Category Archives: Rejoicing with Good Times

I no longer wanted just to survive with dementia, I wanted to thrive!

When I was diagnosed with Early On-Set Alzheimer’s and FTD (Fronto-Temporal Degeneration/Dementia) the doctor’s only advise was “Go home, put your affairs in order, see an Elder Care Attorney and come back in six months.” We left his office with the understanding that I would forget my loved ones and die at any time.

This same doom and gloom diagnosis is given to most people diagnosed with dementia. Although the average life expectancy is eight to ten years, there is no encouragement of living a meaningful life. No strategies are offered to identify what triggers dementia episodes and what might help. And no information is provided on support groups or how to connect with others living this journey.

At first, I accepted the doctor’s verdict. Wallowing in self-pity and low esteem, I gave up and set about to prepare for the inevitable. Then I found that there are many people living a meaningful life after diagnosis! Through Dementia Mentors, Virtual Memory Cafes, and Alzheimer’s Speaks Radio, I learned to identify and avoid some of the triggers that aggravate my dementia. Together, my husband Roy and I discovered ways to compensate for many of the hurdles that cause confusion and found that there are many tactics to help people with dementia to live a productive life.

Socializing with other people living with dementia in support groups was wonderful, but I wanted more. I no longer wanted just to survive – I wanted to Thrive! Although I knew I could no longer handle the responsibilities and stress of a job (or the driving), I longed to feel like my life had a purpose. Then I connected with the Dementia Action Alliance and my doors were opened. Finally, a group that focused on quality of life!

The Dementia Action Alliance USA (DAA) is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia. I have been honored to work with the DAA on many projects/committees and had the privilege of speaking at Re-imagine Life with Dementia Conference in June.

The DAA is making a difference now, not waiting until a cure is found. Funds are needed to continue and expand the fabulous programs and support they offer to make meaningful life possible while living with dementia.

Please consider helping the DAA to improve quality of life for people living with dementia. Your donation can be in honor of someone living with dementia or in memory of a loved one. To learn more about DAA or make a donation please visit DAAnow.org or click this link: https://daanow.org/donate-now/

Thank you for caring and for all your support.

Love & Laughter,

Laurie

Is it Senseless to Dream and Plan?

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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 othe Obstacles Don't Have To Stop You Michale Jordan rs 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”

Sometimes I Think My Dementia is Better and I Feel Like I Could Fly

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“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.

Picture_11196_taken_on_2014-09-07_141920 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,

Laurie

Written by Laurie Scherrer

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

Let’s Go Away! Trip Turmoil Tip #1

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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. Packing Blue Stripped Shirt

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:
1. The labeled pictures
2. A list of all “Essential Items” other than clothing that will be needed for a trip (deodorant, shampoo, toothpaste, etc.).
3. A list of “May Need Items”
  1. Beach: Water Shoes, Beach Towels, Sun Glasses, Sun Lotion, etc.
  2. Adventures: gloves for zip lining, boots for horseback riding, photos for visiting Mom, money pouch, evening purse, etc.
4. A list of all medications
Start preparing for the trip a week in advance. From the folder:
1. 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.)
2. Check each of the “Essential Items” to make sure there is a sufficient supply
3. Check the “May Need Items” and make sure they are ready to go
Two days before Trip
1. Layout each item from the photos – checking off the items as they are laid out
2. 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,

Laurie

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

“Oh God – Why Me?”

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

Dementia Daze Dosage

Dealing with Dementia Daze

Category Archives: Rejoicing with Good Times

I no longer wanted just to survive with dementia, I wanted to thrive!

Is it Senseless to Dream and Plan?

Sometimes I Think My Dementia is Better and I Feel Like I Could Fly

Let’s Go Away! Trip Turmoil Tip #1

Last Night I Wept

No More Tools For Christmas

“Oh God – Why Me?”