Tom and I were honored to be able to speak at the Alzheimer’s “Reason To HOPE” breakfast at the Williams and Mary Alumni House . We meet new people and now many more understand what early stage Alzheimer’s is all about. It was a great day AND they had BACON!!! If you know me you know my love for all things Bacon.
I decided to post our speech. No facts of figures as there is nothing new to report except hyped up rumors that have no substance. We need more research to be funded.
In the early stages we are still very much aware of our care partners, their moods and actions AND their need to get together with friends without us. Alone time is good for all. Some families and friends do not know what to say – it’s almost like a death – what do you say to the family?? I do not want Us to be remembered as the Alzheimer’s and the vision impaired couple and while we do not talk often outside of support groups it’s nice to be asked how we’re doing. Now with me you’ll probably get – “My leg and knee are still killing me!!” Right now that usually overpowers the Alzheimer’s. Tom will say “fine”……….. Men!!! We will gladly discuss our lives and we love to educate – just ask.
My Alzheimer’s brain is awesome. It may fail me at times but it holds great memories. These memories keep me going because it helps others know that the face of Alzheimer’s is changing.
I am Sharron Warren and this is my husband and care partner Tom.
I AM the face of Early Stage Alzheimer’s but what is the face of Alzheimer’s? This is a question I’m often asked – you don’t LOOK like you have Alzheimer’s. I feel like asking – what does Alzheimer’s look like?
By telling my story – what I feel and how I maneuver through this terrible disease I hope you will have a better understanding of what one persons life is like living with Alzheimer’s.
Most people associate dementia with being OLD and unable to interact with others. That is not true for me – as you can tell – I still love to talk and I try to be social.
With the help of the Alzheimer’s Association I have learned that there are many faces and stages with this disease. I look out at all of you and we all look different. With this disease, as in life, we all move at our own pace. I am blessed to be moving slowly.
When we started our journey about 4 years ago I knew what my Mother and her three sister’s looked like with Alzheimer’s.
They were all different – their stages, their expressions, their speech and how long it took Alzheimer’s to end their life.
When Tom and I noticed – in me – the same symptoms as my Mother – behavior changes, difficulty with words, and short term memory loss we had THE talk.
After THE talk Tom called the Alzheimer’s Association for help and information. He set up testing at CELA – The Center for Excellence in Aging – I did not pass. This of course lead to further testing.
Scientists have reported that these plaques and tangles in an Alzheimer’s brain can start as early as 20 years before any symptoms are noticed.
In the 1990’s I worked for a pharmaceutical company. At that time we were working on an Alzheimer’s drug. That was over 20 years ago and we still do not have a drug that works.
Imagine where I’d be today if that drug had been the cure. I would not be standing here before you. My life would be so different.
Ever since Tom made that call – the Alzheimer’s Association has steered us in the right direction through our journey.
“To expand on how this is much more that memory loss, I will take a minute to discuss other changes and how they impact our day.
APATHY, Before I knew there was a problem, I noticed Sharron had lost interest in her hobby of jewelry making. Now I see this apathy affecting decision making, sometimes not caring what is for dinner, where we go for lunch. This is more of not wanting to make a decision; decision making can be exhausting when your brain is not what is used to be.
Everyone experiences ANXIETY, ours goes beyond the uncertainty of finding parking on the WM campus. For us we plan our day to avoid crowds, use a store that is usually not crowded, or go to predictable places where we can hopefully be comfortable. We go to the 9am church service, before most people get up on Sundays. When traveling, a restaurant of unknown local fare loses, we find a familiar name.
Changes in sleep patterns are also common. Sharron had many restless nights. Lack of sleep was impeding our normal activities. It took the doctor almost a year to find the right pill to result in a full night sleep. It is exhausting; we plan our day to be home in the afternoon and evenings. Our friends know to plan lunch dates, if this was a dinner speech, we likely would have declined.
Sharron has changes in taste and smell. She no longer eats her once loved peanut butter crackers. Today she leaves the room when I am eating a peanut butter sandwich.”
Having Alzheimer’s is a learning curve that Tom and I work on daily with practicing better communication skills and patience. Some days none of that works. It’s part of my brain’s downward progression. It’s a team effort.
Day to day living isn’t always easy so we both need a sense of humor (as there are many days I just have to laugh at myself).
The average life span for someone with Alzheimer’s can be anywhere from 7-10 years with some living more than 20 years.
I plan to be in the 20 year range!
People also say to me – you seem so normal. What is it like? What it’s really like inside my head – lets see?
I have short term memory loss that is very frustrating.
I have uncertainty and hesitancy – sometimes I just don’t want to make that phone call or walk into that store. Or do I??
I am challenged to perform routine tasks like cooking. I love to cook but I have difficulty with recipes. Familiar off the cuff cooking is becoming more difficult.
I also have difficulty focusing my attention – such as reading and watching TV. I can read part of a book but when I pick it up the next day I either have to start over or continue and hope I can eventually remember the story line.
I have mild aphasia – loss of words. I use many more pronouns. Such as “hand me that thingie to open the can or hand me that flipper.”
Many people asked what would make my life better – of course I always say – a cure – but these 4 things are important are important to me and others with Alzheimer’s.
Speak directly to me.
Let me be independent.
Keep me engage with family and friends – even if I do not remember their names. Tom is wonderful at whispering names to me.
Now and later in the disease – Do not treat me like a burden.
No matter what stage I am in – No matter what I LOOK like, when I can no longer remember names of family and friends I may well understand what you say – remember there is still a person in there.
Despite all the problems that go along with ALZHEIMER’S – Please do not feel sorry for me as I have a full and happy life. I am still able to drive and enjoy the company of others. Our life is good!!
As you look at the videos today there is HOPE in every ones eyes. With no cure in sight we all need HOPE.
Without ongoing research all we have is HOPE. I have even named my team for the October Walk to end Alzheimer’s THE HOPE CREW.
Along with the staff and the wonderful volunteers at the Alzheimer’s Association Tom and I have found our HOPE and that is for a cure.
They guide us with support groups, the Memory Café, and with love and kindness. They GIVE this wonderful gift to us.
These are people I know I can call anytime and they will be there for us.
Even when my LOOKS change and I progress Tom and I will continue to HOPE and we’ll know that the Alzheimer’s Association will be there with us until the end.
If you or someone you know are having memory problems please call the Alzheimer’s Association and let them help with your journey.
You do not have to do this alone.
Thank you for taking the time to listen to my story and see another side of Alzheimer’s. Though we are all different we continue to have HOPE.
So Sharron – How are YOU doing?
The annual Williamsburg “Walk to end Alzheimer’s” is only a few months away but those months will fly by. I have formed a new team, “Hope Crew”.
People can join my team to walk OR just show support. It shows that you care about the cause and finding a cure for a loved one with this disease and ME.
The site below will take you to my home page where you can donate or JOIN MY TEAM. Please let me know if you have any questions.