May I Introduce To You…

Every Thursday in April over on the Facebook Page, I introduced a few people that I follow. Many are dementia specific, others aging, and some about life.  I want to share with you today these individuals and organizations.

 

Amy’s Place

OMA (Opening Minds Through Art

Imagine That!

Playscriptions Shay’s Way

NYU Aging Incubator

Top-Notch Teams

K-State Center for Aging

AlzAuthors

Spark Alliance

Alzheimer’s Speaks

The Longest Dance

Frye Museum Creative Aging Program

 

When the Mind Goes Blank

Today, May 8th is a day that is sandwiched between two anniversaries. Yesterday, May 7th would have been my grandparent’s 72nd anniversary. Tomorrow, May 9th is my parent’s 31st anniversary. For my entire life, it has been a time of celebrations and family. It is a time when stories that reflect the past come up yet it has not always been a time when questions were asked. Now that my grandparents are gone, as well as many that would have attended their wedding back in 1946, some of the stories are gone, and questions come up sometimes daily that are left unanswered. I think of my parents, still alive and well with years left to live yet my mind draws a blank on the questions I want to ask, and about the stories I want to hear. We can learn so much from our families past, yet how can we learn when we can no longer hear the stories, or think of the questions to ask? There is knowledge out there to be gained, floating somewhere in the abyss. The same is true for my other set of grandparents who the past January would have been married 56 years. I want to know, but where do I start? 

This cycle of thought reminded me of what we might need to help families when they are caring for a loved one. Speaking from experience, as dementia progresses the questions surface and you wish had months or even years left to ask those questions. We want to remain connected to our loved ones until they no longer are with us. By knowing their story in color and detail we can not only better provide for and understand what they might want or need, but we can feel whole when the loss comes. In this meandering of thoughts this day, I took time to take a step back and come up with questions you might want to ask your loved ones no matter how old, no matter their current state of health. From the joyful to the serious, to the playful, to the sad, let us work to learn the story of those closest to us.

1. Where did the two of you meet? (When talking to your mom or dad)

2. What was a song you loved to dance to or sing along to together?

3. What was your greatest struggle when you were young?

4. What was your greatest triumph growing up?

5. What is your favorite month of the year?

6. Where would you have loved to live? Visit?

7. What was/is your favorite hobby?

8. What was one struggle you had with your parents?

9. What is your favorite moment spent with your parents?

10. What is your greatest fear?

11. What brings you the most joy?

12. What was a favorite game you played or toy you had when you were little?

13. What was your school experience like for you?

14. What were your feelings on your wedding day?

15. Did you ever have any pets?

16. If you could get a pet today, what would it be and what name would you give your new pet?

17. Where were you baptized?

18. What were your grandparents like and did you spend a lot of time with them?

19. What is your favorite flower?

20. What do your dream for your life tomorrow? 

Hopefully, this gets the gears in your mind turning during your next family gathering and opens up your time together to the sharing of great and meaningful stories.

Note: As I was about to hit publish on this post I thought I would do some digging to see what else is out there. I found this list that has 150 questions you should ask your family members, and this Over Share card set that I remember hearing about from Mindy Bolton of Playscriptions. Both of these options offer more of the silly and serious. 

True Experts

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

Let Us Run…or Walk

May we no longer run away, but rush towards those who are diagnosed with dementia and their loved ones.

The story is common, someone, a friend or family member, is diagnosed with dementia but instead of the community rushing towards them, starting GoFund Me pages, and becoming advocates for dementia, they scatter, leaving the person with the diagnosis and their closest family alone, feeling another loss they can add to this journey. Why is this? I suspect that, unlike cancer, other illnesses and diagnoses, dementia has a terrifying stigma. We fear the journey, misunderstand the disease, research is confusing and at times conflicting. It causes us to come face to face with the mortality and fragility both of mind and body, forcing us to admit that our loved ones, and even ourselves, are mortal. For those of us who boldly face dementia, our mission is to provide the best care and life for those who live with the disease. This somedays can take all that we have in us, leaving little room for anything else, much less trying to build friendship and community. That is where those of us who are not currently caregivers or have a vocation to support those living with dementia can come and tap you out, if not in direct care, in education, and in advocacy. We can “hold the bucket” and allow you to do what you need to do in order to be your best self, in care and in life. We are here saying, “May we be a member of your community?”

Our job as individuals working with dementia and having lived through it in some form is to make ourselves known to speak up and let others know we are here. Let all of us, who have lived with dementia help bring back family, friendships, and community where we can, and be present in place of those whom you have left your side because of dementia. This journey may be about loss, but it can also be about growth. May the shared stories of dementia continue, and may we all create joyful connections where gaps are found.

True Experts

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

The True Experts

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

Dementia Action Alliance website: https://daanow.org/advisory-council/

 

The True Experts

If I am honest, everything I know about dementia I know from the science/medical perspective. If I am honest, everything I know about dementia is an interpretation of what has been shared with me by someone who has dementia. If I am honest, everything I know about dementia I know from what I wish I knew when my grandmother was first diagnosed.
If we are honest, we only know second-hand stories of dementia. That does not diminish the medical understanding, the continued research, or our caregiver experience, but it reminds us that we must listen to those with dementia; to hear their wishes, their needs, their sorrows, and their joys. Each time I read a blog post, hear a podcast or watch someone with dementia give a presentation, I am humbled by their stories. I am reminded that while I may be knowledgeable, and seen as an “expert” they are the true experts. They are the individuals that call us out when we waver and teach us each day what living with dementia really means. This month I have focused on sharing with others the programs and resources I follow, facilitate, and use, but starting on Monday I want to also introduce to you individuals with dementia, those in the public eye. They are the experts that make us all better care partners, better family members, community members, and better individuals. May we all learn from them, to see and hear them. To make sure that they are the always included in our work.

To Change the Landscape

I have always been interested in the connection between emotional memory and a theatre experience. Why can it at times tap into a part of oneself more than music? Yes, I dared to share that, MORE than music. My parents first took me to the theatre when I was 3 years old to see Rodgers and Hammerstein’s Cinderella. By all logical means, I should not remember this experience the way that I do, but it tapped into my emotional memory that was then built upon by every experience that occurred after that moment. Now you could argue that music played a large part in this as I saw mostly musicals, but I don’t think it was the music alone that did it or the rhythmic dance of dialogue. I saw my first movie in the theater I was 4, one year older, yet I have no memory of the experience, and music was involved as it was Disney’s Aladdin. Somehow A Whole New World didn’t stick, by In My Own Little Corner did. It was this particular form of storytelling, theatre, that found a way into my emotional memory.
As my interest and work in dementia progress, I become more curious about how theatre and dementia can work together. That same emotional memory that pushes forward my experience when I was 3, is that same emotional memory that helps us connect with loved ones with dementia, helps us become relational with them, that same memory that is untouched by the disease. All of the arts have the potential to use emotional memory to help someone living with dementia live well, and music and dance are getting a lot of attention right now in the field for this very reason (and rightfully so!) however, how can we best use theatre and theatre storytelling techniques to tap into the emotional memory to create valuable life enrichment programming? How can we use it to create an educational tool for children to teach them about dementia? How can we use it to teach others to become relational with dementia, and to not fear dementia which further engrains the stigma and doom and gloom narrative that has existed for decades?
As I have stated before, the arts have the greatest potential to shift the negative view of dementia. We listen to stories, to music, and view art, and while theatre is maybe not the strongest (read: most popular) player in the bunch it is one of the most versatile. Through the creation, exploration, and participation (passively or actively) in theatre, we can create training and workshops that can have a long-lasting impact on caregivers, children, and students who will potentially enter the field of aging. By engaging in a wide array of storytelling approaches we can become relational with those living with dementia, changing the landscape. With arts-based research and a larger emphasis on creative engagement and artful aging, I hope to see more imaginative processes blossom in the field of aging and dementia, in how we care for, in how we educate, and in how we support those living with this disease.

May All Be Wealthy

My wish is that all those living with dementia are wealthy. Um, what? Yes, wealthy. Not wealthy in terms of having a lot of money in your investment portfolio, although wouldn’t that be nice. I am speaking of a different kind of wealth. My wish is that all those living with dementia have hope and community. As caregivers and as fellow persons living with dementia, each one of us can play a role in this wealth. 

When we speak of hope, there a grand hope that one day a cure will be found, that care communities will truly become home for those that live there, that persons with dementia will be universally accepted as part of the conversation and education of dementia, and that every town across the globe can call themselves dementia friendly. These are the grand hopes that blog posts, speeches, and research grants place at their core. There are also little hopes, hopes that we can foster each and every day. Hope does not need to be for the years ahead or even the next day. There is wealth of hope if all we have hope for is the next moment. To have hope for an afternoon visit, a chat with a neighbor, an outing or activity we enjoy later that day, a good meal, a smile from someone we see, a moment of peace. If we help foster hope by the way we conduct our care, become relational with the individual, and in our planning of outings, actives, and meals, we allow for each person living with dementia to be wealthy in hope. We cannot force someone to become hopeful, or tell them they must be filled with hope, but we can foster the growth of it, and much like a laugh, it is contagious. 

We seek community, all of us do in some way or another. For some a community of three is just right, for others, the larger the better. Wherever one sits on that spectrum, if we have that community we seek, we are wealthy. We are beings designed for connection and without connection, through isolation, well…that can kill us. Our physical and mental health relies on having a community. When someone has dementia, that need for community becomes even more important in order to maintain a quality of life. Let us be present and community to one another. 

Yes, my hope is that all living with dementia are wealthy. Wealthy in hope and community, two kinds of wealth where money is not counted. 

Communication to Become Relational

Even for the most introverted amongst us, we desire connection to another human being. It is through this connection that we learn about who the person is before us. We see and learn about what brings this person joy and what brings them pain. We find an emotional level to connect to find a common space that we carry with us through our time together and apart. To do this we must become relational, but to become relational, we must learn how to communicate.

I am pleased to announce that I am now a Certified Dementia Communication Specialist. This certification is through the Silver Dawn Training Institute of DementiaRAW. I recommend anyone who works with dementia and in a care community become a CDCS. It is an invaluable training for all who wish to become relational with those they care for each and every day.

Click this link to start your journey to become a CDCS: https://www.cdcsdementiaraw.com