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By Sue Ronnenkamp MHA

Rethink Aging & Dementia & Memory

By Sue Ronnenkamp MHA

Age THRIVE Guide #8


​Rethink Aging & Dementia & Memory


Copyright © 2018 by Sue Ronnenkamp 

 All rights reserved. 

If you'd like to use or reprint any of the thought pieces in this guide, please contact Sue at the email address below.  Sue's writing is all about making a difference for our aging, changing world, so there will only be a nominal fee charged (or no fee at all) depending on the nature of the request.   

Please address inquiries and reprint requests to: 

 Sue Ronnenkamp at sueronnen@gmail.com



​Amazon for Kindle e-book edition

 May 2018

Viewing Dementia Differently

 “We need to change our minds about people whose minds have changed.” 
​- Dr. Allen Power, Geriatrician and renowned specialist in caring for people with changing cognitive abilities

I’ve been thinking this for a long time, going back as far as high school.  That’s when I was a nursing home aide and worked with those with dementia for the first time. I thought they were fascinating.  It was like being opened to a different world.  I clearly remember trying to glimpse what they were seeing and understand some of what they were experiencing.  In the midst of a setting that could be tough to work in, they were a special blessing.  

Since then, I’ve encountered so many great people with cognitive impairment in my aging work. Several years ago I took on the challenge of finding ways to enhance the lives of those living in the senior communities I served and supported.  I especially wanted to help those with dementia and changed minds, but struggled with expanding my understanding of this disease and this experience.  Still, I continued on with this quest.  Way too much about dementia is veiled and cloaked in tragedy, while those with this impairment lose out – including the many who love and care about them.   

Then a window opened for my paradigm shift in September 2015, when I attended a program called The Unintelligible Afterlife.   The title was intriguing and I thought this would be an interesting way to spend a Saturday evening.  I had no idea this program would be mind-changing for me and my work.  The evening’s focus was about The Final Words Project, a research initiative to capture the last words of the dying.  But as I listened to the panel of speakers, I saw far greater implications and applications.  

One single PowerPoint slide presented by linguist Lisa Smartt (author of Words at the Threshold: What We Say As We’re Nearing Death) flipped my thinking completely.  With Lisa’s permission, here’s what hit me like a ton of bricks.  Our brain activity shifts from left brain to right as we near death – but also, I believe, for many who are simply growing older and especially for those with dementia.  This changes the language we speak and words we use from the literal ones we’re all so familiar with, toward the metaphorical and the nonsensical.   AHA!  We’ve screwed up our understanding of dementia by trying to

understand them with our logical and linear left brain – like listening to Chinese and trying to comprehend the words in English. ​​

​I wanted to learn more, so reached out to Lisa and dug into her work further.  I also started listening with new ears every time I was around someone with dementia or in the late stages of life.  What I heard as meaningless “word salad” before, I now recognized as creative word choices and stretched to receive their communication in non-literal ways with my whole brain – not just part of it. 

Lisa helped me understand that metaphors are common in everyday language.  Most of us use them automatically, without thinking about them.  So why couldn’t this come easy to those whose minds have changed – especially if their brain processing has shifted?   For instance, someone with dementia might call you her sister, when you’re really her daughter.  But isn’t a loved one a loved one, even if named differently?  Another might keep asking to go home, when really they’re seeking belonging and security – what home represents.  Or another might talk repeatedly about moving, as they process death and their final transition.

This new view of the way brain processing transforms also helps explain why art and music programs for those with dementia are often so successful (e.g., Music & Memory, MoMA Alzheimer’s Project, ARTZ Philadelphia).   Creativity flows from the right side of the brain, so doesn’t it make sense that various art forms could be powerful connecting tools for those who live in a right-brained world?    And couldn’t it be true that they might find it easier to communicate via forms of “art speak,” like artists do?  I’ve seen it, I’ve witnessed it, but only when I looked and listened with new eyes and new ears. 

Since my awakening, I’ve noticed that others see this too.  Now we need to help more people change their minds about people whose minds have changed.  This could be so powerful and so very important for so many.  This could be one big way we learn to stretch our minds and brains to keep communication lines open with those we love and support.

Staying Connected to Those We Love Who Change

It’s hard at times to remember what my relationship with Mom was like before her strokes.  I know we had a very strong mother/daughter bond.  I can recall long phone calls and leisurely talks over lunch and confiding in her like a best friend.  I also know that Mom was warm and generous – and someone who loved talking to anyone who crossed her path. 

Closer to the surface of my memories are Mom’s final years, five of them spent in a nursing home (where she died in 2014).  I never gave up on staying close to Mom, but it wasn’t easy.  She became quieter and less verbal with each passing year, and her interest in people and the world around her diminished.  This made it challenging to connect and stay connected to the mom I loved so much. 

"If we acknowledge our own distress as a response to this situation, rather than projecting it onto our loved ones, maybe that will free us to engage with them in a more positive way."  - Maggie Le Tourelle, The Gift of Alzheimer’s

Still, I kept trying.  Mom had been a prolific letter writer and kept a daily diary for many years.  I thought maybe these pieces of Mom might help.  So I boxed up a bunch of both and made them readily available in her room.  A dear friend of Mom’s visited weekly and tried using the letters and diaries to connect with her.   I tried as well, on several of my visits home.  Even though the words we were reading and sharing were Mom’s, she showed little interest – as if they were written by someone she didn’t know. 

After this flopped, I decided maybe they were meant for me. So I started going through the many boxes of letters she’d written me, spanning over 30 years, many 4-5 pages long.  What a wonderful reminiscing experience this was, as I took this journey down Memory Lane! The letters vividly brought my old mom back to life, and reminded me of all she’d been and meant to me. This also gave me the opportunity to choose which ones to keep.  The selected ones are now in my family memory box, making them easy to access any time I feel the need to spend time with Mom in this special way.

Next, I tried using old photos to spark a connection.  Mom couldn’t hold a photo album, turn pages, or see small pictures.  So I scanned many of the best ones and created a slide show that played daily on a larger digital frame in her room. At first, she didn’t know the people and places, but slowly, some recognition returned.  This time, she was able to reconnect to pieces from her past and the people she loved – and my siblings and I could use the photos to share time and memories with her.  It was also a way to celebrate Mom’s life – and keeps her close in mind for me, now that she’s gone.

Much harder was finding a way to connect with and value who Mom became, as vascular dementia took more and more of my old mom away.   I’d like to say that all my years working in the aging field made this easy, but it didn’t.  Accepting someone AS IS is far easier when you share no past with the person, than when you do. 

Accepting someone AS IS is far easier when you share no past with the person, than when you do. ​

What finally helped was remembering how I could simply BE with my grandmas when I was young, and I started to make this shift with Mom.  This slowed me down and allowed me to become more comfortable being with her in silence.  With time, I learned to listen very closely when she did speak and share things with me.  The great gift from this?  Her wisdom and insights that took my breath away at times and amazed me on many occasions, even when communicated with simple words and in very short sentences.

I also discovered that she knew things in ways I still don’t understand.  For instance, she repeatedly asked me about a new boyfriend and somehow knew when I was with him, even though nothing about this had been shared with her or my family.   Could a mother’s sixth sense be stronger than we realize?  Might intuition and other “knowing senses” heighten, as brain and mental functioning changes?  Nothing’s been proven yet, but I’m not the only one who’s experienced the unexplainable with those whose minds have changed. Just because we don’t understand something, doesn’t mean it isn’t so. 

 Just because we don’t understand something, doesn’t mean it isn’t so. ​

I hope this story about my mom shows that we can stay connected to those we love, no matter how they grow old and experience later life.  Yes, this might take time and energy and creativity and persistence – but isn’t this worth it for those we love and cherish?  Wouldn’t they do the same for us?


Music, Mindset, & Memory

I was a big Ally McBeal fan.  I hadn’t thought of that 1990s TV series in ages.  But early last year, I remembered the theme song component of that show when I was in dire need of an attitude adjustment.  That’s when I decided a theme song might help me.   I chose Beautiful Day by U2.  What a difference this made.  

Music is powerful.  I’m sorry to say that I lost sight of this.   Yes, I loved music when I was young.  And sure, I’ve always much preferred exercising to music (Jazzercise, NIA, Zumba), than not.  But outside of fitness classes, I listened to music very little in recent years.  Some of this I can blame on technology.  Without children to keep me current, I got behind with making all the switches in music delivery systems.  In fact, I missed the iPod phase completely.   Then I got involved with starting a Music & Memory program in my last aging services position and was reconnected to the power and magic of music.    

There's power and magic in music.   

I learned about this from the Alive Inside documentary and knew right away I wanted to add this offering at the senior living communities I supported.  It fit perfectly with our goal to expand our array of affordable and meaningful resident engagement opportunities.    And maybe best of all, Music and Memory’s focus on delivering personalized music put a special spotlight on the uniqueness of each resident.  Yes, the love of music is almost universal in nature – but the music we love is not.   

The love of music is almost universal in nature – but the music we love is not.   ​

Since my iTunes and iPod knowledge base was non-existent, I needed tutors and helpers to get the program off the ground.  Fortunately, two key people came to my rescue.  One was a high school student looking for a volunteer opportunity.  The other was a new staff person in our Activities area.   They easily took on the technology aspects of the program, while I reached out to residents and families to learn music tastes and best songs to include under the various genres (everything from hymns to opera).   Then we started building our music library, adding both purchased selections from iTunes and music loaded from donated CDs.

Once we had the foundation in place, a small and passionate team of great volunteers (along with our young Activities staff person) helped launch this program.  I joined in to experience firsthand the power of this offering.  All the hype about this program is spot on.  Personalized music playlists delivered via iPods and Smart Phones do indeed tap deep memories and can bring participants back to life – back to connecting – back to engaging with the world around them.  It doesn’t matter how long this lasts.  Any good moment is a cherished gift.  

This is how I got turned back on to music.   Sharing residents’ playlists via shared headphones (only requires a simple splitter device) was something really special.  Though most were not listening to my music, it was in many cases my parents’ music.  That took me back to my memories growing up.  I also found out just how far music delivery had advanced in the years I’d been away.   The sound is fantastic, even on cheap headphones.

This brings me around to where I started. After my exposure to Music and Memory and remembering the Ally McBeal theme songs, I created my own playlist on my iPhone.  I primarily use this when I work out on the machines at the fitness center.  But it’s available to me any time, any day.   And I can add new and old music anytime – and switch out my theme song, when so inspired.  Whatever song I’m favoring at the moment, music kicks off my day and boosts my attitude in the right direction, something I don’t take lightly in the least and hope I never will.

This also reminds me that there’s a lot about living a good life that’s universal.  What works on a personal level can be meaningful and powerful for Agers of every age and in every circumstance.   Best of all, engaging and connecting with what we love doesn’t have to be complicated or expensive.  Neither does bumping up our attitude and mindset and tapping into good memories.  We all need this at times.  All of us. 

What works on a personal level can be meaningful and powerful for Agers of every age and in every circumstance.​

Music is an easy, accessible, and affordable way to make for a beautiful day – every day.  Let’s not miss out.  Let’s make sure those who can’t access music (and good memories) on their own don’t miss out either.


Dementia's Collateral Beauty

Unexpected Blessings

Have you seen Collateral Beauty, one of Will Smith’s recent movies?  It wasn’t a hit and had quite a dark theme.  But it gave me the answer I’d been seeking. 

What’s collateral beauty? You’ve likely heard the term “collateral damage” – often used in the military to describe harm that’s inflicted unintentionally (e.g., innocent casualties of war).  To me, collateral beauty is its opposite and means unexpected blessings that can come from supposedly bad things. 

For years I’ve been seeking a more meaningful way to view the dementia experience.  Aging by itself gets a bad rap in our society, but those with dementia often take the biggest hit.  As Anne Davis Basting wrote in Forget Memory, our fears contribute to the stigma of living with dementia and we need to change this.  Even positive-focused articles about dementia often include words like “devastation” and “struck down” and “afflicted” – labeling that reinforces negative views.   

I saw “collateral beauty” as one way to take us in a new direction.  I wanted this, because I’ve encountered so many great people with dementia over my many years working in the aging field.  I’ve also seen far too many of these good folks abandoned by family and friends, because they can’t handle the changes they see in their loved one.  I ache for this great tragedy and the loss for all concerned. 

But maybe most importantly, “collateral beauty” gave me another way to share Mom’s story.  She had her first stroke early (78).  Several TIAs followed and she developed vascular dementia.  She ended her last five years in a nursing home, where she became frail and physically broken.  After she died, it would’ve been so easy to focus on her pre-stroke life only.  But I didn’t want to do this. Why? Because there were unexpected blessings that could’ve been so easily missed and overlooked.   Here's some of that story.  

​Lots about Mom changed after her stroke. Those first years were especially tough. Mom had always been our chief supporter and cheerleader.  And she was the center of our family, so we were all left struggling to adjust and adapt. 

​Dad stepped up first. This started pretty rough, since we didn’t know how to interact with him without Mom in the middle.  But he made a big effort and this became our opportunity to bond, as we shared time and space together.  This healed our relationship with Dad and enabled us to better support Mom. And before he died, he left each of us with loving and kind words – something (I believe) only happened because of what happened to Mom.   

My siblings and I had to step up next.  Mom valued family more than anything and wanted us to be close.  Instead she ended up with kids with totally distinct personalities and interests.  Being born girl-boy-girl and our spread in ages made connecting even harder.  But when Mom changed – and after Dad died – we were pushed to connect on a deeper level.  We learned how to leverage our strengths and band together for Mom and each other.  We became the family Mom always wanted – something (I believe) only happened because of what happened to Mom. 

I was personally impacted too.  Mom and I had a tight bond, so her changes hit me especially hard.  I never gave up on our relationship, but it often wasn’t easy.   One day I sat with her in silence all afternoon.  Before dinner, a nurse came in.  Mom perked up, introduced me, and told her “My daughter and I are having a wonderful conversation.”   She sounded so sincere and my perspective shifted in a more positive direction.  Maybe we were still communicating, but on some other level?  That’s when I surrendered and eased into BEING with Mom in a whole new way.

​I finally surrendered and eased into BEING with Mom in a whole new way.​

I spent my last visit sitting quietly with Mom during the day and holding her hand at night.  She was in a lot of pain and needed that hand holding.  She also needed my presence.  What a gift that I’d released what “had been” and could BE with her in this new way.  What a blessing to have this added time with Mom to let go.  

From this view, Mom’s ending was filled with lots of collateral beauty.  Her family was blessed and transformed in powerful ways.  We were forced to step up our game.  We become better human beings for Mom and for each other. 

Many point out that we can create better lives for people with dementia.  But first we have to change the way we define this disease and the way we look at this experience.  Then maybe we can bring dementia’s collateral beauty to light for the benefit of so many. 

Let's bring dementia’s collateral beauty to light – and enable more to be powerfully blessed. ​

Simply Powerful

It feels so good to squat and bend again!  Sounds crazy, right?  Not to me.  For six weeks post-hip replacement surgery, I couldn’t do either.   I could only do this left leg lunge (with my right leg kicked back and straight), when I needed to reach down and pick something up – or put something down.  I was dutiful about following these hip precautions – but once they were lifted, squatting and bending felt so sweet! 

The Value of Simple Pleasures

This reminded me of the value of simple pleasures, something I learned about at an aging conference several years ago.  At that time, I was looking for ways to enhance the later life experience for residents I was supporting in several retirement communities.  I loved this idea because it’s practical, economical, and meaningful too.     

Dr. Allen Power’s book Dementia Beyond Disease gave me more to dig into for enhancing joy and well being for those with cognitive and physical disabilities.  He writes, “Simple pleasures are exactly as they sound – simple activities or experiences that bring pleasure….We all have them.  They could be as varied as playing with a child, or sitting with a cup of coffee and watching the sunrise.”  Key – they’re simple and can be engaged in without a lot of time or expense, and they’re personal and unique for each of us. 

“Simple pleasures are exactly as they sound – simple activities or experiences that bring pleasure….We all have them." - Dr. Allen Power, Dementia Beyond Disease ​

This made good sense to me.  The big stuff of life is exciting – like my 2016 adventure trip to Scotland – but they don’t happen every day.  Not even every year.  Small and simple pleasures, this is the stuff of life that can be indulged in any time and at any age. 

What’s on my list?  My morning coffee, a child’s laugh, puppies, Netflix binge watching, a Dairy Queen splurge, fresh flowers, puzzle time, a chatty call with a faraway friend, a spoonful of peanut butter, being warmly greeted by my dog when I walk in the door, sitting outside on a beautiful day, a good head massage at the hair salon. 

Julia Cameron provided me another view of simple pleasures in It’s Never Too Late to Begin Again.  This updated version of her popular Artist’s Way course is filled with activities and tasks to help readers discover creativity and meaning at midlife and beyond.  One of my favorites is a task called “Touchstones.”  The instructions:  list five things you love for each of the five senses (taste, touch, smell, sound, and sight).  Here are some of the things I chose:

TASTE: Chili Chocolate, coffee ice cream
TOUCH: sorting puzzle pieces, the feel of flannel
S​MELL: homemade chicken tortilla soup, cinnamon
SOUND: birds singing in the early morning, chimes
SIGHT: the ocean, my best friend’s face

As I wrote about earlier, I started a Music & Memory program when I was focused on enhancing life for senior living residents.  Developing this program might sound simple, but it wasn’t.  Many of the residents in our higher, more supported levels of living couldn’t tell us what music they loved and what songs they wanted added to their playlist.  This made me think then – and again now – wouldn’t it be great if we created our music playlists early in the aging process, with needed tweaking done along the way?   

And couldn’t this apply to simple pleasures and touchstones too?  Sure, we might always be able to communicate our preferences to those around us.  But what if we can’t?  And what if these things aren’t known, and we miss out on these accessible things we love and enjoy? 

What if we can’t communicate our preferences to those around us?  What if we miss out on these accessible pleasures we love and enjoy? 

So I took action.  I created my lists and put them in a special box I labeled “About Sue – My Simple Pleasures.”  I also vow to keep my lists updated in the years to come.  

Like so many things about aging well, it’s never too soon to start and can easily become too late.  We don’t know what the future holds and what it might bring for us.  What I do know is that quality of life means more to most of us than quantity.  So anything we can do to add joy and well being to life is a good thing.  Today and always.

Quality of life means more to most of us than quantity.  So anything we can do to add joy and well being to life is a very good thing. ​

Forgetting: Feature or Flaw?

Forgetfulness can be a feature, not a flaw.  I saw this in a recent LinkedIn Daily Rundown.  The focus of this post: we don’t need to remember everything to make sound decisions.  What caught my attention?  Our ability to forget unessential stuff is just as important as our ability to hold onto what's meaningful.  It’s our brain’s way of making additional space for what we absolutely need [or want] to remember. 

I resonated with this idea of forgetfulness as a feature – especially since I’m an Ager working in the aging field, where memory loss is dreaded and feared and a constant focus and topic of discussion.  That headline also made me think of Mom.  She had a series of strokes and developed vascular dementia that resulted in forgetfulness and cognitive decline.  She died a few years ago, but her aging experience is still close in mind and memory for me.  

I loved Mom deeply and wanted to stay connected to her.  Thankfully, my many personal and professional interactions with Olders had taught me to listen very closely when Mom did speak and share things with me.  Still, it could be challenging at times to figure out what was fact and what was fiction.   Luckily (again), I knew better and didn’t automatically discount what Mom said or told us.  Instead, I dug further and asked questions – by talking to my siblings, calling the staff at her nursing home, checking with the friend who saw Mom every week, and probing deeper if I was there for a visit or on a Skype call with Mom.   

What I learned over time was this:  Mom did remember lots of important stuff – things like visits from friends and family, news about her only grandson, details about us (her kids), stories from her earlier life, and more.   What she typically forgot was the trivial stuff – like what she ate for lunch – things that quickly went in and out of her memory.   In this way, her forgetfulness was definitely a feature – a way she was able to hold onto what was important to her (even with diminishing memory storage capacity), while letting what wasn’t GO. 

I know that dementia and memory loss affect people differently.  But I bet if we dug deeper into what’s communicated and what’s remembered by those with this disability, more share the essence of Mom’s experience than we often realize.   I take great comfort in this – that even as the brain is damaged or loses mass and storage capacity, what's meaningful and important to us can remain and be communicated or visible in some way – if we look for this and recognize it.  But first, we have to view forgetfulness as something that can help, not just hurt or diminish us in only negative ways.   

This is also important to keep in mind for the normal kinds of forgetting that happen as we grow older.  I remember reading somewhere how the brain is like a filing cabinet that gets fuller and fuller as we move through the life cycle.  This is why old memories and knowledge can be hard to access at a moment’s notice – and often pop up later (after our brain has had time to seek out what we’re trying to remember among all the files we’ve stored away).  

Again, in this way forgetfulness is very much a feature.  What would our lives be like if every memory and piece of knowledge we possess was out in the open and piled up all around us?   I know this would personally stop me in my tracks and keep me from getting anything done or accomplished.  I’d be too overwhelmed by the clutter and the sheer volume of things I could think about or address or consider or remember.

Too much information can bog down even the best of minds.   Too much remembering can also keep us from living and experiencing life now and going forward.  This is why there’s so much truth in these words: 

“Forgetfulness is a form of freedom.” Kahlil Gibran      

So today I remind me – maybe you too – to appreciate the features offered us by forgetfulness – even in its most extreme forms.  

Let’s also remember that what’s really important can stay with us – somehow, in some way, and somewhere in our hearts, minds, or memories.  In this way, forgetting the unessential can be viewed as not only a beneficial design feature – but a tremendous gift and blessing, one that can easily become more valuable with time and with age.   

What’s really important can stay with us – somehow, in some way, and somewhere in our hearts, minds, or memories.​ 

​​Forgetting the nonessential can help make this possible.  


Added Resources

  • Alive Inside (2014 award-winning documentary)  www.aliveinside.us
  • Dementia Beyond Disease: Enhancing Well-Being by G. Allen Power, M.D.
  • Forget Memory by Anne Davis Basting
  • It's Never Too Late to Begin Again by Julia Cameron
  • The Gift of Alzheimer’s by Maggie La Tourelle
  • Through the Eyes of Dementia by Johnna Lowther
  • Website: Music and Memory www.musicandmemory.org
  • Website: The Final Words Project www.finalwordsproject.org
  • Words at the Threshold: What We Say As We’re Nearing Death by Lisa Smartt


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THRIVE Mini-Guide Series

Rethink Aging & Our STUFF​

Sue's series of 15 THRIVE mini-guides focuses on rethinking aging in a multitude of ways for full and meaningful later life living.  All the guides are just 25 pages or less, easy-to-read, and can be referred back to as often as needed or wanted in the years ahead.  

​Learn more about this series on Sue's Amazon author page at www.amazon.com/author/sueronne...​ Get your own e-book copy of each guide today for only $2.99 each!


About The Author

Rethink Aging & Our STUFF​

​​

Sue Ronnenkamp writes to make a difference.  Her MISSION: Help people to own their aging in positive, empowering, and meaningful ways.  The RESULT: An expanded view of growing older and a far wider array of options for living well for life!

Sue has a Masters in Health Care Administration and has been working in the health care and aging services fields for over 30 years.  Today she serves as a navigational guide for Baby Boomers and beyond, while continuing to innovate for the aging field with new approaches, models, and strategies.

She loves sharing her seasoned knowledge, wisdom, and experience with all who want to age well and THRIVE.

For more about Sue, visit her web site at www.AgeThrive.org and her Facebook page at Let’s Thrive with Age (www.facebook.com/agethrive).  

And once again, please contact Sue if you'd like to use or reprint any of the thought pieces in this guide.  Together we can support and shift our aging, changing world and make a powerful difference for Agers today and tomorrow!