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?

An Imperfect Gift List – Part 2

Much like the question of, “What can I get my loved one with dementia for Christmas?” I get the same question for care partners. Family members and friends wanting to do something for someone who is a care partner. Each person is different, each person’s needs and wants may inform a different list. I have decided this year to respond to that frequent question knowing that it is sometimes helpful to reframe our gift-giving habits, our relationships with others, and remember we all approach the dementia journey in different ways. Many of these gifts will be similar to the list from part 1.

The gifts I recommend are not all material, and in some cases, they are best given throughout the year. Not everyone can go home during this time, and though the world looks and sounds different it is still the same day to day life. So, the first gift is to think about something you do throughout the year.

Two boxes of cards. One for you and one for them. Send them little notes throughout the year and offer the opportunity to reciprocate. Send notes letting them know you are thinking of them, and care about them. You can get note cards from everywhere from Etsy to Target. Find a local artist or make your own!
Items that feed their hobbies and interests. Books, art supplies, games, movies, music, technology. Think about how they like to spend their time. Are they a reader? Do they like puzzles and games? Do they enjoy watching new/old movies? Are they fascinated by technology and there is something in that world you could purchase for them within your budget? Think about who this person is, was, and still becoming.
A meal subscription box or bringing over the ingredients for a specific meal you can make together. Invite weekly or monthly dinner nights, cooking together and enjoy a meal in one’s company apart from the caregiver role. Allowing them to be a friend, mother, or husband for an hour or two. By doing something in the home instead of going out to dinner, it may offer the comfort of knowing they are still close to the one they are caring for in case something happens that they need to attend to.
A nice item of clothing, that makes them feel good, that they can wear as a comfort item and function in their day-to-day. Clothing is oftentimes a go-to for many people, but we may hesitate to purchase something new for others when we don’t know what they might like. Think about, does this person like to put a top on over their head? Or should it be button-down? Are they always cold? Hot? Think of favorite colors and materials. All of this can bring a level of comfort and even joy. I think Dudley Stephens fleeces are a great option that offers a variety of styles that will flow with the role of a care partner, yet look nice, and are made of a comforting material.
Something they like but will not purchase for themselves because they think they don’t need it, or because they feel they should. Something that they say, “Where would I where or use that? I have to care for (person here) and I don’t need that now.” Each person, care partner or not, deserves to feel good about themselves, enjoy something new, and have something special. What would this be for the person you are thinking of now?
Your time. Your laughter. Your stories. Your smile. Take the time to visit. They may be lonely or lonely for your specific relationship with them. They are experiencing loss as well, your friendship and relationship with them are valued more than you may ever know.
Find respite opportunities that align with their interests, hobbies, and desires. Can you take them away for a weekend, an afternoon, an hour? Can you take them out for coffee or bring coffee to them? Can you offer to clean their house, cook a meal, or do their yard work? Could you hire a service that comes into one’s home to offer a hair cut or care service that might be of interest?

Not all gifts need to be related to dementia, a thing or crammed into December. Give the gift of the best version of yourself, caring for and loving each person. Listen, see, and love the other and you will learn what you need to do.

An Imperfect Gift List – Part 1

Each year around Thanksgiving time, I am asked the question, “What can I get my loved one with dementia for Christmas?” I have hesitated to respond in any great way because I don’t have a groundbreaking list or answer. Each person is different, each person’s needs and wants may inform a different list. I have decided this year to respond to that frequent question knowing that it is sometimes helpful to reframe our gift-giving habits, our relationships with others, and remember we all approach the dementia journey in different ways.

The gifts I recommend are not all material, and in some cases, they are best given throughout the year. This time (especially for those living in a care community) is a rush of activity. From decorating the community to an increase in parties, organizations, and schools coming in to “do good” during the holiday season. Not everyone can go home during this time, and though the world looks and sounds different within their community, it is still the same day to day life. So, the first gift is to think about something you do that can be spread out throughout the year. Have your classroom, our scout troop, your children visit and perform in January when the days are cold and dark, in May when new colors appear, in August when the idea of sitting down and eating a bowl of ice cream with others sounds like the perfect afternoon. Or in November when the loneliness and loss intensifies as we approach the holiday season.

Two boxes of cards. One for you and one for them. Send them little notes throughout the year and offer the opportunity to reciprocate, send their granddaughter a birthday card, or a friend a note of hello. Even if someone else reads and writes the letters for your loved one, it is a gift that continues to let the person know you are thinking of them, and care about them, and they have the gift of being able to the same for you or others. You can get note cards from everywhere from Etsy to Target. Find a local artist or make your own!
Items that feed their hobbies and interests. Books, art supplies, games, movies, music, technology. Think about how your loved one likes to spend time. Are they a reader? Do they like puzzles and games? Do they enjoy watching new/old movies? Are they fascinated by technology and there is something in that world you could purchase for them within your budget? Think about who this person is, was, and still can become. Think about what you do together. Would a meal subscription box be something of interest? One that invites weekly or monthly dinner nights, cooking together and enjoy a meal in one’s company. A new rosary? A mini window herb garden? Be creative and think about what they enjoy, and how you can support them in that enjoyment.
Clothing is oftentimes a go-to for many people, but if a loved one relies on the care community or another service to do the laundry, families may hesitate to purchase new or nice clothing. It is wrong to assume people of a certain age don’t care about how they look. I think the growing number of “mature” bloggers (and the number of followers they have) speaks against that idea. I would encourage you to think about clothing if your loved one might like some new clothes or needs a few more things. Think about, does this person like to put a top on over their head? Or should it be button-down? Are they always cold? Hot? Shop for how they dressed when they were purchasing all of their clothing. Think of favorite colors and materials. All of this can bring a level of comfort and even joy. I think Dudley Stephens fleeces are a great option that offer a variety of styles. Shop Brooks Brothers sales, or your favorite local clothing store for quality clothing without spending too much.
Watches, clocks, and calendars. From experience, I can say that many people find comfort and some control when they can look at a clock, their watch, or a calendar to know what time it is, or the day of the week. Even when reading that time or date becomes difficult, it leaves a lingering sense of control in one’s life. If an Apple Watch is in the budget, and your loved one is someone that might use something like that, I have found great success with this type of gift. When scheduling the day and setting notification, it brings that sense of “I have not lost everything.” into one’s life. Even if you or another care partner still help remind them, set out medications, and goe to bring this individual down to a meal or event, it becomes a powerful tool for maintaining a sense of self and quality of life. This may not work for everyone, but don’t discard it, nor expect it to replace your care.
Photographs and elements of their home, if they are living in a care community.
Your time. Your laughter. Your stories. Your smile. Take time to visit, even on the holiday itself, if you are unable to host them in your home or with the rest of the family. If you have a rocky relationship with this individual this can be a hard gift to give, but it may be one of the best gifts they will receive. Don’t assume that because people are around them all the time that they are not lonely, or lonely for your specific relationship with them.
Finally, and maybe most importantly, keep the faith that these holidays represent. Remove the secular and instill faith. Help them grow in faith and enjoy these Holy days. If all the decorations in your community don’t make it up this year, or if not all the cookies are baked, let that go, allow for moments of quiet reflection and prayer. And once the day itself is done, keep the decorations up, help the spirit remain a while longer. Christmas is not a light switch that turns off on the 26th. Faith is not something you plug into and then unplug from. And, growth in faith does not end because dementia has shown up.

Not all gifts need to be related to dementia, a thing, or crammed into the month of December. Give the gift of the best version of yourself, caring for and loving each person. Listen, see, and love the other and you will learn what you need to do.

Aging and the NADTA Conference

A conversation has started. Finally!

This past week, I attended the North American Drama Therapy Association’s annual conference as a presenter. It was a groundbreaking year with an entire afternoon of workshops and discussions revolving around aging. In a profession that has intentionally or unintentionally discriminated against working with this population, this is a massive step forward. For almost three hours we sat down and had a conversation, looking at the past, the present, and the future.

The past can be summed up as bleak, with few individuals working in the area. The work they did, and are continuing to do, however, should not be dismissed. The work is good, needed, supportive, but not nearly enough. When asking for books and research in the area of aging and drama therapy, only one book is ever mentioned. This book, Waiting at the Gate, while a starting point, is decades old, and outdated. I see a field that has become complacent. This profession needs a shakeup. It needs to leave egos behind, and spotlight populations must fall away in order to make way for Drama Therapy to live in the fullness of its ability and purpose.

The present is not much better than the past, but with the work of some visionary people, it is not quite as bleak. There still is great discrimination and academic snubs. The updated media packet was disappointing, to say the least. Much of the work rests in the place of a life enrichment specialist and manager, doing work that anyone else could do. Aging and dementia are not spotlight populations and bring comments such as, “Isn’t that work better suited for music and dance therapy?” Nadya Trytan, Kari Rogenski, and Karen Knappenberger have set out to change this view with their current research, that I hope produces a book. And, with this conference, a conversation has started. Each workshop was well attended and engaging. So, what’s next? There is great hope!

Each individual in the field of drama therapy needs to get behind education, support, and research, if not working directly, becoming indirectly supportive of such work. In the past, I have spoken about this, but we need to continue, recognizing our own fears, and seeing what causes us to push this population away. We need our educators to not discriminate against prospective students because they want to work with this population. And, we need to listen to those we serve. They are seeking the specific support a drama therapist can offer, may we step into that space to answer the call.

We need to continue the current work, but recognize the great skills and knowledge acquired during training, seeing the need for support in mental health and healing, not just in pursuit of joy and comfort. Each creative arts therapist must pick up where LETs leave off, in a way only a creative arts therapist can. Don’t rest in the past, run towards the unknown future.

In the days leading up to the conference, I couldn’t help but think of all that can be done in the area of drama therapy and dementia, as well as the performing arts and dementia. The statement that kept running through my mind that I shared at the conference was this, our current society puts out the message of, “I am repulsed by your weakness! I will medicate you and leave.” But we need to transform this statement in our work practices, in our hiring, in our acceptance of new students and further development of academic programs, and in our hearts to say, “I am NOT repulsed by your weakness and trials. I will stay and help you live the life you were created to live.” Drama Therapists (and all aging and health professionals) can transform our current state, but each person must use the specific talents, skills, and training they have to do so. We can do this if we are bold enough to trek through the storm. The past and present are messy and bleak, the future is filled with trials and unknowns. Hope persists so long as we listen to those we seek to serve, asking them to be our guides, supporting them through our creativity, joy, love, and community.

This conversation must continue, to look at specifics, engage in new ways of thinking about the profession, and to call out any BS in the education and training of new and established drama therapists.

Are you a drama therapist? What are your thoughts?

Creativity, Imagination, and the Human Spirit

Creative engagement is using our creativity and imagination to connect with others. We use storytelling, poetry, art, music, theatre, gardening, and maybe even crafts as something we can do together to become relational with one another. We tap into that part of the human spirit that dementia can never take away. Through this, we honor the dignity and purpose of each individual, helping them live the life they are seeking, to best of our ability. We find success, community development, and joy. Creative Engagement allows us to help another individual experience an activity that is sensory, purposeful, and sometimes physical. It gives us a window to open up in ways that are non-linear, floating the line between the fictional and one’s biography. It allows us to dance between the verbal and non-verbal.

As human beings, we were created to create. This plays out in our careers, our families, our hobbies and interests. It is crucial that our creating never stops, especially after the diagnosis of a form of dementia. While creating, we must be cognizant of what holds special interest for each person, what causes them to become engaged, interested, and curious.

Creative Engagement plays out in many different ways, and its success is often determined by the value it brings to any one particular individual or community while participating in the activity. In the big picture, it can change our community, much like the work Anne Basting cultivated with The Penelope Project and I Won’t Grow Up. On a personal level, it can change the world of an individual, their outlook on life, their joy, hope, and can connect them to others in meaningful ways. As care partners, it can change the way we see aging and dementia, becoming a stepping stone to improve the way we care for others and build our communities.

Programs rooted in Creative Engagement cause us to laugh and to smile, and sometimes cry, but they always tap into the beauty of human connection. It brings together the emotional and physical elements of our being. It does not force us to recall specific information. We can be, and we can become the person we seek within ourselves.

Creative Engagement is not just some light and fluffy feel-good care model. It has research and success stories from thousands of individuals across the globe. The evidence behind the use of creativity cannot be ignored. So let us engage with one another using our creativity, our imagination, taping into the beauty of our humanity.