Category Archives: EOAD

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!

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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

Dealing with “the Diagnosis” –

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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-death 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

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:

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.
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.
Keep a trip folder (mine is in my computer and I print them out, but it could be 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
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
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.
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!
The day of departure, pack any items highlighted on the list. Pack the lists and the photos in the suitcase.
Use the photos and lists when returning to make sure 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_mirrors 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.

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

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: Robe alz heros 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

A Small Outing Can Be a BIG Deal

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I am 56 and I have dementia (a.k.a. Progressive Degenerative Impairment, Early Onset Alzheimer’s, etc). I share my thoughts and emotions, in hope that this will help others who are part of this dementia daze. People wonder why I don’t want to go places anymore. Why I don’t like to do the things I used to do. My heart aches to have my old life back. I want to do the things I used to do, go the places I used to go, drive for hours and be with people. I can still do so storenoise me of these things. However; with each “adventure” I have to weigh the consequences. Take for example a simple trip to that mega superstore that we all hate but seem to flock back to. For me the confusion begins the minute I exit the car. Walk through the sliding doors someone’s collecting carts and jamming them together with a clatter, clatter, bang, bang. A child is screaming, a couple fighting, someone stocking shelves, person in front of me blocking the aisle while on her cell talking about an affair. Noise, noise everywhere! Voices become amplified as though I am in a cave. Concentrate, just follow the list. Out of dog treats – pick a different one. Moved the tuna – track it down. Chicken won’t be done for 30 minutes – what else can I get for dinner. That means redoing the menu. OK, what do I need? Noise everywhere, baby crying, kids running, people talking, carts banging. Aisles are closing in. Someone I know, oh help! Talking fast – I hear them, but the words are not connecting. Boxes on the floor, carts in the pathway, chatter, noise – chaos! Whew! Finally done. Double-check the list. Go to the checkout – one lane open, 8 people in line. Noise intensifying – coming from every angle. Can’t think, getting stressed, sounds like everyone is speaking through a boom box. Do they know how loud they are? Need to get out of here! The outcome of an adventure to me often results in such mental fatigue that it takes me days to come out of the fog. The one little outing that others take for granted, is often a tremendous undertaking for me. So yes, please continue to invite us to participate in events; but understand there are times the answer has to be no and there are times we will say yes and at the last minute can’t make it. This is my life and Roy & I are making the best of every day – some times that means staying home is the best option.

Love & Laughter,

Laurie

I am so honored, my friend Gene Suchma (another PWD) drew an illustration to go with my post! Thank you Gene! Visit more of Gene’s art work at http://cartoonsandfineart.com

Written By Laurie Scherrer

“Oh God – Why Me?”

With Dementia The Hardest Part IS Knowing

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In many cases, the hardest part of an illness, is not knowing – waiting for those test results to come back. I used to say; “I can deal with anything – once I know what it is.” With dementia, the hard part IS knowing; knowing what you may do to your family, that they may not be able to care for you alone, that the person you are may totally change.

Although we may not talk about it, people with dementia battle with the constant fears of what we know this disease does. We deal with knowing that some day we may become mean, be incapable of making decisions, loose control of our body functions – and even worse our words and emotions. We cry and pray that we will not hurt or forget our loved ones, and yet know we probably will.
We watch our friends, and sometimes family, turn away – unable or unwilling to cope with the changes. And feel the hurt that causes our caregivers. We long for the days when we could read a book and understand what we read, entertain friends without getting overwhelmed, carry on a conversation without feeling lost, and complete a task without getting frustrated. And know those days will never return.
To be aware of dementia – you need to be aware that we often know what is happening to us and how it is impacting those around us. It hurts not being able to control these changes.
I have decided to grasp ever day of sunshine, knowing that someday I may not be able to walk alone. To find one blessing each day and share it with others, in hopes they will pass one on. And to avoid unnecessary turmoil and negativity so I can stay positive . And to say “Thank You” and “I Love You” often, so it will be remembered.
Caregivers – thank you, from all us.

Love & Laughter, Laurie

Dementia Daze Dosage

Dealing with Dementia Daze

Category Archives: EOAD

Accepting Change

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

Let’s Go Away! Trip Turmoil Tip #1

Famous Dementia Doers Who Made A Difference

“Oh God – Why Me?”