Category Archives: Dementia

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: Robe alz heros rt 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

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In Aug 2013, when I was diagnosed with Early Onset Alzheimer’s and FTD, I thought it meant the end of my life. Like me, the doctors, friends and family seemed to automatically focus on the last phase of dementia. Since the doctor suggested we see an attorney and “get our affairs in order”, I pictured myself over night becoming the person who couldn’t take care of myself and couldn’t remember my loved ones.

This is so far from reality. Reality is – –

There Is Life after Diagnosis!

How much and what quality depends in part, on how well we recognize and react to the changes. Although we cannot stop the progression of this disease and the changes that are happening to me, together we have learned to tackle some of the challenges. These are some of the ways we have adapted to reduce or deal with Dementia Daze Days.

Avoid Stress and Drama whenever possible!

Stress has a strong impact on dementia symptoms and can cause days of confusion. There are times I have to just walk away or hang-up and tune it out.

Music is a MUST

For those stressful moments that can’t be avoided, I put on heavy headphones, listen to MY music and allow my mind to escape. My iPad and our stereo are programmed with my music selection.

Restaurants

Yes we can still dine out (albeit, financial status may prohibit how often). To reduce the confusion we go to restaurants during off hours, like 3:00 or 4:00 when there are not as many people. We ask for a table away from heavy traffic flow and not by a TV. This creates a better environment for me to stay focused.

Grocery stores

We found the store activity is lowest very early in the morning. At our store if you are buying lottery tickets or cigarettes, they have to check you out at customer service – some days it is worth spending a dollar on a lottery ticket! Who knows, some day I may actually win!

Mall Shopping –

Haven’t figured this one out yet. Shop on-line.

Daily Activities

My iPad has become my lifeline! My day begins with checking my iPad calendar. I have notifications to feed the dogs, take my pills, complete tasks, etc. Each event has a different ring tone and displays what the event is – thus I have verbal and written instructions. It contains all my contacts (address, phone number, email, birthday, and spouses name), scheduled appointments, daily tasks, medications, doctor information, and my daily journal. All the information I would need is in one place. For me it is a necessity.

Telephone Calls

I keep pen & paper (or iPad) near the phone so I can make notes. If I don’t know the caller – it goes to the answering machine. “Telephone Tips for Calling PWD” (available on http://www.dementiadaze.com) is printed and handed to any business that I deal with.

Log all changes and discuss them!

We keep a record of changes, new symptoms, worsening conditions, odd behavior, etc., we discuss them and share with the neurologist. When necessary, we discuss what modifications may be needed.

Escape

Our hot tub is our refuge! That is where we escape to talk, cry, laugh, or just be together. No phones, no electronics, no noise, no confusion. Together, we deal with changes, make plans, discuss the future and make new dreams.

Just Say NO!

This was one of the most difficult challenges for me. Sometimes we have to back out of a scheduled event such as a wedding, a party, or having guests over. Experiencing Dementia Daze is like digging for a coin in a muddy swamp on a foggy day – everything is murky and unclear. The more you move around, the deeper you and your goal sink. The deeper you sink, the more difficult it is to get back out. The best thing to do is sit back and let the water settle and the fog clear.

We are committed to recognize changes and make adjustments to reduce the challenges for as long as we can. I am so blessed to have a wonderful husband to walk beside me through this journey and family to give us both support.

Love & Laughter,

Laurie

Written By Laurie Scherrer

Telephone Tips For Calling People With Dementia

Mix-Up my Routine = Mix-up Me

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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 sti Confused, Lost Sign ll 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

Last Night I Wept

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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 loos Tear 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

A Small Outing Can Be a BIG Deal

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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 so storenoise me 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

“Oh God – Why Me?”

My Hardest Day So Far

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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?

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

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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