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

What They Don’t tell You About Dementia

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When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:

My working days were over
I needed to “Get my affairs in order and see an attorney”
The time would come when I wouldn’t recognize my loved ones
For any additional information we should go to the Alzheimer’s Association Website
I may experience “sun-downing” in the late afternoons
Come back in six months to see how rapidly you have progressed

What the doctors SHOULD have told us:

There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break. Try listening to some music or taking a nap.
It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other. dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out. Enjoy life, friends, family and activities for as long as you can.
Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting. Get involved in advocacy work to educate about dementia. Contact Dementia Action Alliance at daanow.org to get started.
You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone).You may feel confused and disoriented and find it difficult to think. There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile). It’s OK to admit you are having a bad day.
Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.

Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful. Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.

My motto is: I don’t want just to survive – – I want to live and thrive!

Love & Laughter,

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

Speaking at the 2017 Re-Imagine Life with Dementia Conference

Dealing With Dementia – My Interview with the Reading Eagle

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Sunday, April 9, 2017, I was featured on the front page of the Reading Eagle, a local paper in Reading, PA. I was interviewed by Steven Henshaw and below is the link to the original article as well as a beautiful video they created for the piece.

I am so thankful for this opportunity to share with their audience. They were surprised at the responses that they have received and several people have already received support due to this article. http://www.readingeagle.com/news/article/pike-township-woman-battles-dementia-while-she-helps-others-battle-it-too

Tic Toc What’s Wrong with My Clock – Living Dementia Time

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I have searched and searched for a clock that will interpret time for people with dementia. Not only can reading a clock be difficult, at times the whole concept of time is befuddling. Dates, hours, and minutes aren’t always significant to me – they are just numbers and numbers REALLY confuse me! Clocks and calendars can be so unreliable – they just don’t understand dementia time.

If my calendar is marked “Dr. Smith 10:00”, my head doesn’t want to leave until 10:00. The notion of needing time to get dressed and the 30-minute drive does not enter into my equation. I only relate to 10:00, so that’s when I plan to walk out the door. As you may suspect, there are situations when this can cause an issue.

Quarter of? Quarter After? Half-past? 20 of? What??? When I look at a digital clock I see four numbers that represent the time. When I look at an analog clock (which I rarely do) I see hands that point to numbers. Neither of these clocks has a display that reads the quarter or half – they have only numbers. Although my clock displays 20 after a certain hour, none of my clocks have a display that reads 20 of any hour. This total imprecision in the way clocks are made has created havoc on many occasions. It seems I am always either early or late – except when I have an event that does not require leaving the house and it starts on an hour. At which point my clock is always accurate.

If I am told to be ready at 20 of eleven, my brain is only going to focus on 11:00 and that is when I will be ready. If I am told half-past 11:00, I expect to leave at 11:00 as none of my clocks say it is half-past anything. I think of quarter as a coin and there are no coins on my clock either. I don’t always comprehend this time lingo. In her beautiful illustration, my neighbor’s daughter, Abigail, relates this to how The Little Mermaid must have felt when she first came on land. Lost in a confusing world and unable to communicate.

There are moments when this confusion upsets me to the point that I begin to spiral into my “dementia daze zone.” Although the concept of time has no meaning when I am in my zone, it is not a pretty sight!

Since my dementia diagnosis, Roy (my wonderful husband) and I have spent much effort trying to identify the triggers that cause confusion and find ways to adjust to overcome the obstacle.

As we found that I was continuously early or late and not sure of time schedules, we began the task of trying to figure out what triggered the confusion.

When Roy said something about half past eleven, I realized I had no idea what he meant. As much as math has become a problem for me so has numbers. When I look at a clock, I see 11:30 – eleven, three, zero. I no longer see half-past or thirty. My brain interprets exactly what is displayed on the clock. OK, now we know the obstacle – time to make some adjustments.

We corrected my calendar by listing two times. We list the time we need to leave and the actual appointment time. If it’s a morning appointment, we also list what time I need to start getting ready.

We adjusted how we speak time. Time is spoken about as it reads on our digital clock, for example; Twenty of eleven is stated as ten, four, zero. Eliminating the halves, quarters and “of’s” took some getting used to, but it has really paid off!

Since our household has adjusted the way we talk time, I am rarely late or early. And my clocks seem to be giving more accurate information. Hopefully, someday, someone will create a calendar and clock that will adjust to dementia time. For now, we’ve learned to make adjustments to overcome another hurdle. So, until the next obstacle gets in our way – we’re living a positive productive life and on time!

Thank you, Abigail Marburger, for bringing color and illustration to this post. You are a beautiful young lady and an excellent artist!

Love & Laughter,

Laurie

Dementia Christmas Tree Analogy

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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

Did Winnie-The-Pooh have Dementia?

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It recently occured to me that A.A. Milne had an understanding of dementia when he created Winnie-The Pooh. Throughout the exciting stories of The hundred Acre Woods this “chubby little cubby all stuffed with fluffy” often mentions his forgetfullness, cognitive impairments and not being able to say what he wants to get across. 20121207_184343

Although some phrases used in 1929 to describe dementia (such as “a bear of very little brain”) may seem unacceptable today, the stories often describe what dementia is like. And who can resist the words, wisdom and laughter of The Silly Old Bear? No matter what goes wrong – he ends up smiling!

The Pooh gang was full of new adventures. Some brought challenges, fear and loneliness, but through it all they found a way to turn their journey into laughter. Although Winnie-The-Pooh and gang have been a passion of mine for a long time, I have recently found that I can really relate to many of quotes from Winnie-The-Pooh.

There are days when I just can’t say what I am trying to say – the words just get stuck in my head. As the Pooh Bear said:

“When you are a bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thinkish inside you is quite different when it gets out into the open and has other people looking at it.

At times, conversation tires me out because of the amount of energy it takes to comprehend the words. Here’s how Pooh explains it:

“For I am a bear of very little brain, and long words bother me.”

“It is more fun to talk with someone who doesn’t use long, difficult words, but rather short, easy words (like What’s for lunch).

Like me, the Silly Old Bear was also challenged with memory loss, counting, getting lost and forgetting how to spell (thankfully we live in an age of GPS and spellcheck). He put it this way:
“Did you ever stop to think, and forget to start again?”

“I did know once, only I’ve sort of forgotten.”

“My spelling is Wobbly. It’s good spelling but it Wobbles, and the letters get in the wrong places.”

“I’m not lost for I know where I am. But however, where I am may be lost.”

“Something feels funny. I must be thinking too hard.”

In the Hundred Acre Woods, Winnie-The-Pooh has a “Thoughtful Spot.” He often goes there, sits down on a log, taps his head, closes one eye and says “Think, Think, Think.” That is a sign that he is thinking hard. Roy and I also have a thoughtful spot – it’s called a hot tub.

In our thoughtful spot we cry, laugh and “Think, Think, Think.” Roy and I work constantly to identify obstacles that are causing a challenge and figure out what adjustments we can make to overcome the obstacle. In Pooh’s words: “Think it over, think it under.”

Poor Winnie-The-Pooh seems to have experienced cabin fever which has clearly led to hallucinations. Staying at home with little social interaction at times makes me feel like this, only I talk to the dogs rather than a mirror.

Winnie-the Pooh to his reflection: “Oh, Hello. Am I glad to see you. It’s more friendly with two.”

The Pooh stories also do a good job summing up how lucky I am to have my best friend as my husband. cruise-9-04-charactors-02-1

“It’s so much more friendly with two.”

“If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you.”

“We’ll be Friends Forever, won’t we, Pooh?’ asked Piglet. Even longer,’ Pooh answered.” Winnie-the-Pooh”

“As soon as I saw you, I knew a grand adventure was about to happen.”

And how special my family is:

“A day spent with you is my favorite day.”

“Some people care too much. I think it’s called love.”

“I think we dream so we don’t have to be apart so long. If we’re in each other’s dreams, we can never be apart.”

“How do you spell Love Piglet?” “You don’t spell it, you feel it.” – Pooh.
As I travel down this dementia journey, I have found love, laughter and inspiration from a Silly Old Bear named Winnie-The-Pooh. Hopefully I will also be able to bring joy into the lives of others.

So to all my friends and family wherever you are, I’ll end with some wisdom from Christopher Robin:

“If ever there is a tomorrow when we’re not together . . . there is something you must always remember. You’re braver than you
believe and stronger and smarter than you think. But the most important thing is, even if we’re apart . . . I’ll always be with you.”

Just a note: Winnie-The-Pooh also said: “Nobody can be uncheered with a balloon.” I haven’t tried it yet, but I bet it works!

Hope this brings you smiles!
Love & Laughter,

Laurie

Adjusting To Dementia #2 Bed Sheets

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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

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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

Dementia Daze Dosage

Dealing with Dementia Daze

Accepting Change

What They Don’t tell You About Dementia

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

Speaking at the 2017 Re-Imagine Life with Dementia Conference

Dealing With Dementia – My Interview with the Reading Eagle

Tic Toc What’s Wrong with My Clock – Living Dementia Time

Did Winnie-The-Pooh have Dementia?

Adjusting To Dementia #2 Bed Sheets

Adjusting to Dementia #1 Grocery Shopping