Category Archives: Adjusting for Dementia

Dementia Doesn't Stop this Travel Enthusiast AARP

AARP The Face of Dementia – Living with Hope

Living with Hope.


I was featured on AARP! ~Click to Watch the video!

 Currently, there is no hope for a cure, but there is hope for having a meaningful life after diagnosis. I am thankful for the opportunity to continue to share how those who have dementia can live with HOPE and continue to THRIVE in their daily lives. ~Laurie

Dementia Doesn't Stop this Travel Enthusiast AARP


Here’s another promo video that gives a brief summary of the series. ~Enjoy

Face of Dementia Living with Hope Play Video‘Click the video image’ to watch on their website.

Accepting Change

Like the waves hitting the beach, life is constantly changing and we are constantly changing with it.  Change is an inevitable part of life.  We develop, we age.   We laugh, we cry.  We dislike, we love.   And as our lives transform, we either try to deny or resist the change, take action to modify the change, and/or we embrace the transformation and work with (or through) it.

Although there are many things in our lives we can take control of, not all changes can be modified. Not all changes are welcome.   There will always be people, circumstances, occurrences and events that we don’t like and don’t want to have invade our perfect world.

For my husband Roy and I, the major changes came in the form of illness.  For me, it was a diagnosis of Early-onset Alzheimer’s and Frontal-temporal Degeneration.   For Roy, it was a diagnosis of Common Variable Immune Deficiency.  Both are life altering medical conditions that have and will continue to impact our plans, dreams and daily activities.

Throughout my life I have always believed in the power of a positive attitude and grasping each challenge as an opportunity.  My house, office and car were a collection of positive affirmations like “If I think I can or can’t – I’m absolutely right”, “If it’s to be, It’s up to me”,

“I have a choice – I can let my mind shape me or I can shape my mind” and many more.  Mahatma Gandhi’s famous quote outlines how beliefs shape destiny: “Your beliefs become your thought, Your thoughts become your words, your words become your actions, Your actions become your habits, Your habits become Your values, Your values become your destiny”.

Although positive thinking is not always easy, staying in the habit helped me to accept and often excel through some of my more difficult challenges.  However, when I was diagnosed with dementia, I found myself drifting away from a positive attitude.  I felt that I couldn’t change things and IT wasn’t up to me and I had NO choice. I felt my little engine that once could, had no control to make it up this hill of life. I was becoming sad and depressed.

After my self-inflicted pity party, I realized that I needed to accept my diagnosis and the changes it would bring and make the best of whatever time I could.  I found that the stress and worry of denial and non-acceptance was draining what energy I did have.

“Accept what you cannot change.  Change what you cannot accept”.  After a period of grief, anger, and denial, I began to seek my old self.  I found that once I accepted the changes my life was going to take, I began to appreciate the joy and beauty around me.  As my stress lessened – my confusion lessed and my energy level increased.  The more I embraced the change with a positive attitude, the more Roy and I were able to discover ways to reduce the amount of “dementia daze” (the state of confusion and disorientation) and the more I was able to feel joy again.

To me, embracing change means accepting that it is unescapable and with a positive disposition determining how to make the best of it.  Together, Roy and I are learning to embrace our challenges and modify our objectives and our life style. We are finding some of the things that trigger confusion and figuring out ways to overcome the hurdles that prevented me from enjoying life. “I can’t” has become “How CAN I”.

Yes, I still have challenges and days of confusion, disorientation, fear and emotions. However, most of my days are full of purpose and love.  While embracing the challenges of change, we are also embracing every moment with joy.

Love & Laugher,

Laurie

I no longer wanted just to survive with dementia, I wanted to thrive!

When I was diagnosed with Early On-Set Alzheimer’s and FTD (Fronto-Temporal Degeneration/Dementia) the doctor’s only advise was “Go home, put your affairs in order, see an Elder Care Attorney and come back in six months.”  We left his office with the understanding that I would forget my loved ones and die at any time.

This same doom and gloom diagnosis is given to most people diagnosed with dementia.  Although the average life expectancy is eight to ten years, there is no encouragement of living a meaningful life.  No strategies are offered to identify what triggers dementia episodes and what might help.  And no information is provided on support groups or how to connect with others living this journey.  

At first, I accepted the doctor’s verdict.   Wallowing in self-pity and low esteem, I gave up and set about to prepare for the inevitable.  Then I found that there are many people living a meaningful life after diagnosis!  Through Dementia Mentors, Virtual Memory Cafes, and Alzheimer’s Speaks Radio, I learned to identify and avoid some of the triggers that aggravate my dementia.  Together, my husband Roy and I discovered ways to compensate for many of the hurdles that cause confusion and found that there are many tactics to help people with dementia to live a productive life.

Socializing with other people living with dementia in support groups was wonderful, but I wanted more.  I no longer wanted just to survive – I wanted to Thrive!  Although I knew I could no longer handle the responsibilities and stress of a job (or the driving), I longed to feel like my life had a purpose.  Then I connected with the Dementia Action Alliance and my doors were opened.  Finally, a group that focused on quality of life!

The Dementia Action Alliance USA (DAA) is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia.  I have been honored to work with the DAA on many projects/committees and had the privilege of speaking at Re-imagine Life with Dementia Conference in June.

The DAA is making a difference now, not waiting until a cure is found.  Funds are needed to continue and expand the fabulous programs and support they offer to make meaningful life possible while living with dementia.

 

Please consider helping the DAA to improve quality of life for people living with dementia.  Your donation can be in honor of someone living with dementia or in memory of a loved one.  To learn more about DAA or make a donation please visit DAAnow.org or click this link:  https://daanow.org/donate-now/

Thank you for caring and for all your support.

Love & Laughter,

Laurie

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