Since late October, I have had the pleasure of collaborating with my friends Jeanie Brindley-Barnett, Senior Teaching Artist, MacPhail Music Center and Zoë Bird, Director of the Alzheimer’s Poetry Project – MN.  We have been collaborating using Shakespeare, poetry and music to engage persons with dementia at one of Ebenezer’s Assisted Living sites. As we near the end of this project, I will take with me, among others, memories of the following:

• The person who only speaks in a whisper.  It is a great effort for him to do so.  But he does it.  And he taps his feet to the beat of the songs we sing.   

• The man who used to play the guitar in a band.  Jeanie brought in a ukulele one time and put it in his arms, he cradled it lovingly, and he beamed.  He strummed a little, but mostly he beamed.    
• The woman with the delightfully sarcastic sense of humor.  “Shakespeare:  He never calls, he never writes”,  she complained.  That was at our very first session.
• We were talking about things we love, because the theme of our work together is “Colors of Love.”  One woman said, with pleasure, in a gravelly voice, “I love money!”  A gentleman countered, “We called my mom, “Money!”
• The woman who loves to dance, to move her arms.  She is positively transported when this happens, it’s like she’s floating in outer space. 
• At the end of each session, everyone gets a lightweight paddle drum and a mallet with which to beat it.  It’s extraordinary to see all of them, this big group of 15-20 people with disparate attention spans, focused together on the beat of a song.
• The woman with the you-never-know-what-she’ll-say-next sense of humor also loves to sing.  She starts each session by singing “Over the Rainbow,” by herself.  When Jeanie started playing that at the very first session, she just got right up, stood by the piano and sang it.  This has become our opening ritual for every session.       

The longer we work with them, the more coalesced the group becomes. I notice they seem to be more comfortable with whomever they sit near than they were at the beginning.  We usually go around and have everyone sing their name. This was a bit like pulling teeth when we started. But now, most are very willing to give it a try.
      
Jeanie is fond of saying “There is no wrong in this room.” We three do our best to go with the flow of the group.  Every response is valid, every response is appreciated.  We write down a lot of their responses and it becomes a new poem or the lyric to a song Jeanie writes music for. Some things we try go over better than others, of course, but we learn from whatever responses we get.  There is a feeling in these sessions of a great relaxation, an opening, where people can just be and feel what they feel, say what they want, participate at whatever level is working for them that day, that moment.  It’s a bit of an oasis for them, and for us as the group leaders as well. It’s like we are on this wonderful everchanging and enchanting island for an hour and 15 minutes.  It’s very safe there. 

Excellence in dementia care demands a kind of constant “you are okay with me” attitude.  Not only that attitude, but a clear communication of that meaning.  What the person with dementia most definitely does NOT need is to be corrected, pressured or argued into anything. We need to go to their side of the street, as they are likely NOT able to see things the way we might prefer them to see it. Trying to bully them into coming over to our point of view is wasted effort, wasted time, and a wasted opportunity to build relationship. When we see where someone is at, accept it, and communicate that we do accept it, they know they are safe with us. They know they are seen. They know they are heard. They know they matter. We then can more easily move on from a stuck place. When we send the message that we respect the person’s feelings (“I get it, Mom. You really don’t like it here right now. Tell me more about that”), we are communicating that we are willing to understand WHY they might be feeling the way they feel, WHY they might be doing what they are doing (even if that is not our favorite thing) or WHY they might be wanting what they want. We are, in effect, building a bridge. The phrase “Tell me more about that” needs to be said often, much more often than it currently is, to persons living with dementia. And the listening that must follow needs to be sincere and deep. 

Let’s not forget the sense of play, either!  A light touch, a sense of gentle amusement can be very helpful in dementia care.  We need to not take it all so seriously!  In our sessions speaking bits of Shakespeare, creating poetry and making music with people, we stimulate their creative spirits, we get them talking about things that mean something to them.  We are fishing around, but with a light heart.  We are playing with them.  I urge anyone who is a care partner of a person with dementia, or who is in a caregiving role, to never underestimate the value of play.  
​
Relationship with a person with dementia is a partnership!  A dance!  Toes that get stepped on usually recover! It just might be a FUN dance!  Enjoy the collaboration!            
 
-- Marysue Moses, mmoses1@fairview.org, with thanks to Jeanie Brindley-Barnett and  Zoë Bird. 

It is often said that most adults fear a diagnosis of dementia more than they fear getting cancer. Is that true for you?

I remember the husband of a woman with Alzheimer’s disease exclaiming, in no uncertain terms, “I think Alzheimer’s disease is worse than death!”  And yet, Peg, his wife, who was in her early 70’s, was still a lovely person with a great big heart. How she loved to sing. We could always make her smile with a verse of “Peg ‘O my Heart.  She and I shared a love for Broadway musicals. We sang (and danced down the hallway together) to many a show tune. I was amazed that she still knew the words to even wordier numbers like “Getting to Know You” from The King and I.   

Of course, she had down times when she was feeling very blue indeed, and nothing seemed to make sense in her head. But she wasn’t like that most of the time. There was so much in her that could still be reached, tapped, enjoyed, shared and celebrated. I felt sad for her husband, who rarely seemed to laugh with his wife anymore. To his credit, he dutifully walked her around the assisted living building (even up and down stairs) several times a week. Yes, her muscles were that strong…another strength to check off for Peg! 
I am intentionally trying to talk more about the strengths people with dementia retain whenever I train or present on dementia topics. If more people could start looking at dementia as a disability to be reckoned with, supported and managed, from Day One, I am convinced they and their care partners will do much better (even as dementia progresses) than folks who basically get told to “go home and get your affairs in order.” Shame on any doctor whose first message to the person they have just diagnosed sounds an awfully lot like “Time to crawl in a hole and die”.  Unfortunately, many people with dementia have received that very message and have taken it to heart. Then what happens? They give up. They isolate themselves. Their spouses and partners sometimes do the same. Two persons’ remaining lives are irreparably changed for the worse, and the dementia journey is consistently painful for them both.   

I do not mean to say that the dementia journey will be a picnic, if only we put on our rose-colored glasses.

I know that dementia can be challenging. There are types of dementia that may cause delusions or hallucinations that are scary or traumatic for the person. Behaviors that are out of character can be heartbreaking for the person’s family to deal with. And yet, I have seen how caring, supportive relationships can still be built and maintained even with people whose personalities have altered drastically. Humor, common humanity and joy can still be found. Just because people aren’t talking as much or as well as they used to doesn’t mean they are not wise, or full of feeling, or that they have lost their need to be seen, to feel recognized, and to give and receive love. 

Last week I was privileged to witness the change on a resident’s face when a ukulele was put into his arms. This gentleman had played guitar in a band for many years. He had an old guitar in his room, but the man had grown too frail to hold onto it effectively. At first, as the ukulele was offered, he was saying “No no no, I can’t” but then, as he realized he actually could manage this smaller instrument, he relaxed. He held on, strummed….and grinned, so very sweetly.

Since I found out about the Dementia Action Alliance, I have feared dementia much less. Check out www.daanow.org for a bundle of inspiring resources and blogs.

So, how about we see if strengths can win over fears.

Let’s focus on strengths that persons with dementia have. Let’s feed them and use them to best advantage. Let’s adapt activities so that those strengths can be more easily accessed.
Here’s a partial list of strengths that persons with dementia I’ve known have retained. Each person will of course exhibit a different combination of strengths. Some listed here may not apply at all to your loved one.  But some of them might.
​
See what you think…and then see what you can do to remind the person of these strengths. What can you put in their hands, read to them, say to them, where can you take them or what can you show them or otherwise offer to stir each particular strength up?   

• Sense of humor
• Long-term memory
• Sensitivity to others’ moods and feelings
• Sense of social graces
• Creativity
• Interest in other people
• Ability to give and receive love
• Appreciation of music
• Appreciation of flowers
• Talents
• Skills
• Appreciation of friendship
• Need to give and receive love
• Strong faith
• Strong sense of spirituality
• Appreciation of nature
• Appreciation of pets
• Appreciation of children and babies
• Imagination
• Honesty
• Integrity
• Grit
• Passion
• Gratitude
• Courage
• Resilience

Have fun!

Marysue Moses,
Ebenezer Dimensions Program Coordinator    

​Care partners of persons with dementia are often eager to know what stage their loved one is currently in and how best to work with and relate to the person in these phases. I will give you some general tips here, but first let me say two things for a larger context:
Remember that people with dementia have strengths, no matter where they are at in their journy. Please think about those specific strengths, as this is what our care and interaction is built upon.

Everyone has a sense of humor. With some individuals, we may need to work harder than with others to tease that out. People with dementia can be very creative and expressive. Their connection to and memory of music is an impressive strength and often a source of joy for them. Persons living with dementia are tremendously resilient and courageous. They still have interests and passions, even if they may be unable to initiate anything about that interest or articulate what their passion is all about.

Another strength (one that often evades those of us who do NOT have dementia) is the ability of persons with dementia to be present in the moment, right here and right now. They still possess insight and wisdom related to their personal lifetime of experience. They are sensitive to moods and emotions and non-verbal communication. They will remember if you are someone who has been kind to them over and over again. They enjoy simple pleasures.

Persons living with dementia retain the need and the ability to give and receive love, to feel close with others, and to touch those they feel most connected to. (With some types of dementia, this ability may be harder to recognize, but I urge you to not give up on making a connection with the person’s heart, personality and spirit.) That spirit, deep inside is intact. If we keep all of this in mind as we work to manage the needs and to read the communication of the person, we as care partners will do better. Our loved one will fare better too, across the dementia continuum.

While dementia is progressive, people with dementia are (obviously) people! Like the rest of humanity, they have changing moods, good days and bad days, high energy and low energy, and strong emotions from time to time. A person might be in the early stages but having a very frustrating experience that for a few minutes, hours or most of a day causes intense confusion and upset. At this time the person may seem like they are acting more like someone in the middle stages, or even a later stage. So please take the generalizations that follow with a gallon of a salt. Use them for insight and guidance as they are helpful, but realize there can be tremendous variation and fluctuation within the progression of dementia.

That said...

I prefer to think about dementia in 3 phases, early, middle and later. Others talk of 5 or 7
phases, but it makes sense to me to keep this less complicated.

Early dementia correlates with the loss of adult learning. In other words, the last skills we
learned as adults will be the first things that become challenging if we have dementia. Trouble with thinking and making decisions may result in problems with driving safely, managing money, keeping things organized, or remembering appointments. This may well mean the person will have difficulty managing their day without some assistance. This can be an anguished phase for people, as they are well aware that something is not right with their brain. They may not want to admit it and may get good at hiding it. People with dementia in this phase will do well if they are treated with patience, kindness and understanding. They will very much need honest, caring conversations. They need to be listened to and given choices. They need support as well as compensation strategies. They need to know that they can still contribute to the lives of others. This is, sadly, NOT always the message that people with dementia receive at diagnosis. However, there are many helpful resources out there for persons who have just been diagnosed. Did you know that there are people in early stage dementia who have been doing extremely well, for many years? You will find affirmation of this and a wealth of helpful information on this website: www.daa.now The Caring Conversations Toolkit available on this site is a wonderful resource for communication with a loved one who has recently been diagnosed.

The middle phase of dementia corresponds to the loss of adolescent learning. This can be a turbulent time emotionally, not unlike the teenage years. People in this stage at some point usually forget that they are forgetting, so there can be plenty of frustration directed at the outside world or at other people as a result of the confusion the person experiences. People in this phase often still have considerable physical energy and loads of passion. If we provide structure as well as engagement opportunities for the individual’s energy, interests, and sense of purpose, they will do well.

In the later stages of dementia, the person is experiencing the loss of childhood learning. They may not remember how things work exactly. They may not recognize or misuse objects, and there can be a lot of stubbornness and frustration erupting as a result. We need to slow down when we interact with these folks, and help them adapt. Sensory stimulation will become more important, and simple pleasures will remain comforting. Sitting outside on a lovely day and feeling the breeze, holding a real live baby or interacting with a young child, experiencing a hand massage will be energizing and enjoyable. There may not be as much talking, but there can still be communication and connection. We can hold a hand, read a favorite poem, and retell those storied memories that the person used to share repeatedly.

Whatever the phase, let the person know what they mean to you. Give them compliments.
Tell them what you admire most about them. Remind them of what they have given you.
Explore your way to playful interaction, laughing together, and having fun. May you find many moments of peace together, where dementia simply doesn’t matter. Always remember, the person is doing the best they can, the absolute best.

Thanks to Megan Carnarius, author of A Deeper Perspective on Alzheimer’s and Other
Dementias, and to Claudia J. Strauss, author of Talking with Alzheimer’s, for many of the ideas reflected here. – Marysue Moses, Ebenezer Dimensions Program Coordinator

Our Memory Care program at Ebenezer now has a name –Dimensions. 
Dimensions has five building blocks:

• Wellness through person-centered, relationship –based care,
  
• Innovative training
  
• Engagement
  
• Supportive environments
  
• Family education and support
  

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 askthe individual, if they are able and willing to respond to them. 

The point I am making is  part of the  theme 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.   
~ Marysue Moses
Dimensions Program Coordinator
mmoses1@fairview. org  

​

​In grad school about a decade ago, I ran across an article that provides guidance,
inspiration and reassurance for exhausted dementia care partners. Is there anyone out
there caring for a person with dementia who is NOT exhausted at this time of year? If so,
please send me YOUR insights to share in a future blog!
​
Wayne Ewing’s article, “Land of Forgetfulness: Dementia Care as Spiritual Formation,”
recounts his journey as caregiver for his wife who was diagnosed with early onset
Alzheimer’s disease at age 55. Wayne quickly realized that his skills as a clergyman and
educator, while relevant, were not the entire package of what he needed in order to cope
with the change in his “Beloved,” as he calls her, and to navigate the transformed waters of
their relationship.  

Wayne considered the wide range of needs that both he and his Beloved now had to
contend with. He figured them out one by one and in time, Wayne discovered that he could meet his Beloved in the present moment. As they walked together in a pine forest near their home, he marveled at and shared in the delight and awe she expressed at the beauty around them.    

This led Wayne to begin to ruminate on the Alzheimer’s Association’s Ten Warning Signs of
Alzheimer’s disease. Using an impressive knowledge of many religious traditions and
spiritual scribes, he imagined how all those (scary and depressing sounding) warning signs
might be looked at in a new light, the light of spiritual formation.  He handily spun that list
into Ten Steps in Spiritual Formation, pointing out the following:  

•  Memory Loss…St. John of the Cross described “the sum of all perfection” as

“the oblivion of the world.” How many people on earth use meditation or other
practices precisely to clear the mind of details that keep us away from enjoying the
here and now?)

•  Problems with Language…Mother Teresa said, and religious mystics have agreed,

that “God is the friend of silence.”

•  Disorientation of time and place…Meister Eckhart wrote that “the soul who

knows God knows God above time and place.”

•  Poor or decreased judgment…All religions counsel us to abandon judgment. 

For example, the Bible tells us to “Judge not, and ye shall not be judged” (Matt. 7:1).

• Problems with abstract thinking and problem solving…In many spiritual

traditions, this is viewed as a stepping stone towards an increased ability to
dissolve ones thoughts and create calm. 

•  Misplacing Things…can be seen as a sign of losing attachment to material

possessions… (I plan on reminding myself of this one the next time I misplace my
phone!)

•  Changes in mood or behavior…Nicolas of Cusa notes that these changes are

required in order to gain spiritual wisdom.

•  Changes in personality…Nicolas of Cusa also maintains that personality

changes are to be expected if one is to grow spiritually.

•  Loss of initiative…Meister Eckhart’s advice was to be passive in order to allow

the holy to be active within us. 
Wayne’s thinking reminds me of what I have learned about a common Native American
view of persons with dementia:  that they are actually in communication with the spirit world
at a level that none of the rest of us can understand. This way of looking at dementia
intrigues me. It supports my certainty that even though a person with dementia may be
quiet, important spiritual work of some kind is going on, deep inside.
I thought I would wrap up the blog right there.  But no.  Here goes.
My beloved husband died of cancer over 5 years ago. He was on hospice for a little over
two months, and bedridden for just a week and half. Phil was an extremely smart, hyper-
witty, charming, snarkily funny guy. He had been an actor since he was 6 years old. He
could be very loud on occasion.  It was amazing to see Phil become so quiet in his last
weeks.  While it didn’t occur to me at the time to use the term “dementia” for anything that
was going on with him, it was several  years later that I suddenly realized that he actually
was exhibiting dementia symptoms in his last 10 days: trouble with language and motor
skills, disorientation, nonsensical speech, lack of initiative.  For a time, our verbal
communication consisted of him whispering the last few words of whatever I had just said to
him back to me. But one day, he departed from that pattern. When I said, “I love you,” he
replied, “I love you too.”  How one little word can mean the world!   That was the last thing
he said to me, or anyone.  I had assumed I’d be playing all sorts of his favorite music as the
end drew near, but instead, it felt to me like he was very busy inside (and things were
probably noisy enough). It seemed that the spiritual journey he was on required his entire
focus and attention.  I think (and hope) that was the right call.
Wishing you and whomever you care for a calm and bright new year!
​
-- Marysue Moses, Ebenezer Dimensions Program Coordinator, mmoses1@fairview.org
Wayne Ewing’s article, Land of Forgetfulness: Dementia Care as Spiritual Formation” is
published in Religion, Spirituality, and Aging: A Social Work Perspective, by Harry R.
Moody, The Haworth Social Work Practice Pres, 2005.
Thanks also to Megan Carnarius for information on the Native American view of dementia,
and to Mirjam Berger and David Cobb for insights related to Wayne Ewing’s article.

​Thankful11/21/2018
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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
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​​Misplacing Things, Paranoia and Dementia
Paranoia is one of the many possible challenges of dementia. It’s a blaming belief or suspiciousness that a person with dementia holds onto, despite explanations or lack of proof of this belief. 
 
Sometimes people with dementia will accuse others in the household of stealing something that they themselves have misplaced.  It is very tempting to try to convince the person otherwise when they are convinced that something has been stolen.  But arguing doesn’t get us very far when a person has dementia.  It usually causes stress, frustration and upset for all concerned!  It is more productive to “cross to their side of the street” in order to see things compassionately, from the person’s point of view.  Sandra Mcgurran, social worker with Fairview Home Care and Hospice Senior Services, recently shared with me the idea that “Compassion = Empathy + Action”.  This concept can be applied here.  
 
Here are some DO’S and DON’TS to guide you in giving a compassionate response in these sorts of situations.  
 
DO NOT TAKE OFFENSE on behalf of the accused person.  
DO LISTEN to what is bothering the person with dementia, and VALIDATE their feeling, i.e., “That’s not a very nice feeling, to think someone would just take something from you.”
DO RESIST THE URGE to get into an argument with the person.
DO ACKNOWLEDGE the upset. “I can see why you’re upset. I would be too, if that happened to me.”
 
DO NOT offer a lengthy opinion or a list of reasons why they shouldn’t be upset.  
DO OFFER A SIMPLE IDEA. “I wonder if your blouse is in the wash.” Or… “Maybe your wallet was left in a pocket?” 
DO BE HELPFUL and action-oriented. “I will go check the laundry room.”  “Let’s check your pockets”. 
DO ASK QUESTIONS. “Let me get this right.  What color was that shirt?  
DO BE REASSURING. “Don’t you worry.  We will get to the bottom of it.”  ‘I’m sure we’ll find it”.  “I’m good at finding things.”  
DO SHIFT THE FOCUS.   “Let’s have a cup of coffee; coffee always helps me think more clearly!”  Be sure to offer something you know the person will be interested in! 
DO DUPLICATE items that are repeatedly misplaced.  For example, if a person often loses their wallet, obtain several of the same kind to keep on hand.  Make copies of cards that are in the original, so you can stuff the replacement wallets with those.   
 
But what if YOU are the person being accused directly?  This can certainly be tricky. 
It’s hard not to feel hurt by such an accusation.  What can you do?
DO LET THAT ROLL OFF YOUR BACK in favor of remembering that your family member is functioning with a brain that is doing the absolute best it can possibly do under the circumstances of dementia. 
 
DO TRY IGNORING THE ACCUSATION.  Instead, simply validate the person’s feelings, i.e., “Oh no! Your favorite blouse is missing?  Of course you’re upset. That’s a beautiful blouse!”  
Maybe this will distract the focus from YOUR culpability, or maybe not.  Depending on the level of the person’s upset and suspiciousness, you might need to step away and if someone else is available to assist.  In that case, try, “I can see you’re upset with me.  I’ll go see if Ann will help you look.”       
 
DO THINK AHEAD.  For things that are frequently misplaced, it could be helpful to establish and clearly label a home base in the room where a purse can hang or a wallet can sit.   You might initiate a routine of checking that spot every night together.
 
Finally, it can really help in any sort of frustrating situation with a person with dementia to MAINTAIN A SENSE OF HUMOR AND GOOD WILL towards the person.  Is there a way you can turn that uncomfortable situation around and actually give the person a compliment?  Maybe you can remind them of advice they once gave you! “You know, Mom, I remember you telling me when I lost stuff that I would forget my head if it wasn’t attached.  You were so right!  You also said that lost things usually turn up if we are teensy bit patient!  That was always so helpful!”  
 
For more info on coping with paranoia as well as other challenges that can arise with dementia, see Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White. 
--Marysue Moses, Ebenezer 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 theirside 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. 

Relationship-based care
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 bothpersons 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.
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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  ​

​If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to. Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning.  This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose. I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage. I might mix up medications, so please keep an eye on that. I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal.  Multitasking is way too overwhelming for me.  My speech may become vague as I struggle to remember the details of whatever you are asking me about. 

It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have. There are many! In this early phase, I still have a sense of humor. Please help me find opportunities to laugh.  Ask me questions you know I can still answer. Do not quiz me to remind me of what I am forgetting.) I still have the capacity for ideas and decisions, so be sure to give me some choices. Relationships are still important to me.  Please reassure me that you care.  Hold my hand and speak to me with warmth and kindness. I still have interests. Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree.  Give me reminder notes if those still work for me. 

In this phase, I will most of all need compassion and understanding.  I am still a person, a person whose spirit is experiencing considerable anguish at the moment. Please avoid arguing with me, and do whatever you can to make things easier for me.  But please try not to scold or embarrass me in the process.  If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!” Please don’t take it personally if I get mad at you or seem to blame you at times.  I do this because I am scared.  I have a sense that I am losing control.  If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you.  I so need your love, support and your patience at this time.  Thank you for asking me what I need!  
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--- Marysue Moses, Ebenezer Dementia Care Program Coordinator

This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.