A Starting List-What To Do?

Artful Approach, Dementia Compass, Personal Story of Dementia

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.

 

 

New Training Programs Offered!

Artful Approach, Dementia Compass, Understanding Dementia, What Is Dementia

I am pleased to announce that I have developed two new training programs that I am introducing this summer. In addition to Understanding Dementia, Facilitation of Teepa Snow’s GEMS, and Dementia at Work, I now will offer, Engage with Dementia, and Young Ambassadors: Dementia Training for School Age Children. Below is a rundown of each training program. If you are interested in offering any of these for your company, organization, school, church, or even your family please feel free to contact me via the Contact page on this website, or email me at KLFassbender@gmail.com.

Understanding Dementia: This 45-60 minute training covers the basics of dementia, going over different forms of dementia, current statistics, briefly looking at the cost of dementia, and basic ways to work with individuals with dementia. A resources guide is provided upon completion of the training that will lead you to community and national resources. The training is fitting for any setting or group and is a classroom training. The cost of the training is $75 or Free if you are becoming a Purple Angel, or are a family.

Working with Dementia: This 45-minute training covers the specifics of how to navigate dementia relationships in the workplace, be it through clients, customers, consumers, and visitors. This training is fitting for insurance companies, the remodeling and construction industry, those in the service industry, restaurants, museums, and other places of business, and is a classroom and experiential training. The cost of the training is $50 or Free if you are becoming a Purple Angel, or are a family.

Engage with Dementia: This 2 Session, 60 minute each training covers how to become engaged creatively with dementia, how do we develop meaningful programming for those with dementia, applying creative engagement to any role be it a nurse, activities/Life Enrichment specialist, or CEO, and understanding the balance between extroverted and introverted programming and communication. This training is designed specifically for Care Communities such as Hospitals, Nursing Homes, In-Home Care providers, Assisted Living communities, as well as for museums and those seeking development of intergenerational programming. Upon completion of the training a resource guide is provided along with ongoing mentorship and consulting, and one program developed specially for the site. This is a 2 part classroom and experiential training. The cost of this training is $100.

Young Ambassadors: Dementia Training for School Age Children: This 45-minute training covers the basics of dementia presented in a way suitable for school age children. This training is designed for schools, and children’s programming organizations such as summer camps and after school care and is an experiential training. The cost of this training is $30 or Free for families.

TimeSlips: More than Storytelling

Artful Approach, Dementia Compass, Timeslips Story

By now you have read two TimeSlips stories, but I have mentioned little about what it is and how it is used. TimeSlips, as described by their website, states, “TimeSlips offers an elegantly simple revolution in elder care by infusing creativity into care relationships and systems…TimeSlips provides hope and improves well-being through creativity and meaningful connection.” I have experienced this as a Certified TimeSlips Facilitator. It is by far, one of the most successful and impactful programs I have used in every setting of dementia care.

TimeSlips started in Milwaukee, WI in 1998 by Anne Basting, and has since reached 42 states and 12 countries. It is lead by Certified TimeSlips Facilitators but is also something that family members can lead by using the Creativity Journal. This method is backed by research. Information on that research can be found on their website.

In a very simple way, TimeSlips is a method of creating stories using an image as a prompt. These images often have movement in them and are not of anyone, or any place familiar to the storyteller. This can be expanded and adapted in many different ways. I encourage you to read some of the stories shared on the website. These stories can take the storyteller many places and encourage creativity and joy. Individuals with dementia, often communicate through storytelling and using TimeSlips becomes another form of that communication. It is a way for them to share their lives, and to give to those willing to listen. When I am working with a group or individual to create a story I open it up to all kinds of prompts. Sometimes these prompts may be music, artwork, different smells, sounds, videos, and of course, photos. I make sure there is movement, and at first, does not show their home, or faces of family, friends, or themselves  (I may introduce these elements later, depending on the direction we are taking and the person I am working with at the time). I start by asking a question, “What do you think of this image, dance, smell, sound?” With this single question, a story will blossom, through my asking of other questions and our conversation, the story will grow. By the time 20-30 minutes are up we have a short story that we may expand on week after week, turn into a play, a book, a new art piece, or leave it as a short story. We can share it with others, or keep it to ourselves.

As we are creating the story I mostly ask questions, but at moments I will fill in my own answers. I want this to be their story, but I also want this to be our story. When my job, our job as caregivers, is to become relational with the individual, it is important that we develop ground we can share. They have full input into how each story moves forward, and what we do with the story upon completion. One thing that I always do for the individual or group is to create a book after we have told about 10 stories. I will hand make a book using their stories and ideas as to how the book will look. They are the editors, I am the compiler. With each book, I also create an e-Book and audiobook. This can be done by simply scanning the pages of the book and exporting them into a PDF. Having an e-Book means that all will have access to reading the stories. It allows them to blow it up on a computer or mobile device (yes, many people I work with have iPads, iPhones, or other forms of technology). This PDF from can be easily read. I create the audiobook for the same reason, with an iPad and the GarageBand app (the simplest way to do this), we record the stories, create an intro and a closing, link everything together, and maybe we can add music, different voices, or I can become the voice for the stories. I often do this in short pieces as we go along, playing back the story for them at the conclusion of each time spent together.

The great beauty of this process is that through telling a story, even an imaginative story, our reality seeps into the lines and paragraphs. I have yet to have an experience where upon completion of the story, I don’t learn that a part of the story was something the individual experienced or still experiences. Through these stories, I learn about battles from WWII, farm life in Ohio, what is might be like to lose a child and a husband in one day, about what summers smelled like in Texas in the 1950s, about what it was like to ride on the wings of an airplane, or to be a teacher in rural Wisconsin. I learn about the people that impacted the person’s life, and what they loved about their life, and even about their regrets. This is information I would not have discovered outside of this method. Even with dementia, they can share their life with another. It is beautiful. It is sad. But, aside from the details of the story, it is always joyful, and specifically for me, always informative.

Timeslips is a storytelling method, but it is also a way for us to give to each other, listen to one another, and bring a meaningful moment to another person’s day, week, month, year. It connects people. It is intergenerational. It is creativity at it’s best and highest awe inspiriting moments.

 

 

To learn more about TimeSlips, or to become a Certified TimeSlips Facilitator click on the links attached.

A Poem by Norman

Artful Approach, Purple Angels

In preparation for tomorrow’s Lewy Body post, I want to share with you a poem that was written by Norman McNamara who what diagnosed with Lewy Body (Bodies) Dementia at age 50. He is, in addition to the founder of the Purple Angel program, the author of the book, The Lewy Body Soldier

Please do not Mock Us

Do not pity me because i have dementia,
Nor must you mock me because i have lived so long with it,
You would always choose to live well over not doing so, wouldn’t you ?
So why cant i do the same?
Thing is, i have no choice in the matter
I have no idea how i will be on a daily basis,
I cannot make plans for the future
The uncertainty of what the next day brings is unrelenting,
I dont know why i have lived so long with this illness
I dont know why i am still able to do what i do,
But i do the best i can do,, wouldn’t YOU ?
i am sure you would do the same,
My time with my family and friends is precious,
Yes the fear of not knowing hangs over me,
And yet, i carry on, best i can, brave face and all that,
Though I weep when my friends pass away,
Especially those who were diagnosed after me,
The guilt is all consuming and yet, and yet
Here i am, there are you, not that much we can do
Enjoy your lives in the knowledge you are special,
No need to mock me or others who live their lives under this dementia cloud,
We are no different than you, maybe just a little more grateful from day to day

Norrms McNamara