For A Time Such As This

We were created for a time such as this! In our ever-changing world, we were created with this moment as part of our narrative. As the Dementia Letters Project community, now is the time for which we will thrive together. Now is the time when you can share with younger generations the beauty of your strength, your joy, your hope, and the stories of your life.

The Dementia Letters Project was created for a time such as this! It was created as a way to share something we felt compelled to share about our dementia journey, for ourselves, for dementia, for our families, for our community. During this time I have been sending out my own letters to family, friends, and to residents in care communities, to share a moment of light in the darkness.

As artists and storytellers, we were created for a time such as this! We were created to create and this moment has inspired or has provided us with the time, to create what our heart has longed to put out into the world. Some of us are creating new things each day, each hour, some of us are dreaming of the art we would like to create but have yet to open our ArtBin. No matter where you are, you are right where you need to be, doing what you need to do. Sometimes simply daydreaming about all the things that inspire us brings greater joy into our lives than actually creating something new. I trust that someday your art will make it out and on to your canvas, paper, or through your fingers and onto the keys.

We were created for a time such as this! No, this is not a declaration of punishment, of despair, or ugliness. It is a declaration of the beauty of the human spirit to survive, thrive, and grow no matter what the world may look like at any given moment. This can be hard. It can be hard for everyone no matter what age or status in life one may be currently living. But, for the care partner, there is a special moment of prayer and gratitude that goes out to you!

As family care partners your world has been thrown off, that routine you worked hard to develop and keep is no longer possible. Life has gone virtual and not all of us were equipped to make such a move. There are homes without a computer or iPad, or even an internet connection. Some families now have children home full-time needing assistance to attend school via online classes, with parents trying to care for their children and help their parents stay connected. Some programs don’t work via Zoom, which cannot simply flip the switch. Some programs can work, but we may be struggling to navigate the new world feeling disconnected, anxious, and out of sorts as we work a video call. And then there are our own emotions, worries, and health. We are navigating the dark unknown during a time such as this.

As professional care partners, you are on the front lines, you are navigating a world that many of us may not understand. You are caring for our loved ones and community members, doing your best to make sure they don’t get sick while now trying to also figure out how to engage and create with the residents. You are meeting them, quite possibly, in true person-centered/relationship-centerd care form. You are learning new ways of becoming relational with those you serve. You are forced to become relational with the residents in ways beyond a task list, in ways beyond the role you initially signed up for when to took this job. And because of this, our care communities can make this moment a moment of transformation into a new way of living. Yet, this time is painful, dark, and scary. You may not see the growth, only the dwindling resources, the fear of getting sick yourself and bring it to your family at home or your residents. You fear a spread of illness, on top of the many other concerns you might have during a “normal” time. You are exploring a new world during a time such as this.

We were created for a time such as this. We were created to grow, to transform, to love, and to care. We were created to create something new, be it in the fine arts, or in our community, or in the world of health care. Our differences have been magnified, but so has our collective humanity and goodness. We are walking the unknown journey towards an unknown end, but we are walking it together as human beings in communion with one another. While we see the true colors of many leaders and peers, disagreeing with or being encouraged by what we see, it is our task to respond with compassion, prayer, and understanding as they too are scared, struggling, and wondering if what they are doing is enough. Now is not the time to criticize, but to support and understand in a time such as this.

We were created for a time such as this, to dream and to hope, to find joy and to allow ourselves to mourn. The world has been through darker times, so we frequently hear, and that does not always help. But we have the strength of our human spirit, and we can see the light along this unknown journey, and together we will walk to support each other, to encourage each other, and to live during a time such as this.

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.

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.

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.

3rd Week of Advent

During Advent, we focus on 4 virtues that Christ brings, Hope, Love, Joy, Peace. On this Gaudete “week” we look towards Joy. We see a special light this week as we light the rose candle. We are finishing up our preparations for the physical beauty and wonder of this season, and continue to prepare our hearts for the coming of Christ. It is easy to lose patience during this week. For some the excitement is growing, for others, the dread and loneliness intensify. For those feeling the pressure of this time, remember that Mary is with you on this journey, interceding for you and to take time this week to see the light and awe of this time. For those overwhelmed with excitement, remember to still seek moments of stillness and silence. Oh, Come Emmanuel!

1st Week of Advent 2019

Advent has begun. Christmas day is drawing near. During these next few weeks, we prepare to celebrate the greatest collaboration between God and Humanity (as Matthew Kelly informs us) through the birth of Jesus, and we prepare for the second coming of Christ. We decorate our homes, we light the candles on our Advent wreath, and we find quiet moments for prayer. It is easy to prepare for the celebration of the birth of Christ, but how are we doing preparing for His second coming? How well are we seeking to live in a spirit of forgivingness? How are we finding ways to increase in prayer, trust, and love for Christ Jesus? How well are we working to living in the fullness of the gifts of the Holy Spirit? How well are we loving our neighbor, no matter who that neighbor is, or what they believe? Let us walk towards December 25th with a child-like spirit preparing for both the birth and the second coming of Christ.

Continuing the Work of Alzheimer’s Awareness Month 2019

Last Saturday may have ended 2019’s Alzheimer’s Awareness Month, but for us to make any true impact, we need to continue our attention and support throughout the year. As we make the transition from the hype of this past month, into the Christmas rounds of giving and visiting your local care communities, we likely have a collection of lists, graphs, charts, and quotes all aimed at guiding and educating us about dementia. How do we take this information and implement it? How do we make sure that these lists and charts don’t remain on the page, but inform each interaction?

We may have donated to our favorite dementia organization on Giving Tuesday, others may be taking their classes, scout troops, and children to sing, decorate, or visit those living with dementia during the Christmas season. This is a start to the implementation of what we have learned, but it needs to continue, it needs to grow.

The charts set a foundation.

Alzheimer’s is a degenerative brain disorder, NOT a normal part of aging, with more than 5.8 million Americans living with Alzheimer’s. This number is projected to triple by 2016. No one should be afraid to speak about Alzheimer’s disease. (AFA, 866-232-8484)

The 10 Signs of Alzheimer’s include memory loss that disrupts daily life, challenges in planning or solving problems, difficulty completing familiar tasks, confusion with time or place, trouble understanding visual images and special relationships, new problems with words in speaking or writing, misplacing things and losing the ability to retrace steps, decreased or poor judgement, withdraw from social activities, changes I mood and personality. (Alzheimer’s Association, 800-272-3900)

What else can we do?

Continue to learn and grow in knowledge and understanding. This can be done formally or informally. Find YouTube videos, a podcast, a book, someone living with dementia who puts out content to follow.
Volunteer or consider a career in aging and dementia that fits the specific gifts you have been given.
Begin a pen-pal friendship with an individual (living with dementia or a care partner) showing them your support, friendship, and let them know they are not forgotten.
Continue to donate to organizations in your area.
Become a Purple Angel Ambassador or consider helping bring awareness to dementia (and its many types) to your local businesses and community partners.
Encourage your faith communities to form a ministry for care partners and those living with dementia.

What else can you think of to add to this list? What are you doing to continue the spirit of November’s Alzheimer’s Awareness month throughout the year?