Category Archives: Dementia

Speaking at the 2017 Re-Imagine Life with Dementia Conference

In June 2017, I had the privilege of being involved with the first Dementia Action Alliance
Conference: “Re-Imagine Life with Dementia” in Atlanta, GA.

The conference combined the lived experience of 30 people diagnosed with various forms of dementia along with a variety of individuals who interact with dementia. This included; care, facilitators, music & speech therapist, dementia service providers, technology groups, and the list went on. This conference was filled with knowledge and education. It was one of the most powerful conferences I have attended.

DAA involved people living with dementia in every part of the conference. From conception
to planning to speaking and clean-up – we were included and “Nothing About Us, Without Us”
was implemented in every aspect. People often asked how people living with dementia (PWD) could handle a conference of this magnitude. DAA leaders (Karen Love & Jackie Pinkowitz) were essential to our success. They understand people living with dementia and when they didn’t they made it a point to listen.

A few examples; there was a quiet room just for PWD where we could go to escape the noise &
confusion, we were given earplugs, a sign that said: “slow down” (for speakers who were talking
too fast). We were always acknowledged first with questions (to help us remember what the
question was). Stickers were placed on the elevator buttons designating the conference floors
and tape on the floor pointed us in the right direction. I have never experienced a conference
with such passion and involvement.

I had the privilege of presenting part of the session on Compensatory Strategies. Although we
started the session with MANY technical difficulties, the session was well received. Enjoy the
viewing and please pass to others who may be struggling with the early challenges of dementia.

Interview with the Reading Eagle

Dealing With Dementia – My Interview with the Reading Eagle

Sunday, April 9, 2017, I was featured on the front page of the Reading Eagle, a local paper in Reading, PA. I was interviewed by Steven Henshaw and below is the link to the original article as well as a beautiful video they created for the piece.

I am so thankful for this opportunity to share with their audience. They were surprised at the responses that they have received and several people have already received support due to this article.  http://www.readingeagle.com/news/article/pike-township-woman-battles-dementia-while-she-helps-others-battle-it-too

Understanding Time with Dementia

Tic Toc What’s Wrong with My Clock – Living Dementia Time

I have searched and searched for a clock that will interpret time for people with dementia. Not only can reading a clock be difficult, at times the whole concept of time is befuddling. Dates, hours, and minutes aren’t always significant to me – they are just numbers and numbers REALLY confuse me!  Clocks and calendars can be so unreliable – they just don’t understand dementia time.

If my calendar is marked “Dr. Smith 10:00”, my head doesn’t want to leave until 10:00. The notion of needing time to get dressed and the 30-minute drive does not enter into my equation. I only relate to 10:00, so that’s when I plan to walk out the door.  As you may suspect, there are situations when this can cause an issue.

Quarter of? Quarter After? Half-past? 20 of? What??? When I look at a digital clock I see four numbers that represent the time. When I look at an analog clock (which I rarely do) I see hands that point to numbers.  Neither of these clocks has a display that reads the quarter or half – they have only numbers.  Although my clock displays 20 after a certain hour, none of my clocks have a display that reads 20 of any hour.  This total imprecision in the way clocks are made has created havoc on many occasions.  It seems I am always either early or late – except when I have an event that does not require leaving the house and it starts on an hour.  At which point my clock is always accurate.

If I am told to be ready at 20 of eleven, my brain is only going to focus on 11:00 and that is when I will be ready.  If I am told half-past 11:00, I expect to leave at 11:00 as none of my clocks say it is half-past anything.  I think of quarter as a coin and there are no coins on my clock either.  I don’t always comprehend this time lingo.  In her beautiful illustration, my neighbor’s daughter, Abigail, relates this to how The Little Mermaid must have felt when she first came on land.  Lost in a confusing world and unable to communicate.

There are moments when this confusion upsets me to the point that I begin to spiral into my “dementia daze zone.”  Although the concept of time has no meaning when I am in my zone, it is not a pretty sight!

Since my dementia diagnosis, Roy (my wonderful husband) and I have spent much effort trying to identify the triggers that cause confusion and find ways to adjust to overcome the obstacle.

As we found that I was continuously early or late and not sure of time schedules, we began the task of trying to figure out what triggered the confusion.

When Roy said something about half past eleven, I realized I had no idea what he meant.  As much as math has become a problem for me so has numbers.  When I look at a clock, I see 11:30 – eleven, three, zero.  I no longer see half-past or thirty.  My brain interprets exactly what is displayed on the clock.  OK, now we know the obstacle – time to make some adjustments.

We corrected my calendar by listing two times.  We list the time we need to leave and the actual appointment time.  If it’s a morning appointment, we also list what time I need to start getting ready.

We adjusted how we speak time.  Time is spoken about as it reads on our digital clock, for example; Twenty of eleven is stated as ten, four, zero.  Eliminating the halves, quarters and “of’s” took some getting used to, but it has really paid off!

Since our household has adjusted the way we talk time, I am rarely late or early.  And my clocks seem to be giving more accurate information.   Hopefully, someday, someone will create a calendar and clock that will adjust to dementia time.  For now, we’ve learned to make adjustments to overcome another hurdle.  So, until the next obstacle gets in our way – we’re living a positive productive life and on time!

Thank you, Abigail Marburger, for bringing color and illustration to this post.  You are a beautiful young lady and an excellent artist!

Love & Laughter,

Laurie

Dementia Christmas Tree Analogy

I’m not sure what dementia is supposed to look like.  Although I have some really good moments when I feel like anything is possible, I also have moments when confusion and disorientation take control of my emotions, my actions and my body functions. Dementia doesn’t just happen over-night.Think of a beautiful tree all decorated with lots of new lights, ornaments and ribbons.  One day one of the bulbs start to flicker.  You tap it a little and it goes back on. Over time, another starts to flicker and another.  Sometimes you can get them to come back on and sometimes they will not come back on.

So, you make adjustments to distract from the burnt-out lights.  Move an ornament or add some tinsel to enhance the lights.  All the while this is happening, your tree remains beautiful and brightens the room.  People who don’t see your tree often or who visit during the day time may not notice the lights flickering or those that are totally off.  But youkathys-christmas-tree know that in time all the lights will fade.

I have times when my lights flicker and some of those “bulbs” don’t want to come back on, for example with math.

For now, enough lights are still shinning that I can try to brighten the world. Physically I am strong and healthy.  My husband Roy and I have found that I CAN do many things that I did before – I just have to do them diff

erently. We try to find an adjustment to compensate for the flickering
bulbs.

Sometimes people say “You don’t look like you have dementia.” and I’m thankful my lights aren’t flickering or that we’ve made the right adjustments.  For now my tree stands tall, bright and beautiful.  With routines and adjustments I able to live a beneficial, happy life. The day may come when all my light bulbs are dim, but for now, I
am thankful for all the days when I can be useful. As my husband reminds me, a Christmas tree is also beautiful during the day when the lights are off.

I am not the same Laurie I was, but with adjustments, planning and routines my lights can still sparkle.

There are many variations using the analogy of dementia being like a Christmas Tree. I think this is such a great analogy that after writing it I put it into a video.  I am honored that Dementia Action Alliance (daanow.org)  is using this video in their network for good fundraising effort.  Dementia Action Alliance networkforgood

Merry Christmas Everyone!

Love & Laughter,

Laurie

© Copyright November 2016 Laurie Scherrer

Did Winnie-The-Pooh have Dementia?

It recently occured to me that A.A. Milne had an understanding of dementia when he created Winnie-The Pooh.  Throughout the exciting stories of The hundred Acre Woods this “chubby little cubby all stuffed with fluffy” often mentions his forgetfullness, cognitive impairments and not being able to say what he wants to get across.20121207_184343

Although some phrases used in 1929 to describe dementia (such as “a bear of very little brain”) may seem unacceptable today, the stories often describe what dementia is like.  And who can resist the words, wisdom and laughter of The Silly Old Bear?  No matter what goes wrong – he ends up smiling!

The Pooh gang was full of new adventures. Some brought challenges, fear and loneliness, but through it all they found a way to turn their journey into laughter. Although Winnie-The-Pooh and gang have been a passion of mine for a long time, I have recently found that I can really relate to many of quotes from Winnie-The-Pooh.

There are days when I just can’t say what I am trying to say – the words just get stuck in my head.  As the Pooh Bear said:

“When you are a bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thinkish inside you is quite different when it gets out into the open and has other people looking at it.andrew-pooh-2007

At times, conversation tires me out because of the amount of energy it takes to comprehend the words.  Here’s how Pooh explains it:


“For I am a bear of very little brain, and long words bother me.”

“It is more fun to talk with someone who doesn’t use long, difficult words, but rather short, easy words (like What’s for lunch).

Like me, the Silly Old Bear was also challenged with memory loss, counting, getting lost and forgetting how to spell (thankfully we live in an age of GPS and spellcheck).  He put it this way:
“Did you ever stop to think, and forget to start again?”

“I did know once, only I’ve sort of forgotten.” 

 “My spelling is Wobbly. It’s good spelling but it Wobbles, and the letters get in the wrong places.” 

“I’m not lost for I know where I am.  But however, image-00367where I am may be lost.”

“Something feels funny.  I must be thinking too hard.”

In the Hundred Acre Woods, Winnie-The-Pooh has a “Thoughtful Spot.” He often goes there, sits down on a log, taps his head, closes one eye and says “Think, Think, Think.”  That is a sign that he is thinking hard. Roy and I also have a thoughtful spot – it’s called a hot tub.

In our thoughtful spot we cry, laugh and “Think, Think, Think.”  Roy and I work constantly to identify obstacles that are causing a challenge and figure out what adjustments we can make to overcome the obstacle.  In Pooh’s words: “Think it over, think it under.”

Poor Winnie-The-Pooh seems to have experienced cabin fever which has clearly led to hallucinations.  Staying at home with little social interaction at times makes me feel like this, only I talk to the dogs rather than a mirror.

Winnie-the Pooh to his reflection: “Oh, Hello.  Am I glad to see you.  It’s more friendly with two.”

The Pooh stories also do a good job summing up how lucky I am to have my best friend as my husband.cruise-9-04-charactors-02-1

“It’s so much more friendly with two.” 

“If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you.”

“We’ll be Friends Forever, won’t we, Pooh?’ asked Piglet. Even longer,’ Pooh answered.” Winnie-the-Pooh” 

“As soon as I saw you, I knew a grand adventure was about to happen.”

And how special my family is:

“A day spent with you is my favorite day.”

“Some people care too much.  I think it’s called love.”

“I think we dream so we don’t have to be apart so long. If we’re in each other’s dreams, we can never be apart.”


“How do you spell Love Piglet?” “You don’t spell it, you feel it.” – Pooh.

As I travel down this dementia journey, I have found love, laughter and inspiration from a Silly Old Bear named Winnie-The-Pooh.  Hopefully I will also be able to bring joy into the lives of others.img_0258

So to all my friends and family wherever you are, I’ll end with some wisdom from Christopher Robin:

“If ever there is a tomorrow when we’re not together . . . there is something you must always remember. You’re braver than you
believe and stronger and smarter than you think. But the most important thing is, even if we’re apart . . . I’ll always be with you.”

Just a note:  Winnie-The-Pooh also said: “Nobody can be uncheered with a balloon.”  I haven’t tried it yet, but I bet it works!

Hope this brings you smiles!
Love  & Laughter,dsc00010

Laurie

grocery shopping with dementia

Adjusting to Dementia #1 Grocery Shopping

People frequently ask how I adjust for the challenges caused with increasing symptoms. No longer being able to multitask, getting confused following directions and lack of focus, does often make it difficult to maintain a house and have some social activities. Sometimes it seems like we no sooner resolve one issue than another pops up.

Roy and I don’t accept the fact that I CAN’T do things anymore. Instead, we try to review each challenge, figure out what the obstacle is and find a way to adjust to make it happen.

Some of the adjustments we have made are so simple and so convenient that some our friends (who don’t have dementia) decided to use these techniques as well. I’m going to start with two affordable Hooks that have helped eliminate some Dementia Daze.

Loosing Keys:
People often tell me they loose their keys all the time. I did too. Except . . . with dementia, we tend to try to put EVERYTHING in a “SAFE Place”! In my case the “Safe Place” was ANYWHERE – – generally the freezer, in back of the cleaning supplies or in the safe, which is also where I put eggs, milk, remotes, etc.. Once we learned where my head thought was a “Safe Place” we knew where to look, until my head decided it found a new “Safe Place”.

Obstacle #1: Finding the keys.
The best way to find the keys is never to lose them. As with most women, I rarely leave the house without my purse. After deciding the best place to keep my keys was with my purse, we attached a hook onto my purse that holds my keys. I am happy now to say, I have not lost my keys in over 6 months! They never leave my purse. With the hook, I can easily move the keys from one purse to another. The hook and key holder are long enough that while my purse is on my arm, I can reach the door to lock it, sturdy enough that it is not going to fall off and small enough that I can slip it into my purse so only the end shows and it doesn’t get in my way. So the answer is: to never lose your keys!!! Keep them attached to your purse! Sorry men, I don’t have an answer for you.

Obstacle #2: The grocery cart and the grocery bags.

As many people with dementia, I have lost my ability to filter sound. Voices become amplified as though I am in a cave. When shopping, noise is everywhere, baby crying, kids running, people talking, carts banging – – chaos!
Moved the creamer – – track it down – – Whew! Finally done – – Go to the checkout – – – Five people in line – – Noise intensifying – – coming from every angle – – Can’t think, sounds like everyone is speaking through a boom box.

The one little outing that others take for granted, is often a tremendous undertaking. Because it creates such mental fatigue, I am usually unable to focus on anything else the rest of the day.

As with many things in our lives, my husband and I have found some tips to make grocery shopping easier me:

Shopping needs to be done before 10:00 in the morning Monday through Thursday when the store is less crowded. Always shop the same store – it reduces the confusion of finding things and becomes a familiar environment with familiar faces.
I am fortunate to live near Giant Food Stores in Gilbertsville. The manager and employees are WONDERFUL! Rebecca in customer service is always smiling. The gentleman at the fish counter, the young man who helps bag the groceries, the women at the checkout and even the man who collects the carts – they don’t know me and I don’t know their names, but they are all familiar faces and make me feel comfortable. More than once when I asked where to find an item, rather than saying an aisle number – they took me to it! Wow! That is such a help.

After a few times of loosing my purse and walking off with someone else’s cart, we came up with a simple solution to keep my cart and purse together. So far it’s worked great!

I made the below video to share with many of my dementia friends at Dementiamentors.org. I only hope all the Giant Gilbertsville Customers don’t find out and start using this idea – well, if so we will have to figure out a new strategy!

TIPS FOR GROCERY SHOPPING WITH DEMENTIA with LAURIE SCHERRER from Dementia Mentors on Vimeo.

Enjoy!

Love & Laughter,

Laurie

The Importance of Daily Routines

I had the pleasure of sharing a discussion with my friend and author Gary Joseph LeBlanc.  In this video chat, we dicuss the importance of a daily routine.  Enjoy!

Importance of Routine Round Table13379e7000cec2ee9107c432fe437b95

In addition to Gary’s relentless work advocating for dementia care, he is involved with training and implementing “The Purple Wristband” program in many hospitals and has written a number of short fun stories and recently published a book for caregivers.  He also owns and operates a Book Store and cares for his Mom (late stages of Alzheimer’s).   His books are all available on Amazon.

Link to Gary’s Book for Caregivers

Living Well & Fading Slow with Dementia

Living Well & Fading Slow by Laurie Scherrer

Dementia is a Slow Process – Sometimes referred to as “Death in Slow Motion”

Dementia does not have a set pattern or schedule. It affects people in brain-cell-deathdifferent ways, often pulling files of “things we don’t do” from the back of our brain. Some PWD (Persons with Dementia) get angry, some cry. Some develop inappropriate sexual behaviors and some become violent. Some have trouble with balance and others have trouble with perception. Some drift off to a far away place, while others get stuck in the past. Some symptoms progress quickly and others are gradual. All symptoms eat away at a part of our memory and our past.

I am one of the estimated 5.3 million Americans diagnosed with Alzheimer’s. I am one of the estimated 200,000 Americans under age 65 trying to adapt to the challenges of each new symptom. I am one of the many PWD advocating for Dementia Awareness and legislative changes to improve the quality of life for PWD and their caregivers.

Alzheimer’s and other dementia related diseases don’t happen over night. They can involve years of challenges, frustrations and changes. Although fiction, the movie “Still Alice” portrayed some of the struggles encountered during the beginning stages of dementia.   The early progression of dementia is extremely frightening. Knowing that you are slowly being robbed of memories and abilities, and knowing the struggles you and your loved ones will deal with gnaws at your heart.

Alzheimer’s is one of many dementia diseases with memory loss and cognitive impairment symptoms strong enough to interrupt the process of daily living. Currently, the only way to diagnosis Alzheimer’s with complete accuracy is by having a neuropathologist examine the brain under a microscope. Since that involves dissecting the brain, the diagnosis will usually be listed as “Suspected Alzheimer’s”.   Regardless of what label is put on the disease, dementia is usually a long process of losing a piece of your brain bit by bit as you, and “those around you”, watch the changes and deal with the challenges. Through most of dementia, there are good moments (seconds, minutes, hours and sometimes days) when the brain seems to give a glimpse of clarity without any confusion.

Frequently people have the idea that PWD don’t know what is happening – not true! At the beginning, most people will deny or find excuses for the changes we are going through and try to cover-up the challenges; but we know. Often, we learn to hide our symptoms so well that people around us don’t suspect what we are going through.   Most fight to stay in their “normal” world, not wanting to admit the ability to function has changed.   Eventually, the confusion and cognitive impairment can no longer be muted.   As each new symptom takes away another piece of our brain, we ache for the “old me” back, for the comprehension we once had. We watch in agony as our aptitudes slip away and we are no longer able to have a career, multi-task, manage money, drive a car, or take care of our garden.

Many PWD have chosen to fight back by sharing their story and to make adjustments so they can continue a life of adventure, love and laughter for as long as possible. With the help of his family, Glenn Campbell remained active in music for five years after his diagnosis of Mild Cognitive Impairment. President Ronald Regan along with his wife, Nancy, continued speaking for 6 years after his diagnosis. Greg O’Brien, who was diagnosed in 2009 at the age of 59, wrote a book and now, six years later, continues to share his story in hopes of increasing awareness of Early On-set Alzheimer’s. Like the Campbells, O’Briens and Regans, with a good support system many PWD accomplish great things before dementia takes total control. All the while, knowing and often planning for what is to come.

My name is Laurie Scherrer and I have Dementia, suspected to be Early Alzheimer’s and FTD. I may be one of the 200,000 people under 65 diagnosed with Alzheimer’s, but I am more than a statistic. I am an active dementia advocate trying to make a difference and increase understanding of dementia and the stigma of helplessness that goes with it.   Yes, I have changed a lot in the last few years and my life will never be like it was.

For now, with adjustments I am living a life full of laughter and purpose.

Love & Laughter.

Laurie

Dementiadaze.com

© Copyright May 2015 Laurie Scherrer