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.

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.

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

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

 

Let Us Run…or Walk

May we no longer run away, but rush towards those who are diagnosed with dementia and their loved ones.

The story is common, someone, a friend or family member, is diagnosed with dementia but instead of the community rushing towards them, starting GoFund Me pages, and becoming advocates for dementia, they scatter, leaving the person with the diagnosis and their closest family alone, feeling another loss they can add to this journey. Why is this? I suspect that, unlike cancer, other illnesses and diagnoses, dementia has a terrifying stigma. We fear the journey, misunderstand the disease, research is confusing and at times conflicting. It causes us to come face to face with the mortality and fragility both of mind and body, forcing us to admit that our loved ones, and even ourselves, are mortal. For those of us who boldly face dementia, our mission is to provide the best care and life for those who live with the disease. This somedays can take all that we have in us, leaving little room for anything else, much less trying to build friendship and community. That is where those of us who are not currently caregivers or have a vocation to support those living with dementia can come and tap you out, if not in direct care, in education, and in advocacy. We can “hold the bucket” and allow you to do what you need to do in order to be your best self, in care and in life. We are here saying, “May we be a member of your community?”

Our job as individuals working with dementia and having lived through it in some form is to make ourselves known to speak up and let others know we are here. Let all of us, who have lived with dementia help bring back family, friendships, and community where we can, and be present in place of those whom you have left your side because of dementia. This journey may be about loss, but it can also be about growth. May the shared stories of dementia continue, and may we all create joyful connections where gaps are found.