Category Archives: FrontoTemporal Dementia

Accepting Change

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

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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

grocery shopping with dementia

Adjusting to Dementia #1 Grocery Shopping

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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

Living Well & Fading Slow with Dementia

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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

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“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

Mom’s Journey Helps Me Through Mine

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Sixteen years ago today at 2:20p.m., myimage 00105 Mom (“Muzzy”) lost her battle with cancer.  I miss her – her smile and laugh, her caring attitude and her power of prayer.   For 2 years and 6 months, I had the pleasure of being her caregiver.  I was the privileged one who got to be with her every day. I believe that journey was preparing me for the journey I now face.

Up until the last three weeks of her life, Muzzy filled her days encouraging others through phone calls, sending cards and letters and praying. Everyday she took her address book and one at a time prayed for every person in her book. There were times she was in severe pain as the cancer was ripping through her bones and organs and she asked someone to read the names for her – one at a time.  Although she didn’t have the strength to hold the book herself – she still prayed for every individual.

In so many ways, Muzzy is still here with me today.  Sometimes I pass the bedroom door and see her laying there praying with her address book. Often it is her words and attitude that help me deal with the challenges of dementia.

Why do I write about living with dementia? Through Muzzy I learned that there is more joy and happiness in focusing on others rather than our illness.

With every article I write, I pray that God will use my challenges, emotions and symptoms to touch someone in a special way. To provide caregivers some insight on what their loved one may be feeling. To encourage PWD (Persons With Dementia) that life does not end after diagnosis – clutch every moment you can. To increase awareness of the progression and challenges of dementia – it starts with confusion and frustration and is so much more than memory loss.

I find joy in every comment from a caregiver saying how much a post helped them relate to their loved one, in every comment from a PWD saying how much it means to them and also with every blog that is shared. As I pray for each person who comments about the struggles – I am happy to know I can still make a difference.

God blessed me with a Mom who set an example of how to find joy in the face of adversities. I share her daily prayer from Psalms 19:14, “ Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O Lord, my strength and my redeemer.”

I love and miss you Muzzy.

Laugh & Laughter,

Laurie

Written By Laurie Scherrer

Let’s Go Away! Trip Turmoil Tip #1

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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.Packing Blue Stripped Shirt

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:

  1. Always wear an outfit once before going on a trip – even if just around the house. This helps coordinate everything that needs to go with it.
  2. Take a picture of the outfit and list all the items needed on the photo. I usually use a post-it note so I can make quick changes if needed.
  3. Keep a trip folder (mine is in my computer and I print them out, but it could bPacking Multicolor Shirte a paper folder). Include:
    1. The labeled pictures
    2. A list of all “Essential Items” other than clothing that will be needed for a trip (deodorant, shampoo, toothpaste, etc.).
    3. A list of “May Need Items”
      1. Beach: Water Shoes, Beach Towels, Sun Glasses, Sun Lotion, etc.
      2. Adventures: gloves for zip lining, boots for horseback riding, photos for visiting Mom, money pouch, evening purse, etc.
    4. A list of all medications
  4. Start preparing for the trip a week in advance. From the folder:
    1. Select which outfits to wear one day at a time and check each item on the list to make sure it is ready to go (clean, pressed, etc.)
    2. Check each of the “Essential Items” to make sure there is a sufficient supply
    3. Check the “May Need Items” and make sure they are ready to go
  5. Two days before Trip
    1. Layout each item from the photos – checking off the items as they are laid out
    2. Layout each item from the “Essential” and “May Need” List – checking them off. Highlight any items that need to be added the day of departure.
  6. The day before, have Roy pack my suitcase verifying that I have everything on the photos or lists.  He packs a suitcase much better than me anyway!
  7. The day of departure, pack any items highlighted on the list. Pack the lists and the photos in the suitcase.
  8. Use the photos and lists when returning to make sPacking black gownure 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 – This is How Dementia Feels

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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.

crazy_mirrorsDementia 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.

  • Life seems distorted and out of proportion – things just don’t look right.
  • I feel trapped in a maze of wacky mirrors – and can’t figure out which way to turn.
  • My surroundings seem off balance – it’s difficult not to run into things, drop them or knock them over.
  • Everything seems out of focus – my whole world seems fuzzy and sometimes causes a headache.
  • My emotions take control – I am frustrated, sad and angry all at the same time.

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

Famous Dementia Doers Who Made A Difference

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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: Robealz herosrt 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