Integrity. That word has a lot do with truth and honesty, things that can get a bit murky in dementia care, as we work to validate feelings and honor the way a person with dementia views the world. At our recent Mission Breakfast event at Ebenezer, I was asked to prepare a story that related to Integrity, one of our five core Ebenezer values. To tell the truth (ahem), I wasn’t quite sure (at first) that I could spin the story I really wanted to tell (yes, I chose the story before being assigned the value) into being the perfect fit for the value of Integrity, but I believe I’ve come around!
Integrity in dementia care has lot to do with honoring and celebrating who each person is, at their core, connecting with their passions, skills, accomplishments and dreams.
At one of our sites there was a resident named June. She was British, and I learned she had had a career as an opera singer. I was so excited to meet her and so hoping I could get her interested in the arts project I was involved in at her site -- using Shakespeare, Poetry and Music to engage residents and stimulate their memories around the theme of love. I visited with June one day in her room. She told me about her singing career, about touring overseas, performing in Prague and many other capitals of Europe, even singing with Pavarotti, I think. Lying down in her bed as we chatted, June was most cheerful, hospitable and animated. Clearly she loved reminiscing about her career. She told me she had also performed onstage in many musicals. I asked her what parts she had played. In her Northern British accent, she proudly replied: “I played Laurie in Oklahoma! But y ’know,” she continued, “My voice isn’t what it used to be, and I really don’t sing much anymore.”
I could hardly wait to see if we could get June out to attend the sessions that were part of our 6-month long project. She didn’t make it to the first couple, but the third one was all about music, and she was feeling well enough to come along. Bright-eyed and very engaged throughout the session, June was often the first person to give a response when Jeanie Brindley-Barnett of MacPhail Music Center asked the group a question. Near the end, Jeanie played the song “People will Say we’re in Love”, the famous love duet from Oklahoma. Then, Jeanie very casually invited June to sing it.
June did not hesitate. Her voice was creaky and warbling at first, but she put her heart into it and when she hit those high notes near the end of the song; her voice simply soared across the room, pure and free. Everyone in the room had an experience of the singer she once had been. Memory care residents and staff applauded heartily when the song was done. I looked over at Jeanie and saw that she, like me, had tears sliding down her face. I remember thinking in that moment that our project was already a complete success as far as I was concerned, based solely on what had just happened, because one resident had that opportunity to share her talent in front of a group again.
Unfortunately, June did not attend our other sessions. She came to just one, wasn’t feeling well, and had to leave almost immediately. Her health was deteriorating. In fact, she died before the project was completed.
A month or so after she passed away, I arranged to meet with June’s daughter. I was curious to hear more about June’s career, and thought there might be some recordings or programs in existence that might come in handy for the documentary film we were making about our project. (The day that June sang was not a day we had the film crew on site!) Her daughter let me know that June’s memory, once she got dementia, had actually….expanded…the extent of her career. In fact, June had never toured the capitals of Europe. She had not sung with Pavarotti. She had done a lot of community theater and some non-professional light opera performances! June did indeed play Laurie in Oklahoma, but she did not have the career she had described to me and many others in some detail, except in her imagination, fueled by dementia!
I admit I was a little disappointed at first, finding this out, but then I thought, wow, who wouldn’t want the kind of dementia where you remember your fondest dreams and expectations for yourself as reality?! Given the choice, I think that’s a kind I’d sign up for! There’s integrity in there for sure!
-Marysue Moses, Ebenezer Dimensions Program Coordinator
What is Godly Play?
GODLY PLAY™ is an imaginative, Montessori-based approach to religious formation developed by the Rev. Dr. Jerome W. Berryman and used by many faith groups around the world. It is a creative and playful way of bringing stories of faith to life on an experiential level. It uses two and three dimensional figures to tell the story in a vivid way and then invites – through wondering questions - engagement with the story.
Traditionally, this method is used in the faith formation process of children.
In 2015 Lois Howard wrote an inspiring booklet “Using Godly Play with Alzheimer’s and Dementia Patients”. In it she outlined her experience of using this method since 2006 in Lexington, Kentucky. Her writing inspired chaplains at Ebenezer to follow in her footsteps. In March and April of 2018, our team (including chaplains in training) engaged in two days of hands-on training in Godly Play with Minneapolis Godly Play trainer Susan Mallison. Her enthusiasm and curiosity about bringing stories alive with older adults in varying stages of dementia was instrumental to our success. Another amazing supporter is Jon Lundberg, President of Ebenezer and Fairview Post-Acute Care. An avid woodworker, he created several wooden figurines that are being used in the process of telling Sacred Stories. We are also very grateful to all donors who through Ebenezer’s Foundation generously supported this project.
We decided that our goal was not to help participants remember the stories but to facilitate a way for each person to connect with the Sacred while also being in community with each other. Our context in larger long term and senior care settings in Minnesota is one of growing cultural and religious diversity. We wanted to create a welcoming and inclusive atmosphere for everyone while drawing on different sacred stories. We called it “Sacred Story.” What we discovered continues to amaze us.
Initially we anticipated 4-6 people would come and listen to the story and engage with it. To our surprise, at one of our communities we regularly have between 15-20 participants, at another 6-10. Not everyone knows or remembers the others’ names all the time. We introduced name tags so that residents could see and hear each other’s names frequently. Calling each group member by name is a crucial aspect of this model, to create community and to be known by each other (and the Sacred) by name. Interestingly, one of the residents whose Alzheimer’s disease had progressed significantly was so delighted to see her name in writing. For her, to be in that circle of friends, to be known and to recognize her own name was the most meaningful part of this day’s Sacred Story time. As we sing together and then hear, see, and feel a Sacred Story, we open up new and different ways to experience the Divine. Wondering questions invite each participant to connect with the Sacred in their very own way. Residents may recall memories that resonated with the stories being told, such as reconciling with a sibling, welcoming back a child into one’s family, or helping a stranger in need.
The stories we tell include the parable of the Great Pearl (which touches on what may be the most important thing in one’s life, and what it feels like to give everything away), the Ten Best Ways to live by (traditionally known as the Ten Commandments) and the story of the Exodus (a story about suffering, liberation, freedom, divine intervention and joyful celebration).
Recently when I told this last story, using our “desert bag” filled with sand, I was deeply touched by the reaction of one resident who kept saying: “This is my story, these are my people.” We then spent time together speaking about the resident’s childhood and family. The smile and warmth reflected on the resident’s face as we talked was enlivening.
When we conclude our Sacred Story time, we go around in the circle and offer silence, thoughts or prayer, deepening on each resident’s desire. Those who voice prayers out loud frequently pray for their families. I hope that many families know that despite their sad experience of no longer being recognized as son, daughter, spouse or friend, their family member may well be reaching out in an unseen way, and praying for them.
Many older adults want to stay in their home as long as possible. There is an assumption that staying in your home means you are independent, but the reality is it can often lead to loneliness and isolation. The health effects of long-term isolation are measurable and include chronic health conditions, depression, anxiety, dementia and even premature death. One study reported the negative health effects of long-term isolation are equal to smoking 15 cigarettes a day.
Loneliness is on the rise overall, but those most affected are those 80 and older according to a 2016 study.
Older adults who are most at risk are often:
The best remedy for loneliness is staying connected. Staying connected, interacting with others, and staying socially engaged with friends and your community can help keep fight loneliness and the health risks that are associated with it.
How can a move to Senior Living help fight loneliness?
When people move into a senior living community, the older adults often tell us, “I wish I would have moved sooner.” And their family members tell us, “We’ve seen our loved one blossom in the last few months!”
We invite you to visit White Bear Heights. Talk with our residents to hear how their health and their lives have changed for the better after moving to senior living.
For more information about loneliness and isolation, the AARP Foundation offers its online resource Connect2Affect. There you can find a self-assessment to determine your risk factors and tips on how to stay connected. Click here to take your self-assessment. Resources that informed this article include Government’s Role in Fighting Loneliness by Emily Holland, as published in the Wall Street Journal, and the Blue Zones Power 9 ® by Dan Buettner.
Apathy. It’s one of the approximately 500 symptoms you might well find under the umbrella term of dementia. According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness. For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought. Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.
Initiating activity involves planning, organization and motivation. Planning can be complicated, involving lots of steps. For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming”. When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.
To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time. We have to remember that the changes of dementia are disease-related, and brain-based. It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us. The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have. We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.
Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy. These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:
--Marysue Moses, Ebenezer Dimensions Program Coordinator
Here is a recent article about our community