Bonae Memoriae: Of Happy Memory – The Blog

Bonae Memoriae the Blog

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Blog Purpose

What is Bonae Memoriae (BON-ay meˈmo.ri.ae̯) other than a Latin phrase that we might stumble on when trying to pronounce? It means, “of happy memory.” It is the name of this blog and my mission statement in short.

When working with dementia we are never sure what the person we are sitting next to might be able to recall or what they will remember from our time together. So we approach our visit with great care and creativity, working to make our time joy-filled. If we do this, it will be a happy memory. As the saying goes, “People will not always remember what you said, but they will always remember how you made them feel.”

The purpose of this blog is to be a guide for those who read it. It is not meant to be a medical or mental health resource, or diagnostic guide, but to discuss moments of the dementia journey. Not everything will be founded in scientific research, but all will be based on experience, both that of my own and of those I work with who have given me permission to share their story on this public platform. This blog is to serve as a discussion starter, and place to develop our shared story. If you have questions about anything I have posted, or find an inaccuracy, please do not hesitate to contact me directly. The opinions and stories are my own unless otherwise stated. Should something be referenced you will find the proper citation at the bottom of that particular post.

I don’t often have guest authors, however, if you would like to write a post for consideration I will gladly consider your submission. If you would like to share your story of dementia please consider writing a letter for the Dementia Letters Project. You may submit your letter by emailing dementialettersproject@gmail.com.

We Need Others!

Last Friday was Valentine’s Day. In the mix of your typical Valentine’s Day posts, I noticed an increase in posts stating something along the lines of, “I don’t need Valentine’s Day. I take care of myself. Thank you very much!” and “Who needs men/women? I don’t need anyone!” Okay, this is true we don’t need anyone, or do we? While posts on a day like this are directed towards not needing a boyfriend or girlfriend, husband or wife, and this may be true, we do need others. I wonder if it is affecting our ability to be the care partners others need us to be? It seems to be growing, this idea that we don’t need anyone, but we were created to be in communion with one another, to support, assist, care for, and spend time with each other. We all need others because we are imperfect, my gifts and not your gifts. My strengths are not your strengths. I was uniquely created for a specific purpose, and so were you. It is in coming together that we find ourselves thriving as a society, living fully alive. Imagine a world without something you love, but cannot produce it yourself? Imagine life without someone to mentor you in an area that is not your strength? We would fail. We would fall.

As care partners, we live in a swirl of life. Some moments feel like a tornado, others like a spring breeze. (Ah, spring breezes! I am ready for those again.) But, through each moment on our care partner journey, we do need others to remind us of ourselves, to guide us when we don’t have the answers we need to move forward, to take the lead when we have become nothing but a shell that bickers and snaps at the world, and thus causing greater pain for all involved. Why are we so afraid to ask for a community? Why do we feel it is a moment of failure? Yes, it is great when we can stand on our own two feet, accomplishing all we are setting out to accomplish, but we cannot be that person 24/7. I see this puffed up mindset of not needing anyone growing, and it must bleed over into our care. How can we stop the bleeding? How can we come back to the center, knowing that we can stand on our own two feet AND we can ask for help? We have lost our sense of community and what it truly means. It is a buzz word, a feel-good word, and increasing, an empty word.

As children, we need our parents and guardians to take care of food, shelter, clothing, and education. Our family is our community. As students, we need our teachers’ expertise to help guide us through the many subjects we study. Our school is our community. As young professionals and higher education applicants and students, we need people to help us navigate how our purpose and passion come together to impact those around us. Our cohort and company are our community. As new parents, we need the love and support of others and we need our children. Our loved ones and family are our community. As we grow older from birth to death we need our doctors and nurses to care for us when we are sick, we need our therapists and spiritual directors to help us navigate our world, we need our faith leaders to point us towards God and heaven. Our medial, clinical, families, friends, and neighbors are our community. As elders and those living with dementia, we need care partners to help us continue to live a life, fully alive. Those in our life both near and far are our community. At every stage of life, we need people for different reasons, and we all enjoy the feeling of being needed, it is part of our human nature. So, for this to happen, we also need to need others. We are linked. We are necessary to each other. We need a community of family, friends, care and health professionals, and neighbors.

Let us bring meaning and purpose back to the word community and all that it can be for us, for our loved ones. Let us feel the freedom to need others. What does community mean to you? How would you like to see us transform? What action steps will you take to blend standing on your own, and accepting that you too need someone?

Making 2021 Better

Well, we are a full month in and where have we been? What have we accomplished in 2020 that will make 2021 better?

A little early to be asking this question? I don’t think so.

Everything we do has consequences, good or bad. The people we do or do not reach out to, the jobs we do or do not take, the ideas we follow through on or don’t. One thing that I heard repeatedly in the final two months of 2019 was, “We have not gotten anywhere in improving aging and dementia this year!” While I don’t agree with that statement fully, why was that? Sometimes red tape, funding, and paperwork hold us back, but in a day and age of LinkedIn, YouTube and other platforms to get information out into the world, we don’t have an excuse. There is a lot out of our control, but there is a lot we can control. What can we control?

Our interactions with others in our care.
The relationships we build professionally and personally.
The ideas we have that we can share with others to work to put into motion.
Our ability to see and listen.
Our programming (most of the time.)
How we support and educate our team.
How we seek out our own education.
There are many more! What would you add?

Knowing what is in our control we see many areas where we can improve the way we walk with others on their dementia journey. We see areas were we can improve ourselves and our teams that will have an important, local impact that may inspire other teams to follow your lead. We see ways a small moment with someone seeking connection with another human being can ripple through our community. We can control more than we think we can. So through the next 11 months left of 2020, let us take steps towards making 2021 better than today, filled with creativity, charity, kindness, compassion, and community. Let us use the public tools we have as brainstorming platforms, as a question and answer forums, as a way for us to make even a mustard seed size dent in the field.

Are you with me?

What is Missing in Our Accessibility Statements?

You know those thoughts that come to you, and NEVER leave? I have one of those thoughts on Accessibility floating through my mind now. Many organizations have “Accessibility Statements” on their websites and in their literature, but have you noticed what I have noticed? It is all about the physical. They make statements about how they are accessible via wheelchair or walker, and how they have systems in place for those who need assistance hearing, yet, what about those who need help because of memory, over sensory stimulation, and other invisible needs? This goes beyond being dementia friendly, beyond age-friendly, and beyond the physical wellbeing of each individual who walks through their doors or participates in their event. 

Having both of my parents certified in either Aging in Place or Universal Design, I understand the focus that can occur on the physical. I see how an organization must focus on these elements while constructing their physical presence. These statements while limiting are valuable and benefit everyone in the community. Statements regarding the whole person also need to be created. Don’t you agree? 

I dream of a vision statement looking something like this: 

[Our organization] has made an effort to make our main entrance accessible via a handicapped lift that will provide assistance getting from the street level to our building, where a large elevator can accommodate both wheelchair and walker to the various levels of our building. In addition to our entrance and elevator, our restrooms and community rooms are also accessible. We offer dedicated wheelchair seating when applicable. 

Through our main office/box office we offer any applicable ALD devices for any visitor to use during their visit. During our main stage events, we offer an ALS interpreter. 

Also through our main office/box office, we offer large print material for all events that will be available, as well as digital versions you may use via any electronic device to read at home before and after your visit. 

[Our organization] is a Purple Angel, and fully-trained in dementia and how to adapt and best serve those with memory loss. 

We believe that each person deserves to live fully and that their needs deserve to be attended to and their dignity should be upheld. If there is anything that interferes with your ease and enjoyment of our organization, please reach out to the closest staff member, and they will be able to assist you. 

We invite you to give us a call with any questions you have or would like to make us aware of any needs you may have prior to your visit. Our staff participates in yearly accessibility training on best practices for helping any guest enjoy their visit. If you need assistance while here [at organization] please feel free to seek out any staff member that will be throughout our building. 

This is nowhere near a perfect accessibility statement, as I attempt to draft something as wide and generic as possible, but I hope you get the gist. Please feel free to adapt and take whatever you feel fits your new accessibility statement. 

Are We Like A Burnt Tea Kettle?

There is something about a burnt tea kettle that connects all of us. We seem to have those stories, don’t we? Of a time when we forgot to put water in the kettle and turned on the burner or the time when we put it in the oven to take it off the cooktop and later turned on the oven and burnt up the kettle. All of us, either ourselves or someone we know have done something like this. It links us all, much like our humanity.

As we navigate this dementia journey, facing the many unknowns, it is our shared humanity that continues to connect us, guide, us and support us. When we ignore our humanity we become charts, numbers, and task lists. Much like that burnt tea kettle, we forgot to fill ourselves with water, with life, we have forgotten our humanity. Unlike that tea kettle, we can be thrown in the snow when we realize our mistake, human beings cannot be thrown out. They/we need to be renewed, restored, and reminded of the beauty of life, regardless of our trials. Unlike that tea kettle, we cannot run out to the store (or order on Amazon) a new one.

When we realize that we have forgotten our humanity, regardless of any “issues” we or another person may have, we cannot just continue to let them go or throw them out. This is true for individuals living with dementia, residents in a care community, and even for the care partners amongst us. As I think about this idea of restoring human life (regardless of circumstances) I cannot help but think of two quotes. The first is from Audrey Hepburn, “People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone.” The second is from Lewis Carroll in Alice in Wonderland, “I can’t go back to yesterday because I was a different person then.” We can’t go back to before, but we can renew and restore our lives. We are constantly becoming. Each day brings with it something new, a lesson, an experience, a trial, a joy, and these experiences change us. So, when we forget our humanity and allow ourselves to become like that burnt tea kettle, we can’t go back to redo that time, we have changed, we maybe even have a scar or two, but we can be restored and do not need to be thrown out and replaced.

It is reconnecting with others, with ourselves that we are filled back up with water again. We can share our stories of that time we burnt the tea kettle with laughter, an eye roll, and a smile and suddenly we have found a moment within our humanity that brings us joy and connection. At the beginning of this year, we are like a tea kettle filled with water. We look forward with hope and joy, excitement and energy. May we, along the way, remember to refill as we give to our careers, our families, those we care for, and those we serve and encounter. May we end 2020 not like the burnt tea kettle, but like a well-loved one that has helped bring moments of connection to others, constantly refielled, and restored.

For You, Our Activity Professionals

We are 3 days into National Activity Professional week. It is not without our Activities and Life Enrichment staff that we could provide care and cultivate community to the best of our ability. The teams that lead everything from bingo to imaginative programming developed specifically for a group of individuals, are the front lines of our care communities. They are the individuals who are charged, not with a clinical or medical checklist, but a personal one and are called to become relational with our residents in a way that is unique and quite remarkable. This is the team that has the least amount of specialized training yet hold the greatest impact on the day to day life of the community. They become friends, companions, and family, and they hear the stories of each life with great compassion, curiosity, and at times sorrow. If you work for a care organization and do not know these individuals, get to know them and thank them. Call them up, drop a card in their office, or give them words of gratitude the next time you see them.

Activity professionals are more than the staff hired by anyone community, this group also includes those who are contracted to work with a community for any length of time or amount of sessions. These individuals are true salmon swimming upstream, seeking to provide programming, connections, and joy, all the while not having a team to support them, or the stability of a single community. These individuals are often paid anywhere between 60-90 days after the end of their service, making their dedication, a sacrificial one. They too deserve a, “Thank you.” Send them a card or an email. Call them up or text them. Hire them!

The work of activity professionals is more than what meets the eye. The programs they offer can transform our communities. The type and richness of each program seeks to improve the quality of life for everyone. triggering a chain of events that leads to a reduction in medical needs and staff burn out, saving the community time and money.

Often when we think of programming in our care communities we think of the standards, bingo, trivia, movies, music, games. We think of a few people coming out for an hour or two, or a large crowd gathering, seeking connections. But programming can be so much more than that. It can be creative, playful, childlike (NOT childish!), and it can be truly tailored to the specified personalities, interests, and hopes of the individuals we serve. No matter what programs are offered, there should be a much greater goal than filling a calendar or creating a feel-good environment for the sales and marketing team. Activity professionals are called to help reach the spirit of each person they are asked to serve, to help them continue to become, instead of solely reminiscing about who they were. They are called to see beyond (just as all care staff and community members), to see what each person can do, and encourage that movement to take place. They are expected to know how to work with individuals with dementia, move a wheelchair down the hall, support the resident in completing a task associated with the program, and understand the complexities of the multiple needs of the community. They are asked to pray for and with the residents, to hear their stories, to support them emotionally. They do all of this with little support, continued education, and recognition. They do this in part-time roles without benefits, a small hourly wage and little to no options for growth. They are remarkable people, with hearts larger than mosts. When they struggle, their struggles lie mostly in the abandonment of the administration of the care community. When they succeed their wins are taken by others. Often they are given the tools, but not supported in implementing those tools. They receive lip-service and are scolded when the medical team does not see the beauty of their role. Now, in saying this there are exceptions, but I have not met many.

To all Activity Professionals, working in great and beautiful ways, I say, THANK YOU! Keep going! We need you! You enrich the lives of others in ways you may never be able to understand. Keep dreaming, imagining, playing, envisioning a better way to fill your calendar and the time you spend with those you serve.

In a perfect world, your community would support you in attending conferences, training in the programs you see as beautiful additions to your portfolio of work, and would allow you to live fully in your role. They would value you the same way they value their highest administration professionals. To the communities that support this vision, THANK YOU! I hope you become the industry leaders, the change-makers, the new “normal.” But, since we don’t live in a perfect world, how can I support you?

One way that I am attempting to support you, is by offering on-line training in Creative Engagement and Dementia, to help you become better activities and life enrichment professionals working in our care communities (dementia or not.) Since this is a week when we finally recognize your great beauty and work, if you are an activity professional, let me know, and I will give you a code to take my online training at a discounted rate. Because this post is not meant to be a sales pitch (we all hate those, don’t we?) the details will be linked here. But I do hope you consider joining me. Let us change the story of the activity professional together!

Because I cannot say it enough, we cannot say it enough, THANK YOU!

How do We Value Our Care Communities?

I did some scrolling recently in aging and care. I looked at the communities and what they were promoting. I looked at the education of the people working in these care communities. I found a problem. You know how I feel about “person-centered care” these days, how it has become nothing but a warm fuzzy badge people put on their marketing and sales pitches. Taking closer examination, we know this is not always the case, but still, it happens too often. Corporate is dictating what must happen for individuals whom they will never meet, and staff is providing programming without first becoming relational with the people that trust them with their care. In the few times, I have been able to have candid conversations about the state of care, I have walked away saddened and furious by the direction we are heading.

There are two areas I find alarming. The education required for staff when hired (and after being hired) and the building design ego.

A level of formal education achieved, does not equal one’s intelligence, talent, character, or ability to do great things. To reach a level of education is not a marker for anything, but a point in one’s journey through this life. So as you see others achieve what they have set out to accomplish in this life academically, remember education comes in two forms, formal and informal, and your actions with the purpose you carry within you are what is truly remarkable. Yet, lawyers, socials workers, MBAs are being hired over people with true experience and passion for working in elder care simply because of the letters behind their name. The education of an individual cannot do all the work.

Once hired, we rarely provide the education our staff truly seek in dementia, in creative engagement, in becoming relational with a wide group of individuals, in current and best practices. Why are our networking groups filled with the sales and marketing team, when it should be filled with our CNAs and Life Enrichment staff?

Without beautiful care partners working within the building, without a care model that is not about money, image, census, corporate demands, or marketing warm fuzzies, with an organization that puts the sales department ahead of the CNAs, Nurses, and Life Enrichment team, this is not a community anyone of us would want to live in. Yet, we comment on the feel of the building before talking about the quality of life. The beauty of the building you offer your residents and community cannot do all the work.

I am not naive enough to think that education, money, sales, and image can just be left at the dumpster. Money is needed to care for your community, to keep lights on, to hire the staff you need. With all of the “beds” filled and a waitlist, you have stability. These are not bad things, but what is, is the way we view and treat each element of care. So what can we do?

I wonder if the industry is paralyzed by fear and the judgment of what the community and industry will think of who they are as an organization and care community? I wonder if we fear to look like a stereotype or will be judged if we don’t have a chandelier in our entryway?

Any real and good change starts at the lowest level in my book, yet without good leaders at the top, the culture change will be painful and difficult. Most people that work in the care industry today are good people. They came to the position they hold wanting to help, to make a difference, they saw something within themselves that said, “you will be good at this.” And, some maybe even came to this job because they needed a job, but even then there was something that sparked within themselves when applying for the position. Yet, we cannot rely on passion and character alone. We must support the specific, narrow, dedicated continuing education and support to help each individual thrive, both staff and resident.

What are our actions steps?

Allowing for our CNA’s and Life Enrichment staff to network with others, to expand their education in creative engagement and dementia.

By finding ways to implement those programs and certifications we have earned so they are integrated into our care model.

Engaging family to participate in programs and meals, allow staff to share meals with residents. We know the power of breaking bread together, so let us find ways and times to make that happen.

Forget about the judgment of others! All areas of life need this statement. I know the State has its guidelines and we have rules to follow, but where can we play? Where can we drop the judgment of other care communities and aging professionals, and find the freedom to truly connect with the community we are seeking to cultivate?

Don’t hire because of a degree (I know you do) and place into balance the informal and formal education of an applicant. You can a Social Worker is not needed to lead a Life Enrichment team. Think about where that advanced degree truly is necessary, and allow passion and experience to fill in the rest.

Fellow Visionaries! Do Not Give Up!

Every once in a while I hear a peer of mine say they are going to give up trying. Burnt out by the current medical and care world, tired of being told their ideas are not worthy of exploration or not inline with the “industry standards.” They are tired. We are tired. Not too long ago, I overheard a woman say that she was going to quit her position and move into a role where she could no longer be abused for her ideas. She was referring to an incident with a care community she worked for, poured her heart and soul into, deciding after she left, to implement one of her ideas in their memory care community. They executed the plan point by point and took credit as if the idea was their own. They did this, not only after she left the job, but also after they told the ideas didn’t fit the image they wanted, nor were any other communities doing anything like this program. I wanted to go up to her, hug her, and tell her to keep going! This would have been a touch creepy since I didn’t know her, nor was I fully apart of the conversation. I chose to not say anything to her. I regretted that decision later that day and posted on Twitter this statement,

“It is rough being a visionary, to suggest ways to improve care and connection, only to be knocked down and see the organization or program, a few months or years later, be implement without you, the exact thing you brought to the table. But keep going. We need you!”

I know this statement doesn’t make up for remaining silent, but I hoped a larger audience would see it, and maybe find some comfort, or at least feel a spark of energy to keep going.

Anyone at any time who has called themselves, or were called by others, a visionary or innovator, has experienced someone telling you your ideas are “stupid” (or a related statement fitting for your setting) and have them turn around without you to do exactly (or something almost identical) what you worked for and shared. It starts in grade school and moves into the professional world. It hurts, stings, is frustrating and causes us to feel a range of emotions. You have every right to go through this emotional journey, but please, don’t give up!

Whether you are the type of person that uses this experience to fuel you or not, know that we must keep going! While someone may have used your ideas and plan as their own, it was still set into motion by people who have a different lens of the world. You could go and do the program, exactly how you envisioned it, and it could be completely different because it came from the unique perspective and talents you bring to the experience. You may be working with a different group of people, in a different area or stage of life. The impact will be no less powerful. The lives you touch are no less worthy.

As I type this, I am feeling the sting of this experience. In short, a graduate program recently implemented two ideas that I had regarding theatre and older adults. These programs, while not exact, were quite similar to what I shared with the program back in 2012 in meetings with faculty. At the time of presenting these ideas and sharing how I would like to apply the degree to my work in aging and dementia, I was given the run-around. They combined a blend of comments with those sounding something along the lines of, “We don’t work with that population. It is not something we focus on and don’t see ourselves changing.” This hurt of course, but I moved forward. These theatre programs were put in place over the past two years, without me, without my input, without my knowledge, and one of the programs received international attention. This stings, respect for these individuals sinks lower, and where does one go from here? This place of hurt, betrayal, and abuse? We move forward! We create something new. We focus on those we wish to serve and support, and we envision a new program, event, and/or connection. There is enough work for all of us! While the actions of organizations such as this university are wrong and borderline unethical, it happens. It occurs on some scale every single day. If we are true visionaries, we will find something new, improve on what this group of people did, learning from their mistakes and enhancing their successes. There is another theatre piece in me, another creative idea already starting to take motion, and the people that this work will impact will far outweigh the hurt of this present moment. It is hard, but don’t think of the administration that is abusing you, think of the people these programs and models will benefit. If necessary, confront those abusing your innovation and vision, but don’t allow it to take over your every thought, or cause you to want to quit your job. Only you know the line that must never be crossed in your life. Keep going, keep creating, keep working towards a better way to care, serve, and support the lives of those around us.

Christmas Day


The time for Christ’s birth has come. The moment we have been preparing for these last 25 days is now. May your hearts radiate with joy on this blessed Christmas day. May you welcome the Christ Child with open arms and hearts seeing Him in those around us. 
Merry Christmas everyone! May you have a beautiful Christmas season, filled with great joy, love, hope, and peace. I will see you all in the New Year.

Joy and Oak Street Health

Have you ever experienced the joy of health care workers? Of health care workers in aging? These past few months, I have. Before the end of next year, Rhode Island will have gained three Oak Street Health clinics. I had heard the name before, but until this past Autumn, it didn’t mean anything as I had never lived near an Oak Street clinic. I have found that these individuals, in addition to working in a very interesting and visionary model of care, are filled with JOY! Each one of them excited about the work they do, the people within their care, and the opportunity to make a great impact each day.
You walk into their clinic and are greeted, not as a chart or problem, but as a human being. The space is well lit and inviting. As staff members and doctors move around the building they acknowledge you exist. They may not be the only clinic or care organization that has an inviting space and staff, but there isn’t the same joy. Joy. JOY. JOY! Since it is the Christmas season we hear this word almost every day, but there is also a growing trend in dementia care to seek and live in joy. It is something we are all after. We know that happiness (although we were created for it) is not possible 100% of the time, but joy, joy can be experienced in the brightest and darkest of moments. When we think of the people that have impacted our lives the most, many times these individuals lived in and with joy. Do you live a life of joy?
In our doctor’s offices and care organizations, we must have a staff of joy. This joy may or may not be the only light for anyone on any particular day. It shifts the mood from doom and gloom and lays a foundation for hope, health, healing, and peace. It is in the joy that we find the materials to cultivate a true and thriving community. If you are not living in joy, what is stopping you? If you want joy, but don’t know how to get it, start with a smile, then move to a grateful heart, and finish with the knowledge that we are not our trials, illnesses, conditions, or failures. The pain of our humanity is not forever nor is it the defining theme of our life.
While wrapped up in the spirit of Christmas and this holiday season take note of the joy around you, and adapt it to your story. Make it apart of your being. Share it at work and see the beautiful transformations in your community because of these small steps. We are all seeking ways to improve the world, and it is only in our small, daily steps that we can do just that. Start with joy.
If you live near an Oak Street Health and are on Medicare, see if they might be a good fit for you. If you are a health care worker, witness what Oak Street is doing, and learn from how they approach their vocations.

4th Week of Advent

We have arrived at the fourth and final week of Advent. Although it is a short week, we are still called to continue to prepare our hearts for Christmas. So much goes on during this time of year, and as Christians, we seek to see beyond the gifts and decorations, enjoying them of course, but recognizing the call to prepare the way of the Lord. We must allow not only our eyes to see the beauty of Christ’s coming, but our hearts as well. To see and listen to the great wonder of God’s gift of the Christ child to all of us. If you have prayers left unsaid, preparations of the soul not yet completed, you still have time. Allow the preparations of faith to take precedence over the material. Bring the hope, joy, peace, and love of this season into your final preparations. Christ is near. Come and gather at His manger.