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!
There is something special about museum access programs for individuals with dementia and their care partners, family, and friends. These programs are part Memory Café part Support Group, rooted in joy, connection, learning and hope (not unlike the improv group I wrote about last time.) This past week I was reminded of my first experience with the museum access programs. When I first heard about Meet Me at MoMA I was encouraged by what the program was able to uncover with the participants, and the model has remained a core inspiration for my work and how I look at art engagement. It is through these programs that we are reminded of the beauty of creativity and community. They show us we can still learn, grow, imagine, and laugh with dementia. They remind us we are more than our ability to recall information.
All over the world different types of museums and community centers have developed programs, not only individuals with dementia, but also for those with low vision, families, older adults, and people with all types of abilities and needs. These programs can often go unnoticed by many of the organizations’ patrons, yet without such programming, are our museums truly living out their mission and vision statements? The visual art world is surpassing the performing arts, though they are equal in their importance and impact. I encourage you to take some time this week to see what community access programs are offered around you and see what it would take to form a program if one does not exist. If you work in a care communities or with individuals who may not be able to get out into the community to participate, get creative and find ways to bring elements of the experience each individual. (I have developed a program for such situations that you can use if you reach out to me.)
Growing research is supporting arts and health, and program like Meet Me at MoMA, in informal and formal ways. They have an impact on who we are not just emotionally but also neurologically. Still, if for no other reason, we should engage in arts programs for joy and beauty alone.
If you have ever attended a dementia arts access programs you may have stories of the beauty of these programs. A group gathers, sometimes already friends, sometimes strangers. With a museum educator, a volunteer or two, and the other participants, the group enters into the gallery. They pass walls filled with art and maybe other patrons of the museum until they reach their destination, a work of art that will soon spark conversation and story. As the group sets up and settles in, the museum educator gives some background the piece, shares a personal connection, and asks the group about their thoughts. From silence to laughter and joy the group engages with the work and with each other. Breakthroughs don’t happen every time and with everyone, but through this process, individuals who no longer speak, open up and finding new ways to communicate their story with the group. The time passes with each artwork visit before the group gathers for a moment of socialization before heading on their separate ways. As the day, week, or even month passes the artwork and participants names may be lost, but the emotion of the day will linger.
Today is where you come in. Welcome! Yesterday we looked at the past, and today we look at the present. The tides are changing and so much good is happening. People are starting to include individuals with dementia into the conversation and the development of care. Families have access to more helplines, support groups, memory cafés, and other resources than ever before, and we better understand what legal and medical documents should be filled out, and what to questions to ask our doctors and care community staff. Finally, we are in a better position to do the best we can to support and continue to love our family members and/or friends with dementia through the growth of dementia friendly communities and the people interested in entering the field of aging. We are becoming creative, innovative, and bold in our approach to life enrichment and community building. This growth excites me and brings great hope for what the landscape will look like as we move forward.
Up until this point, you have heard from me, and have hopefully come to understand my point of view. Now, I would like to hear and understand what you see. The bigger we can paint this picture the brighter our community will become for all of us. So I invite you to write a letter, one that you can send to me that I will post on this blog, sharing the different journeys of dementia.
Here are the steps to take if you are interested in writing a letter.
Anyone may write a letter, it doesn’t matter how long or how short.
You can address it to yourself, your family members, the community, to dementia, to your doctors, to God, to anyone or everyone.
The letter will be your opportunity to share your story of dementia as a person living with dementia, caring for a loved one, working/studying in this field, or even address your own fears and uncertainties about this disease. You do not have to be directly impacted by dementia to write a letter.
You may sign it with your name, a pen name, or anonymously.
This letter will not be a way to promote your work or product. It will not bash any individual or organization. While I encourage you to be vulnerable and honest in your voice if we could keep it fairly clean in language that would be much appreciated.
To write a letter you may fill out this Google form.
I look forward to hearing from you, learning from you, and growing this community.
ONE YEAR!!! Okay, maybe I shouldn’t shout, but I am happy to say it has been one year since I formalized my work with dementia into what I have been calling Bonae Memoriae. Over the next four days, I will be writing posts and sharing news about where I have been, where I am now, and where I/we are going. I want you to become a greater part of this story, of this experience, of this growth process. There is hardly a one size fits all when it comes to dementia. Each experience is different, each need is different, each life is different. That is part of the beauty and the struggle, and the reason all of us should answer the call to create something greater, better is within the needs and desires of a full and rich life.
So on this Day One of celebration here are a few highlights from this past year.
On May 24, 2017, I wrote a post called Her Signature, and thus this journey started. I danced circles as I worked to introduce this chapter of my work to you. I reflected on my Grandma Marie who had Vascular Dementia and the impact she had on how I view my work. Her voice and approach to life is very much a driving force for me in this field.
In the weeks and months since that moment, I met some amazing individuals, fine-tuned and expanded my work in Life Enrichment, developed training programs, and continued working as a Purple Angel Ambassador and TimeSlips facilitator. I spent my time in New York, Wisconsin, and Rhode Island learning, sharing, and helping others become relational with those with dementia by using creative engagement.
In January I became an AFA Dementia Care Professional.
In March I was on my first podcast hosted by Allison Lazicky and became a Certified Dementia Care Specialist (CDCS).
And now, May of 2018 I mark one year with great joy and filled with inspiration from the many people and organizations who work to help all of us live well with dementia and who invite us to look at aging and the progression of life in new and positive, real ways.
What’s next? Well, this was only my side of the story, come back tomorrow to join in Day Two of the celebration and find out how we may walk together.
This week’s true expert is Kate Swaffer. She is a blogger, author, poet, and activist. She is a beautiful example of what it means to live well with dementia. She shows us what can still be accomplished despite/because of dementia. She shares a perspective that constantly makes me question and guides how I approach my work with dementia.
Join me in learning from the work of Kate Swaffer.
Her website: https://kateswaffer.com
Her Second website: https://livingbeyonddementia.com
This week I want to highlight Brian Kursonis as this our True Expert. He is the founder of Faith2care. I first learned about him via a DemenitaRaw FacebookLive interview which you can watch via the link below.
Join me in learning more from Brian Kursonis.
Read More about Brian: https://www.withalzmyheart.com/about.html
DemenitaRAW interview: https://www.youtube.com/watch?v=dcNGQgw7Nec
This week I want to highlight Norman McNamara. He is the founder of the Purple Angel Dementia Awareness Campaign, author and a wonderful advocate for those living with dementia. He was diagnosed with dementia at 50 and has made it a mission to create and inspire a dementia-friendly world.
I encourage you to join me in learning from Norman McNamara.
Purple Angel: https://www.purpleangel-global.com/index.html
The Lewy Body Soldier: https://www.amazon.com/Lewy-Body-Soldier/dp/1536805874
I want to, over the next few weeks, introduce to you individuals with dementia who are our true experts. They are the ones who help us become a better community by sharing their experiences living with dementia.
This week I want to highlight Brian LeBlanc. He is a member of the Dementia Action Alliance Advisory Council, a public speaker, and hosts a video podcast called This Dementia Life. In the few months that I have been aware of his work, I have learned so much and am a better care partner because of his willingness to share his knowledge.
I encourage you to join me in learning from Brian LeBlanc.
Facebook Page: https://www.facebook.com/pg/ALZUpCloseandPersonal/about/?ref=page_internal
Video Podcast: This Dementia Life
You cannot speak wishes of a Happy New Year without resolutions coming to mind. They are linked and inspire a sense of a better life each person is seeking to create for themselves and their family. These resolutions frequently are about appearance. They are made with hopes of having a house that is organized like that of a magazine shoot (or would it be more relatable to say Pinterest board), and they are made so that we, our bodies, might look a specific way, from the way our hair is done, to the percentage of body fat we carry. It is about beauty, and all too often outer beauty, social status beauty. While there is nothing wrong with wanting an organized home or a healthy mind and body, in fact, they are quite necessary, our resolutions fall short and put back up on that pedestal, youth and the young. These resolutions come with the impression that we will live a full year, and that life is still young and many decades are in front of us. This is not always true. As I have shared my thoughts on resolutions with others, their responses only dig the anchor deeper, as I am told I am, “acting a bit like a crotchety old lady trying to beat up the world we live in today.” We see resolutions, growth, and health only for those who are still living within the first 2/3rds of life. Never have I heard anyone ask someone who is older if they have made their New Year’s resolutions yet. Or, ask them how the resolutions are going at the end of January when most of us have long given up or moved on from our own. Some of this could be that with the wisdom only gained through age, they are beyond resolutions and don’t need them. What I think has greater accuracy is that this is yet another way our society has put a negative image on aging, a word that is moving closer and closer to the “Words That Are Inappropriate To Use” list. There are thoughts that because someone is old, they cannot make resolutions for themselves, they could not possibly think it is realistic to grow and improve their lives all because they could not keep up with the latest fitness and diet trends. We have too many negative images of aging for me to believe our society thinks otherwise.
While I am in fact young, and on paper, I do have decades to live, I work with many who are not young or don’t know how many more breaths they will take, and don’t know if they will make it to tomorrow. Some of these individuals have given up on life, others are trying their best to get up each day with a smile. When I have asked the question, “Do you make New Year’s resolutions?” I find they don’t make resolutions about having the perfect home or the perfect body. They make resolutions about trying to improve their outlook on life, or staying active, social, and staying connected with family, or finding ways they can continue to learn. In listening to their resolutions we learn how to find joy in the imperfection of life, and how to have hope through fear and the unknowns. So, as loved ones, as caregivers, as medical and non-medical professionals, as therapists, as creative arts therapists, artists, and community members, our resolutions this year, and all the years to come should be this:
This year my resolution is to live a joyful, dynamic, peaceful, creative, and giving life. To help others do the same regardless of their specific challenges, dreams, age, or time left on this earth. Regardless of the presence of dementia, or the struggles of caregiving. We can do this. To live a life seeking the beauty and the good in one another, and in ourselves. Our resolution is to love, to be hopeful, to seek the Truth. To judge less and dream more.
This resolution is ageless and looks more at the beauty of our world, our inner self, our society, of life itself, and less at the appearance of our home and our bodies. Here is to another year! Another Breath! Another moment to live our dynamic lives.
As always, we are a community of diverse individuals, each one of us has our own experiences with aging, health, community, and dementia. This is my experience and just one experience. If you would like to share your story of dementia with us by writing a blog post, commenting, or sharing directly with me your experience please feel free to do so. The more people that speak up and share, the greater our knowledge can expand.
When I was 10 years old, I learned that traditions will change, come to an end, or begin. They would change not because I was getting older or living in different cities, but because of events in life that can change our family. The Christmas of 1999 was the first Christmas after my grandfather’s stroke, and the first Christmas my grandma would be spending without Poppa’s help to prepare for the holidays. That year we started a tradition that would take place on the third weekend of Advent. I would go over to her house and help her decorate the Christmas tree. It started simple. We would decorate together, listen to Christmas music, and I would frequently spend the night. Through this, I experienced the changing of traditions and realized that the childhood Christmas I lived for would not always be recreated year after year, just as I knew and loved. That because of my grandfather’s stroke, things changed. Change we didn’t necessarily want, but where required to accept because of events that took place in our lives. We kept up this tree decorating tradition until my grandma’s last Christmas in her house in 2007.
As time passed I had to admit that my grandmother was getting older, but not just older, that she had Vascular Dementia. That first Christmas after her diagnosis in 2005, was when I started to help her with additional preparations. I began helping her wrap presents for family and friends, seal Christmas card envelopes, put up other decorations around the house, I took a larger role in baking cookies, and, once I had my driver’s license, I would take her Christmas shopping. Eventually, my grandma no longer actively placed ornaments on the tree but would watch, and we would talk as I hung each ornament on the tree, sometimes where she dictated one to go. Despite the sadness of my grandmother’s decline, the new traditions didn’t feel like a burden, but a gift. They became a way for me to first admit that she was getting older, had dementia, and was declining. This allowed me to cherish each moment with her, as well learning to see moments I spent with others in my life who I suddenly realized, would not always be around. It was a gift to learn that at the end of the day, it is not the exact placement of the decorations and the type of wrapping paper used or even the exact Mass time and place we attended (one I still struggle with) that make Christmas. It was recognizing at I am spending time with people who mean the world to me. I learned to see in the moment that these individuals, these family members, and friends are what enrich my life and this season. I have always been a thoughtful child, or shall I say aware child, but it was her diagnosis with dementia that deepened what I was seeing, causing me to fully admit what I didn’t want to be true and in doing so, allowed me to enjoy each moment instead of fearing its end.
The Christmas of 2008, after my grandma moved into a nursing home, was the first Christmas I didn’t decorate her tree, but as I had learned 9 years ago, it was the time spent with her that was the tradition, not the tree itself. So, every third weekend of Advent, I would go visit her bringing with me a plate of cookies. We would talk or sit in silence together and look at the decorations around the nursing home. She has now passed away and what was our tradition is now a memory. I am grateful for the gift to have recognized the role she played in my life in helping me to see the important role all of my grandparents, parents, my brother, and my great aunts and uncles play in my life.
As the preparations are made for our loved ones with dementia, remember the gifts of the moment, that despite the presence of dementia, we don’t have to allow traditions to fold and crumble, we simply need to alter. That the time you spend with these individuals this day, and all days, is treasured gold. No one knows if it would be a good day or a bad day, if they are well or ill, what they will remember or forget. Leave those worries of the day with God, and allow the gift of still being able to hug them, “Merry Christmas” be what you remember, what you look forward too, and what you cherish. Take pictures, journal about the time together and stories shared, set aside your differences with family and friends, and know that this time together is their gift to you.