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.
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?
Today, all across this country people are celebrating Thanksgiving. We celebrate with prayer, by watching parades, by preparing foods that carry with them great tradition, and by gathering with loved ones. It is a day that is seen as kicking off the holiday season, and with it comes a range of emotions and experiences. It is a day when we fill our homes with laughter and conversation. It is a day when we feel pain and sadness as we see the emptiness around our table, feeling the loss of those who are no longer with us because of death or rejection. It is a day when we snicker at the materialism of tomorrow (and tonight) or we plan our shopping lists with excitement as we finish that last bite of pie. It is a day of stress and a day of joy. To those who feel the loss through rejection, may you feel the fullness and love of those who are still in your life today. For those who dread the stress and tension of this day, be it from the kitchen or from those that you will sit with at table, may you find a moment of peace to embrace the mess. For those who are separated from your loved ones who could not come home, may you know the love that ties you together. For those who miss loved ones no longer with us, may you feel their spirit fill your heart, knowing they are with you. For those who hate this holiday, may you have the eyes and the heart to see the beauty that is with and in all of us. May all of you have a wonderful Thanksgiving, being grateful for all that we have and all the opportunities that rest before us. Happy Thanksgiving!
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.
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.
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?
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.
This statistic came across my Twitter feed again today, “by 2035, older adults will outnumber children under the age of 18 across the country.” When an older adult is generally considered to be anyone over the age of 65, we have a lot of work to do to better our society and our world. This asks us to deeply consider if we have the responsibility to support each other as we enter into becoming care partners for loved ones, and transition into retirement. It requires us to think long and hard about ageism and how our communities are built and function.
Do we have a responsibility to help our employees and fellow neighbors age? Do we have a responsibility to support those looking to enter into an aging and dementia profession? To support those already working? I think so, though the answer is as layered and complex as the question.
We live in a society where we are defined first by our profession and second by our hobbies, family life, and interests. This obstacle is only growing and gaining intensity in many circles. While our careers and the professional titles we hold are important to us, they are not the sum of who we are, our worth. There comes a point when for, whatever reason, we need to leave our jobs, retirement, family obligations, our health. What do we do next? Some feel shame, lost, or guilty, while others rejoice, feel great freedom, or maybe feel neutral about the whole thing. So, what can our places of employment and our society do to improve how we age and transition from active professionals into continuing one’s vocation outside the traditional form of employment? In addition to saving money and taking care of one’s health, we all must also look at our personal lives and know what brings us joy, our priorities, what sustains us emotionally, socially, spiritually, and intellectually.
When looking at agism we need to understand not only what it is, but also its many forms. We see and talk about the discrimination that happens along the spectrum, from those that are “too young” to those that are “old,” but do we ever consider the age-related discrimination that happens when someone wants to work with older adults, but is not admitted into the school because it is not one of the “it” populations for that program. Do we talk about the age-related discrimination that occurs when we separate the population into “abled-bodied” and those with “mental or physical limitations?” These points need to make it into our conversations.
Do the staff members within our care communities and in-home care organizations have a responsibility to help individuals who have recently retired or are transitioning into needing the next level of care? Making sure they are supported in the fullness of life? Do they have the responsibility of understanding and helping maintain the life each individual has created for themselves beyond their professional life? I think, yet again, yes.
We are holding on for dear life to the value of our professional selves, and it is not serving us well. How do we let go? How do we allow ourselves to be the sum of our professional and personal selves at every age?
This is not meant to hold the answers, in fact it may raise more questions, but we must talk about this and find ways to take action. Comment below what you think. I want to hear from you.
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 firstname.lastname@example.org.
On a September morning, while attending a meeting with other aging and dementia professionals, I was having a conversation with someone from one of the local care communities. We talked about how she has to work within the guidelines corporate sets in place, from the way her staff dresses, to the programs they provide. I was saddened by what she was telling me, having experienced this before while I was still working as a Life Enrichment Specialist. Later, during the formal introductions, this individual went on to talk about how wonderful it is that her community is a person-centered community. A reaction happened inside me, how contradictory these two moments are, one talking about how corporate dictates the life for people they likely have never met, and the other, a care model that only works when each individual is involved. It was clearly a marketing tag line, not the model of the community. It makes me ask the question, where are we going with our care communities? Is this the experience we want our parents, grandparents, and even ourselves to enter into when we need care and support? Do we want our home to be like a hotel, with college styled brochure and sales pitches, but no longer living a life that feels to be ours? In a world where authenticity gets a spotlight, where “YOLO” is still a phrase we use and hear, how can we help others live in an authentic, beautiful, joyful way, that even until the last moment of breath causes the laugher and freedom of “YOLO?”
My grandmother’s doctor told my parents when my grandma was moving into a skilled care community that, “this is as good as it is going to get.” Over the last 10 years, I have come to see the truth of her statement, and my heart sinks. As a professional care partner and educator, I have made it my mission to help turn path we are heading down. Will you join me?
Not all care communities are simply a sales pitch, in search of great financial abundance. Some are doing beautiful things, and are living saints to those in their care and for their families. Some are visionaries, creatives, and disruptors in an industry in distress. We have work to do. Lots of work! Where do we start? We cannot change everything overnight, nor are the robotic marketing models going away anytime soon. We can start by loving those we care for, that is to say, will their good, and desire a life for them that is filled with awe, joy, hope, and connection. If we don’t desire life for another in that way, we cannot make an impact. We must do small things with great love. We can then open up our own heart to see what we believe, understand, and seek. It starts by seeing the person, then understand the fullness of their trials and triumphs, hopes and dreams. We must let go of ideas such as individuals with dementia cannot also be “active seniors” or ”abled-bodied?” Each person that I have encountered throughout my work has proven this idea inaccurate. Finally, we can seek out further education, both from those we serve and the research. A blend of the two is crucial, for one without the other only helps us standstill.
So, love, serve, understand, and work. Work for better care and support for those in need right now, for your family, for your future self. Escape the carousel of marketing tag lines, of robotic care, of complacency, and be free and bold to enter into creativity, joy, and hope. We must become visionaries. We must not only state and train, but implement and grow. If we can dream a better reality for our communities of care, we can take action steps towards making that dream a reality. It will take time, courage, commitment, and vision. Seek out those around you who dream of a better way of aging, partner together, and the impossible will become possible.
“At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done–then it is done and all the world wonders why it was not done centuries ago.”
― Frances Hodgson Burnett, The Secret Garden