Enjoy this compilation of video and photos from filming The Face of Dementia, Living with Hope. These were taken during the day with the AARP crew. It was a great experience and I am extremely grateful to have been a part of this series. (The AARP videos can be found in my previous post.)
Living with Hope.
I was featured on AARP! ~Click to Watch the video!
Currently, there is no hope for a cure, but there is hope for having a meaningful life after diagnosis. I am thankful for the opportunity to continue to share how those who have dementia can live with HOPE and continue to THRIVE in their daily lives. ~Laurie
Here’s another promo video that gives a brief summary of the series. ~Enjoy
I was honored to represent Dementia Action Alliance for the Health & Aging Policy Symposium held in Washington, D.C.
This could impact some of the decisions on policies for dementia care.
Laurie Sherrer: “Dementia Action Alliance” Advisory Board Member Presenting at the “Health & Aging Policy Spring Symposium.” May 16, 2018, Washington DC.
Like the waves hitting the beach, life is constantly changing and we are constantly changing with it. Change is an inevitable part of life. We develop, we age. We laugh, we cry. We dislike, we love. And as our lives transform, we either try to deny or resist the change, take action to modify the change, and/or we embrace the transformation and work with (or through) it.
Although there are many things in our lives we can take control of, not all changes can be modified. Not all changes are welcome. There will always be people, circumstances, occurrences and events that we don’t like and don’t want to have invade our perfect world.
For my husband Roy and I, the major changes came in the form of illness. For me, it was a diagnosis of Early-onset Alzheimer’s and Frontal-temporal Degeneration. For Roy, it was a diagnosis of Common Variable Immune Deficiency. Both are life altering medical conditions that have and will continue to impact our plans, dreams and daily activities.
Throughout my life I have always believed in the power of a positive attitude and grasping each challenge as an opportunity. My house, office and car were a collection of positive affirmations like “If I think I can or can’t – I’m absolutely right”, “If it’s to be, It’s up to me”,
“I have a choice – I can let my mind shape me or I can shape my mind” and many more. Mahatma Gandhi’s famous quote outlines how beliefs shape destiny: “Your beliefs become your thought, Your thoughts become your words, your words become your actions, Your actions become your habits, Your habits become Your values, Your values become your destiny”.
Although positive thinking is not always easy, staying in the habit helped me to accept and often excel through some of my more difficult challenges. However, when I was diagnosed with dementia, I found myself drifting away from a positive attitude. I felt that I couldn’t change things and IT wasn’t up to me and I had NO choice. I felt my little engine that once could, had no control to make it up this hill of life. I was becoming sad and depressed.
After my self-inflicted pity party, I realized that I needed to accept my diagnosis and the changes it would bring and make the best of whatever time I could. I found that the stress and worry of denial and non-acceptance was draining what energy I did have.
“Accept what you cannot change. Change what you cannot accept”. After a period of grief, anger, and denial, I began to seek my old self. I found that once I accepted the changes my life was going to take, I began to appreciate the joy and beauty around me. As my stress lessened – my confusion lessed and my energy level increased. The more I embraced the change with a positive attitude, the more Roy and I were able to discover ways to reduce the amount of “dementia daze” (the state of confusion and disorientation) and the more I was able to feel joy again.
To me, embracing change means accepting that it is unescapable and with a positive disposition determining how to make the best of it. Together, Roy and I are learning to embrace our challenges and modify our objectives and our life style. We are finding some of the things that trigger confusion and figuring out ways to overcome the hurdles that prevented me from enjoying life. “I can’t” has become “How CAN I”.
Yes, I still have challenges and days of confusion, disorientation, fear and emotions. However, most of my days are full of purpose and love. While embracing the challenges of change, we are also embracing every moment with joy.
Love & Laugher,
When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:
- My working days were over
- I needed to “Get my affairs in order and see an attorney”
- The time would come when I wouldn’t recognize my loved ones
- For any additional information we should go to the Alzheimer’s Association Website
- I may experience “sun-downing” in the late afternoons
- Come back in six months to see how rapidly you have progressed
What the doctors SHOULD have told us:
- There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
- Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
- The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
- On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break. Try listening to some music or taking a nap.
- It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
- Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other. dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
- Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out. Enjoy life, friends, family and activities for as long as you can.
- Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting. Get involved in advocacy work to educate about dementia. Contact Dementia Action Alliance at daanow.org to get started.
- You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone).You may feel confused and disoriented and find it difficult to think. There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile). It’s OK to admit you are having a bad day.
- Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
- Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.
Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful. Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.
My motto is: I don’t want just to survive – – I want to live and thrive!
Love & Laughter,
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,
In June 2017, I had the privilege of being involved with the first Dementia Action Alliance
Conference: “Re-Imagine Life with Dementia” in Atlanta, GA.
The conference combined the lived experience of 30 people diagnosed with various forms of dementia along with a variety of individuals who interact with dementia. This included; care, facilitators, music & speech therapist, dementia service providers, technology groups, and the list went on. This conference was filled with knowledge and education. It was one of the most powerful conferences I have attended.
DAA involved people living with dementia in every part of the conference. From conception
to planning to speaking and clean-up – we were included and “Nothing About Us, Without Us”
was implemented in every aspect. People often asked how people living with dementia (PWD) could handle a conference of this magnitude. DAA leaders (Karen Love & Jackie Pinkowitz) were essential to our success. They understand people living with dementia and when they didn’t they made it a point to listen.
A few examples; there was a quiet room just for PWD where we could go to escape the noise &
confusion, we were given earplugs, a sign that said: “slow down” (for speakers who were talking
too fast). We were always acknowledged first with questions (to help us remember what the
question was). Stickers were placed on the elevator buttons designating the conference floors
and tape on the floor pointed us in the right direction. I have never experienced a conference
with such passion and involvement.
I had the privilege of presenting part of the session on Compensatory Strategies. Although we
started the session with MANY technical difficulties, the session was well received. Enjoy the
viewing and please pass to others who may be struggling with the early challenges of dementia.
Sunday, April 9, 2017, I was featured on the front page of the Reading Eagle, a local paper in Reading, PA. I was interviewed by Steven Henshaw and below is the link to the original article as well as a beautiful video they created for the piece.
I am so thankful for this opportunity to share with their audience. They were surprised at the responses that they have received and several people have already received support due to this article. http://www.readingeagle.com/news/article/pike-township-woman-battles-dementia-while-she-helps-others-battle-it-too
I have searched and searched for a clock that will interpret time for people with dementia. Not only can reading a clock be difficult, at times the whole concept of time is befuddling. Dates, hours, and minutes aren’t always significant to me – they are just numbers and numbers REALLY confuse me! Clocks and calendars can be so unreliable – they just don’t understand dementia time.
If my calendar is marked “Dr. Smith 10:00”, my head doesn’t want to leave until 10:00. The notion of needing time to get dressed and the 30-minute drive does not enter into my equation. I only relate to 10:00, so that’s when I plan to walk out the door. As you may suspect, there are situations when this can cause an issue.
Quarter of? Quarter After? Half-past? 20 of? What??? When I look at a digital clock I see four numbers that represent the time. When I look at an analog clock (which I rarely do) I see hands that point to numbers. Neither of these clocks has a display that reads the quarter or half – they have only numbers. Although my clock displays 20 after a certain hour, none of my clocks have a display that reads 20 of any hour. This total imprecision in the way clocks are made has created havoc on many occasions. It seems I am always either early or late – except when I have an event that does not require leaving the house and it starts on an hour. At which point my clock is always accurate.
If I am told to be ready at 20 of eleven, my brain is only going to focus on 11:00 and that is when I will be ready. If I am told half-past 11:00, I expect to leave at 11:00 as none of my clocks say it is half-past anything. I think of quarter as a coin and there are no coins on my clock either. I don’t always comprehend this time lingo. In her beautiful illustration, my neighbor’s daughter, Abigail, relates this to how The Little Mermaid must have felt when she first came on land. Lost in a confusing world and unable to communicate.
There are moments when this confusion upsets me to the point that I begin to spiral into my “dementia daze zone.” Although the concept of time has no meaning when I am in my zone, it is not a pretty sight!
Since my dementia diagnosis, Roy (my wonderful husband) and I have spent much effort trying to identify the triggers that cause confusion and find ways to adjust to overcome the obstacle.
As we found that I was continuously early or late and not sure of time schedules, we began the task of trying to figure out what triggered the confusion.
When Roy said something about half past eleven, I realized I had no idea what he meant. As much as math has become a problem for me so has numbers. When I look at a clock, I see 11:30 – eleven, three, zero. I no longer see half-past or thirty. My brain interprets exactly what is displayed on the clock. OK, now we know the obstacle – time to make some adjustments.
We corrected my calendar by listing two times. We list the time we need to leave and the actual appointment time. If it’s a morning appointment, we also list what time I need to start getting ready.
We adjusted how we speak time. Time is spoken about as it reads on our digital clock, for example; Twenty of eleven is stated as ten, four, zero. Eliminating the halves, quarters and “of’s” took some getting used to, but it has really paid off!
Since our household has adjusted the way we talk time, I am rarely late or early. And my clocks seem to be giving more accurate information. Hopefully, someday, someone will create a calendar and clock that will adjust to dementia time. For now, we’ve learned to make adjustments to overcome another hurdle. So, until the next obstacle gets in our way – we’re living a positive productive life and on time!
Thank you, Abigail Marburger, for bringing color and illustration to this post. You are a beautiful young lady and an excellent artist!
Love & Laughter,