To Build Our Community

Day Two!

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!

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.

True Experts

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

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

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/

 

To Live a Dynamic 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.