Category Archives: Living with Alzheimer’s

Sometimes I Think My Dementia is Better and I Feel Like I Could Fly

“I’m getting better! I know I am. My life is running smoother, and I can think. Yeah, let’s celebrate!” I’m whirling around the house singing “I can see clearly now the fog (rain) is gone” and Peter Pan’s “I can Fly!”

BANG! Suddenly the confusion returns and I feel lost again. Life seems fuzzy as though I am caught in a maze and can’t figure out where to go or what to do. Sorting the laundry seems like such a task – what temperature do I use with whites? “But I was getting better! I had a few really clear days! What happened? Why am I back in Dementia Daze?”img_0031

When I feel like I can conquer the world, it’s hard to accept that in fact what a co
nquered was one aspect of dealing with Dementia Daze. I realize part of the reason for “Good Moments” (when my brain seems clear) is largely due to how we have learned to deal with the challenges. Without my IPad, lists and routines I would live in a constant fog.

Once I was able to multitask with extreme efficiency, now my daily activates must be broken into tiny tasks. For example: The Wash Day list consists of a check off sheet for each segment of accomplishing the task. How to separate the clothes, what setting to use for each load, which load goes in the dryer and what clothes go in the iron pile (yes, I still iron his shirts).   These list are created (or are in the process of being created) for various chores within the house.   Cleaning the bathroom seemed overwhelming to me. I didn’t think I did it right. Breaking each task into segments (clean the toilet with the brush, clean above the shower, etc.) helps me to look at it in tiny pieces and not an overwhelming task.

Living with Dementia is a constant circle of changes – Mood, physical, sleep patterns, comprehension, memory and symptoms are always changing. I have very good moments and I have very bad moments and some good/bad moments. My moments can last one hour or one day. The challenge of dementia is learning how to deal with or reduce all the symptoms and changes.

Picture_11196_taken_on_2014-09-07_141920Although the lists, reminders and alarms on my iPad may not always help me stay focused, for now they are helping me stay organized and accomplish my tasks – one at a time.   They are helping me to have more “good moments” to sing “I can see clearly now the fog is gone” and for right now, for this special moment – I CAN FLY!

Love & Laughter,

Laurie

Written by Laurie Scherrer

© Copyright May 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

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

“Oh God – Why Me?”

Before getting diagnosed with dementia I would answer philosophical questions with pat biblical answers – questions such as why God allows suffering in the world. Now I see some of these questions in a whole new light.
The questions are no longer philosophical – – they are real. Why did God allow ME to suffer with dementia at only 55? Why did He do this to my family? How can He say He loves me yet allow me to suffer so much when He could have prevented it? I don’t want clichés or religious sounding answers.
Through my challenges and doubts, I have come to realize a few truths.
1. Our life is just a speck of light in eternity. So the pain I feel now doesn’t even amount to a pimple in the scope of the world and eternity.
2. God sent His Holy Spirit to comfort me. He said, “I will never leave thee nor forsake thee” – that is showing He loves me. The Holy Spirit is not answering the burning why questions in a way I want them answered but He is comforting my soul. He has opened my eyes to see the world & people in a different way. I have experienced a new relationship with God, my husband, my family, and the beauty that surrounds me. Through dementia chat groups, I have experienced compassion with virtual friends that I never thought possible. To me, FB was a waste of time … now it is my support line.
IMG_0539IMG_0542

How long has that Albino bird lived in our backyard? Maybe it just came, or maybe it’s been there for years and I never saw it? Another rare bird came for a short visit, a spotted fawn walked within 6 feet of me, two kinds of Hummingbirds, beautiful butterflies, an exotic bug – so many new things. Were they always here?

3. On this side of eternity I will never be able to answer why, but I do know God will sustain me through it. He will give me new beauty and love – as long as I am willing to look through His eyes. I try to find something to be thankful for everyday – something new.
4. There are two ways to ask “Oh God Why Me?” Why did God surround me with so much love & beauty? Why did He give me such a loving family? Why does He comfort me? As I look at all God has blessed me with in life, with a thankful heart I ask “Oh God Why Me” – what have I done to deserve this? “Oh God Why Me” really depends on the attitude that I want to portray in life. I choose to be joyful and thankful.

Written By Laurie Scherrer

My Hardest Day So Far

I remember the fear, anger and loneliness I felt the day the doctor gave his official diagnosis of Progressive Degenerative Impairment evolving into Alzheimer’s or an FTD. Hearing those words, created a flood of emotions and questions, but I couldn’t react.
Having lost the ability to multitask, perform simple math, or follow instructions, combined with a decline in verbal communication and comprehension; deep down, I think I already knew. The doctors were just giving it a label. As a career person, being told I would not be able to maintain a successful career, it felt like my life was ending. So I turned to my music and found comfort in singing about the fears.
My most difficult day of this illness was on Aug 17th. From the time I was 11, music has been my outlet – for joy, sadness, heartbreak and fun. I have been able to express myself playing my guitar (“Olivia”), writing songs, singing and performing. On that day, when I picked up Olivia to sing in Church, it seemed like a foreign object. I couldn’t remember how to hold it, much less how to play. I felt like my very essence had been drained – my soul had been ripped out. How could I express my love, a beautiful sky, a heartache, or make people smile, without my songs and Olivia? How could I live without my music?
hoppity Hop 3
Two months later, at times I can remember how to play and combine the chords and the words, but it is becoming less. Now more than ever, I long to be able to take Olivia and write about this disease, to cry and laugh and find comfort in her strings. Instead, I listen to the songs of the birds outside my window, the screech of the barn owl or the cries of the baby fox. I don’t think I ever listened to them before – perhaps, God is trying to open my ears, eyes and heart to new things. I will start to listen more carefully.

Love & Laughter,  Laurie

Written By Laurie Scherrer

With Dementia The Hardest Part IS Knowing

In many cases, the hardest part of an illness, is not knowing – waiting for those test results to come back. I used to say; “I can deal with anything – once I know what it is.” With dementia, the hard part IS knowing; knowing what you may do to your family, that they may not be able to care for you alone, that the person you are may totally change.

Although we may not talk about it, people with dementia battle with the constant fears of what we know this disease does. We deal with knowing that some day we may become mean, be incapable of making decisions, loose control of our body functions – and even worse our words and emotions. We cry and pray that we will not hurt or forget our loved ones, and yet know we probably will.
We watch our friends, and sometimes family, turn away – unable or unwilling to cope with the changes. And feel the hurt that causes our caregivers. We long for the days when we could read a book and understand what we read, entertain friends without getting overwhelmed, carry on a conversation without feeling lost, and complete a task without getting frustrated. And know those days will never return.
To be aware of dementia – you need to be aware that we often know what is happening to us and how it is impacting those around us. It hurts not being able to control these changes.
I have decided to grasp ever day of sunshine, knowing that someday I may not be able to walk alone. To find one blessing each day and share it with others, in hopes they will pass one on. And to avoid unnecessary turmoil and negativity so I can stay positive . And to say “Thank You” and “I Love You” often, so it will be remembered.
Caregivers – thank you, from all us.

Love & Laughter, Laurie

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