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. 

According the CDC, one in three adults age 65 and older falls. In fact, falls are responsible for the most injuries and fatalities among seniors. And unfortunately, a fall can mean the end of independence . . . or worse; more than 25,000 people die each year from falls.
The good news is that falls are not a normal part of aging, and can be prevented! Since the place you are most likely to fall is in your own home, here are some simple steps to keep you safe

1. Be aware of your surroundings. Remove all clutter from your pathways—including throw rugs and electrical cords. Arrange furniture so you always have a clear walking path.
2. Install sturdy handrails on your stairs. In the bathroom, install grab bars in the shower or tub, or use a shower seat with a hand-held shower head.
3. Rearrange the contents of your cupboards to be within easy reach—knees to shoulder. NEVER stand on a chair to reach something high.
4. Keep it bright. Use night lights in your bedroom and be sure to turn on the lights if you get up at night.
5. Take your time. Don’t rush to answer the phone or door, walk carefully.  If you feel dizzy, stand up slowly. It’s also a good idea to sit on the edge of the bed before standing up when you first wake up.
6. Wear well-fitted non slip shoes with low heels and good support. Don’t walk in your socks. Make sure laces are always tied and short enough to prevent tripping
7. Have your doctor or pharmacist review all medication you are taking—even over the counter drugs, vitamins and supplements. Some medications have side effects that can lead to a fall. Always keep a list of your current medications.
8. Don’t lift or carry anything that’s too heavy. When unloading your car, or putting away washing make several trips with small loads.
9. Ask your doctor or therapist for safe exercises that build strength and improve balance.
10. Take care of your feet! Trim toenails and check feet every day for sores, bunions, calluses, warts and numbness. If your feet hurt, you will be less active—which could increase your risk for falls.

 
If you do fall, see your doctor right away, even if you are not hurt, you should find out why you fell to keep it from happening again!

For more information about preventing falls, please click here http://www.fvfiles.com/520270.pdf to see a comprehensive checklist about preventing falls, visit ​https://www.fairview.org/overarching-care/home-care-and-hospice/fall-prevention, or call 612-721-2491 for more information.

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

by Mirjam Berger, Th.M.
Corporate Director of Spiritual Health Services
ACPE Certified Educator ​

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.
​
Sacred Story
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.

My people
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.  

​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

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:

• living alone
• living with untreated hearing loss
• living with mobility impairments
• no longer driving or have limited access to transportation
• recently experienced the loss of a spouse, friend or partner
• caregivers

 
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!”
 
Here’s why:

• Senior living brings people together. Coffee socials, happy hours, and even chatting over lunch helps to grow those meaningful relationships that increase health and longevity.
• Senior living provides opportunities for purposeful engagement in daily life. Our residents like to volunteer, help out their neighbors, and share with friends.
• Senior living offers spiritual programming in the community, and often offers transportation to local services. Research shows that regular attendance at faith-based services (no matter the denomination) improves life expectancy.
• Intergenerational programing brings older adults and young children together to work on projects together, enjoy each other’s company, and learn from each other. The young and the young at heart both have so much wisdom to share.
• Senior living provides regularly scheduled fitness classes to help maintain physical mobility. It’s also an environment where you don’t have to feel judged or insecure about using adaptive devices (like walkers or wheelchairs) you may need to help you stay more independent.
• An accessible van means you can easily get out and about, to do shopping, visit restaurants, and more. You stay connected with the community at large, and continue to do the activities you love.

 
We invite you to visit an Ebenezer community. Talk with our residents to hear how their health and their lives have changed for the better after moving to senior living.
 
For more information about loneliness and isolation, the AARP Foundation offers its online resource Connect2Affect. There you can find a self-assessment to determine your risk factors and tips on how to stay connected. Click here to take your self-assessment. Resources that informed this article include Government’s Role in Fighting Loneliness by Emily Holland, as published in the Wall Street Journal, and the Blue Zones Power 9 ® by Dan Buettner.

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 the umbrella term of dementia.  According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness. For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought. Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.  

Initiating activity involves planning, organization and motivation. Planning can be complicated, involving lots of steps.  For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming”.  When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.  

To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time.  We have to remember that the changes of dementia are disease-related, and brain-based. It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us.  The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have. We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.  

Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy. These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:

1. Check your emotions – do your best to maintain a positive tone.  An angry annoyed tone will be understood by the person with dementia, even if your words are not. 
2. Practice patience.  People with dementia may need extra time to process information and to respond.  
3. Develop activity interventions that are based on the needs and interests that have motivated the person in the past.  Be sure to modify past interests to current abilities.
4. Keep things simple.
5. Do not rely on verbal cues and communication alone.  When you think about creating activities that might spark interest for someone, consider things you can show the person, music or sounds they can listen to…What might you just put in their hands, without any words?  See what happens!
6. Introduce multi-sensory stimulation one sense at a time, so it’s not too overwhelming.
7. Start an activity together, (folding laundry, putting away dishes) standing side by side.  Let the person continue the activity on their own. 
8. Plan personal care at the person’s best time of day.
9. Provide just one or two choices to limit overwhelm. 
10. Remember that a bored expression doesn’t necessarily mean that the person derives zero benefit or enjoyment in the activity.  Remember too that apathy can come and go.  Look for the openings, and use those opportunities to best advantage.

This blog is based on information taken from a publication called Partners in FTD Care (8, WINTER 2018), available through the Association for Frontotemporal Degeneration, 267.514.7221, www.theaftd.org   
--Marysue Moses, Ebenezer Dimensions Program Coordinator
 
 
                 
 

Have you ever noticed how snuggling and petting a dog, or giving a cat on your lap gentle strokes seems to create a sense of calm and wellbeing?  Turns out, there is a scientific reason behind these good vibe feelings.

According to an article in TIME magazine and a 2015 Harris poll, "95% of owners think of their animal as a member of the family. About half buy them birthday presents. And it’s a two-way street. People who have pets tend to have lower blood pressure, heart rate and heart-disease risk than those who don’t. Those health boons may come from the extra exercise that playing and walking require, and the stress relief of having a steady best friend on hand.

Scientists are now digging up evidence that animals can also help improve mental health, even for people with challenging disorders. Though the studies are small, the benefits are impressive enough that clinical settings are opening their doors to animal-assisted interventions–pet therapy, in other words–used alongside conventional medicine. 
The rise of animal therapy is backed by increasingly serious science showing that social support–a proven antidote to anxiety and loneliness–can come on four legs, not just two. Animals of many types can help calm stress, fear and anxiety in young children, the elderly and everyone in between."

That is why most Ebenezer locations welcome our furry friends along with their human counterparts to our senior living communities.  We have witnessed the joy a dog can bring to the face of an elder, even a nonverbal, expressionless dementia resident. They suddenly light up and reach out for the dog.  We have also seen animals bring together residents and help forge new friendships.  It is a common denominator that people love  - sharing funny and meaningful stories about their pets. As long as pets are well behaved/good neighbors - they help bring life into all our Ebenezer homes. 
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Until one has loved an animal a part of one's soul remains unawakened.