Category Archives: Dementia-Related Illnesses

Dementia Christmas Tree Analogy

I’m not sure what dementia is supposed to look like. Although I have some really good moments when I feel like anything is possible, I also have moments when confusion and disorientation take control of my emotions, my actions and my body functions. Dementia doesn’t just happen over-night.Think of a beautiful tree all decorated with lots of new lights, ornaments and ribbons. One day one of the bulbs start to flicker. You tap it a little and it goes back on. Over time, another starts to flicker and another. Sometimes you can get them to come back on and sometimes they will not come back on.

So, you make adjustments to distract from the burnt-out lights. Move an ornament or add some tinsel to enhance the lights. All the while this is happening, your tree remains beautiful and brightens the room. People who don’t see your tree often or who visit during the day time may not notice the lights flickering or those that are totally off. But you know that in time all the lights will fade.

I have times when my lights flicker and some of those “bulbs” don’t want to come back on, for example with math.

For now, enough lights are still shinning that I can try to brighten the world. Physically I am strong and healthy. My husband Roy and I have found that I CAN do many things that I did before – I just have to do them differently. We try to find an adjustment to compensate for the flickering
bulbs.

Sometimes people say “You don’t look like you have dementia.” and I’m thankful my lights aren’t flickering or that we’ve made the right adjustments. For now my tree stands tall, bright and beautiful. With routines and adjustments I able to live a beneficial, happy life. The day may come when all my light bulbs are dim, but for now, I
am thankful for all the days when I can be useful. As my husband reminds me, a Christmas tree is also beautiful during the day when the lights are off.

I am not the same Laurie I was, but with adjustments, planning and routines my lights can still sparkle.

There are many variations using the analogy of dementia being like a Christmas Tree. The first version I heard of this was written by a wonderful Dementia Advocate, Norm Mac – thanks for the inspirations Norms! I think this is such a great analogy that after writing it I put it into a video.

Merry Christmas Everyone!

Love & Laughter,

Laurie

Dealing with “the Diagnosis” –

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Living Well & Fading Slow with Dementia

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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-death different 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

Mom’s Journey Helps Me Through Mine

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Sixteen years ago today at 2:20p.m., my Mom (“Muzzy”) lost her battle with cancer. I miss her – her smile and laugh, her caring attitude and her power of prayer. For 2 years and 6 months, I had the pleasure of being her caregiver. I was the privileged one who got to be with her every day. I believe that journey was preparing me for the journey I now face.

Up until the last three weeks of her life, Muzzy filled her days encouraging others through phone calls, sending cards and letters and praying. Everyday she took her address book and one at a time prayed for every person in her book. There were times she was in severe pain as the cancer was ripping through her bones and organs and she asked someone to read the names for her – one at a time. Although she didn’t have the strength to hold the book herself – she still prayed for every individual.

In so many ways, Muzzy is still here with me today. Sometimes I pass the bedroom door and see her laying there praying with her address book. Often it is her words and attitude that help me deal with the challenges of dementia.

Why do I write about living with dementia? Through Muzzy I learned that there is more joy and happiness in focusing on others rather than our illness.

With every article I write, I pray that God will use my challenges, emotions and symptoms to touch someone in a special way. To provide caregivers some insight on what their loved one may be feeling. To encourage PWD (Persons With Dementia) that life does not end after diagnosis – clutch every moment you can. To increase awareness of the progression and challenges of dementia – it starts with confusion and frustration and is so much more than memory loss.

I find joy in every comment from a caregiver saying how much a post helped them relate to their loved one, in every comment from a PWD saying how much it means to them and also with every blog that is shared. As I pray for each person who comments about the struggles – I am happy to know I can still make a difference.

God blessed me with a Mom who set an example of how to find joy in the face of adversities. I share her daily prayer from Psalms 19:14, “ Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O Lord, my strength and my redeemer.”

I love and miss you Muzzy.

Laugh & Laughter,

Laurie

Written By Laurie Scherrer

Dear Teenager – This is How Dementia Feels

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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_mirrors Dementia 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

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

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

The Diagnosis

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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