Category Archives: Adjusting for 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.

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

Making the bed with dementia

Adjusting To Dementia #2 Bed Sheets

Making two beds does not sound like a big deal.  In the world of dementia anything can set off confusion and start the downfall into the “Dementia Daze Zone”.  Even making two beds can turn into a confusion battle zone.

It was a beautiful Spring day – just right for washing the blankets and sheets and drying them on the line.  As I carried them in the house, the aroma of Spring filled the bedrooms.  Taking in the crispness, I smiled and sang along with my music as I made up the King size bed with the fresh sheets, blankets and pillow cases.  Everything plumped and beautiful I moved on to the queen size bed.

As I placed the fitted sheet on the bed, it wouldn’t fit?  So I turned it.  Still didn’t fit.  And again, and again.  I’ve made this bed hundreds of times. Finally, I managed to get the bottom sheet on and started with the top sheet – same thing.  I could not grasp how to make that bed!  Now, having worked on one bed for over an hour, my anxiety level was high, I was feeling dejected, befuddled and VERY frightened.  I remember thinking – “Why can’t I figure this out? Is this one more challenge we will have to deal with?  Am I now going to need help making a bed?  Yet another task to throw on Roy!”

As usual, Roy stepped in and helped me finish the task. The remainder of the day is a fog to me.  As I ventured into the Dementia Daze Zone I couldn’t process how to cook, my speech became impaired, I had trouble with my balance and everything just seemed mixed-up.

When this happened for the second time, Roy and I knew we had to figure out how to adjust to this new challenge.  What was the obstacle that allowed my head to function to make one bed with no problem, but caused confusion when making the other bed?  As we worked together trying to determine if it was the room, the foot board or . . . no – it’s the sheets!  The King size sheets have stripes; the queen size sheets are solid.  Sure enough, I struggled every time I tried to use solid sheets!

We managed to overcome this obstacle by putting tags on the bottom of our sheets.  It has worked fantastic!  I know many people without dementia who want to do this as well.  You can see the details in the video below.

TIPS ON CHANGINGYOUR BED SHEETS WITH DEMENTIA with LAURIE SCHERRER from Dementia Mentors on Vimeo.

In many cases, there is something that triggers a dementia reaction.  It would be so easy to give up and say “I can’t do that anymore.”  But I don’t want to live my life giving up.  Roy and I work hard together trying to identify the obstacles that cause our challenges and then figure out what adjustments get us around that barrier.  Sometimes, it’s as simple as stripes on sheets.

Love & Laughter,

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

Is it Senseless to Dream and Plan?

To dream the impossible dream . . . or is it? A journey with Dementia

My Dad, who had visited oStand Up To Your Obstacles Pealever 200 countries, often said he regretted that he and my Mom never fulfilled their plans to tour the United States.  My husband, Roy, and I have shared that same dream for many years.  Although we have traveled to many states for various functions, we have never truly “seen” the states. Knowing that at some point my dementia will prohibit such a trip, we set a date and started to plan. 2018 for a four to five week trip exploring our wonderful country. AWESOME!

As we shared our dream with others, the reactions were mostly targeted on why I could NOT take this trip. People were quick to point out my confusion and lack of focus, as well as the expense. Some openly expected me to fail and expressed it as an unrealistic waste of time to try. My excitement started to wane, being replaced with a feeling of loss for a trip I would never take.

Dreams are the foundation of hopes and ideas. They are often the beginning of the challenges weundertake, and the stimulus for our accomplishments.  They are the drive that empowers us to keep moving forward. We dream of getting a new job or a new house, raising a family, being successful, and overcoming obstacles. “Hope is a waking dream” (quote by Aristotle).   Therefore, as you destroy my dream, you also destroy my hope.

“Is it unrealistic to dream and make plans, even though the odds may be against it?”

As I contemplated this, I became inspired by some of the well-known “greats” of the world who accomplished their dreams in spite of their disabilities. Helen Keller, though deaf and blind gained a bachelor’s degree, campaigned on, disability and women’s rights and became a well-respected speaker. Beethoven composed some of the most sublime pieces of music after he was deaf. Bethany Hamilton after loosing her arm in a vicious shark attack, got back on her surfboard and (in addition to many other championships) went on to win First place in the NSSA National Surfing Champion. There are thousands of people who reached for a dream in spite of the odds. Some made it and some did not, but they all battled tremendous obstacles to follow their dream.

When people try to protect me by saying and expecting that I am unable to do something, in essence they are crushing a piece of my spirit. Yes, I have many limitations. As so many others have, we are learning to deal with them. We are learning to make adjustments, working around challenges and obstacles, while still maintaining the ability to love and laugh. Michael Jordon said; “If you accept the expectations of others, especially negative ones, then you never change the outcome.”

Maybe I am setting my expectations too high, or maybe I just need to figure out how to overcome the obstacles. If you take away my hopes and my dreams, I am left with an empty life of watching my degenerative brain impairment slowly make changes to my life. No, I won’t let otheObstacles Don't Have To Stop You Michale Jordanrs squash my dreams! Instead, I will reach for the unreachable star and follow my dreams “no matter how hopeless, no matter how far” (Don Quixote).

Now having made that decision, I need to get started on some plans. Stay tuned for future posts on planning for 2018! Sure, there is a possibility that it may not happen, but think of all the fun we will have planning and dreaming!

Love & Laughter,  Laurie

Written By Laurie Scherrer June 2015

Here’s my Inspiration:  Gomer Pyle “To Dream The Impossibe Dream”

© Copyright June 2015 Laurie Scherrer

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

Sometimes I Think My Dementia is Better and I Feel Like I Could Fly

“I’m getting better! I know I am. My life is running smoother, and I can think. Yeah, let’s celebrate!” I’m whirling around the house singing “I can see clearly now the fog (rain) is gone” and Peter Pan’s “I can Fly!”

BANG! Suddenly the confusion returns and I feel lost again. Life seems fuzzy as though I am caught in a maze and can’t figure out where to go or what to do. Sorting the laundry seems like such a task – what temperature do I use with whites? “But I was getting better! I had a few really clear days! What happened? Why am I back in Dementia Daze?”img_0031

When I feel like I can conquer the world, it’s hard to accept that in fact what a co
nquered was one aspect of dealing with Dementia Daze. I realize part of the reason for “Good Moments” (when my brain seems clear) is largely due to how we have learned to deal with the challenges. Without my IPad, lists and routines I would live in a constant fog.

Once I was able to multitask with extreme efficiency, now my daily activates must be broken into tiny tasks. For example: The Wash Day list consists of a check off sheet for each segment of accomplishing the task. How to separate the clothes, what setting to use for each load, which load goes in the dryer and what clothes go in the iron pile (yes, I still iron his shirts).   These list are created (or are in the process of being created) for various chores within the house.   Cleaning the bathroom seemed overwhelming to me. I didn’t think I did it right. Breaking each task into segments (clean the toilet with the brush, clean above the shower, etc.) helps me to look at it in tiny pieces and not an overwhelming task.

Living with Dementia is a constant circle of changes – Mood, physical, sleep patterns, comprehension, memory and symptoms are always changing. I have very good moments and I have very bad moments and some good/bad moments. My moments can last one hour or one day. The challenge of dementia is learning how to deal with or reduce all the symptoms and changes.

Picture_11196_taken_on_2014-09-07_141920Although the lists, reminders and alarms on my iPad may not always help me stay focused, for now they are helping me stay organized and accomplish my tasks – one at a time.   They are helping me to have more “good moments” to sing “I can see clearly now the fog is gone” and for right now, for this special moment – I CAN FLY!

Love & Laughter,

Laurie

Written by Laurie Scherrer

© Copyright May 2015 Laurie Scherrer