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
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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’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 you 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 differently. 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. The first version I heard of this was written by a wonderful Dementia Advocate, Norm Mac – thanks for the inspirations Norms! I think this is such a great analogy that after writing it I put it into a video.
Merry Christmas Everyone!
Love & Laughter,
Laurie
© Copyright November 2016 Laurie Scherrer
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 Table
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.
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 
different 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
“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?”
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.
Although 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
Packing for a trip can be a challenge for anyone – add dementia to that challenge and it can be a very stressful experience. Packing takes thought, coordination and memory – all of which I struggle with.
In order to avoid getting to my destination with 27 pair of socks and no underwear, it is essential to prepare early and organize every outfit. The alternative is to leave all the packing to Roy. In which case, I would find white shorts and pants with hot pink undergarments – not a good option.
My routine includes these steps:
e a paper folder). Include:
ure nothing is left behind.Knowing that I am prepared and have everything needed helps reduce the travel tension and safeguards that I won’t be embarrassed to show off our pictures (well most of them)! Now it’s time to go have fun – for as long as we can.
Love & Laughter,
Laurie
Written By Laurie Scherrer
Dear Teenager,
To answer your questions, “What does dementia feel like – does it hurt?” I want you to think back on some of the places we went.
When we went to the fun house with all the mirrors everything was funny looking and out of proportion. Although we could tell it was us, it just didn’t look right.
At the big corn maze, we got all turned around and every path looked the same. At first it was fun, but when we thought we would never get out – it was really scary.
After going around & around & around 30 times or so on the “Twister” we couldn’t walk straight and everything was spinning. It was difficult not to run into things.
When you saw ‘Maleficent” in 3D, you told me how real it seemed. When you took the glasses off you could still make it out, but it was all fuzzy and gave you a headache.
My heart was saddened to hear you cry when your classmate unfriended you on FB. In our conversation, you were angry, sad, and frustrated all at the same time.
Dementia is kind of like a really bad experience doing all these things at once. If you take all these feelings and put them together at one time, that is how dementia feels on a bad day.
All these feelings can be mixed together for a few hours or a few days. You ask; “Does it hurt?” Mostly it hurts inside, because I can’t accomplish the things I want to and I know it is not going to get better. But right now is a good moment. So today, for this good moment – – however long it may last, we are going to laugh, take pictures and count our blessing for every moment we can share.”
Love & Laughter, Laurie
Written By Laurie Scherrer
© Copyright 2015 Laurie Scherrer
Recently, when I set out to do a blog on famous PWD (persons with dementia), I was disappointed by the number of people diagnosed with dementia related disease (such as Alzheimer’s) that didn’t speak out. How sad.
In my research of over 200 “famous people” PWD, I found exactly 5 who did something to make a difference. The others kept their diagnosis hidden until after their death or care facility placement, when the family announced they had been suffering for years.
These five promoted dementia awareness, fought for legislative changes, wrote a book or song and/or became an Alzheimer’s Advocate.
So I say THANK YOU for being a “Dementia Doer.”
1- Ronald Reagan – In 1994, he informed the Nation he had Alzheimer’s in this hand written note: http://www.reagan2020.us/speeches/announcement_of_alzheimers.asp
2- Charlton Heston – He informed the public he was diagnosed with Alzheimer’s in this letter: http://www.fanunity.com/heston/alzheimers_text.html
3- Rita Hayworth – EOAD first noticeable at age 46. When she died, at age 68, President Ronald Regan included in his statement: “Rita became known for her struggle with Alzheimer’s disease. Her courage and candor, and that of her family, were a great public service in bringing worldwide attention to a disease which we all hope will soon be cured.”
4- Glenn Campbell – After being diagnosed with Alzheimer’s in 2011 he went on to complete his “Goodbye Tour” with three of his children.
5-Patricia “Pat” Summit – The book she wrote, “Sum it Up”, covers her life including her experience being diagnosed and living with Alzheimer’s. She is currently an advocate for people with Alzheimer’s Disease.
During the last 18 months, I have met the most remarkable PWDs who are using their precious cognitive time to make a difference. These “Dementia Doers” continue to: promote dementia awareness, fight for legislative changes, write books, blogs or websites, and/or act as mentors to other PWD.
I want to say Thank You to MY list of famous PWD, including: Robe
rt Bowles, Harry Urban, Norms McNamara, David Kramer, Chris Roberts, Paulan Gordon, Susan Suchan, Karen Francis, Rick Phelps, Truthful Kindness, and Jennifer Bute. Like Rita Hayworth and Pat Summit, most of these people were diagnosed before age 58.
Thank you for letting the world know our brains may be dyeing, but we’re still having some fun and trying to DO SOMETHING to help others and make a difference. Ronald Regan said: “At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done… I now begin the journey that will lead me into the sunset of my life.”
Love & Laughter, Laurie
Written By Lauire Scherrer
Dementia Daze Dosage 