Category Archives: Training

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

Adjusting To Dementia #2 Bed Sheets

5 Replies

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

Adjusting to Dementia #1 Grocery Shopping

6 Replies

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

Let’s Go Away! Trip Turmoil Tip #1

3 Replies

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

4 Replies

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

9 Replies

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

Dealing with Dementia Daze

9 Replies

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 MUST

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

Mix-Up my Routine = Mix-up Me

2 Replies

With dementia, functioning on habit can reduce some of the “Think Work” that is normally considered routine activities. Recently, my schedule was changed and I now know – Mix-up the Routine = Mix-up Me!

For about a year, my sister, Becky called every morning at 7:00 and we talked during her ten-minute drive to work. After her call, I feed & walked the dogs, took my pills, organized dinner, played with the dogs, checked my email and skimmed FB until Stephen called.

Between 8:15 – 8:45 every morning my brother Stephen called and we talked during his ten-minute drive to work. After hanging up, I took my shower, scrubbed my teeth, got dressed, took care of all FB messages, posts, etc. and started checking off the tasks I had recorded in my IPad.

Although I did not intentionally program this as my routine, it became my habit – my time guideline. My day revolved around their morning phone calls.

One-week Becky’s work schedule was changed and Stephen was unable to call me for three days. This insignificant little change threw me into four days of “Dementia Daze” (some call it a fog). Suddenly the “routine tasks” that I performed ever day were a challenge. I couldn’t remember what I had done and sti Confused, Lost Sign ll needed to do. Since I couldn’t accomplish the “routine” tasks the other tasks on my list seemed extremely overwhelming. Unable to process how to rearrange my day, I walked around in circles, pacing the room, trying to think it all through. The feeling of being lost triggered more confusion and frustration. By the time poor Roy got home at 4:15, I was not in a good place.

The fourth day I realized why I was out of sorts and began to make lists to help me get into a new routine and have become adjusted. For those of you who are caregivers, take this to heart. Little changes in the morning can make a big difference in the outcome of our day.

With Love & Laughs,

Laurie Scherrer

Written By Laurie Scherrer