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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10 thoughts on “The Tip of the Iceberg

  1. Thank-you, Sharron, for enlightening me still further. I never realized how ignorant I was regarding Alzheimer’s. Your blog is a public service.

  2. It is so very true that social skills are the last to go. I saw that with Mom. Friends from her church would visit (for 5 minutes) and say “Your Mom looks great and sounds wonderful!” as if to say there is nothing wrong with her. Little did they know, it is when you are around a loved one with dementia very often or are their caregiver that you see the real disease.

    I am so proud of you, Sharron. You are keeping an awesome blog. Tom’s words are powerful too. God bless y’all and see you again very soon!

    1. Thanks Dave I’ll check your BLOG. When the BLOG is open you should see the word FOLLOW on the right side of the screen. I think it does better from a computer than phone. Click that and it will ask for your email. You will get the request shortly in your email. Click on the email link and it’s done. Here is my email if you have problems. I can do it for you. Have a good day! Slbeach703@hotmail.com

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