The In-Between

“You have personality, Honey. That is so important in a woman!” -Mary R. 

These words were repeated to me each day by a woman I once worked with, and for, in an assisted living community in North East Wisconsin. She was vibrant, she was honest, and she gave us a new way to look at aging. She was not 108 years old and still living strong, or a 90-year-old marathon runner. She also did not live as if life was over because she was “old.” She showed us what it meant to live well despite needing a wheelchair and living in an assisted living community. She found ways to love life, to bring joy to each moment. She found ways to give to others even if the gift she gave was only a smile and a “hello.” She proved to us that you don’t need to extraordinary to live well at an older age. Had her story been projected into mass media, our view of aging would have shifted towards the positive, if only by a few marker points. 

For all of us, exists the ups and downs of life. We have moments when we ache or feel old. We have moments when life feels like it is bursting open for us. We have moments when life is just…well…life, with the mundane tasks and the exhaustion of our responsibilities. For those of us under a certain age, society is still on our side telling us we have our entire lives in front of us, or that we still have many great years to live. The world is telling us we still have a reason to get out of bed in the morning, to have hope, and to live our lives. This allows us to combat the downturns and sadness, but what if we didn’t have that cheer team? How would we react if the world is saying to us directly or indirectly that, “Your best days are behind you” adding to our bad days, feelings of hopelessness? No wonder depression rates climb, people get “cranky,” and overall health is not all that it could be for the older population. The way our world reacts and interacts with the elders of our community should not be negative, but positive, allowing each person to flourish in ways that are right for them. Ageism clouds our relationships and our thinking.

Even with the upswing and support rallying behind this subject we still are stuck making little, if any, changes in our communities. We have dementia friendly communities, and advocates for dementia and aging who are easy to search and learn from, yet our media and our actions show no sign of this upswing. We praise the 90-year-old who just sold their first painting and the 100-year-old figure skater, but we tell the 93-year-old who is bound to a wheelchair in a skilled care community that they are a burden and don’t need to live any longer, or we make invisible the 89-year-old down the street and wonder why on earth they are still living at home. We think everyone over a certain age is no longer capable of living in anything but an assisted or skilled care community and that they all have dementia. We criticise the “old” then moments later share that viral social media post of a 98-year-old who still swims laps at the local pool. There is something between the youth and the extraordinary older adult, it is the in-between, who regardless of where they are living and what their chart looks like still desire to live a full and joyful life, seeking friendships and connection. We should work to help fulfill those desires. 

All of us are guilty of ageism. It is not reserved for the elders of our society, and I, in fact, have fallen prey to it on the younger side more times than I can count but life is set up to have an easier time overcoming younger ageism.

I have been thinking a lot about this topic after I caught myself falling into its trap. I started to panic when I took some time to look at what I would like to accomplish personally and professionally in the coming year. I saw wasted time in my life because the checkpoints I wanted to hit in this past decade have gone all but almost untouched. I, for the first time, felt the pressure of my 20s and that time was running out. What does this say about my future if at 29 I felt the time was up? What about when I am 39 or 69 or 99? Do the years between now and then not account for anything? Can they not be filled with joy, accomplishments, family, friends, experiences, and even sadness? I jumped from being on the receiving end of, “You are too young and inexperienced” to “Holy crap life is over.” From the external comments to the internal thoughts that were put into place by our society and what they value. This was not what I truly believed about age and life. After I backed away from this dark hole, I felt funny for having actively fallen into an ageist mindset when I preach the importance of breaking down those harmful thoughts. But we are all human, and no one is immune to the effects our society’s persuasion. Therefore we must be kind, willing to support one another, and willing to seek to weed out those ageist thoughts and comments. Not all of us are called to create a commercially successful project that could change the view of aging in this country, but all of us can work internally, in our families, and in our communities by seeking connection with those of all ages, by listening and seeing each individual. 

Mary shared with us what it can look like to be “average” in ability yet still light up the lives of others. She showed us through her fun jewelry, her love of colorful glasses, and her giving spirit what it means to age with grace, what it means to age well. She showed us we don’t need to be in a nightly newsreel or viral social media post to have value and still contribute to this life we are all living. In doing so those that worked with her never saw her age, what she could or could not do, they saw her smile, her eyes, they saw Mary. She helped move us closer toward internalizing a positive view of what it means to age. After all, we are all aging.  

Appleton Flag Day Parade

This past Saturday was the 68th Annual Appleton Flag Day Parade. My parade as I would call it. You see, I was born on Flag Day, and it was a family tradition to walk down to the parade every year when I was younger. I have fond memories of this time. Every year I think about that part of my childhood as well as past birthdays. This experience and these memories would never show up on a survey or personal story request from a care community, nor would it be something, that unless I spoke of these memories often, would my family know. Yet, it is part of my story, my memories, my past.
Little things, like this connection to the Appleton Flag Day Parade, are what enrich the care we can provide, by filling in the image we have of who each individual is and the place they come from. It helps us become relational with each other on a deeper level and allows us to understand the bits and pieces or the “gibberish” as some would call it, that individuals with dementia may share as their verbal language is fading. Information such as, if the question is, “hamburger or hot dog?” The answer is always “brat.” Well, at least in my world. Or, I prefer marble cake and hate red velvet. In knowing these answers we can anticipate what an individual might want, need, or be remembered at moments throughout the year. This information goes beyond the schools one attended and degrees they earned or the town they grew up in, the music they love, and their vocation.
It impossible to know all the details of a person’s life. Impossible to know what questions to ask, and impossible to always know the right thing at the right time. What is possible is curiosity. To never be afraid to ask questions, to observe what causes joy to radiate through the individual, and what causes them to sink into themselves. It is possible to think that the answer may not always be what we expect, but it can be rich with information, helping us understand how to sit with another person. This is part of what it takes to become relational with those we care for, and yes it takes time, time we sometimes don’t think we have, but time well spent.

I may sound like I am dreaming and unrealistic at times, but sometimes that is what it takes to be crazy enough to think we can improve and expand the care we offer.

 

A New Partnership

Well, here we are three days after we last “spoke” with each other. Time got away from me and the posts just never made it up. It was a holiday weekend and I was spending it with my family, not always relaxing, but doing things somewhat together and for each other, and before I knew it the weekend was gone. Isn’t that what life and care are about? You spend time with family and friends focusing on what is important at that specific moment. It is not always sitting and eating ice cream together, nor is it trying to get to an appointment, it is a fluid and flexible mix of life’s tasks with life’s pleasures, spending time with each other in a variety of different ways. Now that the weekend is over, and some imaginative normality has set back in, allow me to pick up where we left off with a double post today.  

Last week we looked at where I have been with this work. What this last year has looked like, and what formation has brought me to the completion of one year. On Friday I introduced my present, where I would like you to enter into this story of ours. I invited you to write a letter. Please do! I will publish my example soon. Today, I want to talk about where we are going. I want to share with you a new partnership that has formed. 

The world of caregiving is made of many silos. You might have heard someone say this before. We are categorized with few pathways and bridges between the different thoughts and care models, and the different fields that work in the industry. Two of these silos are those specializing in dementia care and the remodeling industry. There is a gap of knowledge and communication between these two groups. Universal Design and Aging in Place focuses on the design and remodel elements but fails to connect with a dementia specialist, and a dementia specialist fails to partner with design and remodeling specialists. This brings about a new partnership between Distinctive Renovations and Bonae Memoriae. 

Distinctive Renovations is an award-winning Design, Remodel, Historic Restoration firm in Appleton, WI, specializing in making new designs flow seamlessly into the architectural style of the home, while serving the client’s present needs. Gary Fassbender, CAPS and Susan Fassbender, UDCP are the owners, and also my parents, although this is not a partnership formed simply because of our family connections. Our hope is that this new partnership between Bonae Memoriae and Distinctive Renovations can lead the charge, helping those living with dementia live well, regardless of where and what they call home.

It came about one night at the dinner table after I had experienced a webinar where someone talked about aging in place, but had no knowledge of remodeling, and my parents mentioned a client they were working with whose spouse has dementia and was looking for assistance. I saw a place where we could come together professionally and help others do the same, all while improving how individuals with dementia and their families live. Not everyone with dementia can live safely or well at home for any number of reasons, but for those who do find themselves able to live at home, after discerning the right path, they deserve every chance to be able to live safely, comfortably, and well at home.  Our hope is to start a conversation between professions, to help families seeking advice and help remodel or adapt their home, to help both parties understand the lens through which the other sees the job. 

We are just beginning. Our hope it to role out blog posts, educational tools, quick read information, and to be a consultant and open ears for CAPS, UDCP, families, individuals with dementia, and others.  A further post is to come that will help explain how to get in touch with us for consulting or training session.  

Bridging the knowledge of design and remodeling with the knowledge of dementia and aging.

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.

Faith and Dementia

As some of you may know, I have started a ministry that partners my work with those living with dementia. It is called the St. Dymphna Dementia Ministry. Today May 15th is St. Dymphna’s feast day. She lived in Ireland in the 7th century and in addition to being known as a patron saint of psychologists, and those living with mental disorders, she is also the patron saint of those living with dementia. You may read more about her here.

This ministry was put in place to help those with dementia and their families continue to live their faith, in whatever faith they may live.  It is important to never strip away one’s faith because of a dementia diagnosis, yet we some sometimes don’t know how to help them practice their faith. That is where I am here to help you. I work through this ministry with parishes and other places of worship, and faith-based organizations as well as with families, guiding them through the process of helping loved ones and fellow members of the community practice their faith in this moment of their journey. I provide training, consultations, as well as faith-based life enrichment programming to help all living with dementia, live with dementia in faith. While I myself speak from the Catholic lens, I have connections with other faith leaders throughout the New York City area, as well as throughout North East Wisconsin.

Faith-based programming needs no research to back it up. Simply by willing the good of the other and helping them continue to seek and grow in faith in whatever capacity that may be, we are adding an unmeasurable amount of meaning and hope to their life.

So, if you, your faith community, or your loved ones are living with dementia and seek to learn about ways to continue practicing your faith with dementia, unsure how to go about it, please reach out to me. I am here to help you, to pray with you, to connect you with others of similar faith, and to support you.

Key Resources

Much like the organizations and individuals, I shared throughout the Thursdays in April, on Fridays I featured organizations I see as Key Resources. These are organizations to have in your address book. If you know of organizations or individuals I should feature in my next series in July, please let me know in the comments or via a Facebook message.

 

Alzheimer’s Foundation of America

Toll-Free Helpline for AFA: 866-232-8484

CaringKind

24 Hour Helpline for CaringKind: 646-744-2900

Teepa Snow/Positive Approach

Fox Valley Memory Project

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