’ve been thinking a lot about comfort lately. Thanksgiving has always been a cozy, comforting and deeply meaningful time for me. This year the structure is a bit different. Friends with whom I have (for decades) usually gathered on this holiday and I are planning some doorstep drop-off food exchanges, a virtual happy hour and dinner, and our usual pre-pie ritual, also courtesy of Zoom. We’ll light candles in the dark and talk at length about what we are most grateful for right now. Simply thinking and e-mailing about the logistics of our upcoming get-together has cheered me. 

I’m also thinking about how our lives over the past nine months have been put into this Mixmaster of the pandemic, along with election stress, and racial and societal tension. Routines, work lives, leisure activities and opportunities to socialize have been mightily disrupted. For too many people living with dementia, the changes they and their care partners experience are likely even more dramatic, due to the isolation endemic to their situation.   

When someone receives a diagnosis of Alzheimer’s disease or any other sort of dementia, friends sometimes scurry away, not knowing how to interact, not knowing how to respond, not wishing to feel helpless and depressed in the face of a friend’s decline, or simply because they do not understand how they might make a significant, positive difference. Being a friend to a person with dementia is being a friend indeed. I applaud those of you who do that and encourage everyone to open to that possibility.  There are resources that can help you be successful. Here’s a good place to start: https://dementiafriendsusa.org/become-a-dementia-friend

Care partners become exhausted filling the role of be-all-and-end-all personal caretaker for their family member or friend. I can only imagine how COVID has exacerbated these dynamics.

So. The season of GIVING is upon us.
At this time, I think one of the best things we can give to a person with dementia, or to their care partner, is comfort. Comfort comes in so many forms: a listening ear, a warm sweater, a handwritten letter in the mail (remember those?), a memory shared, hot soup on a cold day, a text, a song sung over the phone…there are endless possibilities. Each of us human beings have certain things which may give us comfort but may leave others scratching their heads. When we provide comfort in those person-specific ways, we make a deep difference. It strikes a strong chord, activating sweet memories and gently plucking the heartstrings of the individual. We give the person a grounding experience, a reminder of who they are. How important that is these days, when persons with dementia (certainly those living in assisted livings or care centers) are not experiencing as much physical touch as they need.  

I suggest that care partners of persons with dementia create two lists: 1) What Gives Me Comfort and 2) What Gives _____________(name of person with dementia) Comfort. A fun activity might be to brainstorm with a person living with dementia questions like these: What brings you comfort?...What is comfort for you?... Consider what comforts you both now, as well as what gave comfort when you were young children, teenagers,  young adults. There is no wrong answer, and all answers may be useful.  

My nose was running the other day. I remembered I had some Vicks VapoRub in the closet. (Ancient Vicks VapoRub! Yikes – the expiration date stamp was “Aug 09”!)  Astoundingly, it still had an intense aroma, giving my nose, chest and throat that fondly familiar, delightfully over-the-top mentholated, tingly cool sensation. For a moment, it sent me right back to gazing at the gabled upper walls and the blue and white wallpaper pattern of the bedroom in which I grew up, along with memories of my mom bringing meals to my bed when I was sick.

I digress…But the point of these lists is to SHARE them with people who might be able to assist you in collecting the right tools for comfort giving…and/or receiving. If you care for someone at home and a friend should casually offer, “Just let me know if you need anything around the holidays,” you could whip out your list and name something specific (i.e., “CHOCOLATE!”) that they might pick up, find, make or do for you and/or yours.
If you have a friend or family member living in an assisted living or care center, please be sure that the staff is given a list of those things that provide comfort for that person. You should be asked that question upon move-in and encouraged to answer with plenty of detail.     

Jolene Brackey is a visionary dementia care specialist. She wrote Creating Moments of Joy, an easy to read guidebook for people who care for persons with Alzheimer’s and  other dementias. She suggests that upon move-in to long-term care, families of those with dementia should bring in a cardboard box of selected items that symbolize the person, things that are meaningful to them, items that stimulate memories, encourage engagement and…provide comfort.

I think it’s worthwhile (and fun) to take a moment to ponder this question:  If YOU knew you were going to get dementia, what 3 things would you want to be sure to have in YOUR cardboard box? (Don’t worry, it’s perfectly okay to put more than 3 things in your box. The more the merrier.)

If a person, like me, is obsessed with Shakespeare, a volume of his Complete Works should be in there. (My box will be heavy. I also like rocks. I am seriously thinking of assembling my box in advance, just in case, to make sure nothing is missed!)  
If these ideas sound sort of radical, well, good! Radical change in how we tend to think about and care for persons with dementia is in the air. These ideas are sensible and practical. They can make the jobs of caregivers and care partners alike ever so much easier.  

We who work in the field of dementia care need to know how to provide person-centered responses that will be helpful, should a person with dementia become upset. If people with dementia do not get needed support and comfort, they will have a NORMAL human reaction to those needs being ignored. Anxiety, frustration, anger, and (when needs are continually ignored) even aggression may result. These emotions and the actions that accompany them should NOT be given the shaming label of “behaviors”.  Let’s talk instead about “expressions of needs” or, “behavioral expressions”.  These sorts of communications require a thoughtful response (not a knee-jerk reaction). A response requires someone to step up, step in, (or in some cases, to step back) and to muster the compassion, curiosity, and patience required to determine how comfort can best be provided to that person in that situation.
​
Thankfully, we CAN give comfort, yes, even during the storm of this ongoing pandemic. 
Happy Thanksgiving to all.
--Marysue Moses, Dimensions Program Coordinator, mmoses1@fairview.org

So many people have questions, doubts and worries when they start to consider whether it’s the right time to move a parent out of their home and into a long-term care community of some kind. I was lucky to sit down with Stephanie to learn how she and her family handled her mother’s need for additional care, ultimately resulting in a move to the Willows Memory Care Community at The Fountains at Hosanna in Lakeville.

Stephanie’s dad passed away a quarter of a century ago. Her mother, living in a townhouse an hour away from the Twin Cities, had been slowly declining, physically and mentally. Stephanie and her brothers were aware of the decline, but they didn’t realize until a few years ago that all those little signs added up to a need for a major move. Once they recognized this need, they decided to bring their mom along to an Open House at The Fountains at Hosanna, which offers Independent and Assisted Living as well as Memory Care. The siblings knew that getting their mom to accept a move could be an arduous process. Mom had always been fiercely independent and determined.

After celebrating Mom’s birthday lunch together, they “spontaneously” decided to stop by the Fountains’ Open House on a Saturday afternoon. Mom was uncharacteristically quiet during the obligatory tour. On the way out of the building, Stephanie commented on how nice it seemed there. Mom wasted no time in retorting, “Fine! YOU live there!” Mom was scheduled to stay around for a few days before returning to her own home. During that stay, she fell in the bathtub, and it became abundantly clear to her three adult children that she really shouldn’t be living alone anymore. Mom never went back to that townhouse.

A Power of Attorney was put in place in record time. Mom moved to Assisted Living at The Fountains at Hosanna within nine days of her initial visit there. It was an emotionally tough time for Stephanie and her brothers, even though they were sure this was the correct decision. That confidence helped through the harder moments, of which there were plenty, including the process of cleaning out Mom’s townhouse and figuring out what to bring. The role reversal was disconcerting to Stephanie at first. “You feel like you’re disobeying your parent when they are resisting, and YOU have to be the one making decisions and taking care of them now. But I realized that doing all of what we were having to do was simply a different way to ‘honor, respect and obey’ my mom, the way we had always been taught to do.”

Stephanie and her brothers decided it would be best not to tell Mom in advance about the move. When her new place at the Fountains was all set up with her furniture and ready to be lived in, Stephanie took Mom out to lunch. Afterwards, they drove up into the Fountains parking lot. Mom recognized the place as familiar. “We’ve been here before!” she exclaimed. Stephanie announced, “Mom, we have a surprise for you.” When Mom saw her name by the door of her new Assisted Living apartment, she was in shock. When she walked in and saw her furniture, she asked, accusingly, “Why are you doing this to me?” Stephanie was ready with well-thought out, simple responses, which she delivered without any defensiveness: “Mom, you need help. Here, we can spend more time with you and the grandkids can see you too.” Mom wanted to know where they got that “new bedroom set”. It was actually the same set she’d been using for the last 40 years.

That first night, Stephanie stayed overnight in Mom’s new apartment. Disgruntled, Mom had gone to bed early. Stephanie was trying to sleep on the sofa but was herself unsettled and upset. She was still not yet asleep in the middle of the night when Mom got out of bed. Stephanie closed her eyes. Mom tiptoed over, covered her only daughter with a blanket and said softly, “I love you.” Stephanie slept soundly after that, feeling that all would be well after all.

Mom calmed down pretty quickly after that first night. Before long, she was saying things like, “You know, when I found this place…”! A former stewardess, Mom was very congenial and loved the opportunity to talk and visit with different people. She took advantage of art classes and other activities. She thrived! She was doing so well, she actually moved out of Assisted Living and into Independent Living. But after about 2 years, it became clear that a move to Memory Care was in order.

Move-in to Memory Care day for Mom was set for March 15th of this year…pandemic and all. The family again (wisely) decided to let the move be a surprise to Mom. Stephanie’s younger brother, Chris, kept Mom busy with her new grandson in the morning while Stephanie and her other brother and sister-in-law moved Mom’s belongings into the Willows Memory Care. Just as Chris was walking Mom down the hall and into the Willows, Mom told Chris she needed to use the restroom. So, Chris led her straight to her new door and said, “Mom, this is your new room.” Mom was (understandably) initially upset. Her family was of course upset that she was upset, but they also knew that this was the right thing, and they had faith that it would work out.

In fact, it didn’t take long for Mom to settle into the Willows. A friend of Mom’s also moved into Memory Care at around the same time, which was helpful. “Mom never ONCE asked me about her old apartment after this move,” says Stephanie. “In Memory Care, there is more of an established routine which Mom took to pretty quickly.” At first, given COVID-19, in-person visits were out of the question, but window visits were possible and became the new normal, for a while. Now, Stephanie is an official “essential caregiver” for her mom and can visit up to 3 hours per day if she chooses to.

Stephanie says that her mom has adjusted extremely well by this point. “The restrictions imposed by the pandemic may actually been helpful for her adjustment at first.” These days, Mom is calm, and Stephanie says she just hasn’t seen the “buckiness”, the resistance, anxiety and intense anger (veins popping out the side of her neck), that Mom used to sometimes show.

For herself, Stephanie has learned more about how to communicate effectively with her mom since she’s moved to Memory Care. Stephanie admits she used to be more prone to quizzing or correcting her mom, in an effort to get her to identify people in photographs, for example, but thanks to family educational offerings at The Fountains, she’s learned to interact more gently, to make things easier, to smooth the way for her mom by providing ideas or solutions, as opposed to pressing her with potentially anxiety-producing questions. Stephanie loves being a care partner for her mom, washing Mom’s hair regularly and giving her a “beauty salon day” from time to time. She loves how friendly and kind the staff are at The Fountains at Hosanna. She is blown away by how upbeat, positive and patient the Activities professionals have been. She loves that church services are pumped into her mom’s room from Hosanna, the adjoining church. Most of all, Stephanie loves seeing how happy and confident her mom has become since her move to the Willows Memory Care Community at the Fountains.

Stephanie’s advice for any of you out there who may be contemplating a move to Memory Care for a loved one: “The worse the person’s situation gets, the harder the adjustment will be for the person. The hardest part is simply STARTING the process.” Wise words indeed.
I think there are many wonderful lessons to be found in Stephanie’s story. One thing that struck me immediately was how aligned, how supportive she and her two brothers were of one another along the way. They were all convinced that each move was the right thing to do. This doesn’t always happen with families. It is so very helpful to all concerned when it does, most especially for that who is living with dementia and is needing a more supportive environment.
​
Thank you, Stephanie, for sharing your insights!
FYI: The Alzheimer’s Association offers many resources, including counseling for family members who may need support getting on the same page, when figuring out what is next for a family member.
Alzheimer's Association, 7900 W 78th St Ste 100, Minneapolis, MN 55439 https://www.alz.org/mnnd
Phone: (952) 830-0512 Helpline (24/7): 1.800.272.3900


- Marysue Moses, mmoses1@fairview.org

In this time of COVID, a person with dementia will likely have greater needs for attention and engagement. Confusion may be amplified. Trauma, stresses and upsets might be even more stressful and upsetting, not only for the person with dementia, but for those of us who care for them.

It may be tempting to let go a bit of all we know about quality dementia care in the face of COVID, as there is a lot we must pay attention to simply to stay safe. However, I believe that excellent, compassionate, creative care is more important now than ever before, and still possible, even in the face of the pandemic.

The more compassionate the care we offer, the more dementia doesn’t matter. The more engagement we provide, the more dementia doesn’t matter. The more creativity we bring to persons living with dementia, the more dementia doesn’t matter. The more dementia doesn’t matter for people who experience it, the easier it is for us to care for them. How does that sound?

Through the magic of ZOOM, I have had recently had the opportunity to gain inspiration from three experts:

1. ON COMPASSION: In a recent webinar, Chaplain Chris Beckman, Ebenezer’s Corporate Director of Spiritual Health, spoke about responding to a person who has experienced trauma. He emphasized the importance of not trying to take away someone’s pain but rather to give it space, acknowledge it, let be there and experienced. I imagine that the experience of having a brain that is not working properly is traumatic at times. Having a brain that is not working properly and seeing people in masks all the time, and/or not being able to see or hug people as usual, and/or not being able to even walk around as much as usual might be traumatic indeed. When we acknowledge the feelings of a person with dementia, we provide validation, a sense that they are okay with us and that we understand why they might feel that way, (even if we would prefer that they felt another way). One can always validate a feeling by responding calmly with empathy and compassion. Yes, you are angry. I can see that…Of course you’re upset. I would be too…What a great smile you’ve got right now! (We must not forget to validate the happier moments too!). People living with dementia thrive when we give them what Anne Basting calls “proof of listening”. They need to KNOW they are HEARD. SEEN. LISTENED TO. This is precisely what a good therapist or chaplain or friend will do for us. People with dementia are ordinary human beings who, as a result of their dementia, often have even more pressing needs than the rest of us for feeling valued, understood, and engaged in a deep way with those around them.


2. ON CREATIVITY: As part of Anne Basting’s Creative Care Institute this summer, movement artist Gabri Christa demonstrated how she regularly engages via Zoom with her 90-some year-old mother who is living with dementia, far away in another country. Their interactions are largely nonverbal. The first thing Gabri does before making the call is to center herself and to stretch a bit. She then reminds herself of her intention, which is to make her mom laugh, because well, her mom really loves to laugh. To demonstrate how a session might go with her mom, Gabri pretended that we (on the other side of her screen) were her mother. To begin the session, she waved and gave her mom a kiss by bringing her lips right up to the screen! Wow, those lips were big up close! She announced, “I’m drinking coffee!” raising her mug towards the screen with a hearty “Cheers!”and clinking her mug with the screen. Her mom loves to drink coffee too. Because her mother likes lipstick, they usually show each other their lipstick and put on lipstick together. They comb their hair simultaneously too. They often sing. Gabri also danced, moving her body so that her head appeared on the screen from the bottom, then from one side, then the other. Comically, she pretended to fall and at one point all you saw of her were her feet on the screen! It was all simple, charming and delightfully engaging. She and her mom often make up stories using simple homemade finger puppets. (These also get impressively big when moved close to the screen.) If you have a marker, you can easily draw eyes and nose and a mouth on the tip of a finger and presto, you have a finger puppet! It was a revelation to see how meaningful Zoom communication could be, with very few words.
Engagement is essential to building relationship. The connection between Gabri Crista and her mom is full of love, joy, play and presence. Having fun is an enormous part of being human. Are we finding enough fun to share with our loved ones, even when they have dementia? For you and the person you care for, the answer may not lie in finger puppets and lipstick, but the point is to think about what does bring your loved one joy, and to find ways to deliver that, whether you are connecting in person or via Zoom!


3. ON ENGAGEMENT: In Anne Basting’s exciting new book, Creative Care, she supplies lots of ideas for meaningfully engaging people with dementia. One way is by posing “beautiful questions”, questions that you can’t answer with a yes or a no, but which open the mind and invite imagination. There is NO WRONG ANSWER to a beautiful question. Think how many questions we ask each other each day that are perhaps not exactly described as “beautiful” :
· Are you ready to get up?
· Do you want eggs or cereal?
· Shall we sit here or go outside?
Of course, these kinds of questions have their place. They are handy when trying to encourage someone to do something, and they can make choices less overwhelming. But notice there are only two answers to each question: this or that, yes or no.
Anne suggests that, for example, you simply take the opportunity to look out a window together and ask the person you care for the following questions, listening deeply to the answers:
· What do you see?
· What you hear?
· What do you feel?
· What do you think that tree is thinking?
This conversation might well turn into a moment with deep meaning for you both. You might try writing down the responses you get and build more beautiful questions from those.

Please keep in mind the importance of engaging with meaning, with fun, with joy, and with empathy and compassion as we continue to deal with dementia in the time of COVID, and to see if we can make it more and more like dementia doesn’t matter!
Be well!

Thanks to Chris Beckman, Gabri Christa and Anne Basting for the sensitivity and insight that inspired this blog entry.


--Marysue Moses, Dimensions® Program Coordinator, mmoses1@fairview.org

I attended a Gerontology conference years ago where dementia specialist/author David Troxel was one of the keynote speakers. I was thrilled to hear him. I had lapped up the books he co-wrote with Virginia Bell on the Best Friends™ Approach to dementia care. His keynote started off describing an activity he had done earlier in his career in an Adult Day setting with a group of persons with dementia. A large poster of the Mona Lisa was put up in front of the group. Conversation ensued about Leonardo da Vinci, Italy, Italian food, and…what was Mona Lisa smiling about, anyway? At the time I heard this story, I was actively coordinating activities for a memory care community and doing my best to offer things a bit out of the ordinary. I couldn’t wait to replicate the Mona Lisa activity. One of my dementia community members just happened to have a good-sized throw blanket with the Mona Lisa printed on it, and she was more than happy to lend it to me for the cause. I brought some fabric and scarves along to drape on participants who were willing to be festooned in a way that suggested the famous lady’s costume and pose, and we had fun seeing who could best channel her mood. We had a fabulous time, laughed a good deal, and I got some grand photos for the community scrapbook of various ladies imitating the legendary Mona Lisa smile. Of course, we started off the activity listening to the dulcet tones of Nat King Cole singing “Mona Lisa”!

All this is to say that opportunities for engagement are everywhere if you just look around, and sometimes the “props” required for an engaging activity are not too hard to find. Now you might not have a blanket with the Mona Lisa lying around YOUR house, but if you have a computer or know someone with one, a photo of the Mona Lisa could easily be printed out! And I bet you could find a scarf or two, and maybe a map of Italy!

In this time of COVID, I imagine some of you out there may feel starved for ideas to keep your loved ones who are living with dementia involved, alert, and active, whether you live and care for them full-time, or go to visit them in a senior community. Here are some simple ideas (many taken from the work of David Troxel and Virginia Bell) for ways to engage folks with dementia, even if it is only for 30 seconds.

1. Remember to make eye contact and smile. Should you need to wear a mask, smile anyway! Your body language and your eyes communicate volumes. When I visit various Ebenezer sites during this time of COVID, I like to keep a large picture of myself WITHOUT a mask hanging around my neck, to remind people of my full face! That might well be reassuring for the person with dementia whom you care for, or need to visit elsewhere, with a mask on.
2. Tell someone he or she is loved. This can be such a comfort. Can your family member or friend ever hear this too much?
3. Give a sincere compliment. Tell the person what you have learned from them. Remind them of the best advice they have given you and what they have brought to your life. They may appreciate being reminded of the influence they have had on your life.
4. Ask the person’s opinion. This conversation starter could be something as simple as, “Do you like oranges or apples better”? Or, something a little more abstract, like…“Does life remind you of a river, or is it more like a mountain?”
5. Stimulate creativity. Maybe you’ve got an old greeting card around with an interesting or humorous photo on it, a photo that might inspire a story. You could invite your loved one to help you make up a story about that image. What shall we name that guy?...Where shall we say this happens?... What is he going to do next?...Ask more questions, write it all down, and read the story back. Anne Basting’s wonderful new book Creative Care will give you instruction on how to do this, and many other ways to engage persons with dementia. This book is very easy to read and thoroughly inspiring! https://www.anne-basting.com/creative-care
6. Reminisce. Remind the person of past accomplishments, proud moments, funny or meaningful events. Ask the person to “tell you more” about each one!
7. Keep moving. Get outdoors if you can. Sunlight combats depression. People seem to feel more relaxed in fresh air. Indoors, even if you are both sitting in chairs, you could ask the person to mimic your dance moves to some favorite music. Exercise is the single best thing you can do for your brain!
8. Ask the person to help you with something. Maybe you want to make an apple pie just the way your Grandma did. Maybe Mom can help you reconstruct that recipe, and you can write it down just the way she says it, asking her questions (and reminiscing) along the way. We all need to feel needed. Be sure to thank Mom for this help!
9.  Recite a favorite poem, the words to a song, the pledge of allegiance, or a couple lines of Shakespeare. Everybody has memorized something from long ago. See how many things you both have memorized, and may still remember!
10. Use the computer to visit some museums virtually. There are lots of places to see! https://www.top10.com/virtual-museum-tours#:~:text=Top%2010%20Virtual%20Museum%20Tours%201%20British%20MuseumAn,History%20Museum%20and%20others%2C%20...%20More%20items...%20

You might even be able to see the Mona Lisa! Last I checked, she was still at the Louvre in Paris! That’s #4 on the list provided by that link!
Take care, be well, stay safe. -
Marysue Moses,
Ebenezer Dimensions Program Coordinator,
mmoses1@fairview.org
Thanks to David Troxel and Virginia Bell, https://blog.healthpropress.com/2020/05/30-dementia-care-activities-during-covid-19/, Teepa Snow, and Anne Basting for supplying some of the ideas described here.

This blog is my summary of information and insights shared by Dr. Ken Hepburn of Emory University. He spoke on April 17, 2020 at the dementia-focused COVID-19 webinar facilitated by Dr. Joe Gaugler, University of MN.

This is an intense time. Both you and the person you are caring for will feel the pressure of isolation. Keep in mind that the person senses your feelings. The care environment may feel super-charged.

Care partners might want to keep Ginger Rogers in mind. She famously remarked that she did everything Fred Astaire did, only “backwards and in high heels”. Your job as the care partner of a person with dementia is similar. A challenging dance to be sure! Going with the flow of your partner, all the while making things as safe, calm and pleasant for them as possible is the goal.
As far as SAFETY goes, be vigilant.

• Sanitize regularly.
• Scan your environment for anything (rugs, cords) that might cause a fall. The last thing you or the person you care for might need at this time would be a trip to the emergency room. Enhance lighting and utilize nightlights as needed.
• Think through entry strategies, i.e. what is the sanitizing routine that you follow when you have been out of the home? (Wash or otherwise sanitize hands.) How about when you receive deliveries? (Wipe packaging, and discard after opening.) How about your food? (Be sure to wash all fruits and vegetables.)
• Take advantage of opportunities for telemedicine if you have questions or issues.
• As far as your RELATIONSHIP with the person you are caring for, keep in mind that dementia does interfere with a person’s ability to connect with oneself as well as others.
• Remember you have influence. You are the designer, the architect and the general contractor of this person’s care. The person will be your guide.
• Be guided by the person’s likes and dislikes, their strengths, their long-term memory, their interests and accomplishments. Let them help you in whatever way is possible.
• You may need to develop some scripts that will need to be repeated, without over-explaining things. “These days, it’s just not safe.” Keep things simple and maintain a positive attitude.

TAKE CARE OF YOURSELF. Yes, this is very hard, even though it is critical for the well-being of your loved one for you to do this.

• You are entitled to a DELIBERATE plan for your own well-being.
• PLAN to connect socially somehow (telephone, virtually, etc.)
• Continue to PAY ATTENTION to your own personal, physical, emotional, intellectual, artistic and spiritual needs. Seek advice from a trusted friend, family member or professional if you are not sure where to begin.
• BE PREPARED. The following additions to your personal self-care plan will go far to quell worries and “what ifs…?”. They may buy you some much needed sleep!

Have a back-up plan if YOU should happen to become ill. Who would step in to care for your loved one?

• Have a bag packed and ready to go with a few comfort items and favorite things that your loved one would appreciate.
• Make sure your legal documents are up to date with provision for a transfer of surrogate powers to someone else, should you become unable to continue to serve as the decision maker for your loved one.
• If you happen to be a support person of a care partner of a person with dementia, a way you can support this caregiver who needs respite is to search the internet for things that the person with dementia might enjoy experiencing. (Music, theater, museum tours and zoo programs abound.)

Thanks to Dr. Hepburn for his compassionate wisdom, and all the best to you and those you care for.
--Marysue Moses, Ebenezer Dimensions Program Coordinator

We are living in a strange and stressful time. As I write this, there are signs in MN that we are absolutely doing the right thing by social distancing. There is hope that we have already positively impacted our ability to cope with cases and minimize the number of deaths from COVID-19.  But how in the world are we supposed to explain this situation, “sheltering in place”, visiting restrictions, and the proliferation of masks and gloves to loved ones experiencing cognitive changes, many of whom cannot hang onto new information for very long?

The good news is that we do NOT have to explain ALL of it. In fact, please don’t try!  Here are some guidelines for communication that can help satisfy, soothe and make sense to a person living with dementia.

One size doesn’t fit all. You need to consider where YOUR loved one is at, cognitively and emotionally.  Talk to them about the pandemic in a way they can understand. Generally, this will mean:

• Keep it simple.  Don’t over explain, use too many words, or give a lot of detail.
• Avoid frightening statistics or dire predictions. These can unnecessarily raise anxiety which lasts long after the statistics are forgotten. 
• Stay calm. Don’t transfer your own anxiety into your loved one.  Persons with dementia are very sensitive to the moods and emotions of others.
• Do not argue.  Simply reflect back the person’s concern or emotion.
• Keep your tone matter of fact and as light as possible.
• Put this situation in a context that the person can understand. For some, you can draw upon their long-term memories of growing up during World War II, or hearing stories their parents told about it.
• Focus on positives. Talk about meaningful things in your life that are happening or inspiring things you’ve heard about.
• Reassure.
• After reflecting back and reassuring, distract with activity. Ask for the person’s help with something. Do something fun over the phone with the person.
• Find something to thank the person for.
• Tell them what they mean to you, i.e. name something that you get from them.
• Don’t make promises you can’t keep about when you will visit next. 

Below, you’ll find examples of how these techniques might be utilized over the phone.  Highlighted words are things your loved one might say.  Possible response is bolded.

• Why can’t you come visit? Oh, you’ve been expecting me! I’m so sorry.(Reflecting back the person’s concern)

• There’s a nasty bug going around and they’re trying to keep us all safe. (Keeping it simple and matter of fact)
• You don’t care about me at all! You’re feeling like I just don’t care.  I can sure see why you feel that way. I’m so sorry. (Staying calm.  Reflecting back their emotion. Not arguing)
• This is just terrible. Yes, it’s tough for a lot of people.  The good news is that hospitals and government agencies are working hard to get us all through this.(Reflecting back their concern, then focusing on the positives. Cite positive examples of how humanity is coming together.  See the Good News Network website if you need inspiration)
• We will be safer if we both stay put.  This won’t go on forever. (Reassuring, keeping it light) 
• Mom, you‘ve told me stories of how your Mom and Dad got through World War II, with shortages and rationing. Our country is pulling together in a similar way. We will get through it. (Putting the situation in a context the person can relate to, and reassuring.    
• Thanks for chatting, Mom. It’s so good to hear your voice!  I always feel better after I talk to you. (Thanking the person, letting them know what you get from them) I love you. (Reassuring) 
• Mom, would you do me a favor?  You know that chicken soup with vegetables you used to make?  It had a whole bunch of vegetables in it.  I want to make that.  Can you maybe tell me all vegetables I should put in that soup? I’ll make a list. (Distracting with activity, asking for the person’s help, doing something fun over the phone)
• Dad, I was thinking today of that song you like to sing, what is it, something about sunshine? ...You are my Sunshine, that’s it!  How about we sing it to each other over the phone. You can help me if I forget any words. (Distracting, asking for the person’s help, doing something fun over the phone)
• When will you come visit me? I will try my best to come as soon as I can. (Reassuring. Not promising a specific date)
• In the meantime, how about we plan to talk again tomorrow morning? (Making a promise you CAN keep) I’m going to write that down in my calendar so I don’t forget. (Reassuring)   

Keep in mind, one of the best things you can do for your family member right now is to take care of yourself! Pay attention to your own level of stress, be kind to yourself. Stay off social media and the news if it makes you more anxious. Be sure to make some room for relaxation.  Take care, be safe.

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.  
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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.
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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  

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