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 York Gardens. Speak 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.
When a person with dementia asks you a question for what seems like the 29th time in a row, how do you respond?
Have you found yourself saying (or almost saying) anything like this:
Physical changes in the brain can result in a person with dementia no longer being able to remember that s/he is repeating themselves. These changes also make it difficult for a person to stop a repetitive motion such as rubbing hands together, or tapping on a table. Anxiety and tension, (byproducts of the disorientation and memory loss of dementia) can translate themselves into repetitive motions or questions which others may experience as annoying.
Whatever a person with dementia does that appears “wrong” or “inappropriate” or “unnecessary” to our brains and our way of relating to the world is actually an expression of a need. That’s why I like the phrase “behavioral expression” so much better than the term “behavior” when referring to the challenges that can arise when someone lives with dementia. “Behavior” often implies judgment, that the person is being “bad," which encourages us to assume that if the person only tried a little harder, they could control that incessant tapping, stop asking those repeated questions, and avoid using those four letter words that they never used before! The fact is that the person could only exert control over those things if they could STOP having dementia. This is, alas, too much to ask.
We must have patience and compassion for the seriousness of a broken brain. It’s up to us whose brains are in better shape, who have better control over our actions and responses to others to take a deep breath…and focus on helping the person out with whatever need is making itself known, however it may be expressed.
A hungry person might ask “What’s for lunch?” over and over. For this person, giving them a piece of paper with the upcoming “menu” written down may satisfy the question. In addition, getting the person involved in some aspect of meal or table preparation might be an effective distraction.
If a person with dementia is in pain, they might rock, pace or otherwise move rhythmically to express their discomfort. We must be sensitive to the comfort–related needs of the person, and do what we can to alleviate them. Sometimes, giving a repetitive task like winding yarn or folding towels can be a comforting distraction for the person.
Sometimes people may be bored, craving a sense of purpose and meaning. Repetitive movement can be reflective of things the person used to enjoy doing on a regular basis. If your loved one asks you, “What do I do now?” they are in effect asking you to involve them in something that will give them a sense of pleasure, peace, or usefulness. Put something of interest in their hands. Ask them for help with a task. We all need to be of use. This does not stop when we get older or when we develop dementia. An inability to take initiative is usually part of the dementia progression. Do not assume that your loved one is beyond having interest in things that have been important to them. The person may be at a loss as to how to access or activate that interest. In that case, it falls to us to remind the person of their accomplishments and adapt past interests into activities they are able to enjoy now.
It is a good idea not to discuss plans with a person (appointments, visitors, outings) who has very short-term memory loss. Knowing an event too far ahead of time can cause extreme agitation (as well as, you guessed it, repeated questions) for a person with dementia. This tendency will vary, of course, person to person, but it is necessary to monitor and adapt to the changes as dementia progresses.
Sometimes the need expressed is an emotional one. The person may be fearful, sad, or feeling insecure. That emotion could come out as a repeated question or as a physical expression, i.e., pacing, as the person attempts to express what is inside. Listen for the emotion behind a person’s question or behavioral expression, and respond to that, i.e., “You seem worried. I’m right here if you need anything. “We will be together all day.” Putting on soothing music that the person likes and using gentle touch may provide further reassurance.
If the person seems to need a hug, tell him or her that YOU need a hug, and they will very likely oblige you with one. Then they get to feel that they are giving you something that YOU need. We all feel better when that happens!
--Marysue Moses, Ebenezer Dimensions Program Coordinator
--Information in this post is partially based on material in Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White
Few processes are more stressful than deciding upon the best place to move a loved one when it is determined that a move to memory care is the best option. Keep in mind that when this decision needs to be made, it is often critically important, not only for the well-being of the person with dementia, but in order to maintain the health and safety of the family member who is their current care partner.
If you are in the process of making this potentially agonizing decision, here are some questions to ask yourself, and others, as you tour and consider various possibilities:
What does the environment feel like?
-Marysue Moses, Ebenezer Dimensions Coordinator
Religious and spiritual beliefs and practices are important in the lives of many of us. When we get older, we reflect back on our lives and also look forward to a sense of meaning, purpose and connectedness in aging. Some of that involves deciding what we want to hold on to or let go of.
So many of Ebenezer’s new residents have to engage in the process of holding on and letting go simply by moving into a smaller apartment than the home they had previously lived in.
“What do we do with the desk that won’t fit in? How about the Holiday decorations – maybe our daughter and son-in-law could use them for their house? What will it be like to get to know all of these other people?”
While this process can be quite painful, it also prepares us for a journey of holding on and letting go of other things. Which unresolved conflicts prevent us from feeling at peace? Can we let them go? Can we seek reconciliation?
According to a Gallop poll, the four major spiritual concerns Americans have about aging, death and dying are:
The magazine “Real Simple” published an article in 2005 titled “Getting to know you” by Erik Jackson. He starts off by saying:
“Photo albums? Check.
Family Tree? Got it.
A deeper understanding of our relatives and friends?
That starts here.”
He then lists many questions as conversation starters or almost as an interview format that a good friend, spouse, sibling, or other loved one can ask. Some unique questions are: What is the bravest thing you have ever done? Was there one person who had a big impact on your working life, like a mentor? What are the secrets to a good marriage or relationship? What have you always regretted not asking your parents?
This process of making meaning out of one’s life can be a source of hope, strength and peace. It can bring us the depth of love and connection that we may yearn for.
--Rev. Mirjam Berger
Ebenezer Corporate Director of Spiritual Health
I am grateful for all the inspiration I have received over the past year, from persons living with dementia (many of them, I must add, functioning very well. For instance, Paulann Gordon has been living with dementia for the past 5 years. She is now in the middle stages and continues to function well. She has chosen to live her life as an advocate, speaker and author. Paulann has published a booklet sharing her experiences living with dementia. Vascular Dementia – An Inside Perspective, is available on Amazon. Her story provides valuable insight and encouragement for those living with dementia their caregivers.
Whether we work with persons with dementia, or have loved ones with dementia, we must never forget that the wholeness of the person’s spirit is still there, even when it looks like it isn’t. What are the person’s strengths? What makes them smile? What lights them up? What interests and passions can still be reached and celebrated? For me, answering these questions is of primary importance in caring for our fellow human beings who happen to have dementia.
I am thankful that I am surrounded by people who are deeply committed to caring for those living with Alzheimer’s and other dementias. From devoted care partners whose closest loved ones have dementia, to front-line staff at Ebenezer sites whom I have observed slowing down and taking time to connect with residents, and activities staff who exhibit tremendous energy and enthusiasm to make life easier, friendlier, more pleasant and more meaningful for those residents with whom they work, I am grateful. I have been inspired by occupational therapists, dementia trainers, receptionists, chaplains, administrators, nurses, executives, donors and professional artists, all of whom in some way are making a profound difference for persons with dementia.
In my personal circle, I have been inspired by many friends and family members. It’s reassuring to remember support is available. And there are those who are passionately devoted to caring for those with dementia. If you feel, like I do, that the news of late is oh, a bit challenging to take in, it helps to remember what is going well in our own sphere in order to maintain and cultivate resilience. It’s part of self-care, which is an essential practice for anyone out there caring for a person with dementia.
HappyThanksgiving to all.
--Marysue Moses, Dimensions Coordinator, Ebenezer. email@example.com, 11/21/2017
At the end of June, I had the opportunity to experience the first ever North American Dementia Action Alliance Conference in Atlanta. This was an amazing event, the best and most moving dementia conference I have ever been to, and it scrambled my brain in the very best way.
The conference organizers included persons with early-stage dementia in their planning. There were many speakers at the conference who also had dementia, who spoke movingly and clearly about horrendous experiences with diagnosis (example: essentially being told by the doctor to “get your affairs in order”, and just prepare to curl up and die) the stigma that accompanies the diagnosis, the despair the ensues, and the long climb back into hope, purpose and connection which now fills their lives.
There were 30 persons who attended the conference who are currently living well with dementia, and doing amazing things. Yes, they run on adrenaline in conference situations and there is another side to their lives that conference goers like me can only imagine, i.e. the utter exhaustion at the end of the day, the confusion that comes and goes, the losing one’s way in a large hotel, the forgetting a portion of what happened this morning.
Here are 10 things I learned:
Might they be doing a whole lot better now? I think they might. But it is never too late to support people in finding a sense of purpose and meaning, and never too late to treat them with the compassion and respect they deserve. It is with a renewed and profound sense of purpose that I will continue to learn about dementia from the real experts, and to advocate for them, all along the way.
-Marysue Moses, Ebenezer Dimensions Coordinator, firstname.lastname@example.org
Our Memory Care program at Ebenezer now has a name – Dimensions. Dimensions has five building blocks:
We have gathered best practices in each of these realms and are giving our sites the tools they need to implement them effectively and consistently.
I chose the name Dimensions not just because it sounds like the word dementia, but because of all the things the word demands that we think about, such as . . .
The person with dementia has many different dimensions
We can’t assume that what we see or hear or assume about a person is all of what is there. We must be curious, patient and respectful as we work to discover the length, breadth and depth of each person’s history, personality, preferences, sense of purpose, habits, idiosyncrasies, hot buttons, skills (yes, these people still have skills) and strengths. Their long-term interests and passions need to be encouraged. These people still have a sense of humor and a need to laugh, even if that doesn’t seem obvious.
The spiritual dimension
Did you know that some Native American cultures believe that persons with dementia are doing important spiritual work—communicating with spirits at a level the rest of us cannot understand. I love the inspiration this idea provides. It spurs me to work hard to create more and more calm in our Ebenezer environments.
Imagine how we might honor and reward care partners and caregivers if we all agreed that persons with dementia were indeed doing the most important spiritual work on the planet!
Imagine the environments we would build for these folks! Imagine the walking paths, the sense of peace and purpose, the accessibility of nature.
The spiritual dimension is indeed another dimension of the person to consider in order to give them the care they require. What moments in their life do they hold as sacred? When do they feel most at peace, most at one with all things? Where have they found solace during hard times in the past? It is important to ponder these questions, search for clues, and to ask the individual, if they are able and willing to respond to them.
The point I am making is part of the theme that I often remind myself and all those whom I train on various dementia care topics: People with dementia are PEOPLE, first and foremost. They have needs (to be filled) and quirks (to be enjoyed) just like the rest of us. There are things that make them laugh (to be discovered and used as often as possible). They have likes and dislikes (to be respected) good days and bad days (to be tolerated) and they have courage and resilience (to be admired and emulated).
A person with dementia NEVER stops being a person.
With thanks to Megan Carnarius, author and nursing home operator, for the insight on Native American beliefs.
Dimensions Program Coordinator
If you have ever surfed websites of senior housing options, I bet you have frequently run into the term “person-centered care” which we owe to Dr. Thomas Kitwood, a British physician who focused on the importance of remembering that a person with dementia is first and foremost a PERSON with particular needs, challenges, strengths and preferences.
Cannot expect persons with dementia to think like we do
It is also due to Dr. Kitwood’s brilliant work that nurses are no longer trained to try to orient persons with dementia to reality, e.g., “No, no, Mrs. Jones, it’s 2017 now – actually your mother is dead, and the farm has been sold!” Thank goodness for Tom Kitwood! He helped us understand that we cannot expect persons with dementia to think like we do. As I’ve heard nursing home operator and author Megan Carnarius say, “We need to cross to their side of the street.” People with dementia simply cannot come over to ours. We need to give them responses that make sense with the way in which they understand the world.
Dementia expert Elion Caspi encourages us to also think about dementia care as “relationship-based care.” If we do not maintain relationship and genuine connection with persons with dementia, trust wears thin. As a result, it becomes challenging for persons with dementia to accept the care they need.
Lost in the grief
It is completely understandable that care partners are exhausted. They often get caught up in the grief of losing the precise relationship they had with their loved one before dementia was part of the picture. All too often, people become angry and bitter, even to the point of saying things such as “Alzheimer’s is worse than death.” That is a direct quote from the despondent husband of a wonderfully clever woman; let’s call her “Pam,” with whom I worked for some years. What a heartbreaking pronouncement from her husband! At this point, Pam still loved to share opinions and insight, sing Broadway tunes, reminisce, walk, dance, and hold hands.
A person is NOT their Alzheimer's disease any more than a person who has cancer is their cancer!
Those of us who have had family members with dementia or other progressive diseases do understand from whence that sentiment arises. However, it is ultimately not a helpful one. Nor is it accurate. It implies that we might as well give up on a person who is still very much alive. This could not be further from the truth. A person is NOT their Alzheimer’s disease any more than a person who has cancer IS their cancer. The person, an intact spiritual being, is still there, though many of their needs have changed dramatically. We do our loved ones a disservice if we refuse to rise to the occasion of their increased needs.
Maintain connections along the way
There are many gifts to be gained by accepting where the person is at, through each and every phase of their dementia experience. There is connection to maintain all along the way. How we connect will vary with different types and different phases of dementia, but in general, smiling, eye contact, gentle touch and approach, curiosity, acceptance of where the person is, conversation about things that are meaningful to the person, sharing laughter, singing, enjoying simple pleasures, giving compliments, promoting calm, validating the person’s feelings, doing things just the way the person likes, making things easier for them, reminiscing, having fun together, sparking creativity, enjoying humor….well, the list of what can be done to maintain a healthy, nurturing relationship goes on and on.
Responding to the world from an earlier developmental time
In short, we can treat the person like a PERSON, and remember that even though this person is losing skills, even though this person may enjoy and indeed benefit from things that children like, this person is still an adult who is simply responding to the world from an earlier developmental time. This person still has strengths and skills we must actively encourage and appreciate in order for them to have a meaningful life.
Language is powerful
Did you notice that I’ve been using the term “care partner” rather than “caregiver?” Language is powerful. When the relationship between a person with dementia and someone caring for them is viewed more as a partnership, what’s implied is that both persons have something to give. Think about it…What might persons with dementia still have to offer us, their care partners?
Some bonds remain unbreakable
They can give valuable input as to what they like and what they don’t like. They can lend us wisdom from past experience; they can share memories of olden days, with humor and perspective. They can inspire us with their courage and resilience. They can give us love. In this process, we may be surprised at how flexible our own capacity to love may become. Even in the late stage of their dementia, our loved one may remind us how some bonds remain unbreakable. Caring for persons with dementia may give us more patience and more appreciation for wordless communication and for life than we’ve ever known.
We are in this together
Thinking about our relationship as a partnership will help make us more open to a person’s participation and input. We just might respect, value and love this person all the more. We are not the same as this person, and we have each been impacted by dementia and changed forever in vastly different ways, but surely we are in this together.
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
© 2018 Fairview Health Services