Category Archives: Training

Making the bed with dementia

Adjusting To Dementia #2 Bed Sheets

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

grocery shopping with dementia

Adjusting to Dementia #1 Grocery Shopping

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

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

Famous Dementia Doers Who Made A Difference

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: Robealz herosrt 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

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

The Diagnosis

On August 13, 2013, Penn Medicine gave me the “official” diagnosis of Progressive Degenerative Impairment evolving into Alzheimer’s or an FTD. What a total kick when the doctor casually said I should get an attorney to apply for disability. “What do you mean disability?” He obviously did not know how much of a career person I was and how it would impact me when he said I would no longer be able to work. Much has happened since that day. We’ve faced many changes, decisions, tears and laughter.
When & how this started: I think I noticed minor changes as early as 2010, which I figured were stress or just general life changes. Doesn’t everyone go through periods of forgetting things? After my nephew, Andrew died in November 2011, changes became more obvious and more frequent. These I passed off as stress, depression and guilt over Andrew (“if I had only …”). By January 2012, my math ability was pathetic; I was constantly behind in everything, found it difficult to make a decision and I was having problems remembering verbal communication. I knew something was wrong and considered going for counseling.
I had to work longer hours to keep my work organize and accomplish my tasks. Multi-tasking had become impossible as I could only focus on one thing at a time – one conversation, one task, and one piece of paper. I spent over an hour speaking with a new customer and two days later, didn’t remember who she was or the conversation. This progressed to getting lost coming home from work and repeating myself – sometimes the same sentence five times. The more stressed I became the worse it got and as the symptoms progressed, I became more stressed.
After MRIs, Cat Scans, 8 weeks of psychological/neurological evaluations and many doctor appointments, the three doctors referred me to Penn Medicine for a final evaluation and to confirm their suspected diagnosis.
What we have found …
The disease I have is progressing. Although I take medication in hopes of slowing down the progression, there is no cure. At a slow, yet steady pace, we notice and deal with the changes.
What Rick Phelps recently wrote in a chat, expresses a lot of my feelings:
http://phelps2645.blogspot.com/2014/06/today-i-am-thankful.html
What it’s like now …
I have “bad days” or hours where confusion and fatigue take over. At these times, depression and frustration easily kick in as well. We are learning the signs of a “bad moment” and how to deal with them and trying to take advantage of all the good days. There are times that I must have “down time” or just a quiet retreat to let my brain rest.
There are many times when speaking and understanding what is said is challenging, causing me to have to ask people to repeat what they said. I have to work very hard to comprehend what you are saying and even harder to express what I want to say. This is especially difficult when I am with a group and trying to process more than one conversation or thought. Continuous talking/listening wears me out quickly and I just have to escape to silence for a bit.
Sometimes, I don’t remember what I am doing or why. And yet, other times, I wonder why I can’t work – I feel wonderful and “normal”. Generally, mornings are good for me. I get up between 5 and 6:00 a.m. and accomplish as much as possible. By late afternoon, my life usually becomes disrupted and I need to rely on more memory aides. This generally starts with problem-solving difficulties (i.e following a recipe, looking up a phone number, taking care of the wash from beginning to end, etc.) and may progress to difficulty with speech and comprehension.
We have found that the evil confusion gremlins become most anxious when I am away from my comfort zone. Grocery Shopping, for example, is a huge project for me. Dealing with the people, making sure I get everything on the list, use any coupons, and standing in line with a crowd of people talking, is a day’s work for me. And yet, I can put some music on and paint the shed for ten hours without getting tired. I’m still me. That has not changed, but we are learning that adjustments need to be made to keep my life productive.
I’m told that sometimes I say things that are inappropriate, and totally out of my character. I don’t recall doing this, but if I do – – please let me know. I don’t mean it.
Changes …
We are constantly learning ways to modify everyday activities to compensate for the down times.
Meals are prepared in the morning as much as possible.
Reminder notes – I constantly forgot to hit “start”, thus the dishes, clothes, oven or coffee, never finish. So now they say “START” and all I have to do is remember to read the note?
My iPad has made life so much easier. Everything is on my iPad.; contacts, calendar, alarms (to feed the dogs, eat, start dinner), notebook, task list, brain teaser games, etc.. Where I go – it goes.
I participate in many chat groups trying to learn new and better ways to deal with the current symptoms and those to come.
We plan as much as possible for mornings (difficult since we were both night-owls).
When verbal communication is difficult, I don’t answer the phone.
And now this step, we try to educate our friends and family on what to expect.
Life as Usual …
We intend to live our lives to the fullest we possibly can, enjoying every minute we can with our family and friends. We want people to continue to feel like coming over and hanging out. There will be times when I have to walk away and perhaps go lay down or find a quiet place – especially when I am away from home. There will be times when I repeat myself or don’t follow a conversation.
I hope this clarifies some of the questions and concerns about my disease. Please pray for Roy and I, as we face the challenges of Dementia.
Love, Laurie