Category Archives: Living with Dementia

Some Times You Just Have to Laugh!

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_0001to 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

© Copyright 2015 Laurie Scherrer

Mom’s Journey Helps Me Through Mine

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

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

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

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

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

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

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

I love and miss you Muzzy.

Laugh & Laughter,

Laurie

Written By Laurie Scherrer

Let’s Go Away! Trip Turmoil Tip #1

Packing for a trip can be a challenge for anyone – add dementia to that challenge and it can be a very stressful experience. Packing takes thought, coordination and memory – all of which I struggle with.Packing Blue Stripped Shirt

In order to avoid getting to my destination with 27 pair of socks and no underwear, it is essential to prepare early and organize every outfit.   The alternative is to leave all the packing to Roy. In which case, I would find white shorts and pants with hot pink undergarments – not a good option.

My routine includes these steps:

  1. Always wear an outfit once before going on a trip – even if just around the house. This helps coordinate everything that needs to go with it.
  2. Take a picture of the outfit and list all the items needed on the photo. I usually use a post-it note so I can make quick changes if needed.
  3. Keep a trip folder (mine is in my computer and I print them out, but it could bPacking Multicolor Shirte a paper folder). Include:
    1. The labeled pictures
    2. A list of all “Essential Items” other than clothing that will be needed for a trip (deodorant, shampoo, toothpaste, etc.).
    3. A list of “May Need Items”
      1. Beach: Water Shoes, Beach Towels, Sun Glasses, Sun Lotion, etc.
      2. Adventures: gloves for zip lining, boots for horseback riding, photos for visiting Mom, money pouch, evening purse, etc.
    4. A list of all medications
  4. Start preparing for the trip a week in advance. From the folder:
    1. Select which outfits to wear one day at a time and check each item on the list to make sure it is ready to go (clean, pressed, etc.)
    2. Check each of the “Essential Items” to make sure there is a sufficient supply
    3. Check the “May Need Items” and make sure they are ready to go
  5. Two days before Trip
    1. Layout each item from the photos – checking off the items as they are laid out
    2. Layout each item from the “Essential” and “May Need” List – checking them off. Highlight any items that need to be added the day of departure.
  6. The day before, have Roy pack my suitcase verifying that I have everything on the photos or lists.  He packs a suitcase much better than me anyway!
  7. The day of departure, pack any items highlighted on the list. Pack the lists and the photos in the suitcase.
  8. Use the photos and lists when returning to make sPacking black gownure nothing is left behind.

Knowing that I am prepared and have everything needed helps reduce the travel tension and safeguards that I won’t be embarrassed to show off our pictures (well most of them)! Now it’s time to go have fun – for as long as we can.

Love & Laughter,

Laurie

Written By Laurie Scherrer

Dear Teenager – This is How Dementia Feels

Dear Teenager,

To answer your questions, “What does dementia feel like – does it hurt?” I want you to think back on some of the places we went.

When we went to the fun house with all the mirrors everything was funny looking and out of proportion. Although we could tell it was us, it just didn’t look right.

At the big corn maze, we got all turned around and every path looked the same.   At first it was fun, but when we thought we would never get out – it was really scary.

After going around & around & around 30 times or so on the “Twister” we couldn’t walk straight and everything was spinning. It was difficult not to run into things.

When you saw ‘Maleficent” in 3D, you told me how real it seemed. When you took the glasses off you could still make it out, but it was all fuzzy and gave you a headache.

My heart was saddened to hear you cry when your classmate unfriended you on FB. In our conversation, you were angry, sad, and frustrated all at the same time.

crazy_mirrorsDementia is kind of like a really bad experience doing all these things at once. If you take all these feelings and put them together at one time, that is how dementia feels on a bad day.

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

All these feelings can be mixed together for a few hours or a few days. You ask; “Does it hurt?” Mostly it hurts inside, because I can’t accomplish the things I want to and I know it is not going to get better. But right now is a good moment. So today, for this good moment – – however long it may last, we are going to laugh, take pictures and count our blessing for every moment we can share.”

Love & Laughter,  Laurie

Written By Laurie Scherrer

© Copyright 2015 Laurie Scherrer

Dealing with Dementia Daze

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 MUSTIMG_1224

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

Telephone Tips for calling PWD (Persons With Dementia)EPSON MFP image

  • SPEAK CLEARLY & SLOWLY
    • One sentence, slight pause, next sentence, etc.
    • Sounds, Words & Meanings can become distorted
    • Sentences can run together and loose meaning
    • Brain is trying to process the conversation AND the meaning
  • DON’T YELL
    • Dementia doesn’t mean hearing impaired
  • STOP ALL OTHER CONVERSATIONS & DISTRACTIONS
    • Mentally & Verbally – concentrate on the call
    • Your small distractions can cause confusion
  • STATE EXACTLY WHAT YOU NEED & WHERE TO FIND IT
    • Account Numbers, Billing Date, etc. – explain where to find the information
    • Request Information one at a time – consecutive steps are confusing
  • REPEAT NUMBERS & IMPORTANT DETAILS
    • Processing numbers is Difficult – Say only THREE numbers or less at a time
  • AVOID TRANSFERRING THE CALL
    • If you MUST Transfer the Call
      • Give the name & number you are transferring to
      • Stay on the line and give the new person the caller’s name & explain the situation
    • CONFIRM ALL IMPORTANT INFORMATION
      • e. “Just to confirm, can you read me back the number I gave you”
    • BE THE LAST TO HANG UP
      • Give your caller time to process
      • It takes longer to process information – this ensures that all questions have been asked
    • LEAVING A MESSAGE
      • Provide all informationphone-calls
        • Date & Time of the call
        • Your Name
        • Company Name
      • State important information at LEAST TWICE
        • Phone Number, Company Name, Your Name and extension

 Many of these basic telephone etiquette tips can make a big difference in eliminating confusion for PWD (Persons With Dementia). Dementiadaze Logo2

Mix-Up my Routine = Mix-up Me

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 stiConfused, Lost Signll 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

© Copyright February 2015 Laurie Scherrer

Last Night I Wept

Last night I wept.  I wept with an uncontrollable cry that consumed my throat, my heart and my gut.  Wrenching from me the feelings of guilt, loss and fear that have been held inside and stripping away every ounce of joy and hope.  I wept for the loss of my plans and dreams for life. I wept because I know I am no longer what or who I was and am afraid of not being able to control the evolving me.  I wept for loosTear is made up of.ing my freedom to get into the car and go & do whatever/whenever. I wept for the lost memories that now are only photographs to me. I wept for the financial burdens this has brought. I wept for my family and the changes they will have to make and the challenges they will have to endure.

There was no consoling me for there was no comfort for the overwhelming grief of what was and what is to come. I wept until my shaking body gave in to exhaustion and I drifted to sleep.

Dementia (Alzheimer’s, FTD, LBD, etc.) doesn’t just happen over night. It slowly robs us of our past, our present and our future. Bit by bit taking away the person we were as it slowly eats away our brain. I can longer be the Laurie I was. It has robbed me of the ability to have a successful career, entertain large groups, enjoy parties, drive to see friends or relatives, or even keep up with household tasks.

It would have been easier, if I didn’t have the transition of knowing what is happening to me. It is difficult seeing myself become less responsible and more dependent. It is frustrating when confusion takes over my ability to reason, think, communicate and comprehend. I am still Laurie, however I know by the way people treat me and by the way I react, I am different – I am changing. And at times I am afraid. And at times, I weep.

Today, I rejoice. The weeping is over, the day is new and I am so thankful for all the things I can still share and accomplish. I’m thankful I can laugh with Aunt Joyce while getting a manicure, and laugh with Roy over the beautiful colors of the huge bruise on my butt (fell on ice), and laugh with Becky over the ridiculously difficult puzzle I gave her. I’m thankful there is joy in the little things.

I’m sure my emotions will once again invade my happy space and require some grieving time, but not today. Today, I am going to laugh and enjoy all the beauty in my life.   Know any good jokes?

Love & Laughs,

Laurie

Written By Laurie Scherrer

No More Tools For Christmas

One of my most of embarrassing times in life came before I had dementia. Since that day, I will NEVER again buy tools for my husband! Should I ever forget – – I’m counting on all of you to remind me!

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No More Tools!

Being the procrastinator that I tend to be, it was two days before Christmas and I did not have a gift for my husband. Although I prefer to find something unique and special, I had no choice but to pull out his wish list. Roy’s wish list came directly out of the Sears Tool Catalog with page numbers, item numbers and cost. I knew the basics, hammer, wrench, and screwdriver – How hard could this be? Too late to order – so off to Sears I went.
Sears was packed with the normal Christmas crowd, long lines and associates trying to help three people at once. After walking up and down the aisles for 20 minutes, I stopped a busy employee to ask where to find a 24 inch square.
The very young assistant, hurriedly informed me they were in aisle 5 on the left, “You can’t miss them” he proclaimed. Fifteen minutes later, I still had not found a square.
Again, I waited in line and asked another young associate for help. “I am looking for a 24 inch square. I looked in Aisle 5, but don’t see any.” He walked with me to aisle 5 and handed me an “L” shaped metal ruler thing.
“That’s not a square – it’s an “L”,” I insisted. Although, his eyes were saying; “Why me?” he explained that it is used to square off corners. OH – that makes sense.
“Where do I find a Micro Meter?”
“I’ve never heard of a Micro Meter,” he said quizzically. “Let me ask another associate”. One by one they huddled together for a laugh. Finally, the manager, who at this point was the only one not snickering, walked over and explained that they don’t have a Micro Meter.
“You must,” I explained. “It’s in your tool catalog on page 896 item #14.”
He walked over to the desk, pulled out the catalog and started to laugh. Looking as though he was about to burst, he returned and offered to show me where to find a micrometer (pronounced my-crom-eater, not micro meter).
Two down. Understanding that I was not going to be able to complete this list alone, the manager offered to help me find the items on my husband’s list. What a relief! I had already spent over an hour and only had two small items.
With much embarrassment, I handed him the list and explained that my husband was pulling a joke and the next item would not be in Sears. He glanced at the list and totally lost it! Through his laughter he informed me that Sears does in fact carry Stud Finders.
By the time I paid for all my items, every employee on that floor was in hysterics. So glad I could add some laughter to their hectic day. Although I know now what a square, micrometer and stud finder is – – No more tools ever!
My wish for you this Christmas season is love, laughter and a Wish list that does not include tools!
Merry Christmas to you all!

Written By Laurie Scherrer

A Small Outing Can Be a BIG Deal

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 sostorenoiseme 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

© Copyright 2014 Laurie Scherrer