Category Archives: Living with Alzheimer’s

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

Walking For Alzheimer’s Association

Roy & I will once again be participating in the Alzheimer’s Walk.  This year – we have a walk just for Berks County!!! YEAH!!  The 2 mile walk will be held at Penn State Berks Campus on Saturday October 8th, 2016.  We have been hoping that the Alzheimer’s Association will increase their training and support efforts in the Berks County Area (currently they mainly service Philadelphia area).  We are encouraged that this may be a step in that direction.

Wimg_3160-1e were so blessed last year with 29 people walking in our team “Laurie’s Loves”!  What a fabulous show of support!  Our goal was $2,500 – we raised $2,725!!  I am hoping we can reach $3,000 this year.  Thank you all so much for the love & support – by joining us on the walk or supporting our efforts with a contribution!

If you would like to join Laurie’s Loves and walk with us or if you would like to make a donation for the walk the below link will take you directly to website page:

http://act.alz.org/site/TR/Walk2016/General?px=9374300&pg=personal&fr_id=9251

If you prefer to mail a check – please complete the form on mimg_4715y walk page and mail it with your check

 

Thank you all for all your love & support!

Roy & Laurie

Virtual Lights of Love

Virtual Lights of Love Candlelight Service

November is National Alzheimer’s Awareness Month. Each year the virtual Lights of Love Candlelighting Service is held to promote dementia awareness by remembering those with dementia and those who were taken by dementia.  To particpate in this event, my family spent part of their Thanksgiving Day reminding me how that they will always be here to support me. I love you all.

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

Dealing with Dementia Daze

In Aug 2013, when I was diagnosed with Early Onset Alzheimer’s and FTD, I thought it meant the end of my life. Like me, the doctors, friends and family seemed to automatically focus on the last phase of dementia. Since the doctor suggested we see an attorney and “get our affairs in order”, I pictured myself over night becoming the person who couldn’t take care of myself and couldn’t remember my loved ones.

This is so far from reality. Reality is – –

There Is Life after Diagnosis!

How much and what quality depends in part, on how well we recognize and react to the changes. Although we cannot stop the progression of this disease and the changes that are happening to me, together we have learned to tackle some of the challenges. These are some of the ways we have adapted to reduce or deal with Dementia Daze Days.

Avoid Stress and Drama whenever possible!

Stress has a strong impact on dementia symptoms and can cause days of confusion.   There are times I have to just walk away or hang-up and tune it out.

Music is a MUSTIMG_1224

For those stressful moments that can’t be avoided, I put on heavy headphones, listen to MY music and allow my mind to escape. My iPad and our stereo are programmed with my music selection.

Restaurants

Yes we can still dine out (albeit, financial status may prohibit how often). To reduce the confusion we go to restaurants during off hours, like 3:00 or 4:00 when there are not as many people. We ask for a table away from heavy traffic flow and not by a TV.  This creates a better environment for me to stay focused.

Grocery stores

We found the store activity is lowest very early in the morning. At our store if you are buying lottery tickets or cigarettes, they have to check you out at customer service – some days it is worth spending a dollar on a lottery ticket! Who knows, some day I may actually win!

Mall Shopping –

Haven’t figured this one out yet. Shop on-line.

Daily Activities

My iPad has become my lifeline! My day begins with checking my iPad calendar. I have notifications to feed the dogs, take my pills, complete tasks, etc. Each event has a different ring tone and displays what the event is – thus I have verbal and written instructions.  It contains all my contacts (address, phone number, email, birthday, and spouses name), scheduled appointments, daily tasks, medications, doctor information, and my daily journal. All the information I would need is in one place. For me it is a necessity.

Telephone Calls

I keep pen & paper (or iPad) near the phone so I can make notes. If I don’t know the caller – it goes to the answering machine. “Telephone Tips for Calling PWD” (available on http://www.dementiadaze.com) is printed and handed to any business that I deal with.

Log all changes and discuss them!

We keep a record of changes, new symptoms, worsening conditions, odd behavior, etc., we discuss them and share with the neurologist. When necessary, we discuss what modifications may be needed.

Escape

Our hot tub is our refuge! That is where we escape to talk, cry, laugh, or just be together. No phones, no electronics, no noise, no confusion. Together, we deal with changes, make plans, discuss the future and make new dreams.

Just Say NO!

This was one of the most difficult challenges for me. Sometimes we have to back out of a scheduled event such as a wedding, a party, or having guests over. Experiencing Dementia Daze is like digging for a coin in a muddy swamp on a foggy day – everything is murky and unclear. The more you move around, the deeper you and your goal sink. The deeper you sink, the more difficult it is to get back out. The best thing to do is sit back and let the water settle and the fog clear.

We are committed to recognize changes and make adjustments to reduce the challenges for as long as we can. I am so blessed to have a wonderful husband to walk beside me through this journey and family to give us both support.

Love & Laughter,

Laurie

Written By Laurie Scherrer

Telephone Tips For Calling People With Dementia

Telephone Tips for calling PWD (Persons With Dementia)EPSON MFP image

  • SPEAK CLEARLY & SLOWLY
    • One sentence, slight pause, next sentence, etc.
    • Sounds, Words & Meanings can become distorted
    • Sentences can run together and loose meaning
    • Brain is trying to process the conversation AND the meaning
  • DON’T YELL
    • Dementia doesn’t mean hearing impaired
  • STOP ALL OTHER CONVERSATIONS & DISTRACTIONS
    • Mentally & Verbally – concentrate on the call
    • Your small distractions can cause confusion
  • STATE EXACTLY WHAT YOU NEED & WHERE TO FIND IT
    • Account Numbers, Billing Date, etc. – explain where to find the information
    • Request Information one at a time – consecutive steps are confusing
  • REPEAT NUMBERS & IMPORTANT DETAILS
    • Processing numbers is Difficult – Say only THREE numbers or less at a time
  • AVOID TRANSFERRING THE CALL
    • If you MUST Transfer the Call
      • Give the name & number you are transferring to
      • Stay on the line and give the new person the caller’s name & explain the situation
    • CONFIRM ALL IMPORTANT INFORMATION
      • e. “Just to confirm, can you read me back the number I gave you”
    • BE THE LAST TO HANG UP
      • Give your caller time to process
      • It takes longer to process information – this ensures that all questions have been asked
    • LEAVING A MESSAGE
      • Provide all informationphone-calls
        • Date & Time of the call
        • Your Name
        • Company Name
      • State important information at LEAST TWICE
        • Phone Number, Company Name, Your Name and extension

 Many of these basic telephone etiquette tips can make a big difference in eliminating confusion for PWD (Persons With Dementia). Dementiadaze Logo2