Bonae Memoriae: Of Happy Memory – The Blog

In Communion

While immersed in this work I meet many people living with dementia. I read articles written by doctors, care professionals, advocates, family members, and individuals with many different forms of dementia. I am inspired and then discouraged. I am validated in my view and understanding, and then I am challenged. Through all of this, I have come to find that each person not only has their own journey with dementia, that I already understood to be true, but each person has a different language, view of what perfect care looks like, and wish for the “industry.” I have worked with individuals who wish for me to say they are living with dementia, while others, suffering from dementia. I have met individuals who long for Dementia Villages, while other want to dismantle all we know about our care communities and memory care. I have spoken with those who wish to be called elderly, while others, elders. I have met people who think living at home is best, while others want to go into a memory care wing weeks after diagnosis.
What becomes the link that connects not only these individuals living with dementia but all of humanity, is the desire for connection, to be in communion with one another, to be in relationship. This is the simplest of tasks yet has become forgotten about, or if remembered, turned into a complex task to ignore as we march forward with our own agenda and desires. May we reset to zero for a moment? Forget which model or care method we are fighting for or against, and become relational with those we seek to serve. We might find that our work and vision for aging and dementia is the one we are set to charge after, but all of that would be in vain if we do not walk with those living with dementia.
I have wondered for a long time now, why do we, once someone becomes a resident of a care community immediately medicalize them, and in doing so start to dehumanize them. This is not being relational with each individual. Why does everything become “therapy” and no longer experiences in the fine arts or in life’s tasks once a diagnosis exists? There is a place for therapy and therapeutic processes but there is also a place for life as we know it outside of the clinical and medical box. Can we remove the medical and care model jargon and just be as fellow human beings in community with each other. We should know one’s life story as much if not more than one’s chart. We should understand that one might have dementia and then forget it and simply build connections with those we encounter. These questions have been illuminated by the discovery that others have asked the same questions. Advocates living with dementia make similar remarks about the way we walk with them. How can we live in communion with all individuals regardless of the information in a chart, regardless of age, regardless of ability, regardless of their ability to fit in the box that we built and labeled, “normal?”

May I Introduce to You…

Every Friday in September 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.

 

Lewy Body Association

St. Ann Center for Intergenerational Care

Center for Creative Arts Therapy

Dementia Careblazers

Purple Table  Reservations

Kyrié Carpenter

MJHS Health System

Caring Professionals

EngAGE

All Trust Home Care

The Silver Post

Alz You Need

The Kitchen is Missing!

The kitchen is missing!

What is is about the Kitchen? It pulls us in like a magnet, to cry, to dance, to talk, to come together as family, friends, and community. Growing up it is the place for homework, helping Mom decorate Christmas cookies while also trying to sneak one behind her back. It is the place you get shooed out of, being told to, “get out of my triangle!” while Mom and Dad are preparing dinner or a holiday meal. It is also the place you are welcomed into and shown how to cook and you learn about food and how to prepare a meal. It is the gathering place when company comes over. It is the place for dancing and games, cries and laughter so hard your stomach hurts. The kitchen, while it’s primary purpose is to prepare food, it ends up doing so much more than helping us nourish our bodies, it also nourishes and heals the soul.

I understand the health and safety concerns as to why there is not a kitchen for the residents of care communities, some only having a kitchenette type set up, but these kitchenettes are far from the warmth we have come to seek in our home. They are frequently cold, a place where it is more about what can’t be done than what can be done. It turns into the place where aids come to gather to listen to their own music or complain about the day and gossip. We have failed to make our care community kitchens/dining areas a place of home and failed to create a new space that does what our kitchens have done for us over the course of our lives. Can we change this? Can we find ways to work with the health and safety regulations while also restoring the warmth and nucleus of our home? Is there a way to start now?

Food and sharing a meal together in conversation and connection is a major part of becoming relational with one another and I wonder if we are going about it all wrong. It is clear that our community rooms are not the “new kitchen” in our care communities. I cannot go a day without hearing about how bad the food is or how the menu rarely serves what they are hungry for, yet we have food all the time. Programs revolve around serving food, but never the right kind. There are sweets or cheese and crackers. There are quick breads or party mixes. There are ice cream socials or fruit trays. But we are missing something because residents, visitors, and staff are still hungry. Do we think that serving food at a program helps build connection and replaces what the kitchen once became for us? Or are we missing something that often partners the food? The emotional memories of dishes and flavors, combined with real conversations and connection. The physical nourishment with the spiritual nourishment. Are we doing something to cultivate real community? Are we truly seeing those we serve each day? Are we listening?

How can we create a new kitchen, a place of warmth, connection, and nourishment?

Dementia Letters

This morning we have our next installment in the Dementia Letters Project from Mindy. Thank you Mindy

 

Dear dementia,

Thank you for joining us, here on earth.  I know it’s a hard place to be; people often want you to go away—you’re simply misunderstood.  I’m accepting of your company.  You’re here for a reason, right?

Your presence has changed my life.  You’ve changed my brain, although, you haven’t entered it (yet?).

I know you through many sources.  Nana was a host for you before she died in 2012.  There were times when, together, you laughed, cried, giggled, snorted, screamed—and took your clothes off in public.  She always did prefer nudity.  My relationship with Nana, once you were in her life, was more unique and explorative.  Greater love and understanding grew as I filled in, accepted, and decorated her “blanks”.

Nearly every day, I meet your hosts.  They’re as kind and patient with you as they can be.

Dementia, I know you’re here to teach us something and I have a few ideas of what that is.  You’re teaching us to question our huge egos and our contrived notion of “reality”.  Patience, empathy, flexibility, mindfulness, spirituality, radical acceptance, present moment awareness and pure love …. that’s what you’re aiming for, right?

When you come around, our worlds turn upside down.  All we can do is throw our hands in the air, scream, and liberate ourselves—hopefully joining hands with one another.

I thank you because you took away a lot of beliefs that weren’t serving me.  You’ve given me an even more vast world to explore.  I can’t imagine my life without you.

 

Sincerely,

Mindy

“What If…”

Back in July, I did a “What if…” series on Instagram. It started off as one thought that occurred to me after having attended the Fox Valley Symphony’s concert at the ballpark but kept going. I wrote and shared a few of them, but I had many more floating in my head. Life can be a lot of “what ifs” and “why not” and it can be a lot of dreaming, and a lot of regrets. Each person I have worked with has had their own list of “what ifs’ and “why not” and I receive them as great gifts, a passing down of wisdom from one generation to another. I have learned that many regrets come from dreaming too much, and not acting enough. I have learned that many joys have come from not the moments of triumphs, but of putting an idea into action. I have learned as the granddaughter of someone with dementia what I wish I had when she was still alive, what I wish I had learned, what programs were in place, and who I benefited from having in my life as I switched from my personal story of dementia to the professional. So, with that said, I would like to put an idea into action and I want you to come with me. I am seeking collaborators. People willing to gather to put into motion visions for a better world, for a better chance of joy and hope for those living with dementia. This must include people living with dementia in some way as we cannot do it without their guidance. I will share all the posts below, but the one that I still get inquiries about is the idea of our universities become better places for growth, support, and learning. 

The post went like this, “what if our universities and high schools become dementia friendly? Places that offer music, art, public lectures and events, and are locations that are sometimes more accessible than the local performing arts center or museum. What if places such as large universities like UW Madison and Yale who already have Alzheimer’s Research Centers and programs like the NYU Aging Incubator to small state schools like UW Fox Valley become Purple Angels? Training staff and educating students in small but impactful ways about dementia, new ways to become relational with those in our community who are living with dementia. What might the ripple effect of this small movement be for all of us?”

If you would like to collaborate with me to see how big the ripple effect can grow, reach out. If you have thoughts, concerns, or ideas let me know. I look forward to working with you. 

The other “What If…” posts

Music to fill our hearts. On Saturday I had the great joy of attending the Fox Valley Symphony’s free concert at the ballpark titled Brats Beer and Beethoven. This outing has become a tradition for my family and one we look forward to attending. This year, as I was sitting listening to everything from West Side Story to the United States Armed Forces Medley, to Beethoven’s 5th, seeing how the music was impacting those around me, people of all ages and backgrounds, families, friends, and co-workers, I was reminded of the power of live music. So often we get stuck with or iTunes library and Pandora accounts that we forget just how powerful it can be to sit and listen to the waves of music coming from a stage (or a baseball field) and what it can be for our minds, bodies, and souls. While a concert like this may not be completely accessible for all living with dementia it should not be ruled out. May we find ways to make our local symphonies, university music programs, and high school band and choir concerts dementia friendly. It would not take much, and the reward and community benefit would go beyond any time or money spent.

What if our real estate agents and construction and remodel companies were dementia friendly? Some people living with dementia live best at home, others in a care community. One would hope that family existed that would stand by their loved one with dementia and help them through the processes of moving or making their home safe, but sadly this is not always the case, nor if it is, is the family aware of all that can go into making a home for someone with dementia. Moving or remodeling a home are not easy transitions and changes for anyone, and if you are being taken advantage of, or are struggling to express your needs and wants for your home/move, it is even worse. By having our real estate agents, and skilled workings in the industry (from contractors to plumbers to electricians, to carpenters and designers) understand dementia and share that they are dementia friendly with their clients, a sigh of relief can wash over the individuals, a level of trust enters into the relationship, and the best outcomes can be produced. 

As a partner with Distinctive Renovations, we are making a start to this new way of living with dementia t home. But we cannot do it alone, nor should we. If you have questions about how to get started bridging the gap. Let me know. I would be happy to speak with you.

What if our churches and religious and faith-based organizations had staff trained in dementia? What if these places allowed those who find the sacred within these communities were welcomed to continue to practice their faith even as dementia progresses?

A Swing Set

My brother recently purchased a new home and in the backyard, there is a single swing left by the previous owner. While at his house for a visit I thought of a resident I worked with several years ago who once said, “I wish there was a swing set for us old people. We want to swing too you know.” This was her reaction after seeing a group of children out for recess. There is something about sitting on a playground swing on a nice day that brings back memories from my own childhood, and for this woman, also memories of pushing her kids in the swing and teaching them how to get the swing to go higher and higher with each movement of their body. It brought back memories of enjoyment, friendships, motherhood, and summer.
We have often looked at play and aging, it is the broken record topic, that until we universally realize the depth of the human spirit we must revisit this conversation. The comment the woman made to a volunteer that day, I found, did more than tell us she wanted to swing on a swing-set, it was an expression of the desire to live a fuller life than the one currently supported. She was a resident of a care community that dedicated itself to those living with dementia and was becoming a leader in the industry, but they still missed the mark. They missed the active part of life and focused solely on the passive enjoyment gained from watching others. She wanted to play. She wanted to dance with the program facilitators. She wanted to live fully within the bounds of her current physical and mental limits and then see if she could stretch them. How can we, the caregivers and care team, help others stretch and play with the limits of their perceived capabilities? How can we stretch our own thinking and our own limits to see what we can do to better care for others? How can we build a swing set for those “old people?”