Category Archives: Challenges & Bad Days

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

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

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

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

Some Times You Just Have to Laugh!

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I knew I shouldn’t. I knew it was a bad idea – – but I tried it anyway.

There are times when things go so wrong you just have to laugh. That was my evening last night.

The day started out fairly well. With the help of my alarms and lists, I had a very productive day. Three loads of wash – complete, clean the refrigerator – complete, find a ride Kitchen disaster_0001 to take me to two appointments – complete. I felt so accomplished. And then . . .

Towards the late afternoon, I began to feel out-of-sorts. As my world became clouded and disoriented, and my speech was slow, I decided I was going to make dinner anyway. That’s where I went wrong! Lesson number one; how to ruin a perfect day – when you know your dementia symptoms are taking over stay out of the kitchen!

First let me say, I HATE cooking anyway. I call it “the dirty four letter “C” word”. I don’t have the knack for it and by the time I’m done, my kitchen looks like a war zone. Honestly, I’d rather change the oil on the car than “cxxk”. In 34 years of marriage I have not been able to escape the horrors of the kitchen. OK, I digress – back to the bad day.

While retrieving two eggs, I knocked a bottle of Italian Salad Dressing on the tile floor. This caused me to jump, tossing the two eggs in the refrigerator. One actually survived – the other, not so much! There was egg on all the condiments (ketchup, mustard, relish, salad dressing, horseradish, etc.). There was egg all over the racks, which of course seeped down to the next rack. There was egg on the door and egg on the floor (that could make a song). There was egg on me.

How I wish I could tell you my tale ended there, but no. As I began the process of cleaning out the refrigerator for the second time, the ketchup lid was not on tight, so I added some ketchup to the other end of the kitchen – the floor, the sink and the cabinets.

Poo – “What’s that burning smell? Oh no! – Dinner!” Well done does not describe it! Looking around at the kitchen, which was covered with egg, ketchup and salad dressing. I called my sister and cried. Unfortunately, I did not heed her wisdom; “Stop crying, get out of the kitchen and let Roy clean it up.” I didn’t want him to come home & see this mess!

Feeling totally overwhelmed and frustrated, I headed to clean the kitchen. Dementia symptoms often cause balance issues. When there is ketchup, salad dressing and egg on the floor – it’s just inevitable. BOOM! I slipped, knocked over the dog ‘s water and fell smack into the mess.

At which point my husband, Roy walks in the door, sees me on the floor – wet, wearing Ketchup, dressing and egg. And simply says: “Oh, you’ve been cooking again! I think I’ll put the groceries in the dinning room for now.”

What he did then really made the difference! He pulled out a towel, sat next to me on the floor, gave me a hug and said; “Oh by the way, I decided to pick up a Stromboli so you don’t have to cxxk tonight!” We just burst out laughing. We laughed and we laughed until, yes I started to cry! I cried with laughter and happy tears over how blessed I am to have him as my husband.

Cleanup took awhile, but we got it done. Today, I see last night in slow motion, I see the egg flying through the refrigerator, the ketchup splatting all across the room and my wonderful husband holding me and making me laugh. I love you honey!

Love & Laughter, Laurie

Written By Laurie Scherrer

Mom’s Journey Helps Me Through Mine

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Sixteen years ago today at 2:20p.m., my 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:

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

Dealing with Dementia Daze

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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