Category Archives: Young On-Set Alzheimer’s Disease

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

Walking For Alzheimer’s Association

Roy & I will once again be participating in the Alzheimer’s Walk.  This year – we have a walk just for Berks County!!! YEAH!!  The 2 mile walk will be held at Penn State Berks Campus on Saturday October 8th, 2016.  We have been hoping that the Alzheimer’s Association will increase their training and support efforts in the Berks County Area (currently they mainly service Philadelphia area).  We are encouraged that this may be a step in that direction.

Wimg_3160-1e were so blessed last year with 29 people walking in our team “Laurie’s Loves”!  What a fabulous show of support!  Our goal was $2,500 – we raised $2,725!!  I am hoping we can reach $3,000 this year.  Thank you all so much for the love & support – by joining us on the walk or supporting our efforts with a contribution!

If you would like to join Laurie’s Loves and walk with us or if you would like to make a donation for the walk the below link will take you directly to website page:

http://act.alz.org/site/TR/Walk2016/General?px=9374300&pg=personal&fr_id=9251

If you prefer to mail a check – please complete the form on mimg_4715y walk page and mail it with your check

 

Thank you all for all your love & support!

Roy & Laurie

Virtual Lights of Love

Virtual Lights of Love Candlelight Service

November is National Alzheimer’s Awareness Month. Each year the virtual Lights of Love Candlelighting Service is held to promote dementia awareness by remembering those with dementia and those who were taken by dementia.  To particpate in this event, my family spent part of their Thanksgiving Day reminding me how that they will always be here to support me. I love you all.

Living Well & Fading Slow with Dementia

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-deathdifferent 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

© Copyright May 2015 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

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