Dementia Care Blog

I had the honor of attending the Dementia Action Alliance Conference in Indianapolis last month.  This was the 3^rd conference the organization has held.  I have not missed one yet.  The conference was attended by professionals in the field of dementia, persons who are living with dementia and care partners of persons living with dementia.  Some of the people who appeared on the conference stage were professionals, some were persons living with dementia and some were care partners.  The people who were living with dementia on that stage have mastered LIVING WELL with dementia. I find it so inspiring and hopeful to see that possibility in action, over and over again.

Some takeaways from the conference follow.  I hope they might be helpful, whether you are the care partner of a person living with dementia or simply a person who may be worried about developing dementia yourself:

The first speaker, Jacqueline Pogue, whose husband lived with dementia, spoke of the fact that “It’s not the brain that we need to be fully human.  It’s the soul and the spirit beyond our brain.  The person’s essential  humanity is still there.”

One of the main messages of the conference was that PERSONS LIVING WITH DEMENTIA HAVE THE RIGHT TO HAVE HOPE.  Unfortunately, physicians sometimes do not understand the impact of their word upon diagnosis of dementia, i.e., “go home, get your affairs in order, come back in 6 months”, which apparently still happens all too often.   

There are many different causes of Alzheimer’s disease and there are strategies and interventions that can really help prevent and or manage that disease, as well as other forms of dementia, especially when started early. There are even some reports out there of people being able to reverse some symptoms.  (See Dr. Dale E. Bredesen’s book, The End of Alzheimer’s.)  

LIFESTYLE MATTERS.  Doctors should be recommending the things that can make a difference for people.

EXERCISE is the single best thing we can do for our brains.  We need to get our hearts pumping, and you don’t need to join a gym to do  it.  Brisk walking for 30 minutes is an excellent idea, as is using a stationary bike.  Talk to your doctor if you are not sure what the safe options might be for you or your loved one.  Vigorous chair exercises are possible too!        

CHANGING EATING HABITS, for example, can have a big impact.  Our guts manufacture chemicals which if we eat the right things, can allow the brain to resist disease.  Eating well  on a plant-centered, organic  diet is recommended. Drinking plenty of water is important, reducing sugar, making sure our diet includes good fats with Omega 3’s that come with nuts, seeds, and certain fish.  Alcohol is not the best idea – it turns into sugar in the body and that can work on the body like a poison. 

Stress is major cause of inflammation in the body.  If we reduce our stress, we have a better chance of preventing and/or managing dementia.  Making sure that  people who are living with mild cognitive impairment or dementia have ACCESS TO THEIR OWN MUSIC is a great idea.  No matter where a person is in the progression of dementia, 30 minutes of listening to their music, perhaps with headphones, is highly recommended for joy and relaxation.

MAINTAINING A SENSE OF PURPOSE, MEANING AND ENGAGEMENT is critical. People need to stay involved in tasks they love and in caring for others.  People need THE OPPORTUNITY TO MAKE A DIFFERENCE in the lives of others.  Many who present at the Dementia Action Alliance conference and have been living for years with dementia travel a lot to spread these messages to various organizations and conferences.  These people are making a true difference, fueled by the passion to defend their right to hope and to live well, in spite of the diagnosis and the inconveniences of their situation.  They learn to focus on what they still CAN do, to take things in stride, to laugh, and to accept whatever disabilities come with the diagnosis. They move forward and live fully.

GETTING 7-8 HOURS OF SLEEP is a need for preventing and managing dementia.  Sleep is “Mental Floss” for the brain, as one of the presenters said.  Don’t drink coffee after noon if you want to increase your chances of getting good sleep.

LEARNING NEW THINGS is also an important prevention/management strategy. Complexity grows the brain!  NEW INTERESTS  can be developed.  CREATIVE PURSUITS can be adapted. 

STAYING SOCIALLY ENGAGED is also a strategy for managing and preventing dementia.  We need to interact, to be social with others, for both our mental health and our brain health.

HUMOR is healing.  Whatever you can do that will bring more humor into your life and the life of a person living with dementia is a very good idea.

Here’s some more advice, direct from some of the people who are living well with dementia to those anyone out there who is currently living with dementia or who might wonder and worry if that is in their future:

• “It’s the end of a chapter, not the end of your life.  Don’t put the book away.”   
• “Adapt to what you CAN still do.”
• “What helps? Diet, exercise, learning, staying positive. My granddaughters accepted me, I learned to be creative in other ways.”
• “I felt some relief with the diagnosis – there was a REASON I didn’t have recall.  Another side of me flourished, I started doing photography and taking part in art shows.”
• “Be aware, there is opposition to living well with this disease.”
• “I had to become my own advocate.  Go live life until you have more symptoms.  Advocate. Don’t be afraid to fire your docs! Speak up!
• “Push for the care that fits for you.”
• “Be solution-focused. Think not about “problems” but about challenges.

Author and Academic Stephen Post lead the final conference session.  He stressed that the “continuity of self” includes “smell, taste, mirth, emotions, intelligence, symbolic meaning, music, rhythm, creativity, beauty and spirituality.” 

That, in my opinion, is a lot to work with in order to maintain a decent if not wonderful life!

Please check out the Dementia Action Alliance website for lots of helpful resources:

https://daanow.org

p.s. This is my last blog, as I will soon be retiring from my full-time role as Ebenezer’s Dimensions Program Coordinator very soon.  I’m also turning 70.  I will remain on as a “casual” Dementia Educator.  Thanks to all who are reading this!  It’s been a pleasure to be in this role, and to have the opportunity to write a blog about dementia care and the experiences and the people who have inspired me most in this arena.  Rest assured I do not plan to put away my passion for excellence in dementia care, ever!  All the best!

--Marysue Moses, Ebenezer Dimensions Program Coordinator, 10/24/2022  

Have you ever had an interaction with a person living with dementia with whom you live or otherwise provide care for that didn’t go precisely as you wanted it to go? Maybe we have a full agenda of personal care tasks we need to get done with them, and the person resists our care. Maybe the person is frustrated and angry and we’re trying our best to calm them down, but what worked yesterday isn’t working today for some reason, and now this person who we care for like they might just lash out at us physically at any moment?

So often care partners get immediately into “fix-it” mode. We want the “problem” in front of us to go away, so we may rush through a task to get it over with, and the person we are working with may end up feeling upset, unheard and unseen. We, their care partner, may feel sorely unappreciated, at at our wit’s end. We’re working so hard, after all, and this ain’t easy! It’s a lonely feeling, to be sure.

When we see a problem going on “over there” with a person who is living with dementia, what to do?

If you have a person living with dementia in your life, you may have already experienced many complicated and/or challenging situations. Dementia trainer and practitioner Teepa Snow advises us to turn the mirror on ourselves in these circumstances in order to realize that WE may need to do things DIFFERENTLY in order to make a positive change for that person in front of us.

Please don’t confuse “doing things differently” with “FIXING IT” right away. Teepa points out that we may well need to take a step back and PAUSE, in order to figure out our next move. We may need to QUIT approaching the person for a few moments (or more). The person might need a little space from us if they are upset. WE might need a little space for OURSELVES to think through what is going on for the individual and to figure out how we might truly help them.

We need to be CURIOUS in these moments. We need to look at the situation from more than our own point of view. We must consider the perspective of the person who is living with dementia.

If our verbal directions are not being followed, we must accept that for some reason our directions ARE NOT WORKING. Perhaps we are talking too fast, or too softly. Maybe we are using too many words for this person. Maybe we didn’t take enough time, or ANY time, to CONNECT first before our task, before pushing our agenda on them. Keep in mind that that a person living with dementia has an agenda too. If we can stop, think, and observe the person, we may gain valuable insight that will actually benefit THEIR agenda as well as ours.

Teepa suggests that as we pause and take a step back, we take the opportunity to just BREATHE. Go ahead, try that now. Suck in a big breath of air, then blow it out as far as you can…Breathing in this way can actually help your brain become more flexible. It can get you OUT of that panicky adrenalin-fueled mode which often takes over when you are not sure what to do in a challenging situation.

What if, on your exhale, you said the word “WOW!” like this: (Just say this word to yourself now, on an exhale, drawing out the vowel sound), “WOOOOOOW!”. Think about saying it as though you are discovering something…Maybe like you are discovering and understanding that the person over there has a perspective that DOESN’T quite match YOUR agenda. Big inhale….and again say “WOOOOOOW!”

Teepa also suggests that we watch our body language. Turn sideways in relation to the person you are caring for, if you haven’t already done so, so that you’re not facing the person head on in a confrontive stance. This will make it clear that that you are giving the person some space. An added benefit is that you are giving YOURSELF some space by turning sideways, space in which you can more easily come up with an APOLOGY. Perhaps you’ll say…(Feel free to try the following apologies on for size.)

“I’m sorry.”

“I can see I upset you.”

“I’m sorry. I was trying to help.”

“It didn’t work.”

“I made a mistake.”

Then, you might offer a hand to see if you are allowed back into the person’s space. If the person refuses your hand, you might want to come back to whatever the task was a bit later. But if they accept your hand, great! You might say, “Tell me more about how I upset you.” Let the person express their feelings and be sure to VALIDATE whatever you hear. Use some of the SAME words that the person uses to reflect back what you understand. If the person says, “You move too fast.” You might respond with:

“I get it. I was moving too fast for you.”

“You’d like me to slow down.”

If the person tells you, “I was frustrated and you didn’t seem to care”, how might you respond to that? Here’s one idea:

“Yes, you were frustrated. You felt like I didn’t care about your feelings.”

What might you say next?... How about…

“Thank you for helping me learn what works for you. I want to do better, and I will slow down.”

We sure don’t have to be perfect in dementia care, but if we can learn to go with the person’s flow, and own it when our approach isn’t working, we will more quickly learn from that person in front of us what might work better to fill their need and get done whatever needs to be done.

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The info in this blog entry came from a live webinar given by Teepa Snow, Positive Approach to Care, sponsored by Agrace, July 26, 2022. If you are not familiar with Teepa, check out the many helpful resources on her website – www.teepasnow.com

--Marysue Moses, Ebenezer Dimensions Program Coordinator

After working in the realm of dementia care for nearly 20 years, I find I am still reminded of the power of the words we select to talk about dementia. If YOU were living with dementia, would you rather be referred to as “a person with dementia” or as “a person living with dementia”?

Personally, I happily make those extra keystrokes (and/or use my breath) to employ that word, “living” as often as possible, in this context. Dementia shouldn’t define a person, nor should any disability. Was Stephen Hawking defined by ALS, the disease he lived with? (Amyotrophic lateral sclerosis is a frontotemporal disorder and can include symptoms of dementia along with motor neuron disease.) NO, he was not! Mr. Hawking’s enduring legacy of brilliance, passionate inquiry and wry humor burns much brighter than the name or classification of the disease with which he LIVED for many years. Did metastatic melanoma define my late husband, a comic genius and consummate actor, in those last 2 years of life in which he lived with cancer? Certainly not! (And trust me, I’m not the only one who would say that!)

The point is, we DO keep LIVING, as long as we do, in spite of whatever is going on in our bodies and/or our brains. Quality of life, however, can become a big issue if others give up on us and/or if we give up on ourselves. Whatever our diagnosis, we are still who we are. We still have spirit, we still have heart, we have the ability and the need to care and to love, to be in relationship with others. We still have our quirks and passions (even if they may not be obvious to those who only see the losses associated with dementia) that make us who we are.

I learned recently from Megan Carnarius* (a dementia specialist, trainer, and author whose vast experience inspires complete trust) that just because a person with advanced Alzheimer’s disease doesn’t seem to recognize you, it doesn’t necessarily mean that they don’t. It might seem that way, as a result of the person simply losing the ability to express that recognition. Their brain may actually be trying really hard to set in motion squeezing your hand or smiling back at you, but due to the disease at work, the neurons are not cooperating. They simply can’t make the requisite connection to effectively cue the squeeze or make that smile happen.

To many people, a diagnosis of dementia feels like a death sentence, a tragedy, the beginning of an inevitable downslide into oblivion. Unfortunately, some physicians encourage this perspective by telling people to “Go home and get your affairs in order” or (to the husband of the wife just diagnosed) “Come back when she can’t feed herself”. (Those are direct quotes from people who have been LIVING WELL with dementia for years, and who obviously rose above this dismal brand of so-called “advice.”) I’m hoping those sorts of instructions aren’t as prevalent as they used to be, but I fear there may still be not yet well-educated-on-this-topic doctors out there who add to a person’s initial trauma of receiving a diagnosis with this brand of callousness.

Sure, a person may well have normal human reactions of Grief, Denial, Bargaining and Depression to deal with no matter how compassionately their diagnosis of dementia is delivered. But in order to pave the way for Acceptance, what if physicians made it a best practice to remind patients that people maintain their personhood and individuality all through life, including when they are living with dementia.* Continuing to live a life of purpose and meaning is what needs to be encouraged, and resources to support this direction should be shared like lollipops.

People may need to be reminded at this early time that it’s the perfect time for them to take stock, to develop a “roadmap to maintaining well-being”* to guide them on this journey. The Dementia Action Alliance (DAA) has created 2 handbooks as part of their “Caring Conversations Tool Kit”, available via their website: www.daanow.org . These handbooks, titled “Living with Dementia/An Unexpected Journey” as well as “Living with Dementia/The Indispensable Handbook for Family and Friends” are terrific tools to help people living with a recent diagnosis and care partners in navigating this new territory. The DAA Tool Kit also contains cards (a few are pictured above) designed to spark meaningful discussion about the person’s priorities and wishes for their life going forward.

Even if you have a loved one who has been living with dementia for some time, these tools might be worth looking at, if only to help adjust one’s perspective concerning what might really be important RIGHT NOW for that person for whom you care. It’s NEVER too late to think about how more joy, purpose and meaning can be found for a person who is living with dementia.

The state of Minnesota now insists (through statutes that came out in August of 2021) that Assisted Livings with designated dementia care communities take a person-centered approach to care needs as well as to engagement needs. Attendance at activities now needs to be documented. Engagement goals must be planned and implemented. These changes hold great potential benefits for people living with dementia in our Ebenezer Memory Care communities. I am excited for the improved quality of life that awaits these individuals after consistent adherence to these requirements over time.

--Marysue Moses, Dimensions Program Coordinator, Ebenezer Management Services

*Thanks to Megan Carnarius, Memory Care Consulting, LLC, www.daanow.org and the pamphlets cited in this blog for inspiring these thoughts on living with dementia.

*See www.daanow.org for more information, blogs and videos by persons living with dementia, as well as information about how to get the Caring Conversations Toolkit mentioned above. There will be a Dementia Action Alliance Conference in September, in Indianapolis. I highly recommend getting your head turned inside out about dementia, as I first did in 2018!

As bathing or showering sometimes becomes problematic as dementia progresses, it is a really good idea for care partners to learn about alternative bathing techniques. Did you know that there is no law that says we have to get someone into a bathtub or a shower in order to get them clean? It’s true!

If you do not have a good trusting relationship with the person who you are trying to help bathe or shower, it will be doubly difficult to assist them. I mean, how many people in the world right now do YOU trust with your naked body? That’s a pretty big deal. And once people are living with dementia, or simply have reached a certain age, it might feel downright embarrassing to mother to consider being bathed by their daughter, someone THEY used to bathe! Or for a man to accept shower assistance from his son or daughter, or his younger sister. Sometimes it can work out just fine, but other times, bathing becomes a struggle and a seemingly insurmountable challenge.

The following descriptions of alternative bathing techniques are taken directly from the website “Bathing without a Battle”: https://bathingwithoutabattle.unc.edu/bathing-techniques

1. THE TOWEL BATH: This is a variation on a typical “bed bath”, which you may have heard of. Bed baths are a good choice for persons who are frail, non-ambulatory, considerably overweight, or who experience pain on transfer. It is possible to wash people adequately in the bed and it is often much less stressful. It is usually done with a basin of water, soap, washcloths, and rinsing off the soap.

A variation on this method is the TOWEL BATH. Here, a person is covered with a large, warm, moist towel containing a no-rinse soap solution, and is washed and massaged through the towel.

(The website mentioned will give you more details on the equipment needed, how to prepare the person, how to prepare the “bath” in a big plastic bag, and will lead you through the TOWEL BATH process, step by step. It is a bit futzy, I must say - having a team of two trusted people to help with the process would be ideal, I think.)

2. THE RECLINER BATH

Some home health aides have reported giving very successful baths while the person is resting in the recliner chair. This works particularly well for persons who are extremely fatigued by chronic or terminal illnesses.

Equipment Needed:

• Basin of water, preferably with a no-rinse soap

• Towels

• Incontinence pads

Pad each body part being washed with a towel and incontinence pad if available. Proceed with uncovering and washing body parts one at a time.

3. THE TOILET OR COMMODE BATH: This method was useful for an easily agitated nursing home resident. Mrs. Harrington greatly disliked being moved or touched and fought through attempts to carefully shower her or bathe her in bed. She was often incontinent of stool during her AM shower or bath. So, the caregiver, Marie, first placed her on the toilet, allowed her private time to have a bowel movement, then washed and dressed her upper torso while she sat there. Marie then washed her legs, and lastly had her stand with assistance and washed her peri area and bottom just prior to transferring her to her wheelchair, ready for the day. Her thin hair was washed at the bathroom sink using wet washcloths to wet and rinse her hair.

4. THE SINGING BATH: For another most complex person, we did the singing, sitting, in- room bath. Miss Florence was infamous for refusing her shower and for fighting when she was forced to shower. Estelle, the nursing assistant who worked with her, discovered that she liked to sing, and her favorite tunes were “Jesus Loves Me” and “ Happy Birthday”. If Estelle waited until she felt Miss Florence was in a good mood, sang with her, did part of bath while she was lying in bed and part as she began to get up out of bed (following Miss Florence’s lead), she was able to wash her entire body. Her hair was done using an in-bed basin on another day. Interestingly, the family reported that Miss Florence had been refusing to get in the shower or tub for ten years prior to coming into the care facility.

5. THE SEVEN DAY BATH: A family reported good luck in keeping their father, Mr. Simmons, clean by dividing the body into seven parts and washing one each day. He disliked bathing or washing but could tolerate short episodes better than longer, more overwhelming ones.

6. THE UNDER-THE-CLOTHES BATH: Grace disliked the shower or tub but did well when encouraged verbally and physically to wash herself in her room. One day her caregiver, Margaret, arrived to find that Grace had been up all night, which was unusual because she preferred to stay in bed most of the morning. She had had a rough, agitated night and her body odor smelled of perspiration and urination. A urinary tract infection was suspected and later confirmed and treated. It was the usual day for Grace to get her in-bed bath. Margaret considered just postponing it but thought she would try to freshen her up and help her feel better. She washed what she could while Grace was sitting in the wheelchair, gently talking to her about her favorite subjects. She continued this approach and asked permission to reach into Grace’s dress to wash her underarms and breast areas and then the genital area. When Grace refused or started to become angry or upset, she stopped. It wasn’t a complete bath, but the priority areas were cleaned, and Margaret avoided a big battle at a time when Grace would be easily distressed.

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Here’s hoping these examples will encourage you not to despair, and to try something differently to ultimately make life easier both for yourself and for the person you care for.

Many thanks to https://bathingwithoutabattle.unc.edu/bathing-techniques for these ideas, and all the research that went into them.

---Marysue Moses, Ebenezer Dimensions Program Coordinator

Seven years ago, this maple tree in my back yard became ill. My tree guy said he thought it probably wouldn’t survive the fungus that had invaded. Leaves turned black as though burnt. A sun scar made an unsightly gash in the trunk. In time, the scar healed itself up. While some of the leaves still turn black, overall, the tree seems to have prevailed over the stress.

Has COVID wreaked havoc with YOUR memory? I have had trouble identifying what happened exactly WHEN during the last couple years. For example, what month was it when I watched that webinar I liked so much? This morning, I was looking for a link to that webinar. My brain guessed I had watched it in early fall…maybe? To my chagrin, I learned it was actually viewed in mid-December. Whoa! Apparently, my concept of time has been stretched like silly putty in the midst of this relentless pandemic. Unless…I am developing dementia…

That webinar, which concerns building resilience in times of stress, is what I want to write about here. So, I watched again. I’ll provide the link in case you want to view it yourself. It’s 14 minutes long and was created by the Leading Age organization especially for healthcare professionals working during the pandemic. I would argue that if you’ve been taking care of a person with dementia or you’ve had a loved one living in a dementia care community during this time, you can no doubt relate to issues of stress and burnout.

The webinar outlines three steps to managing stress and building resilience:

• PAUSE. Evaluate where you’ve got stress. How does it manifest?
• FIND TOOLS. Ask: What might I do in this moment to help?
• PRACTICE. Do that thing. NOW.

Building resilience helps us avoid burnout. Let’s unpack those three steps.

• PAUSE. This is described in the webinar as “taking the temperature of your stress”. Asking: How is my stress getting to me right now? Is it a physical feeling – pain or exhaustion? Is it upsetting my emotions – Do I feel fear, panic, sadness? Is my stress expressed cognitively, overwhelming my ability to think straight? (Something I’ve realized about myself is that I think much more clearly in the morning. A task that feels daunting to me in the mid to late afternoon is amazingly easier, and even fun, the next morning. Oh. Maybe coffee is at work there…) Or does stress impact my behavior – am I especially irritable, do I withdraw from others, am I overeating or abusing alcohol in order to cope?

Whatever your answer, even if it’s “all of the above”, which I sure hope it’s not, it’s good to recognize exactly HOW stress is affecting you. You’ll have a better handle on what TOOLS might help you deal with it.

TOOLS:

• It helps to think about things that have helped you in the past, whether it’s exercise, drinking more water, taking a few deep breaths…in through the nose, like you’re smelling a rose…then blowing it out through your mouth, like you’re blowing out a candle. (Try that now if you’ve got 5 or 6 spare seconds. It’s something you can do even while zipping around from task to task. Maybe you could even work in several breaths.) That specific breathing is clinically recommended and recognized as restorative. YOU know the most about what helps YOU cope, so do identify successful strategies that you might have stopped thinking about. It might be reaching out to a particular friend, getting a hug from the person you are caring for (heck, give yourself two or three of those, you deserve them) or taking two minutes to work on a crossword.
• Movement is a great mood changer. Put on some music and dance in your chair. March in place. Listen to classical music and conduct it. (Some of you might incorporate this movement into your daily routine with your loved one. They need exercise too!) Get outside when and if you can. A change of environment is sometimes just the thing for stress.
• Self-talk is a handy tool, and guess what? This webinar assured me that IT DOESN’T MATTER WHETHER OR NOT WE BELIEVE THE SELF-TALK! It actually helps us just to hear it! So, go ahead! Let yourself know: “I’VE GOT THIS!”, “I KNOW I CAN DO IT!”, or whatever script feels right in YOUR head.
• Distraction can be useful too. Look at photos or videos that make you smile, (Babies?...Puppies, anyone?) If you are sorely in need of a laugh, what can you access to supply that?

As you think about what tools work for YOU, just choose whatever in the moment seems easiest and most effective. Just try it. More good news: You don’t have to do it “right” and you don’t have to do it for very long.

When I am overwhelmed, remembering to get through something one step at a time is an effective reminder for me. When I feel lonely, reaching out to people who are in my circle of support is critical. What do YOU do when you need help? Who can you call upon? If no one comes to mind, perhaps you could get more resources in place. There are many Care Partner Support Groups that meet virtually these days. If this interests you, and your loved one lives at an Ebenezer community, ask at the front desk if there is currently an active support group. If you are caring for someone at home, call the Alzheimer’s Association’s Helpline (1.800.272.3900) for a listing of care partner groups that you might be able to join. By the way, you can call that number day or night, if you have caregiving challenges and need input.

TO REVIEW:

• Pause. Evaluate how stress is impacting you.
• Choose a tool. What has worked for me before? Or - what might I try that I haven’t yet tried?
• Practice. Just DO it.

Here is the link to the webinar. Many thanks to Leading Age for creating such a practical, streamlined resource.

https://urlisolation.com/browser?clickId=9E108755-365B-4987-855D-2DE4E5EC6EC6&traceToken=1639497556%3Bfairview_hosted%3Bhttps%3A%2F%2Fr20.rs6.net%2Ftn.jsp%3Ff%3D001&url=https%3A%2F%2Fleadingagemncoaching.com%2F

--Marysue Moses, Ebenezer Dimensions Program Coordinator

Are you feeling wistful these days? Fall has been invigorating, long-lasting and splendidly colorful here in Minnesota, but now, saying goodbye to the leaves and hues and heading into damper, grayer, colder, and inevitably snowy weather does give one pause.

In that pause, I miss my parents, who both died (many years ago now) in the month of October.  I also am thinking a lot about one of my best friends, who is grieving her partner of many years. He recently lost his life to a fast-moving case of Creutzfeldt-Jacob disease, a cruel and devastating neurological Illness. This disease, one of many potential causes of dementia, is so rare that literally one in a million people get it.

In addition, the ongoing pandemic is not particularly cheering up my mood.

In some of our Ebenezer dementia care communities, there are currently multiple people on hospice. There are many individuals whose physical and emotional care needs are increasing.  It seems like a good time to focus in on dementia care in the later stages.

If I was living in a later stage of dementia, and you were caring for me, here’s a few practical tips I would want you to know (the following bullet points contain information found in a wonderful little guidebook by Teepa Snow called  Dementia Caregiver Guide):

• SLOOOOOW DOWN when you are interacting with me. My brain needs more time to process information now. Break tasks into steps. One. Step. At. A. Time.
• I may struggle to understand what’s going on around me. Use MORE GESTURES in your communication to help me out..
• Keep in mind that I AM LOSING FINE MOTOR SKILLS in my hands and fingers, and in my feet and toes too.
• I may have a continued desire for movement BUT LACK THE BALANCE AND COORDINATION to avoid falling. DANCING WITH ME might work better than walking side by side.
• I MAY ALSO BE LOSING FINE MOTOR SKILLS IN MY LIPS, TONGUE AND MOUTH.  I am able to suck a drink and take a bite of something, but please DON’T ASK ME TO DO WELL WITH SOUP THAT HAS CHUNKS IN THE LIQUID, as this could cause me to choke.

Aside from the many physical and cognitive changes that will impact how you care for a person in the later stages of dementia, I think one of the most important things to keep in mind about a person living with late stage dementia is that THE PERSON IS STILL THERE.

I will still NEED CONNECTION, CONVERSATION, ENGAGEMENT, STIMULATION, AND FRESH AIR (oh please, let me feel a bit of breeze, a light rain, and a few snowflakes).

Just because I am speaking less doesn’t mean you have to stop speaking to me.  Go ahead and tell me about your day or the weather. In addition, be sure to compliment me, share an opinion, and talk about something that means a lot to me. Let me know from time to time what I have meant to you. Don’t be afraid to just be quiet with me sometimes. I can become easily overstimulated and will need my “down” time.

Just because I may not initiate touch doesn’t mean I don’t need touch.  Massage my hands with lotion. How about my feet? Hold my hands, both at once!

Just  because I don’t burst into song anymore doesn’t mean I don’t want to hear my favorite songs coming out of your mouth, or out of a CD player.  (“Alexa” would be very handy when you need a particular piece of music to play for me right NOW!)

Just because I can’t move every single part of my body doesn’t mean you can’t help me move whatever I CAN still move.  Movement is the best thing we can do for our brains, after all.  We all crave it, and you better believe I will become agitated and restless without it, no matter what my movement limitations are.

Maybe I don’t  say your name anymore.  Please don’t take that personally.  Check the light in my eyes when I hear your voice.  I may well still recognize you as someone I know, love and trust.

When I visited  my 91-year-old mother (who was on hospice for well over a year) a few months before she died, I hadn’t seen her in some months.  She was no longer very verbal, but when I greeted her she cocked her head to one side and looked at me intently with such soft eyes, eyes filled with profound and unwavering love. That look was a gift I carry with me always.  I was absolutely sure she knew we were connected, and the comfort this gave me is still palpable.   

Mom used to tell a story about my dad and my big brother, Bob, whose assigned household chore was to take out the trash. Bob had gleefully figured out a fun way to empty bags of trash with great finesse by simply tossing them down from the landing outside our kitchen door towards a waiting open garbage can next to the garage at the end of our sloping driveway.  I’m pretty sure my dad hadn’t thought much of this new routine and was waiting patiently for Bob to learn his lesson. Sure enough, one time, my brother missed the “basket” with a big bag of kitchen garbage, and naturally the bag exploded all over the driveway. Mom and Dad, who were watching, thought this was hysterical. Mom would always laugh heartily at this point in the story. Not sure my brother Bob was laughing as he cleaned up the mess, but Mom sure got a kick out of retelling this, again and again. As her dementia progressed, I noticed she wasn’t bringing up that story as much. So, I would begin telling it. She’d take over just before it got funny, and she’d crack herself and me up describing the flying garbage and all the laughing that ensued. Eventually, I noticed Mom didn’t bring up the story at all anymore. So, I told the whole thing to her. She’d smile big at the ending.     

Whatever the physical, cognitive, or emotional challenges may be for people living with dementia in the later stages, we must not give up on these individuals, or discount the spirit that still exists.  Instead, we honor them by helping them  compensate, following their lead, anticipating their needs, adjusting  the level of support needed, and providing engagement.  Accept them wherever they are at. Validate their feelings.  Reassure, comfort, and fill in the blanks when necessary.    

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

If presents are what you are after, there are some nice ideas out there – check out the Alzheimer’s Store.

This blog entry, however, focuses on the gift of your presence. Is there anything better than fully being with another person, in a relaxed, fun, comfortable way? How can we give more of that to our loved ones who are living with dementia? Let me count the possibilities!

1. We can step out of our comfort zone a tad to communicate more effectively. We may simply need to be a bit louder, to utilize more gestures and to add a little more energy and expression into our words and our tone of voice.

2. We can avoid arguing with the person about their view of reality. (If you have ever won an argument with a person who is living with dementia, well, that’s a first!) We can practice recognizing and acknowledging whatever emotions the person is expressing. I think of this as crossing to their side of the street, looking around, and reporting on what we see. “I get it, Mom. Of course, you’re angry. I would be too.”

3. Sometimes a simple apology is validating. “I’m so sorry, Dad. I can see I’ve upset you.” Validation opens up some space. In that space, you can then change the subject to something else that is meaningful to the person. “I always feel better after a walk. Let’s stretch our legs and find a cup of coffee.”

4. If the person is not averse to being touched, we can use gentle touch to connect, reassure, and to express affection. As dementia progresses, the person may crave good, solid, sincere, gentle touch, as opposed to a cursory pat on the back or a brief hug. Might the person enjoy a little longer hug or a touch on the upper arm that lingers? I think if I were a person living with dementia, I would feel like your gentle (but firm) touch on my arm was telling me, “I am glad you are here. I appreciate you.” If you held BOTH my hands, not just one, I would think, “WOW, that’s nice!” If I fondly remember my mother cupping my face with both her hands, I might even love it if you would do that for me now! If you have a parent living with dementia who gave you nurturing, gentle touches as a child, consider whether giving those same kinds of touches back to your parent now might be a comfort. It’s possible that they got those same sorts of touches from a beloved parent!

5. We can think out of the box to try new ways of communicating and spending time together, whether our visits are in person or virtual. Especially if conversation is becoming more of a struggle as dementia progresses, how about keeping conversation to a minimum in favor of doing things together?

• Sing your person’s favorite song(s)?
• Read and discuss favorite holiday recipes?
• Read a short poem out loud. Perhaps something the person has memorized which is still intact in that long-term memory.
• Remind them of a favorite or funny holiday memory?
• Even virtually, if it can be arranged for you both to have an adult coloring book and some crayons or colored pencils at the ready, you could color together.
• If each of you have a cup of tea or coffee nearby, you can toast one another.
• Play peaceful holiday music, listen together, and breathe deep.
• Move to the music. Movement is critical in preventing falls and in keeping our brains working well. Whatever limitations we may have, we must keep moving whatever we can still move! Invite your loved one to move with you: circle your wrists, roll your shoulders, reach up or out or down, touch each finger one at a time to the thumb, march in place and/or do whatever other movements may conform to both your abilities.
• If visiting virtually and your session is just about over, how about saying goodbye by kissing the screen? I bet they will get a kick out of your big lips!

I don’t expect every idea here to be an ideal fit for you and your loved one, but I do hope this grab bag will inspire you to explore what will work for you both, so that you can more successfully share YOU, your PRESENCE with them, during this holiday time and beyond!

Blessings to you and yours.

--Marysue Moses, Ebenezer Dimensions Program Coordinator 

Click here for the PDF version of this article.

One of the things I love about working in dementia care is that we never know what we are going to get. People are constantly surprising you. The way words are put together in never-before-heard combinations, the insight that take your breath away, the intensity of feeling and the unexpectedly humorous moments. The days in which I get to interact with people with dementia have always contained an element of surprise, often in a delightful way.

I recall one time when my mother, who lived with dementia for over a decade, was in the hospital. I visited her shortly after her admittance. She was delirious, perhaps from medication, perhaps as a result of the dramatic change in her surroundings or maybe she was severely dehydrated, who knows? When I walked in, she was singing one of her favorite songs, “Let me call you Sweetheart” in the loudest, angriest voice I had ever heard come out of her mouth. It was absurdly delightful on one level but deeply disturbing all at once. Mom was not typically loud in her anger. Now, her voice sounded like she was grabbing desperately to a much-needed thread, terrified of losing her grip. I was flustered, a bit embarrassed, and unsure what to do. These many decades later I don’t recall exactly how I reacted, but I’m fairly certain that I tried (unsuccessfully) to get her to quiet down, and having failed, went to find help.

I do remember that she was just fine the next time I visited. At least, there was no more delirium.

I love that she was singing a song that she loved in that moment of fear. If I were to do the moment over, I’d be tempted to try singing along with her, just to see if that would have any positive effect. Then again, I might have been booted out of the unit and it may have caused her more agitation! Delirium is no doubt best handled by experts in delirium, which I am not!

In MOST situations with persons with dementia, joining the person somehow in their feeling, validating rather than trying to correct or convince, responding rather than reacting, being kind rather than adamant, understanding rather than argumentative and overall projecting a steady, calm, caring demeanor even when you feel exhausted and exasperated or without a clue is probably a good plan…as is remembering to connect first before any task.

I visited one of my favorite residents, Agnes, a few weeks after she moved out of the Memory Care community where I was Activities Coordinator. Agnes was actually the first resident who moved in when our community was brand new. She was unforgettable. Short, independent, stubborn and prickly, she was fond of saying exactly what she thought, including, (repeatedly) to our Campus Administrator, “Well, look who you run into when you don’t have a shotgun!” Agnes was hilarious, with an edge. When she finally had to move to the skilled nursing environment, she was 101. Her dementia was progressing. By then she qualified as an institution at our Assisted Living, so of course I had to go check in with her.

She was glad to see me and was still quite sharp and chatty. During our visit, a nurse interrupted us (rather brusquely) and attempted to give Agnes a pill. Agnes started to scream, loudly, ‘NOOOOOOOOOOOOOOOOOOOOOOO!!!!” I had never heard Agnes scream, ever! The nurse tried harder to get the medicine into Agnes’ mouth. You can probably guess how well that went over. Agnes screamed even louder. The nurse slunk away in defeat. Agnes looked at me with a smile, eyes shining brightly and calmly said, “You can’t let ‘em win EVERY time!” I laughed out loud. I was so proud of her! I knew she was going to be all right!

You especially “can’t let ‘em win” if you are approached in a forceful, bossy, “my way or the highway” way by a care provider who fails to connect with you first before a task!

One more surprise story. A woman named Betty, of whom I was very fond, was moody and unhappy. She had been an accomplished artist. Now, she was heartbroken that she could no longer paint as she used to. We gave her multiple opportunities, but her standards were high. She was frustrated and disgusted by her inability to connect her brain and her paintbrush to paint and paper in the manner to which she was accustomed. After a while, her husband decided she might thrive better in a smaller assisted living community. He decided not to tell her in advance about the move, which is often a smart way to go. On the day of the move, early in the morning, Betty came into my office to chat, as she often did. She stood by the door the entire time. Betty was often wistful, but today she seemed particularly so. Before she left my little office, she looked me square in the face and said, ‘Have a nice life.” With an artist’s sensitivity, she had sensed the changing tide, I believe, although no one had told her directly of the impending move.

May you encounter many surprises along the road of caring for someone with dementia. May these surprises make you laugh with delight, may they stir your heart, and whatever they are, may they be learning experiences. May each and every one bring you closer to the person you care for.

--Marysue Moses
Ebenezer Dimensions Program Coordinator
September 21, 2021

I have been thinking and hearing lately more and more about how critical MOVEMENT is for human beings. Older adults, including older adults with dementia, are no exception. I would like to encourage all of you out there who are caring for a person with dementia to think about the possibility of incorporating more movement into the daily routine of the person you are caring for. This will be good for YOUR brain and body as well!

How much movement do you and the person you care for get? If you are at all worried about the state of your own brain, right now or in the future, making regular exercise a part of your life can help. Even simply going for a brisk walk (the more often and regularly, the better) can make a difference. If you are caring for someone in your home, this might feel like an impossible thing to find time for. I urge you to think about anyone who has ever said to you, “Let me know what I can do to help.” Perhaps some of those folks could come and be with your family member while you get your walk in. If you need further convincing on the protective benefits of exercise for your brain, please see Dr. Sanjay Gupta’s book, Keep Sharp, for more on this topic, as well as more on stacking your personal deck towards preventing dementia.

What CAN the person who you care about do, movement wise? That is going to generate a different answer from each and every one of you.

It is always recommended to consult with a doctor, physical therapist or in some cases a trusted personal trainer to determine what sorts of exercise are absolutely safe for you, and /or for the person you care for. Many doctors are offering virtual consultations these days, which might make this more convenient for you.

Whatever the person living with dementia CAN already do, start there, and do more of it. To prevent falls, exercise should be available daily for people living with dementia. That should include strength and balance exercises, adapted as needed to the abilities of the individual of course. Can the person you care for stand up on their own, then sit back down again, even once? If they can do it once, even if they have to lean on a walker to get up, try for twice. If they have the opportunity to practice this every day, they WILL get stronger. Mobility skills CAN be changed.

There are many other ways to get people to move, and you don’t even have to call it “exercise” In fact, you might want to avoid that word like the plague! Let’s say the person is in a wheelchair and cannot stand up. Can they still catch a ball? Bat a balloon? Put on some music, call it “Chair Dancing,” and have them follow your lead. Reach for the sky! Twist at the waist! Circle your shoulders! Circle your wrists! Touch each finger to the thumb!

That old adage, “use it or lose it” really does apply here.

If a person uses a walker but actually CAN walk a few steps on their own safely, could they possibly park the walker a couple steps away from the dining room table and walk the rest of the way, with you at their side if necessary? Walking a few steps, a couple times a day might lead to being able to walk an additional step a day on their own after a couple of weeks, and perhaps more, the more it is practiced. Again, it’s wise to check with medical professionals on what I going to be safe for whoever you care for.

From a seated position, there are many ways to utilize movement for engagement. Here are three ideas:

• If the person enjoys classical movement, put on something lively (one of Bach’s Brandenburg Concertos might be fun) and you can both practice your “conducting skills” as you listen. That might feel like a decent workout if you keep it up throughout the piece! Do take breaks as needed or trade off the conducting job!
• If sports interest the person more than music, how about asking the person to show you what movements go with, say…basketball? Or, you might do the motion and say, “Guess what sport I’m pretending to play?” There are plenty of sports out there to work with.
• If the person enjoys poetry or Shakespeare, take a favorite poem or quote and together make up gestures that would go along with each line or idea of the poem. Joyce Kilmer’s famous poem, Trees, works well for this:

I think that I will never see… (What’s a gesture for “I think”?)
A poem lovely as a tree…” (What’s a gesture that could represent a tree?)

Or, from Romeo and Juliet: My bounty is as boundless as the sea… (Show me with your arms how the sea moves!) My love as deep…. (What can we do for the word “deep”?) The more I give to thee… (How might we show “giving”?)…the more I have… (How could we show “having”?)… for both are infinite. (Show me a gesture that means infinite”!)

Movement helps our spirits. Even if we are only moving in our chair, it can give us a sense of stirring things up, changing the air around us, maybe even changing our mood! Movement helps us get out of “stuck” emotional places. So, let’s keep moving, in whatever ways we can!

--Marysue Moses
Ebenezer Dimensions Program Coordinator

In the interest of self-care, let’s focus on the health of our own brains today.

Whether you happen to be the care partner/family member of a person living with dementia or a professional in the field of dementia care, I would not be surprised if, like me, you have worried about the possibility of developing dementia. There seems to be more hope than ever before that we actually can stack the deck to prevent dementia, at least in a majority of cases. No matter how old we are right now, we can improve the health of our brain.

If you are a care partner for someone with dementia and already thinking that you simply don’t have time to think about the lifestyle strategies I’m about to detail, see if you can reframe taking care of yourself as a huge favor to your loved one. If you and your brain are not in the best of shape, it may be difficult to continue to be there fully for that person who benefits from your relationship.

Over the past several weeks, I have encountered nearly identical messages on the topic of brain health from three different sources: a well-known brain surgeon, Dr. Sanjay Gupta, author of the new book, Keep Sharp, an Alzheimer’s Association webinar about latest research efforts, and my exercise teacher, a PhD student with close access to neurologists, who recently did a webinar of his own on this very topic.

The PhD student was walking on a beach one day with a neurologist friend. (This is not the beginning of a joke!) He asked the neurologist what would be the first thing the neurologist would do, if he was diagnosed with dementia. The neurologist replied, “I would start doing 15 hours per week of aerobic exercise, and I think that would turn it around.” That’s a stunning statement. Whether you believe that’s possible or not, the idea of EXERCISE being THE BEST thing for your brain has been around for quite a while. It is currently backed up by more solid research than other recommendations concerning preventing dementia. I hear more and more now about the specific benefits of aerobic exercise. If walking is your preferred mode of exercise, brisk walking can be effective for increasing your heart rate. Of course, it is important to check with your doctor about what is okay for YOU to do in terms of exercise, if you are not already clear on that.

So the #1 prescription is to KEEP MOVING.

Here are other recommendations for preventing dementia, which are being more fully studied as we speak:

2. GET ENOUGH SLEEP: There is evidence that as we sleep, the body heals and memory is strengthened. Enough sleep (7-8 hours/night) can improve your chances of avoiding dementia in the future. During sleep, metabolic debris in the brain is actually flushed away. This includes sticky proteins that are associated with Alzheimer’s disease. If you have trouble sleeping, the advice is to avoid naps, and try to develop a regular schedule for sleep, and make sure your room is cool, quiet and dark. Yes, this may be challenging if you are caring for a person with dementia who gets up in the middle of the night and needs attention. If you exercise in the morning rather than later in the day, that can help you sleep better. Establishing bedtime rituals to help you relax and unwind can be helpful too. Consult your doctor if nothing seems to work.

3. MANAGE STRESS: This can involve a number of strategies. TAKE TIME FOR YOURSELF, even if it’s just a few minutes to close your eyes, breathe, and do nothing. Many mindfulness apps are available via your smart phone or over the internet these days to guide you in short meditations and/or to help you relax before sleep. See www.hminnovations.org for more information.

DOING FUN THINGS is part of managing stress, as is CONNECTING WITH OTHERS (which can be fun). Social isolation can speed up the process of developing dementia – I sure saw that happen with my own mother during the year after my dad died. As a widow myself now, I have learned the importance of reaching out to others. It’s not always easy but it is essential. Remaining socially connected is vital to well-being and to the health of our brains.

SEEK PURPOSE AND MEANING. A sense of purpose helps balance the stress of life. People never lose the drive to be of use to others. People with dementia still have that drive, but it may not be obvious. We must help them express their interests and passions. Purpose can be expressed in a myriad of ways. It’s worth pondering what brings and has brought MEANING to your life. Are you as deeply connected to what gives you a sense of purpose as you’d like to be?

4. KEEP LEARNING. If you’ve always done crossword puzzles, well, do them for fun if you want, but if you find something NEW to learn, your brain will thank you even more. Take a class on something you’ve never explored before. The brain is still able to make brand new neural connections as we age. You can also challenge yourself by changing your routines even a little. Do you walk the same route when you take a walk? How about changing it up? You can even try brushing your teeth with your other hand, it’s good for your brain, though a tad inefficient!

5. NOURISH YOURSELF. Generally, eating more fruits and veggies, less red meat and minimizing processed foods is recommended. Beans, sweet potatoes, nuts and whole grains are especially helpful. As dementia can be caused by vascular issues, what is good for the heart is good for the brain. The Mediterranean diet (The Mediterranean Diet Cookbook by John Chatham looks like a good introduction) is recommended by the American Heart Assn. as well as the American Diabetes Assn., is conducive to brain health. Fruits and vegetables have a myriad of benefits. They are a great source of vitamins and minerals. Do check with your physician if you are on any medications, as some foods (green leafy vegetables, for example), may not be compatible with some meds. You might want to check with your doctor about dramatic dietary changes, to make sure they are a good fit for you.

So there you go. Five ways to reduce your chances of developing dementia. If this feels like too much, start small, do what you can. bit by bit. See what happens.

To review: MOVE. SLEEP. MANAGE STRESS (Relax, have fun, connect with others, live your purpose). KEEP LEARNING. NOURISH YOURSELF.

Even if I should get dementia, despite valiant efforts in these areas, I bet I’ll do better with it if I make it part of my purpose in life to do all of the above!

Resources: Keep Sharp by Dr. Sanjay Gupta, Dr. Rebecca Edelmeyer, Alzheimer’s Association Research Webinar, May 4, 2021, Scott Anderson, Pilates on Harrison, Preventing Dementia Webinar, April 24, 2021.

• Marysue Moses, Ebenezer Dimensions Program Coordinator

Each month, I put together short “HOT TOPIC” trainings for care teams across Ebenezer. Here’s a tweaking of a recent one, with family care partners in mind.

Okay, I admit, “Magic Words” is a bit of an exaggerated title for my topic. But the words I’m going to mention ARE powerfully helpful in dementia care. I recommend keeping them on the tip of your brain and using them often.

“So what?”

To be clear, “So what?” is NOT something I recommend that you say TO a person with dementia. But it’s something we may need to say to ourselves when the person we are caring for does something unusual, socially unacceptable, or unexpected.

Lots of things that people with dementia do are “so what?” situations, meaning whatever the person is doing is not hurting themselves or anyone else in any significant way. Perhaps your Dad still gets dressed on his own. This morning, all the buttons match up with the buttonholes and everything is perfectly clean. Fantastic! The only problem is that Dad chose a plaid shirt to go with striped pants. Unless the Queen is stopping by for tea (highly unlikely during the pandemic), so what? Be grateful and complimentary. Just because the Dad of days gone by wouldn’t have chosen that sartorial combo is no reason to rain on the persons’ success in this moment right now.

Maybe at tea time, your wife keeps putting sugar after sugar after sugar in her tea. Unless she must avoid sugar due to diabetes or some other medical concern, is this worth getting into a big power struggle over? Have YOU ever eaten too much sugar?...So what? Did you live?...Good to hear! You might simply make sure next time that there is a limited amount of sugar readily available. Perhaps offering some fresh fruit would be an added compensatory strategy.

“YES!”

How often do you say the word “YES!” to the person you’re caring for?

I recently heard about a new member in one of our Ebenezer memory care communities who was very anxious. She responded very well when the care team figured out that starting every sentence with the word “YES!” (pay special attention to that exclamation point) in answer to her concerns helped her feel understood and kept her calm.

Here are some examples:

• I didn’t get any breakfast! YES! you must be hungry! Let’s find you a little snack.
• I don’t know what to do! YES! And I’m going to help you get busy!
• I want my mother! YES! Your mother means the world to you! I miss my mom too!
• I need to get to work! YES! You are such a good worker! You know, they called to say you have the day off today, but I have a job for you.

“YES!” is powerfully affirming. It’s a way to validate the person. People with dementia need to hear it more. (They also need to hear “You’re right” as often as possible.) Do you think “You’re right!” could be substituted for “YES!” in any of the above examples? Yes! You’re right!

“I wonder”

The words “I wonder” are extremely useful. Use “I wonder” instead of asking so many questions. Questions can feel overwhelming for persons with dementia. “I wonder” keeps pressure off the person. Wondering is about you, not about them. It’s gentle. It simply conveys curiosity, which makes life easier for a person with dementia who may feel overwhelmed by a direct question or by having to make a choice.

Instead of asking the person, “Do you want to do this or do you want to do that?” experiment with “I wonder”. For fun, read the following statements out loud. Make sure you are truly wondering and not inflecting your voice as though you were asking a question.

• I wonder if you’d like to wear this red shirt today.
• I wonder if I could help you get freshened up for the party.
• I wonder how you’re feeling right now.
• I wonder how you got so smart.

I wonder how many of you will now practice thinking “So what?” and saying “YES!” , “You’re right!” and “I wonder” more often!

Thanks for reading this blog!

Jennifer Anderson, Educare, Cyndy Luzinski, SPECAL training and Teresa Brenneke, Ebenezer all provided insight on this topic.

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

Who says Dreams don’t come True?

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

Anne Basting, creative genius of dementia care and author of the splendid book, Creative Care, says that “Joy and meaning can co-exist in challenging times.” What an inspiring statement that is, in the face of this exhaustively challenging holiday/pandemic season!
Pandemic aside, Anne’s insight is a powerful reminder for anyone caring for a person with dementia. I have witnessed care partners at times feeling hopeless, bitterly asserting there is no joy nor meaning whatsoever to be found, given the challenges their loved one is experiencing.   

I do understand where those feelings come from. Space must be allowed for people to have them, and hopefully to work through them. That said, I humbly beg to differ with the belief that hopelessness is all that’s ahead once a person has dementia. As humans, we all have the capacity to feel loved, honored, appreciated, comforted, uplifted, amused…the list goes on. Even if we have dementia, we feel a myriad of emotions. We can still remember how others make us feel. We can be moved to tears. We can giggle uncontrollably, or a little (intensity of expression will of course vary, person to person), we can admire beauty outside the window, and we can know somewhere deep inside what and who we love, have loved and still love, even if we cannot put it all into words that make perfect sense.
Dementia does not destroy our desire to help others, to connect deeply, or to give and receive affection. It does not destroy our spirit.

Sure, all this is easy for me to say. I do not personally have a diagnosis of dementia, at least not yet. And I certainly have not known every single person with dementia. I started working with persons with dementia nearly 20 years ago, if I count the interactive storytelling activity I did with my mom and her cohorts when she first moved into a memory care community. For going on six years now, most of my work has been training others about dementia care. I have a lot more contact with staff who provide care than I do with care recipients.

Happily, I am currently helping with activities in a memory care community two mornings a week. I feel excitement, energy and relief when I am directly connected to people living with dementia. This current experience has brought back memories of many individuals with whom I’ve worked. These folks taught me 95% of what I know about dementia care.

The holiday season always drives reminiscence, especially this year. Here are a few memories I‘ve been mulling over regarding this topic of joy, meaning and challenge.

• My friend Irene was sitting in her wheelchair, feeling very grumpy indeed. She  was worried, and prone to complaining. I tried to cheer her with “Well Irene, you know what they say – when life hands you lemons, what are you supposed to do?” She looked at me crossly. Then, her grumpy face morphed into the visage  of a mischievous sprite as she proclaimed, “Make whoopie!”. We laughed heartily. I believe I may have been the more cheered!
• Ruth was a tall and vibrant woman with sky-blue eyes, and stylish, chin length, straight white hair. Most of the time, Ruth spoke in complete gibberish. Janice was diminutive, thin and short. Her hair was mousy gray and she didn’t have much of it. Janice was ever so gentle. She always spoke in a breathy whisper. I discovered Ruth and Janice sitting together when I entered the Activity room one quiet afternoon. They were both transfixed by baby doll Janice cradled in her arms. Janice held that baby as though it was the most precious thing in the whole wide world. She whispered, barely audible, as she gazed into the baby’s eyes. Ruth looked on, beaming. When I walked closer to them, Ruth looked up at me and quietly, yet delightedly remarked, “She has the most beautiful mother!” (Not a shred of gibberish to be found in that utterance!) I was deeply moved to have borne witness to this moment of connection between these two friends.
• During snack time in our memory care dining room, Mary, who was often upset, alone, and out of sorts, was the first to arrive. In as sunny a voice as I could muster, I asked her whether she’d like lemonade or Coca-Cola, her two favorite options.  She looked at me with annoyance and loudly blurted out, “Just say hi!”. I was suitably embarrassed. I dutifully said “Hi, Mary!”, apologized, and sat down to chat with her a bit more.

I don’t say people with dementia are our best teachers for nothing! They are the true dementia experts who will teach us volumes, if only we will listen.

I learned that Irene’s sense of humor was deeply intact. I saw how Ruth and Janice found a way to connect that defied their respective communication challenges. I understood that Mary’s righteous indignation was thoroughly justified by me not bothering to give her the human dignity of a hello before plunging into my task. She knew what treatment she deserved as a human being, and she still had the bravery to stick up for herself.

As the vaccine for COVID-19 has entered the picture and provided some hope on the horizon, some of you may have wished, “Ah, if we only could have a vaccine for dementia!” Yes, that would be great!  But as that is not likely to happen anytime soon, I encourage you to vaccinate yourself against hopelessness by committing to stop expecting LESS of these folks, even as dementia progresses. Rather, let us commit to exploring and supporting strengths and skills, surprises and joys, meaning and spirit. May our hearts open to new ways to keep connecting with the people in our care during this holiday season, during this pandemic, and evermore.

Blessings for you and your loved ones.

--Marysue Moses, mmoses1@fairview.org

I’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.

Relationship with a person with dementia is a partnership!  A dance!  Toes that get stepped on usually recover! It just might be a FUN dance!  Enjoy the collaboration!

-- Marysue Moses, mmoses1@fairview.org, with thanks to Jeanie Brindley-Barnett and  Zoë Bird.

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

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

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

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

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

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

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

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

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

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

Marysue Moses,
Ebenezer Dimensions Program Coordinator

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

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

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

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

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

That said...

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

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

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

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

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

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