Tag Archives: hope

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.

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“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

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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A JOYFUL MONTH

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In these days of uncertainly I wanted to share a wonderful experience I recently had.  The readers of my BLOG are such giving people and I found there are others!  On our drive a couple of weeks ago we stopped at a WaWa for gas and a special coffee for me.  While I was checking out the cup sizes a tall man about 50ish said “Go for the super large, it’s cold out there” he left and I filled up the super large cup.  I went to pay and cashier said my coffee was already paid for.  My jaw dropped and I almost cried. There are good people out there.  Now I will be looking to pay it forward.  You should too….what a feeling.  Giving should not be left just for Holidays.

PS:  I was able to pay it forward in Jamaica to our airport bus driver. I’m not done.

At church we picked 2 boys from our church’s Angel Tree to make Santa a reality. We could have taken one child or a senior but 2 local brothers age 8 & 9 just tugged at my heart.  Our gifts will be all they get.  Can you imagine?   Please think of doing this for a child or a Senior.  If you can not do it alone share with someone, have friends and family contribute.  Giving is an awesome feeling.  Giving is not just for the Holidays.

Planning

I know I’ve done this topic before but I find it so important especially with the New Year right around the corner.  It will make a nice resolution.

We have a plan.  We made our plan almost immediately after my diagnoses.  I have thought about the day I was diagnosed many times and the way I would want to live my life.  If Alzheimer’s runs in your family then you have a longer time to plan.  Make that plan.

IT will not get better, IT will not go away and IT will kill you as there is NO cure. You need to plan, not only emotionally but financially.

One of my top requests is to remain independent for as long as possible.  Most of you know that I still remain opinionated, outspoken and feisty. Good for me!

 

I thought I’d give you the definition of DIGNITY as it seems lost to some.

Dignity

the state or quality of being worthy of honor or respect.

“a man of dignity and unbending principle”

a sense of pride in oneself; self-respect.

“it was beneath his dignity to shout”

self-respect, pride, self-esteem, self-worth

“he had lost his dignity”

My number ONE request towards the end is to preserve my dignity.  Please do not EXPLOIT me or others with Alzheimer’s.  This is being done to some and I am appalled that “loved” ones are resorting to begging for money using the person with Alzheimer’s as the “Poor Pitiful Me.”  Where did the dignity go?  Where did the planning go?  If you did not plan then I feel you have no right to exploit your loved one for any gain.  I am so sad.

All of us with Alzheimer’s should have our dignity respected, especially in the later stage.  At this point we do not know our loved ones and we are therefore unable to make decisions.  Dignity matters.  Please understand that.

Dignity always matters no matter what your life problems are.

 

So Sharron how are you doing?

I feel really really well.

We had a wonderful vacation in Jamaica and my Alzheimer’s behaved!!  HA!! and I gained weight – UGH!!

I know I’ve said this before but as my Alzheimer’s progresses and hard plans are being made connecting with family is important.  I am sad that so many remain with their heads in the sand.  I wish they would make that leap. It also saddens me to reach out and get nothing – you know who you are.  Why is connecting to family so difficult?  Are they afraid they will catch my Alzheimer’s?  Do they not care?  I reached out to three family members and no one responded.  I find this so sad for them.

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The Holiday Season and I do not get along very well so I will try to have my best leg forward (that would be my left leg).  Even though I do not like large crowds I do envy families that celebrate the holidays by being together for days, cooking together and enjoying their time with family.  I have fond memories of the past that I can draw from – my parents were the best and were around not just for Holidays but all year, every year.  My door was always open.  It was bring on the wine then start cooking.  My little sister, I miss those times.  My sweet son, I also miss those times and hope you will always remember.

I think the best part of Decembers for me will be another leg surgery.  YEA!!!!  Not sure it will be so grand for Tom.  Sorry Big Redd.

My Holiday will be spent in bed and what a joy that will be.  I am praying that the removal of the two plates and 18 screws will alleviate my pain and improve my movement.  Prayers are always needed.  Therefore…..all I want for Christmas is a leg with no pain………..it’s been long enough.

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Is that a sexy leg or what?

After all the joys of this month we start a new year.  Please pray for a safe and happy year.  This has been a rough year for so many.

Blog pic Dec. 2015

 

 

Love must be sincere. Hate what is evil; cling to what is good.  Be devoted to one another in love. Honor one another above yourselves.  Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.  Be joyful in hope, patient in affliction, faithful in prayer.  Share with the Lord’s people who are in need. Practice hospitality.

 Be kind and be grateful

 

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