Bonae Memoriae: Of Happy Memory – The Blog

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?”

Dementia Letters

Today is the start of the Dementia Letters project. As an ongoing project announced originally in May, I will post letters and thoughts written by you, by those who have a story of dementia that normally would not be heard. We hear the voices of advocates, the doom, and gloom of TV specials and spots, the extraordinary, and the stigma, but the most powerful of stories come from the voices of those living with dementia, struggling, suffering at times, and basking the gifts, joy, and playfulness that also comes along. Here, on Sunday mornings, you will find a Dementia Letters post. I encourage you to write a letter, to share your story that we might learn from and/or support you. Please feel free to email me, or fill out this form if you would like to write a letter. Let us fill each Sunday of this coming year with letters from you.

So, let us kick this off with a letter by Edie.

 

Dementia

By: Edie Norenberg

What does it mean when we refer to Dementia?  Most people will respond with the concept of a person who’s confused.  Actually, when I began thinking about this topic, “Confused” seems to be the operative word.  Dementia often has the connotation of “a state of confusion in the older adult”.  What we don’t realize is it creates confusion for most who are involved with this disease as well.  

     How many types of dementia are there?  That can confuse a person right there!  Unless you have a strong medical background or become a student of the disease, you could never keep them all straight.  There are so many dynamics to dementia.  Once the diagnosis comes, what tools do we use to treat the person dealing with it?  In my career of assisting people with this disease, it has become difficult to watch spouses and co-workers come up with dignified ways to assist in the loving care of these individuals.  When we are confused about that process or any process for that matter, what is our instinct?   We avoid!  It becomes too overwhelming to think about how to adequately care for a person with this complex disease so perhaps we simply flounder and ride the wave as the disease takes its’ course.  

     Dementia is on the rise and as far as I know, this disease isn’t going anywhere anytime soon.    We need to ask ourselves, as a society, what are we doing to educate, accommodate and create a better quality of life for these individuals?  Putting them on locked units and letting them sleep their lives away is no longer an option.  We need to train specialists in the disease who will, in turn, train our workers and give families the tools they need to make this journey with their loved ones. We need to create avenues for these folks to express themselves in a way they can be understood. Creating these environments requires funding though and awareness is key!  Everyone will be touched or affected by this disease somehow.  We change the world one step at a time. Figure out how to be the change you want to see in the world.  Fund the Alzheimer’s organization, educate yourself, donate your time to a Memory Café, and keep looking for ways to affect change in the way we view and deal with this disease.  It doesn’t just happen! 

Key Resources

Every Monday in July over on the Facebook page I featured books I see as Key Resources. Here is the recap.

Start with Yes! by Cathy Braxton and Tami Neumann

Weeds in Nana’s Garden by Kathryn Harrison

The Penelope Project by Anne Basting, Maureen Towey, and Ellie Rose

Being Mortal by Atul Gawande

 

May I Introduce​ To You…

Every Friday in July 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.

 

Distinctive Renovations (CAPS and UDCP)

Home and Place Podcast

Gianna Homes

Music and Memory

Chicago Dance Therapy

Momentia Seattle

Whole Care Network

Dementia Caregiver Talkshow

Dr. Bill Thomas and Hello Milo

True Care Home Health

Dementia Matters Podcast

PSS (Presbyterian Senior Services)

Dementia as Trickster

Dementia is a Trickster! It changes what we know to be true about life. It upsets the plan. It causes us to shift the trajectory of our life and as a result, we learn, we grow, and we are challenged.

Dementia is a trickster that hides from us in times of introduction or brief meetings, it is the playful spirit that comes out, maybe for the first time, causing us to questions how well we truly know someone. It lures us into answering the call to transforming our work to become relational with our loved one all over again. It has us look over here while something else is going on over there. It hides the true meaning of an action, behavior, or word. It tricks both the knowledgeable and the under-trained. It tricks families, friends, the community. It tricks the person with dementia. It evolves and is quick, keeping us on our toes and our head spinning. It brings sadness, but it can also bring joy. It forces us to throw out the textbook and sometimes even the research so that we may best be present for a person with dementia in a new and different way.

As a dementia and creative engagement specialists, we work with the trickster to outsmart it, outplay it, outwit it. Sometimes we are successful, sometimes not. But we are not called to be smarter than it, but flexible, playful, and smart about how we approach it. The Trickster, with all that it does, can never take away the person, the personality, the life, the story that is in each one of us. It cannot take away our relationship, only invite us into a new way of being in relationship. It cannot take away interests, desires, gifts, and experiences, only shift how we see and learn about them. When we take time to get to know the person, as well as the dementia, we can play and grow together. We can continue the story, joining in or staying with this new chapter in the person’s life. A Trickster it may be, but a person they will always be.

Several years ago in a drama therapy class, I came to the conclusion that Dementia is the Trickster something more than a Master of Social Deception. In mythology, the trickster forces a change in the status quo. It is intelligent or has secret information that is used to play tricks on another person, or it breaks what we consider normal or appropriate behavior. It can be a terrible character and in the case of dementia can also be the one that brings out the best in a situation. The Trickster causes us to come face to face with the mortality of life, but also the playfulness of the human soul. In my personal notes, dementia was often written as Trickster, but it was not until I heard that Kyrié Carpenter also call dementia the Trickster that I wanted to share with thought with you. I was pleased to see that I was not the only one making the connection and am now interested if there are more of us out here. What framework do you use to think of dementia? Do you feel the need to think of it as a character? Does it help to think of the world as a cast of characters made up of a set of diagnoses? Or is it simply a diagnosis? Do you see it as harmful? Or, hurtful? Let me know.