Tag Archives: music

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 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

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?
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