Tag Archives: Alzheimer’s

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

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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Blessing for the New Year – 2017

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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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WHERE DID MY BRAIN GO?

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I am taking a little summer break with shorter BLOGS until September then I (we) ramp it up for the Walk to End Alzheimer’s October.  Though I am always so tired, especially in the afternoons I hope my Villa’s Team and my hubby Tom will pitch in and help our team excel.  We rocked it last year!

Our vacation to Arizona and New Mexico was wonderful.  Tom limits my driving and so we had time for the pools and relaxing. Still it’s always nice to be home.  I am more tired, grumpy (HA!!) and emotional when I have to fly.  Watch out TSA!! (just kidding).  I want to see everything but it’s not possible.  I know – it’s not possible for many of us as we get older.  I’m trying to learn to live with it but my brain feels so foggy at times.  Where did the sharpness go??

 

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If you have a half an hour or so I’d recommend reading this article.

 Fraying at the edges

 https://outlook.live.com/owa/?path=/mail/AQMkADAwATY3ZmYAZS1iOGI5LWNlMWItMDACLTAwCgAuAAADJADrYjbZhEeu%2FZDrpqAUYwEA4XCyDHGDz0K1ebgDPcfC3wAAAEMZw6kAAAA%3D/attachmentlightbox

 

So Sharron, How are you doing?

 

  • On June 19th I rolled out of bed, took my shower and got dressed for church ON A SATURDAY………..then made a big production to Tom about being ready early – OOPPS

 

  • We are enjoying the pool and beach so from me to you – enjoy your Summer!  Heck, enjoy life!!

 

  • My Days are not as good you might think.  I should have been an actress.  My Mother used to call me “The Drama Queen”.  She also said be careful what you write as it may come back to haunt you.  Look at me now Mom……

 

  • I miss my sister.
  • This is HARD for care partners.

 

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The 2016 Williamsburg Walk to End Alzheimer’s® is on October 22 at Matthew Whaley Elementary School. This will be my 3rd walk.

In 2015 our chapter (Southeastern Virginia) raised over $735,000 through 6 chapter-hosted Walk events.  My wonderful team – The Villas of Five Forks – raised over $4500 and we placed 5th in Williamsburg – right below all the LARGE corporate teams.  WE ROCK!!

We will all meet again at Dan and Marianne Raymond’s house before the walk!!  Yippee – Donuts!!!

Alzheimer’s raffle tickets this year are for a Toyota RAV-4.  Only 20,000 will be printed giving everyone a better chance of winning.  This is a great way to donate and just maybe get something in return!!  WIN-WIN for all.  The tickets are $5 each but we LOVE to sell them in packs of 4 for $20.

I am still looking for items to raffle off at Brookdale.  They are so kind to let our team participate and I hate to waste that opportunity.  Baskets with goodies are always a great seller as are gift cards or homemade items.  Those with businesses have been great in donating services or gift cards but we need more.  We need your help!!  Calling out to Team Villa.  Please call or email to help out.  Any help is greatly appreciated.

slbeach703@hotmail.com/757-354-3113

Tom – warren450@hotmail.com/757-209-1977

**If you do not have a team you are more than welcome to join the Villa’s…….the bigger the better.  We can help you get registered.

 

As always, thank you for your insight Dear Cousin:

“Maintain relationships.  I imagine many want to hide because they are “not themselves”.  But, my first thought was that it isn’t the person in the gripe of Alzheimer’s that needs to maintain relationships.  It is the people who have been friends, etc. who need to suck it up, think less about themselves and stay in the relationship as it changes.  That is, to me, the part of our humanity that we need to practice.  Every thing changes and we adapt.” 

 

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THANK YOU MY SWEET LITTLE SUPPORTERS!!

 

 

 

The Wheels Keep on Turning

 

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Executive function is a set of mental skills that help you get things done. These skills are controlled by an area of the brain called the frontal lobe.  There are days when I believe my frontal lobe has left for the beach.

Executive function helps you:

  • Manage time
  • Pay attention
  • Switch focus
  • Plan and organize
  • Remember details
  • Avoid saying or doing the wrong thing
  • Do things based on your experience

When executive function isn’t working as it should, your behavior is less controlled. This can affect your ability to:

  • Work
  • Do things independently
  • Maintain relationships

 

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Types of Executive Function

Executive function can be divided into two groups:

  • Organization: Gathering information and structuring it for evaluation.
  • Regulation: Taking stock of your surroundings and changing behavior in response to it.

More Problems with Executive Function

Some people are just born with weak executive function.  People with depression, or dementia have weaknesses in it.

An injury to the front of the brain, where the frontal lobe is, can harm your ability to stay on task. Damage from Alzheimer’s disease or strokes may also cause problems.

To improve time management:

  • Create checklists and estimate how long each task will take.
  • Break long assignments into chunks, and assign time frames for completing each one.
  • Use calendars to keep track of appointments, vacations, chores, and activities.  OH MY – this is ME.

To better manage space and keep things from getting lost:

  • Have separate work area- not the kitchen or dining table or the bed.
  • Organize the work space.
  • Minimize clutter.
  • Schedule a weekly time to clean and organize the work space.

This works for me as clutter means disorganization and that rattles my brain causing an unpleasant experience.  Just ask Tom.

 

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Fatigue

 When you care for someone with mild Dementia/Alzheimer’s disease, you can often see us change from one day to the next.  It’s common to feel overwhelmed!  But if you plan day to day, you can try different ways to help us cope.

For me having Alzheimer’s is like studying for a final examination every minute of every day. Just listening to conversation or doing the laundry can be exhausting for me. Even TV can be overwhelming at times, particularly shows with a lot of noise and motion or intense emotional situations.  I suffer from afternoon fatigue so much that we are learning not to do much in the afternoons except have quiet time.  This time is for my writing, watching TV, knitting or pool time.

 

Fatigue is the leading cause of behavioral issues in dementing illness.  Having an illness like Alzheimer’s disease is stressful and exhausting.  I need to work hard to follow conversations, perform tasks, and simply try to remember what I should be doing.  I think this is why I talk so much in social situations.  I feel if I keep talking and appear social that no one will notice my disease.  I experience significant fatigue even when I appear to be doing little.  One of the most important habits people with dementia need is to develop the ability to take regular breaks.  In this early stage I try to sit and read my magazines or put my feet up and relax in the afternoon. This helps me to have a stable mood and avoid “sundown syndrome” (a.k.a. late day confusion).  My sweet Tom may disagree with this!

Most important to me:

 Developing a Routine. Change creates stress for people with Alzheimer’s, since we have trouble understanding new situations.  I do my best to stick to a daily routine, which is so difficult when you want to travel and be active.  I try to choose activities carefully and to include rest periods – for my brain and my leg.

 

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Functional Loss, Avoiding Change

Functional loss is the inability to accomplish tasks.  It is the result of deceased “executive function” in the brain.  What this means is that when trying to reach a goal, such as laundering clothes, a normal brain automatically breaks the task into steps that must be done in order to accomplish the task.  In a healthy individual the more we do those tasks, the less thought it takes to do them.  For people with dementia the ability to determine the order of steps needed to be done is lost – especially when the person has to think about the activity.  The more the person has to think about how to do the activity, the more anxious and confused they become.  If you try to coach the person through the activity, the confusion about steps will become worse and people with dementia become frustrated and frightened.  They know they should be able to accomplish the activity.

Planning Activities

People with mild Alzheimer’s still want and need to be social to keep up their stamina, self-esteem and mood.  A local senior center can help with activities like exercise, games, and arts and crafts.  Also consider outings with friends and family, though be sure to plan around the thought that you may need to rest or to leave early.

Controlling Environmental Stimuli.

Some dementias affect the parts of the brain that interpret what our senses learn from the environment.  This means that vision, hearing, taste, touch, and smell are affected. The person still sees, hears, etc. but is progressively unable to interpret the sensory input.  It is somewhat easier to understand if you imagine your eyes as a camera.  They still take the picture but the brain doesn’t necessarily develop the film correctly. This results in decreased depth perception, ability to see moving objects, or not identifying common things.  This is especially true of what is seen on television.

Too much demand

All too often well-meaning family and friends try to “exercise the person’s brain,” asking repeated questions about the date, names of people, and current events.  This can be very upsetting as the person with early dementia is usually aware of their deficits.  Continuously testing a person does not help their memory and can produce anxiety and depression.  Thank goodness – no one does this to me.

 

Organizing the day

Remember to make time for yourself, or include the person with dementia in activities that you enjoy – for example, taking a daily walk.

A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Tom is already doing this.  Structured and pleasant activities can often reduce agitation and improve mood.  Planning activities for a person with dementia works best when you continually explore, experiment and adjust.

Before making a plan, consider:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or sundowning)

Make sure to allow for flexibility within your daily routine for spontaneous activities.

As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

To sum it up, the best way to plan for care for someone with early Alzheimer’s is to organize a consistent routine, with generous activities in an environment with moderate noise and people and at least two rest periods per day.  As your person’s dementia advances the above recommendations can be tweaked or intensified to continue providing care in the moderate stages.

So Sharron, how are you doing?

 TV does not hold my interest – too loud or too much action.

My mood swings faster than you can snap your fingers.

Things I have difficulty with now has a name – executive function but some days I feel like I have ADHD.

I function better in the morning than afternoon – I just wish I could nap.

I am handing off more of my day-to-day functions to Tom.

I love the new monthly Memory Café for Dementia/Alzheimer’s folks in Williamsburg and their care partners.  It is very casual and gives me time to catch up, gossip, laugh and cry – thank you Ladies for doing this.

May has been a sad month as a dear friend of mine lost her Mother to dementia and a few weeks later her brother died unexpectedly.  Tom’s Aunt Anne passed away in the middle of May.  I’ve been doing a lot more praying.

On a good note our Granddaughter, Lexi, graduated from ODU – what a proud day.

Our house is for sale and while I try not to get stressed out it just happens.  We want to move to an area that is more transportation friendly for Tom.  His independence is very important to me.

I lost my love for peanut butter and all foods taste salty.  I used to LOVE both.

 

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The 2016 Williamsburg Walk to End Alzheimer’s®  is on Oct 22 at Matthew Whaley Elementary School. This will be my 3rd walk.

In 2015 our chapter (Southeastern Virginia) raised over $735,000 through 6 chapter-hosted Walk events.  My wonderful team – The Villas of Five Forks – raised over $4500 and we placed 5th in Williamsburg – right below all the LARGE corporate teams.  WE ROCK!!  My aim is HIGH for 2016.  I’m sure it will involve a new car!!  Get those $20’s out and ready!

I am looking for new items to auction at several events.  We need store gift cards (grocery stores would be nice) or any new store items.  Gift baskets are always a hit.  If you’re in the know that would be great for Team Villa. 

If you own a business and are willing to help sponsor Team Villa please let me hear from you.

 

If you see something you like click on the picture to see if it’s SOLD or to get the price.  Everything is reduced and 100% of all sales will go to my Villas team for this years walk.

https://www.facebook.com/Beach-Babes-Jewelry-117414971651930/photos

If you do not have Facebook I still have my old Beach Babes Jewelry Blog and you might see something special there.

http://beachbabesjewelry.blogspot.com

Just email if you see something you like and I’ll let you know if it’s available.

slbeach703@hotmail.com

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Your love and support mean so much to me – Thank You!

 

 

O HAPPY DAY

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“I see the ocean while crossing the bridge, my heart skips a beat. When was I here last to smell the clean air and amaze at the ocean?  It doesn’t matter as it still mesmerizes my mind….close my eyes and the sound is still there, I take a deep breath and breathe in the calm knowing that this is where I belong”. SW

 

My man Joe Friday – “Just the facts, ma’am.”

The popular social understanding is that Alzheimer’s is a disease that causes a loss of memory, but that turns out to be a cruel misrepresentation. The devastation is much more pervasive. As brain systems are progressively destroyed, behavioral and physical functioning become more and more impaired. Systems for memory, decision-making, judgement, sense of direction/location, speech, continence, walking and eating are all methodically destroyed until the disease progression ends in death.

The losses keep multiplying. Loss of partner, loss of shared decision-maker, loss of roles/functions in the household, loss of shared memories and humorous stories, loss of identity as the person no longer remembers themselves, his or her children or their spouse.

Sad but this could be your family. The average total cost per person with dementia five years before death was more than $287,000. That number compared to costs ranging from $173,000 to $197,000 among groups without any form of dementia. But, the average out-of-pocket spending for dementia patients was 81 percent higher than it was for those without dementia.

The “This can not happen to me” people had better start preparing. Think about helping with Alzheimer’s research by getting into a clinical trial or making a donation.

 

The Underused Specialist

A geriatrician is a physician already certified in internal or family medicine who has completed additional training in the care of older adults. In addition to providing clinical care, geriatricians are skilled in navigating the labyrinth of psychological and social problems that often arise in the aging population.

Geriatrics is one of the few medical specialties in the United States that the supply of Geriatricians contracting while demand increases, ranking at the bottom of the list of specialties that internal medicine residents choose to pursue.

Since the health care of older patients is covered mostly by Medicare low reimbursement rates make sustaining a geriatric practice difficult.

“Medicare disadvantages geriatricians at every turn, paying whatever is asked for medications and procedures, but a pittance for tough care-planning.

There is something wrong about our health care system – we all know it. I worked and lived that life for years with many physicians. Because of Medicare Geriatric Physicians are not practicing. Shafted by the Government, once again.

My Primary Care Physician is an internist and to me she is as knowledgeable as any Gerontologist. She treats me well, knows how to care and treat seniors (after all this IS Williamsburg!) has my medications all straightened out and the best part is that she is loving and compassionate.

 

So, Sharron……How are you doing?

  • My “bad leg” is not bouncing back as well as I thought it might. Being in pain is a lot to bear most of the time – then you add Alzheimer’s. Not a good combination.
  • I am looking for a way to increase my pleasure in living – I’m sure many are in my shoes. There are those who are happy and content no matter what life throws at them. Some of us have to dig and plan for things to make us content. I’m a digger!
  • Increase of this terrible slow mind robbing disease is just grating on my last nerve. I see myself stumbling and tumbling………..Some of you reading this will know what I mean. Either this is happening to you or you have a loved one with Alzheimer’s. Yes, I still hide it well.
  • A few more vacations are planned for this year – yeah!! I have many hours of driving and/or flying coming up. I’m hoping for days filled with sunshine and relaxation along with new adventures.
  • Life is good.

 

But…………………when things are bad….

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Monthly humor!

A RETIREE’S LAST TRIP TO COSTCO

Yesterday I was at Costco buying a large bag of Purina dog chow for my loyal pet, Bodie, the Wonder Dog, which weighs 191 lbs. I was in the check-out line when a woman behind me asked if I had a dog.

What did she think I had an elephant?

So because I’m retired and have little to do, on impulse I told her that no, I didn’t have a dog, I was starting the Purina Diet again. I added that I probably  shouldn’t, because I ended up in the hospital last time, but  that I’d lost 50 pounds  before I awakened in an intensive care ward with tubes coming out of most of my orifices and IVs in  both arms.

I told her that it was essentially a Perfect Diet and that the way that it works is, to load your jacket pockets with Purina Nuggets and simply eat one or two every time you feel hungry. The food is nutritionally complete so it works well and I was going to try it again. (I have to mention here that practically everyone in line was now enthralled with my story.)

Horrified, she asked if I ended up in intensive care, because the dog food poisoned me. I told her no, I stopped to Pee on a Fire Hydrant and a car hit me.

I thought the guy behind her was going to have a heart attack he was laughing so hard.

Costco won’t let me shop there anymore.

Better watch what you ask retired people. They have all the time in the World to think of crazy things to say.

 

 

 

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Oh YES, here it comes again!!!

The 2016 Williamsburg Walk to End Alzheimer’s® on Oct 22 at Matthew Whaley Elementary School. This will be my 3rd walk and I am so pleased with our Villa team.

In 2015 our chapter (Southeastern Virginia) raised over $735,000 through 6 chapter-hosted Walk events. My wonderful team – The Villas of Five Forks – raised over $4500 and we placed 5th in Williamsburg – right below all the LARGE corporate teams. WE ROCK!! My aim is HIGH for 2016. I’m sure it will involve a new car!!

I have a few suggestions for Villa fundraisers. Let me hear from you if you’re willing to help, most fun and wine of course!!  I’m ahead of myself as this will not be until September but I am excited.  I am also looking for new items to auction at several events at Brookneal (previously know as Chambrel).  I believe they were number one and were so awesome to let us participate at their fundraisers. We need store gift card (grocery stores are nice about that) or any store items.  If you’re in the know that would be great for Team Villa. If you own a business and can help us shout out to me.

I hope all of you will join me again.

 

 

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”Spring, spring is in the air.

I can feel it everywhere.”

March 20th – Halleluiah

Caregiver in the know

While I do not like repeating information this needs to be memorized. It is so important to anyone with memory issues.

  • Love me as you always did
  • Speak directly to me
  • BE with me
  • Let me be independent. Let me do as much as possible
  • Do not treat me like a burden
  • Keep me engage with family and
  • Make me feel safe – where I live now, equipment I need, falling
  • Celebrate the small things I can do.
  • Take care of YOURSELF – see friends, go out to lunch or dinner
  • Have someone you can talk to
  • Dignity is so important

 

 

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Thank you for your love and support

 

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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ANOTHER DAY IN PARADISE?

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It’s been said that aging and retiring are the “Golden Years.”  You should embrace them, be free, travel, and enjoy the grandkids.  If you’re lucky at my age you’re retired – living the dream.  Retiring because you want to is so much different that retiring when you HAVE to.  Oh, I still enjoy that I get to sleep as long as I want but I miss not renewing my nursing license since 1972.

I’ve been so blessed to have a good man who worked so hard that I didn’t need to work fulltime or part time – most of the time he asked me not to work.  “Stay home and enjoy yourself, make your jewelry, go shopping, have lunch with friends. ”  WOW, that sure sounded good a few years ago and I did them all!   Now that my “Golden Years” have arrived I find doing all of the above a little more difficult.  I’m so happy that I had those few years to be free and do what I wanted AND REMEMBER what I did!   I am still able to do all of the good things except my jewelry (which sits in 2 large red tubs in the garage) but it’s getting a little harder every week.

I want to have all the wonderful things a normal (whatever normal is) 66 year old wants but I am angry, depressed, feeling isolated and there is the fear – ever present.  The fear that keeps me awake at night.  The fear not only what tomorrow will bring but the fear of this disease robbing me of TOMORROW.  Will I be worse?  Will I forget more?  Will I get upset and make Tom suffer?

EASE meetings are wonderful but so much material is over whelming.  I read some and the other information is for later in the disease so I put it away.  Writing this BLOG helps immensely – like keeping a journal, which everyone knows is good for all people. 

I’ve still not gotten to the part of sharing my feelings with anyone but Tom.  Close family is small and all are busy with their own lives and as I’ve said before I have no friends close near by and living in a 55+ community probably doesn’t make me unique!! HA!!

For now Tom and I try to stay busy, enjoying the summer, planning mini vacations, dealing with the anger and the fear.  Tom knows that the ocean is very healing & cathartic for me so therefore we have beach trips planned for a week in June, August, September and a MONTH in Nov.  What a guy – this makes me so happy!

My grandkids make me shine with joy.  As they get older I try to love on them as much as possible because we all know what the teen years bring.  They bring me joy and I hope to never forget who they are and hope they will love me if I do.  

As I’ve said before reading this may not help you now and I hope you never experience Alzheimer’s but one never knows.  Please feel free to share this with your friends and family.  Maybe my journey will help someone who hasn’t told you that they have Early Stage Alzheimer’s.  They could be just like me and you’d never know.

 

Enjoy this beautiful June.  

Realization is a Hard Pill to Swallow

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Realization is a hard pill to swallow

I believe we all know we are going to die – just a matter or where and when but it’s something most people do not obsess over or think of every day.  I saw my Mother on the decline road of Alzheimer’s and yes, that’s what she died of.

At a recent EASE class we had a physician speak on the cause of AD along with a few statistics to which he added at the end, “and then you die.”  I do not believe that he realized he was addressing 5 people with Early Stage Alzheimer’s and their Care Partners.  I was trying to hold it together as he read through the stats – feeling near tears for an hour.  After his closing remark I had to leave the room.  A few minutes later I found Tom and had a major meltdown. 

Fast forward a week or so – I see a commercial on TV about Alzheimer’s called “Two Lives” – very touching until the end when it shows the lady with AD dead in her bed and they say “and then you die.”  REALLY???  Off went my email to the AD Association for their less than sensitive commercial.  I found it on YouTube and saw that it was made over a year ago but since we DVR everything I had not seen it.  I find it so sad that an organization that is all about AD can support such an ad.  I sent a letter to the head of marketing and received a very nice response.  I commend her for responding so fast and her kind words.

 Yes, we all know that we will die but I’d like to live as long as I can just like you.  No reminders please.

For my friends and family:  I’d like to thank you again for all your support.  I want my son to know that I feel his love and appreciate that when we are together we don’t feel the need to talk about my condition but I know he will be there when I need him.  Family is important and there just isn’t enough of it for me.  I am distressed most evenings trying to sort so many things going through my mind. 

Tom’s support is loving and caring – just as he’s always been.  I am thankful that no one asks “So, how ARE you?”  On the other hand I wish I had one special person that I could talk to, someone that would understand, listen and reassure me………….a special person to go out to lunch with, one I would not have to be on my best behavior.  It sure gets tiring.

I am grateful for those who understand & I enjoy my good days.  I am loving this weather and looking forward to a few vacations.  Two will be at the beach this summer  – my “peaceful” place and another will be a month in Florida.  I LOVE vacations…they sooth my soul and for a short time I forget what is happening to my brain – tangles and plaque – BE GONE.

** Friends and family – I pray that your surgeries and illnesses will be lessened in a few weeks.  You know who you are and my prayers are always with you.

Until next month.

 

EASE class and my new buddy “Bob”

I do hope that we have a Spring and not just hop into Summer, though Summer is my favorite month I’m finding that as I get older the heat can be harsh but I’ll take that over snow anytime. What I love is weather where I can open the windows (I love the Spring yellow dust!!) and not have to run the AC or heat – saving money is a good thing…………….especially when you don’t know where life is going to take you.

My sweet Tom and I went to our first EASE class last night – “Early Alzheimer Support and Education. We’ve been waiting over a year for the wonderful Alzheimer’s team to get trained. For their first class they were so together, organized, caring and had cookies!!! My favorite type of class. For those with a few extra bucks or with an Alzheimer’s family member this is a great organization to contribute to. Most of their “worker bees” are caring, compassionate volunteers. God Bless them all.

We went around the room and introduced ourselves with mostly where we were raised, education, work, who we live with and what we expect to gain from this program. Not only was I excited to be there but there were also 2 other women!! The class we used to go to once a month, as I said before, were all men and ME.

Life is rough with dementia of any sort and very frustrating. I’ve not told many people but when I do they give ME praise for being so brave or either say, “Oh, I’ve misplaced my keys, etc.” They don’t get it or they may think that this is an old persons disease. All I say is that it’s not like that…………….there is no one who can feel what I feel – the confusion and the lost days. I have not only bad days but bad weeks and I feel so lucky to have Tom. I can think of a lot of husbands who would have given up and left. Thank you my Sweetest Baboo.

Now on to “Bob”……….I am very organized and my house is always clean and the laundry is done but I so hate to dust and clean the floors – in comes “Bob” as we’ve named him – my early birthday present – a Roomba!! What a joy to see him wiz around cleaning – I’m not sure who spends more time watching him, me or Tom. Thank you Tom for my birthday present. My birthday next Tuesday will be spent picking up our CSA (Community Supported Agriculture) and going to our next EASE meeting. For today – life is good!!

Speaking of a good life not only do we get to take mini vacations and long ones but we are able to watch our Grandson, Riley (9 yrs.) in Karate class & school plays and watch Emma (6 yrs.) in her school play, T-ball and field hockey. My goodness they are a joy to me.

Until next time remember to love the one you’re with as life changes in a flash.