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.

 

The Unexpecte​d Gift

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.

What Dementia Can Not Destroy

Every Sunday I scroll through the obituary pages. I hold my breath as I follow the list and pray I don’t recognize a name. I breathe a sigh of relief when I get to the bottom and I didn’t recognize a name, or, like what has happened a few Sundays in a row, my heart sinks when I see the name of someone I have worked with in the past or present. “It is strange that a 28-year-old looks at that page of the newspaper,” some have told me. This weekly ritual is an outcome of my job. Some call it an occupational hazard, and if so one I will gladly take on. I don’t think of it that way. It is part of living, of coming to care about another individual. Every day I am asked to become relational with those whom I work for in the memory care, assisted living, and nursing home communities. In becoming relational we teeter on that balance between professional and personal relationships. I come to care about them, and they come to care about me. I become a sort of niece, granddaughter, even sister to them, and they become additional grandparents, uncles, and aunts.

The individuals whose names I saw in recent weeks were especially impactful on my life. They made me smile and were sources of great learning. The first person caused me to ask questions, to think about how I care for someone. My eyes were opened wider because of the stories she shared with anyone who would listen. I gained insight into what it was like to grow up in Nazi Germany and live through the horror of that time, to move to the United States post-WWII as a German. I learned what it was like to be a university professor and a great scholar in the 20th century. The second individual was someone whom I did not spend as much time with, yet taught me to laugh a little more freely again. We connected through a similar faith, and love of family. He reminded me what it was like to leap, and the freedom that came from doing so. Many of the stories and moments shared will remain between the two of us.

Reflecting upon these stories and moments shared, I am again aware of what dementia can not destroy. I am reminded of the lessons these individuals still could teach, and hope they could still inspire. All too often I see people brush off our elders, not bothering to take time to hear their stories that help make the listener a better person, our society a better place to live. We have so much to learn from our elders regardless of the journey their life has taken, regardless of the diagnosis in their charts, and how they appear to be sitting in the chair across the room. A better future comes from learning what our elders lived, what they learned, and what they wish to pass on. Take a moment, sit, listen, and long after they are gone, still hold in your heart their spirit. It will make you a better individual, a better care partner. I can guarantee you that much.

A Starting List-What To Do?

Each time someone learns that I am a Dementia and Creative Engagement Specialist, someone will tell me their personal story of dementia. I will learn their grandma had Lewy Body Dementia, or of their mom having early-onset Alzheimer’s, or their grandfather has Vascular Dementia. Not once have I shared my work without someone sharing with me that they too live/lived with dementia. More and more of us will be impacted by this terminal disease yet our knowledge and the way we care for those with the diagnosis and their care partners are sometimes limiting. As many people there are with dementia, that is how many paths will be experienced. My personal experience with dementia, the bullet point version? My grandma was diagnosed with Vascular Dementia in July of 2005. She lived with the diagnosis of dementia for 6 and a half years. Those years were graced with an excellent doctor, and good care at the nursing home she lived starting in 2008 until her death in 2012. She had a handful of family members that visited her regularly and had a care plan that helped her sustain the best quality of life possible.  This is not always the case.

After sharing with each other our experiences of living with dementia I am often asked what steps should they have taken, what steps should they take now to help improve their lives and the lives of their loved one with dementia? It is next to impossible to come up with a universal list, but regardless of what type of dementia your loved one has, and where they are in the progression of the disease, this list might be a good starting point.

1. Love them as you always have. Caring for them as another human being. Visit them, maybe even with a cup of ice cream!

2. Have patience with them, and yourself, as the disease progresses knowing that the person they are today may not have been the person they were yesterday, or 10 years ago, the person they will be tomorrow. It can be difficult but live in the moment, finding a balance between who they are now, and who they were. Cherish the moments when they are having good days. If they are struggling to find a word, or cannot remember something, don’t rush the conversation, redirecting if needed.  And understand that everything they do, from trying to help someone, to the words they speak, to the yelling is a form of communication.

3. Find a really good doctor if you can! (If you want to become a doctor, or are in school now to become a doctor PLEASE consider going into Geriatrics! Or at a minimum study and work to understand dementia.)

4. Find a support group! These can be in-person groups or an online community.

5. If they are a person a faith, work to make sure that their faith is still being practiced. Pray with them! Take them to Mass/service.

6. Learn what makes each form of dementia unique, learn about what medications, care plans, and support work best for the specific type of dementia your loved one has, and then keep learning.

7. Encourage the places of business you visit to become Purple Angels.

8. Know that dementia does take away, but it also gives. It gives you time to spend with the one you care about in a new way. It allows you to engage with them creativity, to record their story. Don’t allow what they might no longer be able to do, to prevent you from spending time with them, engaging with them in ways that are creative, educational, social, and new.

9. Take care of yourself. Self-care is a trendy thing right now, that doesn’t mean you should fluff it off as you roll your eyes. Take time to mourn the person they once were, and find ways to breathe, find joy in your life, and work through the difficult times. Seeking support when needed, and know that dementia is an improv show. We are all taking what each moment is giving us, and then moving it forward the best we can.

10. Respect them. Don’t yell at them, Don’t ignore them. Even when it is difficult, still visit them, treating them as you would like to be treated.