Writing on this day before Thanksgiving, my favorite holiday, I am thinking about all the people I’ve known, loved, worked with, learned from and admired who have lived or are living with dementia.
Mary Ellen is top of mind today. She was supremely intelligent, stunningly beautiful, elegant, well-travelled, and maintained a wild sense of humor. As her dementia progressed, she exercised her love of rhyming more and more. She was famous for enthusiastically blurting out, at random, “If you get to heaven before I do, just drill a hole and pull me through!” One day as I was sitting with a small group of residents, Mary Ellen was clearly in her rhyming mood. So I challenged her to make up a rhyme for everyone in the group. She did not hesitate: “Marysue, how do you do, Millie, you are silly, Dottie Dottie two by four, can’t get through the bathroom door.” (Fortunately, Dottie was hard of hearing.) ”Peg has a funny leg, Bernice fell in the grease, Mary Ellen is swellin’!”
I think about Jean, who knew lots and lots of Shakespeare. Well, she was British, so of course she did! She spoke it simply and beautifully, better than some actors I’ve heard at the Guthrie, I swear! When she was on hospice and just a few days away from her departure from this life, I whispered some Shakespeare into her ear.
I think about Betty, the Amazing Betty, who had been a pole vaulter in high school and college. She used a walker now, but loved being reminded of her former skill. She drank green tea way before it was popular. Betty had travelled all over the world, by herself. You could not name a country she was not absolutely sure she had been to, although a few of them she was only “pretty sure” about.
And another Betty was a wonderful pianist who could sit down at a piano and play like a virtuoso, though she might not be able to tell you who the composer of the piece was.
And another Betty knew a ton of songs from musicals; we had a lot of fun singing them together…“Getting to know you, getting to know all about you!” When Betty sang, it was with great joy.
Another Betty had been an artist, quite a painter. She also knew how to fly a plane. She was deep, this Betty. I remember the day she was scheduled to move out to another place. Her needs had grown beyond what could be provided where I was working at the time. She was not yet aware that she was to leave us that day, but for some reason she came to my office in the early morning, stood in the doorway looking right at me and said, “Have a nice life.”
I think of Millie who danced up a storm. She and her husband had gone to ballrooms every weekend, for years and years. Millie was in great shape from all that dancing!
I think of Eunice…fragile, vulnerable, always wearing a fashionable hat Eunice, always looking for her mother, always needing to find her. Eunice had cared for her mother, who had lived with Alzheimer’s disease. Eunice was not alert to the fact that she was now in the same boat. Eunice had been an avid golfer and even had a photo of herself and Arnold Palmer together! She was very proud of that! And she was the most competitive Balloon Volleyball player I’d ever seen.
I think of my mom, of course. I see her soft brown eyes and feel the way she tilted her head and looked at me that one time I came to visit. It was pretty late in her journey with dementia, I hadn’t seen her for a number of months and I had wondered if she would recognize me. I could tell she maybe didn’t know my name but the love that radiated through those eyes just about knocked me over. She wasn’t speaking much, if at all, by then, although I heard that one time she came out with an excited exclamation of “Bacon!” when she recognized the smell on her way to the dining room.
I could go on and on, listing the strengths and passions and quirks of so many people I’ve known who have touched me deeply, who have cemented my desire to keep connecting with people with dementia and to keep working to make their lives easier and more fulfilling.
I have a friend and colleague who had a stroke a couple years ago. Yes, he has some struggles with word-finding, organization, and short-term memory. His whimsical sense of humor and his personality are delightfully present.
I am grateful for all these people mentioned here, and for many whom I have not mentioned, including people I’ve seen present at conferences who defy the stereotype we all too often latch onto when we hear that someone has “dementia.” Many folks are successfully living with early stage dementia and working hard to erase the stigma that surrounds that word.
I am grateful for the strengths and skills that people with dementia retain. I am grateful that people with dementia continue to be themselves. Yes, the packaging looks different, and there are adjustments of expectations to be made on our part, not to mention theirs, but the spirit that drives people with dementia is unmistakably intact, if only one can learn how to connect with it. If only we do not give up on them!
-- Marysue Moses, Dimensions Program Coordinator
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 measureable 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 Arbor Glen and 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.
This month, I am sharing my blogspace with David Cobb, BCC, Director of Spiritual Health at Martin Luther Campus in Bloomington. Thank you, David for sharing your insights about caring with us here! Yes indeed, we are in this together. --Marysue Moses, Dimensions Program Coordinator
The day I walked in to the Martin Luther Care Center with a big purple cast on my arm, one of our residents (I’ll call her Peg) asked me what happened. “Ruptured biceps tendon,” I explained.
Peg winced for a moment, then grinned mischievously. “Now you know what it’s like for us!” she said. Well, maybe a little.
Things I can’t do easily right now: button my shirt, tie my shoes, slice a watermelon, type. Things I can’t do at all: ride my bike, mow the lawn, carry a grocery basket; tie a tie, wear long sleeved shirts, serve communion.
There’s plenty I can still do, of course. And there’s little doubt I’ll be able to use my arm again. But it’s not hard to imagine how hard it is for our residents to adjust to each “new normal.” Especially when the challenges are more permanent and mind, body, and spirit don’t heal like they used to.
Any unexpected shift in autonomy, sense of identity, connection to others, or meaning/life balance indicates a potential source of spiritual distress. As a chaplain, I have the privilege of helping residents and their families identify their distress and develop ways to cope with the challenges they face. Some have given up a home and its accompanying sense of place, a job and their role in providing for their family, responsibility for a pet, control of the kitchen, or the camaraderie of poker night with the boys. Such losses can trigger anger, shame, despair, anxiety, loneliness, or fear.
I’m not happy about my injury. It’s going to take a long time to heal. But it’s making me more aware of the spiritual distress our residents feel when moving onto campus, and as their physical conditions and relationships change over time.
Peg asks about my arm each time she sees me now. I try not to over-share. But it reminds me that some of our residents have a spiritual need to care for others, just like we care for them. We’re in this healing and wholeness business together.
Hmm, maybe that’s why we’re starting to speak about being not just care-givers but care partners. I wonder how you become a partner in care?
--David E. Cobb, BCC, Director of Spiritual Health, Martin Luther Campus
Apathy. It’s one of the approximately 500 symptoms you might well find under theumbrella 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
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
There could come a time when your parent with Alzheimer's disease or another type of dementia will need more care than can be provided at home. During the middle and late stages of dementia, sometimes 24-hour supervision is required to ensure the person’s safety. As dementia progresses further, round-the-clock care requirements become more intensive.
Making the decision to move a parent into a specialized memory care environment may be difficult, as it is tough to suddenly be faced with a decision that makes it feel like YOU are now in a parental role. But it is important to consider whether or not it is possible to continue to provide the level of care needed in the person’s home.
The questions below, from the Alzheimer’s Association website, are ones to consider when determining if a move to residential care is a good option:
Even if you plan ahead for a move, making this transition can be incredibly stressful. You may have an abundance of conflicting emotions. You may feel relieved and guilty at the same time. These feelings are common. Regardless of where you choose to have the person cared for, it’s good to keep your focus on making sure your parent’s needs are well met.
Please see http://www.alz.org/care/alzheimers-dementia-residential-facilities.asp for additional information.
--Marysue Moses, Ebenezer Dimensions Program Coordinator
Choosing a senior living community can feel like a daunting task. To help narrow down your options, ask these questions first:
What type of senior housing do I need?
Not all senior housing is the same. There are many options to consider depending on the level of care you need:
Ebenezer offers a wide variety of senior living options in Minnesota – including memory care, independent and assisted living communities and nursing homes. Each is designed to help you live more independent, meaningful and secure lives. For additional help in determining which Ebenezer community is right for you, read “Choosing Your New Home.”
What happens if I need advanced care?
If your care changes, make sure your senior living community is equipped to handle your shifting needs. Can you easily move from an assisted living to a nursing home? Is a hospital nearby if you need it? Can you keep your existing physician? Will your medical records easily be transferred?
Not only does Ebenezer offer all types of senior living communities, but we are also affiliated with Fairview Health Services. This means you have a wealth of resources at your disposal, from top-notch physicians to the latest in Alzheimer’s research. Each day we are working to improve the quality and safety of patient care, which is how Ebenezer and Fairview became pioneers in the secure transmission of electronic health records between nursing homes and hospitals.
Where do I want to live?
Moving into senior housing brings exciting changes, like choosing the exact area you want to live. Do you prefer the familiarity of your current location and want to find senior housing in your own community? Or, do you look forward to moving closer to loved ones who may live in a different area? Perhaps you are interested in experiencing a new neighborhood altogether?
There are more than 85 Ebenezer independent living, assisted living, memory care and nursing homes in both urban and rural settings throughout Minnesota. Since 1917, we’ve been Minnesota’s leader in senior housing, memory care and assisted living. For close to 100 years, our compassionate caregivers have been members of your community. Now, we invite you to be a part of ours.
Schedule a tour today to learn more about the vibrant senior living options at Arbor Glen!