Here’s the Recording of Dementia Chats Today, Sept 22nd, 2015
To dream the impossible dream . . . or is it? A journey with Dementia
My Dad, who had visited over 200 countries, often said he regretted that he and my Mom never fulfilled their plans to tour the United States. My husband, Roy, and I have shared that same dream for many years. Although we have traveled to many states for various functions, we have never truly “seen” the states. Knowing that at some point my dementia will prohibit such a trip, we set a date and started to plan. 2018 for a four to five week trip exploring our wonderful country. AWESOME!
As we shared our dream with others, the reactions were mostly targeted on why I could NOT take this trip. People were quick to point out my confusion and lack of focus, as well as the expense. Some openly expected me to fail and expressed it as an unrealistic waste of time to try. My excitement started to wane, being replaced with a feeling of loss for a trip I would never take.
Dreams are the foundation of hopes and ideas. They are often the beginning of the challenges weundertake, and the stimulus for our accomplishments. They are the drive that empowers us to keep moving forward. We dream of getting a new job or a new house, raising a family, being successful, and overcoming obstacles. “Hope is a waking dream” (quote by Aristotle). Therefore, as you destroy my dream, you also destroy my hope.
“Is it unrealistic to dream and make plans, even though the odds may be against it?”
As I contemplated this, I became inspired by some of the well-known “greats” of the world who accomplished their dreams in spite of their disabilities. Helen Keller, though deaf and blind gained a bachelor’s degree, campaigned on, disability and women’s rights and became a well-respected speaker. Beethoven composed some of the most sublime pieces of music after he was deaf. Bethany Hamilton after loosing her arm in a vicious shark attack, got back on her surfboard and (in addition to many other championships) went on to win First place in the NSSA National Surfing Champion. There are thousands of people who reached for a dream in spite of the odds. Some made it and some did not, but they all battled tremendous obstacles to follow their dream.
When people try to protect me by saying and expecting that I am unable to do something, in essence they are crushing a piece of my spirit. Yes, I have many limitations. As so many others have, we are learning to deal with them. We are learning to make adjustments, working around challenges and obstacles, while still maintaining the ability to love and laugh. Michael Jordon said; “If you accept the expectations of others, especially negative ones, then you never change the outcome.”
Maybe I am setting my expectations too high, or maybe I just need to figure out how to overcome the obstacles. If you take away my hopes and my dreams, I am left with an empty life of watching my degenerative brain impairment slowly make changes to my life. No, I won’t let others squash my dreams! Instead, I will reach for the unreachable star and follow my dreams “no matter how hopeless, no matter how far” (Don Quixote).
Now having made that decision, I need to get started on some plans. Stay tuned for future posts on planning for 2018! Sure, there is a possibility that it may not happen, but think of all the fun we will have planning and dreaming!
Love & Laughter, Laurie
Written By Laurie Scherrer June 2015
Here’s my Inspiration: Gomer Pyle “To Dream The Impossibe Dream”
© Copyright June 2015 Laurie Scherrer
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 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.
© Copyright May 2015 Laurie Scherrer
“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?”
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.
Although 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,
Written by Laurie Scherrer
© Copyright May 2015 Laurie Scherrer
I knew I shouldn’t. I knew it was a bad idea – – but I tried it anyway.
There are times when things go so wrong you just have to laugh. That was my evening last night.
The day started out fairly well. With the help of my alarms and lists, I had a very productive day. Three loads of wash – complete, clean the refrigerator – complete, find a ride to take me to two appointments – complete. I felt so accomplished. And then . . .
Towards the late afternoon, I began to feel out-of-sorts. As my world became clouded and disoriented, and my speech was slow, I decided I was going to make dinner anyway. That’s where I went wrong! Lesson number one; how to ruin a perfect day – when you know your dementia symptoms are taking over stay out of the kitchen!
First let me say, I HATE cooking anyway. I call it “the dirty four letter “C” word”. I don’t have the knack for it and by the time I’m done, my kitchen looks like a war zone. Honestly, I’d rather change the oil on the car than “cxxk”. In 34 years of marriage I have not been able to escape the horrors of the kitchen. OK, I digress – back to the bad day.
While retrieving two eggs, I knocked a bottle of Italian Salad Dressing on the tile floor. This caused me to jump, tossing the two eggs in the refrigerator. One actually survived – the other, not so much! There was egg on all the condiments (ketchup, mustard, relish, salad dressing, horseradish, etc.). There was egg all over the racks, which of course seeped down to the next rack. There was egg on the door and egg on the floor (that could make a song). There was egg on me.
How I wish I could tell you my tale ended there, but no. As I began the process of cleaning out the refrigerator for the second time, the ketchup lid was not on tight, so I added some ketchup to the other end of the kitchen – the floor, the sink and the cabinets.
Poo – “What’s that burning smell? Oh no! – Dinner!” Well done does not describe it! Looking around at the kitchen, which was covered with egg, ketchup and salad dressing. I called my sister and cried. Unfortunately, I did not heed her wisdom; “Stop crying, get out of the kitchen and let Roy clean it up.” I didn’t want him to come home & see this mess!
Feeling totally overwhelmed and frustrated, I headed to clean the kitchen. Dementia symptoms often cause balance issues. When there is ketchup, salad dressing and egg on the floor – it’s just inevitable. BOOM! I slipped, knocked over the dog ‘s water and fell smack into the mess.
At which point my husband, Roy walks in the door, sees me on the floor – wet, wearing Ketchup, dressing and egg. And simply says: “Oh, you’ve been cooking again! I think I’ll put the groceries in the dinning room for now.”
What he did then really made the difference! He pulled out a towel, sat next to me on the floor, gave me a hug and said; “Oh by the way, I decided to pick up a Stromboli so you don’t have to cxxk tonight!” We just burst out laughing. We laughed and we laughed until, yes I started to cry! I cried with laughter and happy tears over how blessed I am to have him as my husband.
Cleanup took awhile, but we got it done. Today, I see last night in slow motion, I see the egg flying through the refrigerator, the ketchup splatting all across the room and my wonderful husband holding me and making me laugh. I love you honey!
Love & Laughter, Laurie
Written By Laurie Scherrer
© Copyright 2015 Laurie Scherrer
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,
Written By Laurie Scherrer
Packing for a trip can be a challenge for anyone – add dementia to that challenge and it can be a very stressful experience. Packing takes thought, coordination and memory – all of which I struggle with.
In order to avoid getting to my destination with 27 pair of socks and no underwear, it is essential to prepare early and organize every outfit. The alternative is to leave all the packing to Roy. In which case, I would find white shorts and pants with hot pink undergarments – not a good option.
My routine includes these steps:
- Always wear an outfit once before going on a trip – even if just around the house. This helps coordinate everything that needs to go with it.
- Take a picture of the outfit and list all the items needed on the photo. I usually use a post-it note so I can make quick changes if needed.
- Keep a trip folder (mine is in my computer and I print them out, but it could be a paper folder). Include:
- The labeled pictures
- A list of all “Essential Items” other than clothing that will be needed for a trip (deodorant, shampoo, toothpaste, etc.).
- A list of “May Need Items”
- Beach: Water Shoes, Beach Towels, Sun Glasses, Sun Lotion, etc.
- Adventures: gloves for zip lining, boots for horseback riding, photos for visiting Mom, money pouch, evening purse, etc.
- A list of all medications
- Start preparing for the trip a week in advance. From the folder:
- Select which outfits to wear one day at a time and check each item on the list to make sure it is ready to go (clean, pressed, etc.)
- Check each of the “Essential Items” to make sure there is a sufficient supply
- Check the “May Need Items” and make sure they are ready to go
- Two days before Trip
- Layout each item from the photos – checking off the items as they are laid out
- Layout each item from the “Essential” and “May Need” List – checking them off. Highlight any items that need to be added the day of departure.
- The day before, have Roy pack my suitcase verifying that I have everything on the photos or lists. He packs a suitcase much better than me anyway!
- The day of departure, pack any items highlighted on the list. Pack the lists and the photos in the suitcase.
- Use the photos and lists when returning to make sure nothing is left behind.
Knowing that I am prepared and have everything needed helps reduce the travel tension and safeguards that I won’t be embarrassed to show off our pictures (well most of them)! Now it’s time to go have fun – for as long as we can.
Love & Laughter,
Written By Laurie Scherrer
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.
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
© Copyright 2015 Laurie Scherrer
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: Robert 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