by Sharron Warren

Posts tagged ‘partner’

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

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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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Where Did The Week GO?

To those who understand – this title can be rather amusing.  I could also title it – “Where did that thought go?” or “Where did that word go?”  For those of us with memory problems our days are spent trying to remember all the little things.  If not for my day planner that I always keep on desk I’d be lost for everything I do or plan or have done that day goes into that book.  It never moves and I never take it with me for it tells ME my life.  If you are where I am then you can understand, if not you can say “Oh, I have a day planner too!!”  You do not have a day planner like I do and you do not use it to remember what you did a few days ago.

At the EASE meeting last night we discussed communication with our Care Partners.  It was wonderful to hear the different stories of how our Care Partners communicate, or don’t communicate and funny stories of how we sometimes are the Care Partner.  Having AD or any memory problem can be hard on loved ones so sometimes we have to step back, take a breath and show some love for those special men and women.  They don’t want pity, they want to help and support us – we are after all PARTNERS and most of us have been married over 14 yrs. so being a partner I was reminded isn’t anything new – just different now and different is OK.

I’d like to thank the EASE group for surprising me with a birthday cake & to one of my wonderful AD friends for actually singing to me  (Wonderfully) two Elvis songs…………….took my breath away, not only to be sung to but to hear this man sing.  You are amazing!!

Now that summer is in full swing so is our calendar but that’s a good thing.  Staying busy and staying connected to people is a good thing for AD people.  As I told you I’ve not told anyone about my condition in our community and I won’t for a while – maybe because I don’t want pity, I don’t want to be different, I don’t want to be corrected and I don’t want AD minimized.  I may appear “normal” to those around me and telling someone opens up a whole new world – so for now I will appear “normal” for a little while longer.  As I said in EASE last night, when I am stuck on finding a word or forgetting a story in the middle I always say , “I need more wine!!”

Enjoy the week.