination, cumulative effects of disadvantage. We could use our green capes to fight FOR the understanding that these challenges are a part of the human experience at any age and that living more years might also put us more at risk of them. We could use our capes to expand our vision of growing older and illuminate the multi-dimensional experience of growing older. We could use our green capes to fight FOR a paradigm of growing older where we can all be heard and seen and supported, not just for what is “wrong” with us, but for what is “right” with us.

The next question is, What does it look like to fight FOR these things? What does it look like, for example, to fight FOR the assumption that an older person has an idea of how they want to live? To fight FOR the inclusion of older adults in communities and life?

There are many other things to think about what we are fighting FOR. What are we fighting FOR in nursing homes and senior living? What are nursing homes and senior living FOR? What are we fighting FOR, for the people who live and work in these communities? What are we fighting FOR related to dementia? What do we want FOR people living with dementia? (If you are worried that I don’t have something to say about any of this, I don’t want to add to your stress, so rest assured I do.)

I am going to think really deeply about what I am fighting FOR. I invite you to join me.

I’m gonna put on my green cape for a while, see what happens.

Shazam.

Note: You might find it interesting that Shazam is a calling to the elder gods who are the origins of power. It is an acronym for Solomon, Hercules, Atlas, Zeus, Achilles, and Mercury. It is indeed a bummer that these elder gods are all men. Something else to fight FOR is an acronym that is a calling to female elder gods. Anybody?

1. I learned this thought experiment from the Coursera course, University of Pennsylvania’s “Positive Psychology: Applications and Interventions” taught by Dr. James Pawelski. Thank you. ↩︎

I am 23 years old. I am working for a neuropsychologist who generously decides he believes in me and wants to support me in my own quest to become a neuropsychologist. He teaches me how to administer several types of assessments to screen for dementia and depression. So off I go to the nursing home, in my thrift store blazer so I at least appear to be a professional.

I am meeting with Mrs. Sabotino. She is of Italian descent, even having a trace of an Italian accent. She is barely five feet tall. She just moved into the nursing home. I am a little nervous, as I always am when I ask these questions. She is warm and seems happy to have a visitor. This makes me more nervous because I know I am going to disappoint her, as I am not here to socialize with her. I start with the Geriatric Depression Rating Scale.

I clear my voice.

“Mrs. Sabotino, are you basically satisfied with your life?”

Mrs. Sabotino shrugs. Looks out the window.

I wonder how long I am supposed to wait. Can she hear me?

She interrupts my thoughts.

“When I can make the sauce…..”, she says evenly.

I make a mental note. Clearly dementia.

I confirm, “When you make the sauce?’

“Yes.“ Mrs. Sabotino nods at me like she is bored.

Next question.

 “Have you dropped many of your activities and interests?”

She shakes her head. “Yes, because I cannot make the sauce.”

I write down “Yes?”

I start to panic. Maybe Mrs. Sabotino is not going to answer my questions! What do I do? I don’t think I am supposed to be chatty with her. I decide to stick with the plan.

Okay, next question.

“Do you feel that your life is empty?”

She nods more vigorously. “When I cannot make the sauce!!”

“Do you often feel helpless?”

“Yes, that is when I cannot make the sauce.”

“Do you often feel downhearted and blue?”

“Yes.” Mrs. Sabotino nods sagely. “Because I cannot make the sauce!” Her voice raises slightly.

Oh, boy. I was definitely not trained for this. I am in full blown panic mode. Do I write notes about the sauce? I carry on.

“Do you feel pretty worthless the way you are now?”

Mrs. Sabotino takes my hand, and looks right at me. “You see….I cannot make the sauce.”

We go through the rest of the questions, and each answer is sauce-related.

Although I am a bit confused myself, I decide to administer the mental status exam to her. She gets a low score, one that would indicate, according to neuropsychological interpretation, that a person has limited awareness and high levels of confusion.

Yet, Mrs. Sabotino knew how much she wanted to make the sauce. She was very aware of that. She was not confused about that. She was very certain about that. She knew there was something missing in her world. She could see it. Maybe even taste it. Maybe she could not say where she was. Maybe we would say she was not oriented. But she could tell me WHO she was. She could tell me what was important to her.

I wish I would have asked Mrs. Sabotino more questions. Not questions about counting backwards from 100, or if she would draw a clock for me. But things like, “Who do you make the sauce for?” “How do you make the sauce?” Or even, “Yum, how good does that sauce taste?” I wish I could have listened more.

I wish I would have made sauce with her.

After some time, I decided that neuropsychology was not a great fit for me. And I am eternally grateful for the many people who tolerated my questions, especially Mrs. Sabotino. Something started unraveling in me that day, and made me start questioning how we see people living with dementia. Or, maybe, more accurately, how we do not see them. That sometimes we are looking to see something about them, usually something that is wrong with them, and miss all the other things that are right with them.

I was talking with a group of elders about their experiences in the nursing home where they lived. We were discussing what it was like when they moved in.

“Overwhelming. Confusing. Scary. Relieving.”

Then one of the elders, Geneva, shifted in her wheelchair, cleared her throat, and said this:

I am so fortunate to be present during these moments of deep truth.

Geneva had all the usual assessments that you have when you move into a nursing home. She even had people ask her about her life history, who she was, and what she did. They also asked her some questions about her daily preferences. When did she like to get up? What did she like to eat? These are important questions.

But nobody asked her how she wanted to live.

Do we not think this is an important question? Do we think this doesn’t apply to people living in nursing homes?

I think we are a little afraid of this question. What does it mean? But I think if we really unpacked it, we would see that it is a Fundamental Question. And it is not just something we don’t ask people living in nursing homes. It is also something we have neglected in the creation of the long-term care system we currently have. A focus on living.

“Sonya, hold on, let’s say we ask people this question. Then what do we do? We won’t be able to create the lives that people want to live!”

“Sonya, you are clearly living in a fantasy world. How in the world could we ‘focus on living’ in nursing homes as they are now? I mean, have you been in a nursing home lately?”

“What does that even mean, weirdo? A focus on living!”

“It is not our job in nursing homes to facilitate ‘living’ for people who live there.”

“Um, I do not think of ‘living’ when I think of nursing homes. Nursing homes are where people are dying.”

(Those are the voices. I hear them when I say something that is outlandish. We have to listen to them. They are the ghosts of long-term care past and present. But they help us understand what the future could be. I like to talk back to them……)

Yes, exactly, dear voices. Our current system is not built to focus on living. This is why we have to change nursing homes (and senior living). The current paradigm of nursing homes does not support living.

Yes, and, we have to try to unpack this question for the people currently living and working in nursing homes. We have to both create something totally new, a new system that focuses on living, AND find new ways to focus on living now.

Yes, we need to really think about HOW we ask people in nursing homes “How do you want to live?”, and WHAT it would really look like if we focused on LIVING in nursing homes.

Yes, we do need to ask ourselves what we see as our jobs. If it is not our job to facilitate living for people, then what is our job? If we feel our job is to just maintain bodies, then no wonder we would struggle with wanting to keep doing these jobs. We might then ask ourselves, How do I want to live (in this work)?

Yes, people are both living and dying in nursing homes. I don’t think we need to avoid this reality. But this perspective does not really make sense to me. If nursing homes are about dying, wouldn’t we at least be focused on people dying well? If nursing homes were about dying, would we force people to do things they don’t want to do, in the name of keeping people alive? If nursing homes are about dying, wouldn’t they be about living well?

It is worth noting that people living in nursing homes and assisted living need our support. That is why they are there. I believe that they have an idea of how they want to live. And that they might need our support to not just be “kept alive”, but LIVE. When we are talking about how people want to live, we are talking about more then how they want to receive care. They still need care, but how they want to live directs that care.

And, yes, I have been in nursing homes recently. This is why I know Geneva’s question is important. This is why I know it is not being asked. This is why I know nursing homes need to change.

Where do we start in better understanding this question, “How do you want to live?”

We are sometimes very tempted to get to the answer right away. But there is so much value in taking some time with this question. Let’s keep in mind that sometimes the question is more important than the answer.

 “I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

Rainer Maria Rilke

We can start with this question, “How do you want to live?” And live and love this question until we come to the answer.

Maybe we can try first to “love the question”. By loving this question I mean getting curious about it, committing to it, embracing it, and trying to get to know it.  Seeing it not as a problem to be solved, but as a path forward. What does this question mean? Why is it important? Why does it make us uncomfortable? What can it tell us?

Here is what I mean by living it.

Once, when I gave a presentation and told the story of Geneva, a participant said, “I can’t even answer that question for myself. How would I ask that of someone living in a nursing home?”

I appreciate the honesty. This comment validates that “how we want to live” is not something we think about deeply enough. Maybe it validates our belief or our fear that people living in nursing homes cannot answer this question. Or maybe we are afraid of what they will say.

We still need to ask the question.

But I hear the voices again.

“Sonya, If I asked Mrs. Stewart how she wanted to live I am sure she would tell me ‘Not here!’”

Yes, voices. And that is why we need to ask her and live this question with her.

What is she telling us?

Perhaps she does not want to live there because she is not really LIVING there. Know what I mean?

Maybe she is really struggling with physical changes and she can only see how she used to live, when she was on her own and “free”. Maybe she cannot right now even see the future of how she wants to live. Maybe she is really, really sad that had to leave her home, and maybe, by us asking her about how she wants to live, what is important to her, we can work together on healing that sadness and creating something new for her. Maybe?

Maybe there are other questions we need to ask her. This is living the question.

If we asked this question, “How do you want to live?” we would need to recognize that this question is difficult for many people to answer. Maybe no one ever asked them that before. Perhaps they never felt they had the luxury of living the way they wanted, even before they lived in a nursing home. Maybe society has sent them messages that they are not important, because of their age, the color of their skin, their gender, their socioeconomic status. Maybe they are afraid to say the answer, because they do not think it is possible.

But this question being a difficult one is not a reason to not ask it. We need to use our human ingenuity, creativity, and spirit to find ways to ask this question in ways that people feel they can answer.

Because we do not ask this question, we really have no idea how people will answer it. We worry that people living in nursing homes will say things that we feel we cannot give them. But we have to live the question and see where it goes.

The voices of nursing home past and present remain.

“Sonya, the people we have here cannot answer that question.”

I was recently in a nursing home and I saw people who had not left their rooms for days, maybe months. I saw people who only had the television for company. I saw people who slept most of the day. I saw people who are “clean and fed” but have no contact with the world.

How do we live the question with them?

How would they answer this question, “How do you want to live?”

Surely, they would not say, “This is how I want to live. The way I am existing right now.”

It is hard to tell whether these humans have given up on living, accepted this as living, or have no opportunity in which they can truly live.

Do we not ask the question?

Again, the voices.

“Sonya, what can we do?”

“We don’t have the staff.”

“We don’t have the money.”

“Something is better than nothing.”

“This is just the way it is.”

Yes. The system is broken and it has to change.

Not only did Geneva articulate the question that we do not ask people living in nursing homes, she also nailed what is possibly the fundamental reason why nursing homes are broken. We say it is the reimbursement system, the survey system, insufficient staffing, regulations, money. But really, underneath it all, it is because nursing homes do not focus on living. These other things are just symptoms of the disease.

When we get to work on changing long-term care, it has to start with focusing on living. If we just keep putting bandages on the cracks we will just have a very wounded system, with lots of bandages, but no living.

It seems like we have a circular argument. We know that the current system does not focus on living, so we feel we cannot ask this important question of “How do you want to live”. By not asking the question, we miss the opportunity to better understand it. So, we perpetuate a system that does not focus on living.

Let’s break this cycle and live the question. “How do you want to live?” We have to try to live our way into an answer. For both the new system we want to build, and the people who are living, but not LIVING, in nursing homes right now.

How can we live the question? There are tangible things we can do right now to start to unpack this big question of “How do you want to live?” Here are ideas to start:

• Try this question with yourself. With your family members and friends. Pay attention to how we interpret the question. Where does the conversation go? Can we answer it easily? Why or why not? What makes it clearer?
• Try the question with people living in nursing homes. Try it in groups or one on one with people. “How do you want to live?” See what happens. Go with what they say. Listen. Ask more questions. Ask them what this means to them.
• Try different questions. Maybe ask “What is important to you?”, even something very concrete like, “When you think of what a good day looks like, what comes to mind?”.
• For people who are not able to communicate with words “How do you want to live?” brainstorm how you can explore this question with them. What lights a person up? What makes them feel good? What does it mean to “focus on living” for this person?
• Try the question with older adults who are not living in nursing homes.
• Think about how we can connect this question of “How do you want to live?” with existing tools we might use to ask about a person’s daily preferences. How do we tie a person’s preferences to helping a person live the life they want? (E.g. How does what time someone likes to get up be tied to how they want to live?)
• Discuss what it might look like to create a nursing home that is focused on living. How do you create a community that truly supports people to live life the way they want to live it?
• Brainstorm how a tool like Artifacts of Culture Change could be tied to this big question of how people want to live. How do we create a culture of living?

The more we understand this question, “How do you want to live?” the better we can build lives that people want to live, and systems that support it. The better we can create communities that support living for both the people who live and work in them. The better we can understand what it means to focus on living.

Writing this caused me a lot of agita*. Because I don’t have the answer. But I believe in the question.

Thanks, Geneva. I hope someone will finally ask you this question.

*Agita is a term (that I assume is real) that my mom always used to express that something upset her. It was used to express more than frustration. It is a deep feeling in the pit of your stomach when something is just not right.

My colleague, “Trina”, has a mom who was recently diagnosed with “early stage” or mild dementia.

Trina works in healthcare and is well-versed in person-centered care, which encourages us to honor the individual and what is important to her or him. In her work, she promotes care partnership as a person-centered model for how people with dementia can obtain support from people in their lives, in the spirit of collaboration. Yet, she feels that she is failing at care partnership with her mom.

She poses this question to me, “How can you have a care partnership when a person with dementia does not want a partner?”

She is frustrated because her mom does not want her help, thank you very much. She is fine, she tells Trina. Mom does not want her to be involved in her care. Mom has denied Trina her offers to attend medical appointments with her. Trina had presented this as a way her mom could have an advocate at her side. Someone who could help her ask the right questions. Help her remember the torrent of information that would be given to her in an appointment. Remind her mom to tell the doctor that she has been feeling dizzy. Her mom assures her that is not necessary.

After her mom was diagnosed, Trina had visions of sitting down with her mom and talking through her goals, wishes, preferences. Collaboratively coming up with ways for her mom to LIVE life, with some adaptations, but fully. Seeking out supports that can help her to do the things that she wants to do. Being with her to fight the tragedy narrative of dementia by focusing on joy and living. Being a care partner.

But her mom doesn’t see the need for any of that. She is fine.

Yet, Trina explains to me, she is not fine. She has forgotten to tell doctors important information about her medical history, resulting in a misdiagnosis. She has been forgetting to take her medicine. Trina sees that her mom has started limiting her socializing and stays in her house most of the time, by herself. Trina suspects her mom is isolating because she feels embarrassed, scared, and overwhelmed. Trina does not think her mom is in imminent danger. But she also does not think she is doing great.

Trina laments, “If only she would let me be her partner. I could enable her to live better. Instead, I fear she is disabling herself.”

How can you have care partnership when a person with dementia does not want a partner? Can you?

It seems that there needs to be partners to have a care partnership. However, not every person with dementia wants to have a partnership, or has a partner. For some people with dementia, they do not have a family member or friend who is able or willing to be their partner. Some of these people navigate dementia by themselves, or seek out professional care partners.

But what about people with dementia who have able and willing family members or friends available but they just don’t want to have a care partner?

Why would a person not want to have a care partner, if there was one available and willing? Some possible reasons….

• It could be that the person has always been an intensely private person, so this is not a natural or preferred way of relating.
• It could be that the person is truly in denial about their diagnosis of dementia.
• It could be that the person has challenges cognitively processing their diagnosis, so that it is difficult for them to understand its depth and impact.
• It could be that the person is adamant about not accepting help or support from others.
• It could be that the person with dementia is trying to protect their potential care partner. They don’t want to be a burden to them. They don’t want to bring them down.
• It could be that they don’t trust the potential care partner. They might not be comfortable with that person. They might be fearful that she or he is going to take over their life. They might have had a rocky relationship with that person.
• It could be that they have fears about losing their voice, and are unsure about what a care partnership would mean for their desire to be self-directed.

Yet, a person living with dementia might really benefit from having a care partner. Actually, they might need one. It is difficult to do dementia alone.

Is honoring the choice of a person with dementia to not participate in a care partnership a way of living out person-centered values? Is Trina still a care partner even though her mom does not want one? By Trina’s mom not participating in a care partnership, is Trina feeling more like a caregiver instead of a care partner?

Are there ways that we can approach care partnership so that a person with dementia might be more open to it?

Do we adequately talk with people living with dementia about care partnership? Are we sometimes afraid to suggest to a person with dementia that a partner is helpful and might even be needed? Can we have conversations with people with dementia about who they would like to have as a partner? We should not assume it is a family member. It might be a friend. It might be a professional.

Perhaps conversations about partnership need to happen before we have dementia, or very early in dementia, like when a person is first diagnosed. Perhaps we all need to have these conversations, well before we might be diagnosed with dementia. We have similar conversations about advance directives, where we choose a person to serve as our decision maker at the end of our lives. But what about someone to support us to LIVE, if we develop dementia?

If we do not have these conversations, we might find ourselves in situations in which there is no “partnership” until the person with dementia has more difficulty with daily life and decisions. Then we, as “care partners” might shift to a relationship in which we are having a larger role in a person’s life, maybe even making decisions on their behalf, and because there really wasn’t a partnership before, we are struggling with how to be a care partner. Maybe then we are less sure about what the person with dementia really wants, because we never really had the opportunity to be a partner. Maybe we even make decisions for that person with dementia that are not really in line with what they want, because we didn’t have that practice of collaboratively learning what they want.

How do we have these conversations earlier so that care partners are more comfortable with the idea of partnership and can talk about what it means to them? Where both parties are prepared to know how to talk with each other, and listen to each other? How do we help care partners communicate with each other so that they learn and practice seeing each other’s perspectives? How do we help care partners define what their care partnership looks like?

As we think about how to have these conversations about care partnership, it seems important to consider the ideal elements of a care partnership. What are we agreeing to? What are some of the building blocks? Maybe they are some of these:

• The person with dementia, the person needing more support, is willing to accept support, and is willing to engage in honest discussions with the care partner about their needs. This might include being willing to share details of their medical or health status that would be helpful for the care partner to know. If a person needing support chooses to not engage in honest discussions, or share their needs, the care partner might start to engage in behaviors that are perceived as “overstepping”. This might include communicating with a medical professional without the participation of the person with dementia or making decisions for the person based on what the care partner thinks is the best thing to do.
• The person offering support is willing to listen to the needs and wants of the person needing support. They are willing to try to understand what the person with dementia is experiencing.
• The person offering support cannot assume that a person living with dementia can or can’t do something entirely based on their diagnosis or age. The person needing support is open to the idea of adaptation.
• The person offering support is willing to work WITH the person to achieve their goals, and does not adopt an “authoritative” stance with the person needing support. This means that they are not trying to manage or control the person, such as by automatically “telling” the person they cannot do certain things, or preventing them from doing things. To be fair, there are times when a care partner might need to make these difficult decisions, like preventing a person from driving when they cannot drive safely, but these decisions are ideally made in collaboration, and keeping in line with what is important to a person (e.g. “I know it is important for you to have coffee with your friends every Wednesday so I have set up a way for you to get there and it is a sweet ride!”).

This brings me to trust.

• For both “parties” there needs to be trust. The person needing support has trust that the other person is well-intentioned and honest. The person needing support trusts this person with sensitive information. They trust that the person is not intending to harm them, or cause them distress. They trust that, even when a care partner might tell them something they don’t want to hear, they are doing so out of a caring relationship. They might trust that the care partner is seeing something about a situation differently, and their perspective might be valid.
• The person offering support trusts that the person needing support is being honest about what they need. They trust what is important to a person with dementia. They trust that the person needing support has a valuable perspective, and it needs to be heard.

Which brings us to empathy.

• It is hard to be diagnosed with dementia. It is hard for people to accept the challenges that dementia brings. People with dementia live with a lot of stigma, including ongoing messages that they are “not there” or can’t do anything anymore. It is understandable that a person with dementia might not want to talk about it, or share it with others. They are doing their best.
• It is hard to support, or try to support, a person with dementia. A care partner has to adapt to the changing needs of a person with dementia, and to hopefully do this with patience, humility, and openness. Care partners inevitably will make mistakes, and learn from them, and try again. They are doing their best.

Let’s not forget about reciprocity as the basis of a care partnership.

• A care partnership is not always even. Sometimes there is more giving than receiving. It is important for care partners to consider reciprocity and how both can practice it. Maybe talk together about these questions: How can the person with dementia give as well as receive? Even when the person with dementia is needing more support, how can they support the other person? How can the person offering support seek and accept support from the person living with dementia? When the partnership is less balanced, so that the person with dementia is receiving more support, how can they partner together to ensure that each live with dignity and well-being?

What is Trina going to do? She is not sure. She said she is hoping that her mom will read this blog (ha!). Maybe she will try to talk to her mom more about it. Maybe she will ask questions and listen more. Maybe she will ask her mom about her understanding of her diagnosis and how she feels about it. Maybe she will ask her what is important to her. Maybe she will try to assure her mom that she is a collaborator, not an authoritarian. Maybe she will honestly share her feelings with her mom, that she is worried her mom’s discomfort in asking for, and accepting, help will ultimately cause her mom to have even a harder time than she already is.

Maybe Trina will need to accept that a care partnership is not yet possible. And it might not be. But she will just be there for her mom and still practice person-centeredness, honoring who her mom is, and her mom’s choice to not have a partnership, even though she is still an ally.