World Alzheimer’s Month Recap

Dementia Compass, Understanding Dementia

Over on the Facebook page, I have posted resources and things to consider when it comes to living well with dementia. Below is the recap of this past month.

Day One: “When you have met one person with dementia, you have met one person.” This is frequently said by those working in dementia care and is the key and first step to erasing the stigma surrounding dementia. A dementia diagnosis does not override the person, who they were, their life, their stories, their joys, their love, their being, and especially their worth. Each individual you meet will have a different journey, each care partner, theirs.  Everyone will have their own struggles, needs, and losses. They carry with them the life they lived and their desires for the remainder of their life. When you have met one person, you have met one person. They are more than a diagnosis, a chart, or a tag on a wheelchair or nursing room door. They are not people you can clump together the way you might items in your home. They are human, still needing love and respect, still giving love and joy. Let’s include them in on their care.

Day Two: Memory Cafés are a wonderful program that both the individual with dementia and the care partner can do together. Use this directory to find a café in your area and more about the experience.

Day Three: Remember that dementia is not just for those over 65. There are individuals who are diagnosed in their 20s, 30s, 40s, and 50s. They are often underserved as a result of being too young to move into many care communities, yet can no longer live in their home. Or, they are brushed off by doctors, medical care partners, and social care partners, for the reason of, “Dementia is only for the old.” This statement, however, is false. What can we do? Open our hearts and time to be there for these individuals, encourage programs and care communities in our cities to welcome and care for those with dementia regardless of their age.

Day Four: Ice cream! As we close out this summer season, how could I not mention ice cream? The power a dish of ice cream has is remarkable. It is simple. It is enjoyable. When going to visit a loved one with dementia we are often nervous about our visit, worried what type of day they are having, wondering if we will we sit with great conversation or in great agony? By arriving with their favorite flavor of ice cream, you instantly have a joy-filled moment. (It also can aid in sundowning, but more on that at a later date.) I encourage you to try it sometime. Arrive on a Sunday afternoon for a visit, with ice cream in hand and suddenly you have something to share, something that doesn’t require great conversation or effort, and one that doesn’t require them to be having a good day or a bad day. Sitting together with your dish of ice cream will become that emotional memory of, “I had a good day today” and that is one of the best gifts we can give someone with dementia.

Day Five: The Purple Angel campaign. If you look at this page’s profile photo, that is the Purple Angel. The Purple Angel is a global program with the goal of building dementia-friendly communities by going to local places of business, providing a short dementia training, and in doing so helping those with dementia and their care partners continue to live fully, with decreased stigma in their community. It, of course, is so much more than this, so click on the link and learn more about the great work of the Purple Angel campaign. Discern becoming a Purple Angel Ambassador yourself. https://www.purpleangel-global.com

Day Six: A new resource I discovered yesterday, AlzAuthors. They are a connection to the books written about dementia as well as authors themselves. Linked is their website. They also have a Facebook page under Alzheimer’s and Dementia Resources, and a Twitter page under AlzAuthors. And, they were the guests of Alzheimer’s Speaks Radio this week, https://www.spreaker.com/…/the-alz-authors-share-their-stor… hosted by Lori La Bey, another wonderful resource in dementia.

Day Seven: Bingo! Did anyone shut down when I said that word? I often do. Bingo is a popular program for care communities and is seen as a heavy hitter, bringing lots of people out. But, do they come out because they love the game or the company? I don’t believe we should throw the bingo cards in the trash, however, we cannot call it Life Enrichment. It is an activity, that can become a launching point for other programs. If you work in a care community, before you put bingo on the schedule for next week, find out why people come out for it? Do they love the game? Or do they love the company? Look for a longer post about this controversial programming subject on the website later this fall.

Day Eight: Teepa Snow’s GEMS. Teepa Snow is a name you will hear me bring up often. Teepa is one of the leading dementia educators in the United States and has developed a training program that breaks down the stages of dementia into 6 segments. It is a training you can take time and time again and learn something new each time. While she is not the only voice in dementia education, she has created the best overview training programs. Check it out and you will be amazed at how much easier it will help you relate and become relational to those with dementia.

Day Nine: I sometimes get asked what questions to ask when touring care communities. I came across this list today that I believe is a good start. Just like when you are touring college campuses, you cannot trust the pictures and brochures to be 100% accurate to the reality of life in the assisted living. So ask questions, both of the administration, and of yourself and loved one. In the case of dementia look at what the big picture care plan is, and how they might transition within the community. The fewer the moves the better.

Day Ten: Museum Programs. Across this country, from the Frye Museum in Seattle, to SPARK! in the Wisconsin/Minnesota, to the Connect2Culture arts affiliate programs in New York City, there are ways to see the Great Masters of art, music, theatre, and dance. I encourage you to see what is available in your area and encourage programs to form if there is a void. http://www.caringkindnyc.org/connect2culture/

http://fryemuseum.org/creative_aging/

http://www.alz.org/sewi/in_my_community_19695.asp

Day Eleven: Language. Caregiver or Care Partner? Care Community or Care Facility? Elderly or Older Adult? Suffering from or Living With? The language we use when talking about dementia and dementia care does matter but doesn’t always align with what is perceived to be politically correct, or what we as those without dementia often use. I have over the past year asked those with dementia (as well as those over 70) what they prefer. Here is what I heard: Caregiver or Care Partner, it doesn’t matter but family and friends are what they seek. Care Community and Home to describe Assisted Living and Nursing/Skilled Care Homes. Elder or Elderly is often preferred. For some the reason was that it indicated that they are wise, respected, filled with stories of life. Finally, Living with dementia. This phrase won with everyone. This is what I have been told, I encourage you to seek and use the language that those you care for prefer, not necessarily what the industry tells us to use.

Day Twelve: A phrase often spoken, and frequently forgotten, “We work in their home. They don’t live in our workplace.” For those of us who work in care communities or as in-home care partners, our job takes place in their home, and so while we still have a job to do, we are also guests. As guests in their home, there comes a need for a level of respect, dignity, and care for the individual’s life and home.

Day Thirteen: Visiting someone with dementia. This link will lead you to what I find to be a great list of tips for visiting someone with dementia. It is not easy, but it is crucial that we continue to visit, support, and love those with dementia. https://www.caring.com/articles/tips-visiting-someone-dementia?utm_campaign=fanpage&utm_medium=social&utm_source=facebook

Day Fourteen: Dementia Raw! Some of my favorite people to collaborate with in dementia care are theatre people, those who have an understanding of improvisation. I have already spoken about the need to be able to say, “Yes, and…” and Dementia Raw is a direct resource that can help you better understand and fine-tune this crucial skill.

Day Fifteen: Inspired by Mindy Bolton of Shay’s Way, Intergenerational Relationships, and Programs. The post I wrote earlier this week touched on the importance of becoming relational with those older than us regardless of if they have dementia or not. There are programs and research, and very academic articles published regarding this idea out there. As always, these are needed, but it does not need to be complex. Start by visiting older relatives, join church ministries that might serve the older adults in your faith community, volunteer at assisted living or nursing home communities, or take time to have short conversations with your neighbors who might be a generation or two older than you. You will change both of your lives by doing so.

Day Sixteen: CaringKind. For those of you in the New York area, this is a direct resource, providing support groups and other forms of assistance. For those of you who are not in the New York area, it can be a place of education and guidance. As a member of the Junior Committee, I can speak to the importance of this organization and the great impact they have on the community in terms of research, support, and education.

Day Seventeen: Fox Valley Memory Project. If you are in the North East Wisconsin area, the Memory Project is a fantastic resource that hosts multiple Memory Cafés, outings, as well as being a place for support and education.

Day Eighteen: Building a Care Team. When living with dementia it is important to build a care team that can help you with specific aspects of life. Here is a list of people that others have informed me are helpful. Take a moment to think about what you would find helpful and who you might need on your care team. Know that this will be different for everyone. Members of this care team can be for the individual with the diagnosis and/or the family.

1. Family, Friends, Community members that you can count on for being there for you and your loved ones socially, emotionally, spiritually.

2. Neurologist

3. Geriatrician

4. Palliative Care Doctor

5. Elder Law Lawyer

6. Nurse Practitioners

7. Physician Assistant

8. Local Organizations

9. Artists/Teaching Artists

10. Counselors/Creative Arts Therapists

11. Spiritual Director

Day Nineteen: Artists, Creative Arts Therapists, and the Arts. The thread woven through all of dementia care is the arts and the artists at work. These artists may be teaching artists, art education students, professional or amateur artists, creative arts therapists. All of them play a role individually and collectively in offering a quality of life and life enrichment to those with dementia and their care partners. Then there is the art itself, making the art, viewing the art. Research exists proving the importance and impact of art and health, art and dementia. As always this is good and needed, and must continue, but not everything in dementia care should be medicalized, researched, and analyzed. Sometimes you need to be an academic, and sometimes you just need to create, experience, feel. That is the arts.

Day Twenty: TimeSlips. My favorite type of story prompt when using TimeSlips happens to be impressionistic art. There is movement, a story to be told by following the brush strokes. It opens the world. We are no longer limited to creating a story but allowed to have an art history lesson as well, leading further to the creation of the individual’s own art. There are endless ways to use the TimeSlips method. Every time I facilitate a story with a different group or individual I test the waters, see what interests them and pursue that spark. If you have not looked into this process, or have gone through the training yourself, I highly encourage you to do so. http://www.timeslips.org

Day Twenty-One: World Alzheimer’s Day.

Day Twenty-Two: Alzheimer’s Poetry Project.

Day Twenty-Three: Individuals with Dementia. People like Kate Swaffer, Norm McNamara, Wendy Mitchell, and anyone else that has dementia and are sharing their story, helping those of us without the diagnosis better understand, improving our understanding how and where they need us. These individuals are the best resource we have. And it is not just those in the spotlight, but anyone and everyone we encounter with dementia.

https://whichmeamitoday.wordpress.com https://kateswaffer.com

https://www.purpleangel-global.com/about.html

Day Twenty-Four: This page, Bonae Memoriae. I hope that I may be a resource for you as well, be it through coming into your home or community to facilitate programs, lead a training session, lead a memory café, help you develop programs that you can lead, or simply act as a sounding board. I am here.

Day Twenty-Five: Recognizing the difference between curing dementia, and improving the quality of life. Frequently when I share the work that I do I get a response of, “Does that prevent the decline of dementia?” There is the desire to make everything we do/the only thing we do in working with dementia a cure, cause a change in their decline, in their brain. This happens with everything from the therapies, to activity and life enrichment programs, and even the meals served in care communities. I am fascinated by neurology and the work that does impact the brain, BUT, we are leaving a large hole in helping those with dementia when we look purely at the medical and ignore the spirit and life of the individual. Find freedom to do something simply because there is joy in the time together, in the activity.

Day Twenty-Six: BrightStar Care. Companies such as BrightStar Care can help with care when your loved one is still living at home and go above and beyond basic medical care. In my experience with BrightStar, I have come to find they care deeply about becoming relational with those they care for and the individual’s family. When selecting care providers, it is important that you find one that you are comfortable with and trust.

Day Twenty-Seven: The Caregiver Prep. I came across this page today and what stood out to me first was that it is not a doom and gloom only list of tips. It is clear, a little hopeful, and I believe to be very helpful. Take a look.

Day Twenty-Eight: Selecting a Care Community. When it comes to selecting an Assisted Living or Nursing Home once living at home is no longer the best place there are many things to consider, from cost to type of care. This list and guide have been compiled by the Alzheimer’s Association.

Day Twenty-Nine: Telling children about a dementia diagnosis. Out of the UK comes this guide for how to tell your children about a loved one’s diagnosis of dementia.

Day Thirty: Aging in Place/Universal Design. When staying in your home, deciding that in-home care is the best decision for you or your loved one with dementia, modifications to your home may be a good idea or even needed. This is a process you may start at any time regardless of age or diagnosis and is something you might want to talk to your contractor, remodeler about if you are in the process of building a home or remodeling your existing home about it. I highly recommend having a Certified Aging in Place Specialist (CAPS) or Universal Design Certified Professional (UDCP) work with you as your designer and/or remodeler. Hiring a CAPS/UDCP to help you with your remodel will ensure you that they will have up to date information on the appliances, door widths, tub and shower options, grab bar information, color and lighting ideas, and so much more, to make maneuvering around the home easier and safer. If you are in the Appleton area, Distinctive Renovations might be a company to consider. They are members of NARI (National Association of the Remodeling Industry), between the two owners Gary and Susan you have talented designers who are, between the two of them, both CAPS (Gary) and UDCP (Susan). Distinctive Renovations is also the only Purple Angel Design and Remodel firm in North East Wisconsin.

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.

Simple Joys

Dementia Compass

As family and friends of someone with dementia sometimes the simplest of actions bring the greatest amount of joy. All of the programs and certifications regarding dementia serve a purpose and are greatly needed, but what is also needed is human interaction, time spent with another person. When my grandmother was in the mid-stages of Vascular Dementia she would have benefited from some of these programs, but at the time they were not available or known to us, but what was available was our time together. I have memories of my dad during his visits on Sundays bringing some type of baked good that they would enjoy together. It was simple, inexpensive, but it was taking a piece of her past (her love of baking and sharing food with family) and bringing it into her present. It was simple but brought a great amount of joy. Similarly, when I would visit, during the hour to two hours I spent with her, we would just look outside, or watch a movie on TV, there were days when we wouldn’t say much but we spent time together bringing pieces of our time before dementia into our time now.

There is a fear I often hear about from family members and friends of those with dementia, that they don’t know how to spend time with that person anymore, they don’t know how to communicate. There are training programs and certificates for that as well, but what I have often shared with them, is that one of the best ways to spend time with them is to do just that, spend time with them eating an ice cream cone, sharing a cream soda or cup of tea, or splitting a beer (if okay with current meds), watching a movie, listen to music, anything that may be a part of their past joys. The things we find joy in do not leave us the moment dementia enters our lives, it just shifts. Learn to sit in the silence with that person, enjoying each other’s company. That simple act will bring great memories and joy to their day. Speaking from my experience, once they are gone it is what you will remember far more than anything else you might do together during this time. So as I share programs and introduce you to training opportunities always remember that this exists, the simple joys of sitting with the ones we love.

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.

The Both/And of Caregiving

Dementia Compass

To be a successful dementia caregiver we must live in the Both/And. The Both/And of both seeing the person who was, and seeing who the person is now. We cannot make them live fully in the present and we cannot make them become who they were before dementia, and so it becomes a Both/And. To live in the Both/And is not always easy, it requires us to think and live outside of a set box and into the fluid landscape. We need to live in the Both/And when it comes to determining care, and in our everyday interactions. We may both work to honor their wishes, and do what will provide them with the highest quality of life with the care they need. We cannot always predict the path the diagnosis will take, so what was determined before the disease advanced may no longer be safe for you or the person with dementia. We must both do what is safe, and find ways to honor the person we are caring for at the time. We need to both make sure they are properly cared for, and respect their vision for their life, always finding ways to make pieces of that life a reality. We must find ways to spend time with them that both are a part of who they were, and work for who they are now.

The short film, Fragile Storm comes to mind when thinking of the Both/And. I heard of this film several weeks ago, but only got around to watching it recently. If you have not seen it yet, please pause here to view the film. Warning: It is a little dark, and we need to remember it is still a film and that Both/And is only one layer. Viewing of this film will not hinder your ability to read on and understand.

Fragile Storm is about one caregiver who is trying his best to keep his wife’s wishes for how they will live as her disease progresses. While he is following her wishes, it is no longer safe for her to live in their home; it is no longer healthy. She is picturing herself young, yet fully in the present. She is living in the Both/And time. He is working hard through pain of both the physical and emotional, trying to keep her in their house as she wished, but their qulity of life and their saftey is gone. He is not in the Both/And of dementia caregiving. When I decided to sit and watch this 9-minute film, because of the podcast, Alzheimer’s Speaks, I knew roughly what the film would be about but was glued to my computer screen as it played. Upon the rolling of the credits, I started asking questions, thinking about my experiences as a secondary and non-medical caregiver and thinking about the caregiver’s need to live in the Both/And. Have I lived in the Both/And while in the role of caregiver? Have others around me? How would this particular situation improve if Norman was living in the Both/And, seeing and honoring who she was and her wishes, and admitting, seeing, where she is now.
Fragile Storm is only one example of the caregiver’s Both/And. It can also be present in our daily interactions regardless of a person’s stage in dementia, place of residence, or level of care. So often we want to see the person for who they were, the person before dementia, and that is good, that is needed, but it is not the full picture. Their needs have changed, their personality may have even changed, and they see the world through a very different lens. This view means that to help them reach the highest quality of life, and to remain relational with them we need to see them for who they are right now, at this very moment. We can both remember who they were, using that as a foundation, and we can see who they are today and meet them at the corner of Both/And.

 

 

P.S. I will dive deeper into Fragile Storm and my thoughts at a later date. It is a layered piece that stirs up many reactions and thoughts. If you watched the film, I would like to hear what you think of it.