by Sharron Warren

It Was a Beautiful Walk

 The Walk to End Alzheimer’s.

October was such an exciting and busy month – a tiring one for me.  I can not thank my friends, family and walk team enough for all their support, friendship and kindness.

Team HOPE CREW rocked and I know we will come back next October stronger and larger.

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I met my fund raising goal as did the team – what a wonderful feeling of love and giving.  Fundraising isn’t easy as most of us do not like asking for donations so I am so ever thankful for the response I received.  Out of 56+ teams we will probably end up in 8th place – can you imagine??  JOY!!!

Our Williamsburg goal has not been met and fundraising continues into December – just saying……………….my team is still accepting donations.

http://act.alz.org/goto/SharronWarren

Thank you all.

 

Speaking – ALL THE TIME!!

 I was asked to speak again at this years walk – what an honor.  I am grateful to my husband and God for keeping me strong, happy and vocal.  Below is a YouTube link to my speech.

https://youtu.be/7m4K7t3qcX4

I want to thank so many people for pulling off this huge event.  Patricia Lewis was this year’s walk chair.  People are asked to chair the walk because of their strength, leadership and determination.  Pat did all that with grace, hard work and humor.  There were so many behind the scene players and so many volunteers – it would be hard to name them all.

I also want to thank Brenda Perkins and Lane Tolj of Brookdale Williamsburg for asking me to speak the Friday before walk day.  I love visiting with the residents.  This visit boosts my energy level to get me going for Saturday’s walk.

 

Caregiver

That time of the year

Art projects (especially holiday ones) can create a sense of accomplishment and purpose.  They can provide a person with dementia — as well as caregivers — an opportunity for self-expression.

Art projects for early stage dementia are wonderful.  They help with self-esteem as well as helping to fill a long and sometimes lonely day.  I forget about my coloring and painting, as many may do, so a gentle reminder helps.  Also out of sight, out of mind is so true.  Keep your crafts where you can see them everyday.

When planning an art activity for someone with middle- to late-stage Alzheimer’s, keep these tips in mind:

Keep the project on an adult level.  Avoid anything that might be demeaning or seem child-like.

Build conversation into the project.  Provide encouragement; discuss what the person is creating or reminiscence.

Help the person begin the activity. If the person is painting, you may need to start the brush movement.  Most other projects should only require basic instruction and assistance.

Use safe materials.  Avoid toxic substances and sharp tools.

Allow plenty of time, keeping in mind that the person doesn’t have to finish the project in one sitting.

You will be amazed how beautiful their art can be.

So Sharron, how are you doing?

I’m tired, but who isn’t these days.  I’m having some anemia problems that I hope will be resolved in December.  This brings me to a small rant about the workings of physician offices these days.  I’ve been a nurse since the 70’s and have worked in Family Practice and was the office manager in a Pediatric practice for many years.  My wonderful primary care physician left us this year in my search for a new physician I chose one that was within walking distance of our home.  One day I will not drive so this is important.  It has been one stupid and unprofessional thing after another.  My offices were never run that way so to add to a present medical problem of someone with dementia you have lazy and incompetent physicians and staff.  I hear how frustrating this is for many.  Now I’m stuck with more decisions.

We had an awesome awning installed on our terrace and we are looking forward to many more days up top.  My lettuce garden is doing great!!

Early in October we had the whole inside of our home painted – FIVE LONG DAYS!!!  This paint will last until I die – no more of that mess.

Tom and I are both looking forward to a quiet November and December.  As many of you know the holidays can wreak havoc in an Alzheimer’s life.

My sister in California is going through breast cancer treatment but I feel her in my heart.  Prayers are always welcomed.

Despite all the unsettling things Tom makes sure that I am happy and content.

Can this be true?

Your dementia risk is really a lifelong thing.  People think about dementia in late life, because that’s when it’s common to see the clinical symptoms.  But everything that is setting you up for cognitive decline is occurring throughout your life.  As I’ve said before – this buildup of plaque and tangles in an Alzheimer’s brain can start 20 years before you show signs of symptoms.  Stay healthy, eat right, exercise and stay social.  A healthy lifestyle is the main ingredient to starving off most dementia’s.

 

Enjoy this beautiful fall season.

Wishing you and your family a wonderful and blessed Thanksgiving.

 

**Remember that I am not always responsible for what I write!!

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Are You Ready to Fall?

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I love to read – reading just doesn’t love me.  Reading on the beach has always been the best…….soft sand, warm sun, smells of summer and the Ocean – oh my….how I love it all.  As I may have said in previous posts –I speed read or I rereading.  Short term memory and 5-6 characters in a novel can be frustrating.  If there are more than 4 characters then I get lost.  I used to write the “family” tree on paper before I started reading but decided that a book with that many characters is not for me.  How the author made up all those names and that BIG tree is beyond me.  I try so hard to read and keep my brain active therefore I usually resort to magazines, Alzheimer’s articles and maybe an easy book or two.  Fern Michaels “Texas Heat” is not one of them!!  I tried working on that for two weeks!

 If you like a good read check out Camille Di Maio  https://www.amazon.com/Camille-Di-Maio/e/B018RKXLZU  She is a wonderful author, neighbor and friend.

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Unwilling or Unable?

 Which is it?  For me with Early On-Set Alzheimer’s I feel that it could be both.  Depending on the circumstances I may be unwilling and unable to perform a certain task at any given time.  This of course for many depends on what part of the brain is affected.

 It’s hard for family and friends to understand this, because they can’t SEE what’s wrong with me.  They can’t see I may be unable, or unwilling to understand what they are saying.  This of course causes stress and confusion for both parties.  In my stage it’s more likely that I am unwilling to do something than unable – unless it involves problem solving, making decisions or reading.  HA!!

 So yes, I may be unable and unwilling.  Thinking back to when I broke my leg. I was unwilling to walk, simply because I was unable too.  I am unable to comprehend what is being said in a large group but I simply am unwilling and unable to understand or decipher the conversation. 

It is too tiring.

This my friends is why I talk so much.  I need that control.  If I talk, laugh and try to make jokes then I do not have to work at understanding the conversation around me.  Which brings me back to some older posts – You are SO social.  How can you be so social (chatty) and have Alzheimer’s?

 We, as humans we are all different.  Not one of us is alike.  To determine the seven stages of Alzheimer’s there were hundreds of people with dementia being studied, all different as all our brains are different. There may be seven stages but all of us wiggle between two or three of them.  No one is in one certain stage until the end.

Yes, I still hear: My Granny has Alzheimer’s and all she does is babble, she’s incontinent and so mean!  How can you have Alzheimer’s and look and act like you do?  I can be unwilling and unable.  We are all different.  I am different.

  

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.

 

 So Sharron, how are you doing?

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At this very moment I am in a slump – can’t you tell?  Maybe it’s post vacation letdown.  We had a great two weeks in Atlantic Beach with awesome weather despite Irma, Jose and Maria.  On the windy non-beach/pool days we went shopping and walking through the wonderful towns of Morehead City and Beaufort.  I was thrilled to have my cousin (and her hubby), who I have not seen in over 50 years, join us for a great day in Beaufort!!  Eating was always the highlight of our day – hence my home scale is not being very kind to me.

We have a lot going on with a new sink to be installed today.  We are having the WHOLE house painted hopefully next week.  We are getting new carpet-maybe some new wood floors and lastly we’ve ordered an awesome awning for our rooftop terrace.  I can envision many more days and nights of enjoyment – four floors up. 

 

Time is running out!!

“Hope Crew

Please join my team to walk OR just show support.  It shows that you care and support the cause, finding a cure and ME.

The site below will take you to my home page where you can donate or join my team.  Let me know if you have any questions.  Just do it.

http://act.alz.org/goto/SharronWarren

 

I have raffle tickets for this awesome car.

2017 car raffle flyer

I will be talking this year.  That alone is worth your Saturday morning!

The Walk to End Alzheimer’s

Saturday October, 28, 2017

Matthew Whaley School

301 Scotland St. Williamsburg, VA.

Registration at 8:30 am Ceremony at 9:40 am Walk at 10:00 am

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Thank you again for all your support.

slbeach703@hotmail.com

*remember that I am not always responsible for what I write!!

laughing-heart[1]

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Summer storms come up so fast. Inside my head these storms occur all year.

If you understand Alzheimer’s then no explanation is needed.  For those who have not grasped the enormity of this disease I pray one day you will understand.  Please take the time to ask questions and educate yourself.  Remove the blinders, restore your kindness, ask questions and get to know us.  We want you to understand.  We are all willing to share. 

*Be kind, be thoughtful.  The effort we put forth for an event – giving a speech, hosting a party and even just socializing takes a big chunk of brain power – it takes many more hours than someone without Alzheimer’s – we are spent, done in, over it, exhausted.  Adding disappointment to that makes our life extremely difficult.  Think before you act – do not tiptoe but remember that our reactions are different. 

It is a really big deal

Grieving

It is not about the end that I grieve for.  I grieve for the future – things I will miss.  I grieve for today.  Yes, those who know me may think I am spoiled rotten.  HA!!  So why complain?  I am missing chunks of life.  Unfortunately my outgoing personality doesn’t reach very far and quite frankly I get tired of trying.  With that said maybe those who are in tuned with this type of grieving will understand what is missing.

“The most supportive and kindest thing we can do when we know someone who is grieving is to be with their grieving. So often we try to change how they are feeling, distract them from the pain or cheer them up, but the best thing we can do, as a supporter, is to just be with them, however they show up on the day. Sometimes this might mean they want to see you, sometimes they might not, and other times they might want to be surrounded by as many people as possible. Allow it, don’t fight it, and be okay with seeing that person in pain; you are giving them the gift of healing by doing this.” ~Nicole Perhne

 

Having a chronic or fatal illness carries its own grieving process.  Most of us think of grieving as the loss of a loved one but grieving happens daily for those of us with Alzheimer’s.  Sadly we are not alone.

So Sharron how are you doing?

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I am loving the summer.  I am in my element.  Give me the sun, some water and a good book –  I’m content.

I am having some difficulty finding that quiet place where I can read and relax without, screaming kids (YES, I love children – I was a pediatric nurse), foul mouth teens, entitled millennials, (NO, I do not like them) and intrusive yapping, slobbering, pooping dogs. Yes, my friends they are everywhere.  (YES, again, I love dogs – I’ve loved several) but the whole dog thing has gotten out of control.  Therefore we are left to hunt for new vacation spots – a secluded mountain cabin, a quiet place on a lake……………80% of my time is spent in a quiet environment.  My support group friends experience the same problems.  Calming quietness is what we crave.  It’s what we need.

I enjoy hearing Tom play the guitar.  He loves playing and it makes me happy.

I love seeing my Son.  He is the best son, father, husband, friend that anyone could have.  His work ethics are top notch.  I’d like to pat myself on the back but much of the credit goes to his Dad.  Tom has to be the best Dad ever.  Pure love.  If you know me you also know that Rod and I both lucked out.  He saved us.

Back in the day I loved spending time with my two oldest granddaughters.  Now I have my two youngest grandchildren to love on.  They light my heart up.  To hear Riley (13) say that he will always love, hug and kiss me makes my heart flutter.  Emma (10) my oh my………..she loves her arts and crafts like her NaNa but her heart belongs to her GrandPa and that makes me happy.  I love seeing the smile on his face.  I sing with joy. 

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I love being with my cousins Dolly and Mary Lu – what fun lunches we have!!  They may not know it but they lift up my soul.  I admit that I do not possess the knack for finding or making good friends and that’s OK – I try.  I love the family I have and I miss family and friends that I no longer see.

I love my church (LifePointe Christian Church) and I wish more people in my life could experience that type of joy.  I may not be able to carry a tune but I manage to belt it out on Sunday mornings and guess what?  No one cares – God is good.  When he hears my voice I know he is chuckling – after all he did create me.

Enjoy the summer

I will be back in September.

“Hope Crew

Please join my team to walk OR just show support.  It shows that you care and support the cause, finding a cure and ME.

The site below will take you to my home page where you can donate or join my team.  Let me know if you have any questions.  Just do it.

http://act.alz.org/goto/SharronWarren

I will have those wonderful car raffle tickets the middle of July so if you are interested just email or leave me a comment.  I will be glad to hold some for you and even mail them if you wish.  Same as always they are $5 each/ four for $20 or five for $25!!  You’ll want to load up. 

This year the raffle is for a brand new Pearl White 2016 brand Camry. 

This is also a great way to make a donation.  WIN WIN

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The Walk to End Alzheimer’s

Saturday October, 28, 2017

Matthew Whaley School

301 Scotland St. Williamsburg, VA.

Registration at 8:30 am Ceremony at 9:40 am Walk at 10:00

 

*remember that I write from my heart – if I can not be honest I might as well sit and talk to myself.

Thank you for your love and support.

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Telling the World

As you know I am passionate about my disease.  It’s difficult for people to understand how horrible this disease is.  It’s getting worse, not just for those of us with it and our care partners but the world.  This is going to impact YOUR insurance, YOUR income and YOUR quality of life.  The only HOPE is to stop it – find a cure – not just a band aid.

This is why I try so hard to raise awareness.  Want me to talk to your group??  I can do that!  Want to join my walk team – YOU can do that.  We have to do this together.  So many terrible diseases are on the downward slope and I love that – less cancer, less heart disease BUT Alzheimer’s is rising at an unstoppable speed.  Baby Boomers are getting older.  (April 2014) Data from the U.S. Census Bureau show that there are 76.4 million baby boomers.  Yikes!!

The Alzheimer’s Association report for 2017 shows the growing cost and impact of Alzheimer’s.  For the first time, total payments exceeded a quarter of a trillion dollars ($259 billion) for people living with Alzheimer’s, other dementia’s and their care partners.

The way I see it is we help now or we pay later and later may be too late.  Yes, money does not grow on trees (as my Dad told me all through my teen years) but without a cure there might not be any trees in our future.

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Oh YES, I’d also love to find a big business sponsor to help my team, HOPE CREW, reach our goal.  If you can help please let me know.

 

So Sharron, How are you doing?

As you I have good and bad days.  Mine have been fairly good lately.  I have to ask Tom how I’ve been as he knows me better than anyone.  I pray daily and keep my fingers crossed for good days.

On Sunday May 21st Tom and I were baptized in the James River.  What a wonderful feeling.  So happy we found LifePointe Christian Church.

http://www.lifepointechristian.net/

Confusing to Me?

I have been reading another BLOG by a male with early stage Alzheimer’s and I, like him, have many “issues”.  One such issue is related to different types of friends.  There seem to be friends that stay, some leave, the neighborhood friend and then family (which should also be “friends”.)  Like him I do not understand the idiosyncrasies that go along with all these relationships and how they change – or why they change.  Aren’t they suppose to be with you until the end?  The “Neighbor Friend” – now that concept is new to me but folks – it does exist.  As long as you’re a neighbor they’re your friend??  You move and you’re not?  My heart is heavy as last year I lost my wonderful neighborhood walk team of 2 years.  I am still confused and sad.  As he would say, “Hop on my bus!  I yell, WAIT FOR ME.

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“Hope Crew

Please join my team to walk OR just show support.  It shows that you care and support the cause, finding a cure and ME.

The site below will take you to my home page where you can donate or join my team.  Let me know if you have any questions.  Just do it.

http://act.alz.org/goto/SharronWarren

MY GIVING

Many years ago I had a fun jewelry business.  I am now selling my jewelry on Facebook with ALL proceeds going to the Alzheimer’s Association.  You will all be touched by Alzheimer’s.  If you are reading this you are touched just knowing me.

If you do not use Facebook I’ll be glad to email pictures as I post them.  WIN – WIN for all.  See below for three of my favorites.

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The Walk to End Alzheimer’s

Saturday October, 28, 2017

Matthew Whaley School

301 Scotland St. Williamsburg, VA.

Registration at 8:30 am Ceremony at 9:40 am Walk at 10:00 am

#1 $25      #2 $11      #3 $25

Thank you again for all your support.

slbeach703@hotmail.com

*remember that I am not always responsible for what I write!!

Reason To HOPE

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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.

 

But first:

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. 

 

Good morning,

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.

Tom

“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?

AWESOME!!

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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.

http://act.alz.org/goto/SharronWarren

Taking Care of US

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Helping a person with dementia maintain his or her appearance can promote positive self-esteem

While these tasks may become frustrating for a person with Alzheimer’s in the later stages of the disease, the tips below can help simplify the process.  Don’t even try to tell us in early stage folks how to dress – HA!!

Simplify choices

Keep the closets free of excess clothing – this is very overwhelming. I am thinning my closet for 2 reasons – I have lost weight so clothes that are too large must go and the clutter of a walk-in closet can be overwhelming. I am always rearranging!

Organize the process

Lay out clothing in the order that each item should be put on. Hand the person one item at a time while giving simple, direct instructions such as “Put your arms in the sleeves,” rather than “Get dressed.”

Pick comfortable and simple clothing

Sweaters, shirts and blouses that button in front are easier to work than pullover tops. Make sure that clothing is loose fitting, especially at the waist and hips, and choose fabrics that are soft and stretchable.

Choose comfortable shoes

Make sure the person has comfortable, flat non-slip shoes. Love my Sketchers.

Be flexible

If the individual wants to wear the same outfit repeatedly, buy duplicates or have similar options available.  Keep in mind that it is important for the individual to maintain good personal hygiene, including wearing clean undergarments, as poor hygiene may lead to urinary tract or other infections that further complicate care.

Grooming

A person with dementia may forget how to comb hair, clip fingernails or shave.  He or she may forget what the purpose is for items like nail clippers or a comb.

 

Agitation – this might be a repeat but it’s a tough topic.

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 Anxiety and agitation may be caused by a number of different medical conditions, medication interactions or by any circumstances that worsen the person’s ability to think.  Ultimately, the person with dementia is biologically experiencing a profound loss of their ability to negotiate new information and stimulus.  It is a direct result of the disease.  Any stage suffers from anxiety and agitation.

Situations that may lead to agitation include:

Moving to a new residence – that’s me

Changes in environment, such as travel, hospitalization or the presence of houseguests – me again – the hospital part for sure

Changes in caregiver arrangements – I hope that never changes

Fear and fatigue resulting from trying to make sense out of a confusing world – yep

 

Tips to help PREVENT agitation

To prevent or reduce agitation:

Create a calm environment.

Remove stressors. This may involve moving the person to a safer or quieter place, providing rest or privacy. Try soothing rituals and limiting caffeine use.

Avoid environmental triggers.
Noise, glare and background distraction (such as having the television on) can act as triggers. Can be one of mine.

Provide an opportunity for exercise.
Go for a walk. Put on music and dance.

 

How to RESPOND to Agitation

Do: Back off and ask permission; use calm, positive statements; reassure; slow down; add light; offer guided choices between two options; focus on pleasant events; offer simple exercise options, try to limit stimulation.

Say: May I help you?  You’re safe here.  Everything is under control.  I apologize.  I’m sorry that you are upset.  I know it’s hard.  I will stay with you until you feel better.

Listen to the frustration.
Find out what may be causing the agitation, and try to understand.

Involve the person in activities.
Try using art, music or other activities to help engage the person and divert attention away from the anxiety.

Find outlets for the person’s energy.
The person may be looking for something to do. Take a walk or go for a car ride.

Check yourself.
Do not raise your voice, show alarm or offense, or corner, crowd, restrain, criticize, ignore or argue with the person. Take care not to make sudden movements out of the person’s view.

See the doctor.
See the person with dementia’s primary care physician to rule out any physical causes or medication-related side effects. As usual, no meds for me!!

 

My cousin (thank you Sandra) sent me this so I guess we both “borrowed” it!!  Communication is important in any relationship but more so with people suffering from any dementia. We have a hard time expressing ourselves.

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So Sharron, how are you doing?

I am loving this weather even when it flip-flops back and forth.  The sunny days are worth a little wind and cool temps.  We’ve even been able to enjoy the terrace a few times.  My rooftop garden looks great!!

As with people in my situation the tears flow freely.  Sometimes there is a really good reason and sometimes it’s from frustration.  We went to Home Depot last month to talk to the floor and tile lady about scheduling an appointment to have our kitchen backsplash installed.  She was so useless and ignorant. The sad part is that she’s been doing this job for over 5 years!!  I was so frustrated that I had to walk away before I blew up.  I went outside and had my meltdown.

I do not like to be asked too many questions this overwhelms me.  You are more than welcomed to ask how my knee and memory are doing.  No one seems to do that??  This month I was told twice that I don’t “look” like I have Alzheimer’s – what the heck does it look like??  I held my tongue.  Many other questions were asked and there I was again – in a situation where I felt like I was being drilled.  The frustrating part is one was a care partner of a person in a later stage so NO, I do not look like that.  Once again – NO, I do not take those drugs.

 I am trying to find a cabin near the Shenandoah River for a few days of R&R in May.  If I can find something and it’s nice we’ll book it again for a few days in the summer so we can go tubing!!  Yep, bad leg and all.

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I have been asked to speak at the “reason to HOPE” William and Mary Alumni breakfast later this month.  I love opportunities to speak and for people to see another side of Alzheimer’s.  Thank you Gino V. Colombara, my favorite Executive Director for this wonderful opportunity.

 

My son Rodney will be 42 on the 4th. Tom and I raised a wonderful son.  HAPPY BIRTHDAY.  Dinner and cake tonight!!

April is Autism month, in honor of my sweet grandson, Riley who has Asperger’s we light it up blue at our house.  He is one awesome, smart and funny almost teenager.

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Last but not least we are meeting our good friends at Short Pump (Richmond, VA) tomorrow.  We try to do this 3-4 times a year.  With them living in Charlottesville it’s a halfway point – good shopping, eating and GREAT friends.

The annual Williamsburg Alzheimer’s Walk is only 7 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.  Joining my team does not mean you have to make a donation (but you sure can).  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.  Let me know if you have any questions.

http://act.alz.org/goto/SharronWarren

 

As always please share with your friends or family and FOLLOW me for monthly updates.  The “FOLLOW” button is on the right side of this page.

Thank you again for all your support.  I hope all of you understand the statistics and how it will affect ALL of us.

I am fighting for a CURE – for my Son and Grandchildren

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Emma at her school play last night – the 30th.

Do Not Argue!

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When your love one has Alzheimer’s their actions can (and will) make their care partner angry and temperamental, the care partner have to learn to let go of being right.

 

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This may be difficult for many of us with any form of dementia and their care partners.  The pharmaceutical companies are trying to help us BUT maybe there is no help…………..maybe this disease can not be prevented or stopped.  Maybe the brain is too complex.   I like to think on the bright side and have hope but some days it’s difficult.  So many scientists, so many years with so little to show.  I will still keep my faith – miracles do happen.

 

Twelve “easy” steps – so they say

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Yes, I did “borrow” this wonderful article.  These “12 ways to Create an Empowering Dementia Environment” is well worth the read.  I know from experience several of these work for me – not all and not always – but Tom keeps trying.  A care partner’s job is not an easy one but then living with any form of dementia is not easy either.

 

Fooling the Doctor: Cognitive-Reserve Hides Alzheimer’s

 http://www.alzheimersweekly.com/2015/10/fooling-doctor-cognitive-reserve-hides.html

PLEASE watch this great video.  It may answer so many questions I receive – how do you talk and socialize so well.  Cognitive Reserve – many of us are able to pull this off.  Hence – “You appear so normal.”  By the way – what is NORMAL??

 

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So Sharron, how are you doing?

For some reason this has not been the best of months.  My pain is interfering with living a fun life.  The pain is constant but I still keep exercising and walking.  My mood is sour but none of you will see that.  That is reserved for home.

This beautiful weather makes me anxious to travel.  I will have plenty of time to just sit around the house but I want to go while I can.  So far that’s not working out.  Maybe we do need a little break. 

Sadness is a hard thing to overcome.  It is similar to depression but a feeling all its own.  We all have off days but sadness is such a different feeling.  I pray for it to be lifted. 

On a better note I am looking forward to having a garden on our terrace.  We loved our garden years ago and have not had one since.  There is nothing like cutting your own lettuce for a salad.  I have many pots to plant.  That leaves Tom the duty of carrying all that soil to the 4th floor.

HA!!!  I wear him down mentally and physically.

BY the Way – I also have many joyous moments.  I am still able to drive and shop.  I am able to take Tom where he wants to go.  I love seeing my youngest grandchildren, Riley and Emma.  I love this beautiful weather we have been blessed with.  I love my times on our new terrace and at Jamestown Beach.  I also love that Spring and Summer are right around the corner.

My life is not all doom and sadness.  I thank the Lord for that.

 

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Oldie but Goodie

For those new to my BLOG or have forgotten my December 2015 BLOG (HA – I have!!)  I thought this is worth repeating.  There are people diagnosed every day with Early Stage Alzheimer’s or Mild Cognitive Impairment.  These are still so important to me.

So Sharron how are you doing?  December 2015

My emotions are all over the place and I can snap in a second.

I get angry at myself for not being able to remember something.

I get angry at Tom for not being able to figure out what I want.

I get upset with new procedures such as figuring out a new phone or computer.

So far I can keep myself under control in public.  If I feel uncomfortable, ready to have a meltdown or are in a too crowded area I tell Tom and we leave.

This is the disease.  I am not always in control.

I want you to know how I feel

Let me be independent. Let me do as much as possible

Love me as you always did.

Speak directly to me.

Talk to me or read to me. I do not want to lose the ability to talk.

Loving touches are so important.

Continue to let me, or help me do hobbies or activities I enjoy.

I want a say on who helps out – I chose who I do and do not want around when I start progressing.

I want reliable help that I like.

Let me take care of myself while I can – see friends, go out to lunch or dinner.

Keep me engage with family and friends – even if I do not know their names. Have friends and family visit.

Make me feel safe – where I live now.

Celebrate the small things I can do.

Do not treat me like a burden.

One thing to remember is that I am still a person. When I can no longer remember names of family and friends and you talk in front of and around me like I am not there you do not know what is going on in my brain.  I may very well understand what you say.

 

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The annual Williamsburg Alzheimer’s Walk is only 8 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.  Joining my team does not mean you have to make a donation (but you sure can).  It shows that you care about the cause, finding a cure, a loved one with this disease and ME.

The site below will take you to my home page where you can donate or go to JOIN MY TEAM.  Let me know if you have any questions.

http://act.alz.org/goto/SharronWarren

As always please share with your friends or family and FOLLOW me for monthly updates.  The “FOLLOW” button is on the right side of this page.

 

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Thank you for your love and support.

 

 

 

 

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The Tip of the Iceberg

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In my last BLOG I wrote about symptoms people don’t usually see so therefore they find it hard to believe you have Alzheimer’s or any form of Dementia.  After my BLOG was published I found this.  Share please with friends and family – they rarely see under the iceberg.  Pretty amazing what we can hide.

 

 

VALENTINES DAY

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Another Holiday is on the way.  Valentine’s Day is one of the less stressful holidays so if you have traditions try to keep them.  If it’s not possible try something simple like watch a movie, cook something simple but delicious, go for a drive or a walk.  If you are a Care Partner these special days are going to be forgotten soon so grab what you can now.  I’m sure you can figure out what that special thing is.  Make it fun, sweet and simple.  MEMORIES.

 

The Brain and What it Controls

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Plaques and tangles form inside our Alzheimer’s/Dementia brain.  Once they find their way in – the downward slop begins.  I imagine that these invaders do not take over the brain all at once but that they start in certain areas of the brain then start spreading out.  This is why one day, month or year we can do something well and then it’s lost.

People just can not wrap their mind around how this picture, with all its beautiful colors is a brain.  While our brain is amazing it is not very pretty.  When I see pictures of plaque and tangles, which are also make look beautiful, it is hard to imagine that there is room where one can still talk and communicate so well.  While it’s a worn out topic for me I’m hoping this explains it better.

This is how Alzheimer’s progresses.  For some from diagnoses to death can happen in a few years but some manage to last 10-20 years.  It depends on how fast those plaques and tangle grow.  I feel so fortunate that while I am progressing I am doing so slowly and continue to have my social skills and speech.  If you look at the little part of the brain where the speech is – I seem to be free, for now.  Oh, I also have no problem with taste!!

One thing I am so glad about is that I still have MY opinion.  My opinion should not bother you as your opinion should not bother me.  I’ve always been very opinionated but more so now and I have been known to write or blurt things out.  Most of the time it is not what I would have done a few years ago but YOU forget who is writing or speaking.  While I want to be “normal” – I am not, so shame on you for not remembering that.  This pertains to all of us with Alzheimer’s.

 

PBS Specials

I hope you have been watching the wonderful PBS Specials on Alzheimer’s.  I know they will be repeated so check PBS to find the next showing.  A big eye opener was “Every Minute Counts”.

The increase of Alzheimer’s as Baby Boomers get older and the toll it take on Medicaid, Medicare and private insurances is unbelievable.  There is a wonderful graph of the government money that is given to several diseases and while those diseases are “under control” Alzheimer’s is not getting nearly as much money and this disease to growing at an unbelievable rate.

 

A repeat of Tom’s Words from Aug. 2015

I thought this was worth repeating

“The next few paragraphs are by Sharron’s husband, Tom. This is my observations on the changes.

Very often when Sharron tells someone of her problem they minimize it, saying things like, “I forget things all the time”. “Just the other day it took me 5 minutes to find my keys.” “You seem so normal.”

Cognitive impairment is not like that. My perception is there are basic mental processing issues. Not affected are things like motor skills; the ability to see and react; and the ability to talk. Thinking processes are affected. Things like logical problem solving, and dealing with the unexpected.

When you lose something, your keys, you think back such as what I was doing when I got out of the car, trace back your steps and find those keys. Now if you have no idea what you did over the past 5 minutes, where would you look?

On the subject of communication, I remember one day in 2011 when I told Sharron she is using too many pronouns. If you cannot think of someone’s name, you can just say “she”. If you cannot think of an item, you say “pass that to me”. In 2014 I heard “pass me the flipper over thingy” and “That temperature measuring device.” Now in 2015 the word challenge is progressing to sentences. Imaging getting half way through a sentence and forgetting how to end it. The loss of words is frustrating for both of us.

We need to separate conversation into 2 different types. There is what I call ‘shooting the breeze’ like friends just sitting around chatting; then there is ‘direct’ communication, where information is conveyed to someone. When Sharron is shooting the breeze everything seems normal. Words flow; there is a normal two-way interaction. Sharron can be telling a wonderful story of our last trip, but her color commentary will have fractured some facts. I like to say she can be talking about or trip to Florida when we actually went to Georgia.

Direct communication is much more challenging. Because recall of recent events has been confounded, passing information that you have had that pain for one week becomes twisted to something like ‘a couple of months’. To address this Sharron is writing many events in her journal or day planner.

Even with the challenges we still live our lives. We have overcome a serious leg fracture, and are back to living. Last week was at the beach.  We have plans for more travel in place. We are not letting Alzheimer’s control our lives.”

 

So Sharron, How are you doing?

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Me and a treat from Menchies

I am enjoying the monthly Memory Café.  It is always nice to see folks from our first support group.  Time is short so it’s hard to talk to everyone.

My knee is progressing and I’m able to get some walking exercise.  We go the Williamsburg Landing fitness center three times a week.  Riding the bike is great for my knee.  Pain??  Oh yes!!  I have pain most of the time, but I also have faith.

I’ve always talked to myself but it’s getting worse and now it’s really irritating me!  Yes, I do answer.  I’m coming to realize it may be a coping mechanism.  I know I am talking to myself at the time but I can not stop.  I believe we all talk to ourselves at times but all day long is a bit much.  When you start irritating yourself you’re in big trouble.

I am enjoying the sunshine days and counting the days until Spring.  I am not a winter person so anything below 50 is cold to me.

I am so happy that the election is over.  We need to put on our grown up pants and support our President.  With so much un-American spirit and hatred I’m still proud to live in America.  The rest are welcome to leave.  I know we all have our own opinions and that is what’s great about America.  The terrible words I heard and received have relieved me of a few friends.  No room in life for that.  Put on a smile and be happy you live in the land of the FREE.  GET OVER IT !!

 

 

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I put on my Happy Face as I wonder around the house

trying to remember what I need to do or where to go

I am still aware that my brain misfires but I pray for a better day

I find that I’m still able to hide my fears, mistakes and tears but when will that go away?

Hang on a little longer I tell myself

I fear the time will come when I can no longer remember loved ones names or faces

But for now I know the ones I love

I pray they will remember me – I know my loved ones will keep on loving me, no matter what happens

Taking care of me is my biggest fear

This is all so scary

 

 

As always thank you for taking the time to read and PLEASE share.

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My Family – Riley, Trisha, Rod, Alexyss, Emma, Tom and Me

I hope everyone had a nice Thanksgiving and Christmas.  We were so fortunate on both days to have a great meal at my Son’s house.  His wife is an awesome cook – thank you Trisha!!  In the middle of those Holidays was my granddaughter’s birthday so – another dinner!!  Yea for us.  I know all of us love the leftovers so on the 27th Tom and I cooked our own little turkey meal.  We ate for days!!!

I know the Holidays can be rough for us and our care partners.  Such as – I do not handle large crowds and a lot of noise.  Many Alzheimer’s studies have shown that smaller celebrations with less chaos works better.  If I find myself at a large party I tend to find a seat as far away as possible and Tom takes over from there – such as delivering me food and drinks.  As I’ve said before I’ve been know to leave crowded grocery stores before finishing my shopping.  We rarely go out to dinner but chose lunch and if we pick dinner with friends it’s a quiet place. You will never find me in Bonefish Grill!!

 

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This is an article from “Alzheimer’s News Today”.  I want to show you how SLOW these companies are to finding a cure for Alzheimer’s.  Above is what they think the plaque and tangles look like.  Beautiful, isn’t it?  NO

“An investigational treatment for Alzheimer’s disease (AD) could be on the horizon, according to a study from researchers at Biogen and the University of Zurich. Aducanumab, a human monoclonal antibody, shows evidence of reducing Alzheimer’s amyloid plaques — the culprit behind AD-induced brain cell death.

The treatment candidate is potentially the first of its kind, since current medications for Alzheimer’s slightly delay symptoms and do not prevent the disease from progressing.

The research report, “The antibody aducanumab reduces Abeta plaques in Alzheimer’s disease,” was recently published in the journal Nature.

Previous studies in mouse models of AD showed reductions in the sticky brain amyloid plaques with injections of aducanumab. In this trial, humans with mild Alzheimer’s disease received intravenous aducanumab for one year. A total of 165 patients participated in the study and received treatment from October 2012 to January 2014 at 33 clinical sites in the U.S. Participants in the study received monthly intravenous infusions of a placebo or aducanumab at four different increasing doses.

As the dose increased, so did improvements in clinical measurements of cognition and memory, known as Clinical Dementia Rating—Sum of Boxes and Mini-Mental State Examination scores. Even more remarkably, brain amyloid plaques decreased, and were almost completely gone in the group that received the highest dose of medication.

“The results of this clinical study make us optimistic that we can potentially make a great step forward in treating Alzheimer’s disease … ,” Prof. Roger Nitsch of the Institute for Regenerative Medicine at the University of Zurich said, according to The Telegraph.

“Despite it being a small sample, there appeared to be a slowing of cognitive decline and functional decline. The group with a high degree of amyloid removal were basically stable. If we could reproduce this it would be terrific,” Nitsch said.

Additional studies are needed for the FDA to consider approving the medication — which could take years, since the current study is a Phase 1 trial, and phases 1 through 3 in human clinical trials are required by the U.S. Food and Drug Administration (FDA). This study could be a crucial step toward the first disease-modifying medication for the treatment of Alzheimer’s disease.

“This is the best news that we have had in our 25 years and it brings new hope to patients with this disease,” said Dr. Alfred Sandrock, from the Massachusetts-based biotech company Biogen.”

 

https://www.mindcrowd.org/

Above is a great little website that is trying to do something for Alzheimer’s.  I read it daily in hopes they have news I was not aware of.  I took this test just for the fun of it.   For those skeptical of my diagnoses I scored a 14%.  Most of my parameters for my age, education etc. should be in the 50-65%.

 

So Sharron, how are you doing??

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I have found Jigsaw puzzles on my iPhone and iPad that are so much fun.  As always I get the free ones but I do believe they are good for the brain.  You can set them for any number of pieces – depends on how brave you are and how good your vision is.  Working on these puzzles is more fun on my iPad but can still be challenging.  It’s a source of relaxation for me.

If you are still able to walk DO IT.  It is great for the body and mind.  Since my knee replacement I’ve been trying to walk more to keep my knee limber.  While it is still painful for me I keep going as I know there is ice at the house waiting for me!!  I’m looking forwarded to the spring and summer so we can walk more and head to the beach.  Walking on the beach is great for your mind, soul and legs!

These past 3.5 months have been rough but when I read the paper or check Face Book I realize that I have it pretty easy.  We have a nice house, car (though older than I like – hint-hint ).  We have food, places to visit and the funds to get there.  Yes, we are blessed but I still manage to moan, something I can no longer control.  Tom is blessed with select hearing.

I read an article recently about a person with Early Stage Alzheimer’s who was doing “great” as his friends and family would say.  They pestered him into believing he was a fraud – that things, in their eyes, were fine.  The things they do not realize are that people move at a rate unbeknown to us AND we put on the best show we know how.  Some go from diagnoses to 1 year later with serious dementia and mobility issues and some of us can live for 20 years before severe issues occur.  God made us all different so please do not question or “interview” us.

When I act wonky people tend to forget my diagnoses.  I may not realize I’ve offended someone or appear angry so you need to remember and be kind to all of us.  There are people who question my views of the Alzheimer’s medications and why I don’t take anything.  I will not answer that question again.  There are those who say “Nothing can be wrong with you as you speak so well.”  I think to myself – then be happy for me.  That part of my brain is not affected – yet.  I don’t want THAT label but it is what it is.  I just want people to understand those of us with Early Stage Alzheimer’s.

My goodness would I love to be dementia free.  Don’t we all??  Don’t you wish your loved one did not have this terrible disease?

Don’t we also wish after all these years of research there would be something that really works?  Instead of medications we are saving our money for down the road and pray there is a cure for our grandchildren as there will be none for us.  It’s been said that Baby Boomers will bankrupt the government and insurance companies.  Someone needs to get on the ball.

 

 

Exercise, sleep, socialization and keeping active are all we have to keep our mind from fading away.  Get with it!

 

Thank you for all your support.

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My Mother on her wedding day – age 14!!!

I’d like to thank those of you who have been following my BLOG for the past 2 ½ years.  The biggest part of my BLOG is for you to understand someone living with Early Onset/Early Stage Alzheimer’s – day to day and month to month.

Another reason I write is to possibly enlighten people who suffer from cognitive impairment.  I was also hoping through my BLOG to find someone “like” me and be able to share, help and become a support system for each other.  Tom and I did find 2 lovely couples that we can call and chat with.

In September we moved to a new TALL (4 floor) townhouse. The reason for the move beside the rooftop terrace was for Tom to have better access to grocery shopping, restaurants and his guitar lessons.  Being vision impaired allows him so much more freedom at our new location.

 

DISAPPOINTED

I am very disappointed when I see a headline that reads “New Alzheimer’s Treatment” and it’s either a version of what’s out there and not working or some form of a vaccine tried on 10 mice in a foreign country.

With our donations and the help of the Government I pray that scientist will be able to find a cure.  It may be that there is no cure – the brain is so complex and different than a lot of bodily diseases.  The brain is full of wires, blood vessels and many things unknown but there has to be an effort to cure this terrible disease.

I LOVE THIS   

From the Alzheimer’s Prevention Bulletin

 “I envisioned a cover of National Geographic 10 years down the road with postage-stamp size images of people from all over the world, each getting an injection to prevent Alzheimer’s disease”

 

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So Sharron, how are you doing?

 

The past few months have been really rough with the move and trying to maneuver all the steps.  We packed everything ourselves and had the movers from “H”.   They made a mess of the new house coming up the stairs   dripping rusty water on the carpet.  The best part is that it’s over and we learned a lot – such as, we will never move again!!  Then, we said that 3 years ago!!

My bad leg took a beating with the move.  I moved my surgery from October to September 27th.  I had one surgery in 2014 (kidney), three in 2015 (fractured leg) and my knee replacement was done in September.  I pray this will be the end!

Since I am SO behind in posting this is already the middle of November.  My knee is not healing as fast as I thought so there is constant pain and tiredness.  I pray for having Tom every day but these rough 2-3 years has shown me his resolve, love and attention.  Daily I pray that his vision does not get worse and that he will always be able to see me.  Prayers and church are good for us – we all need strength – no matter where we find it.

My Alzheimer’s decline is slow but it’s still downhill.  It is sad and depressing and is taking a toll on me and Tom.  Care Partners have a tough job.

Happy notes: Meeting new people and having our monthly Memory Café.  The facilitators, who volunteer their time, are awesome.

Getting to have family time and visit with the grandchildren.

Tom fixing me dinner every night and watching movies.

 

 

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HAVE A WONDERFUL THANKSGIVING!!

Remember to give thanks for what you have.