Crash and Burn Travel stress test for Alzheimers patient

Part Two of yesterday's blog:

 Supreme test traveling with Alzheimers link


"Crash and burn" 

The last blog ended with me at the Lounge cafe with a glass of wine and the internet while my wife went out to check on our 9:30 PM re-scheduled flight. 

I thought it was unnecessary. 
I was very wrong and it lead to a very stressful situation for us. 

After 2 hours waiting I noticed it was Nine PM. 
Where is Ginger?
I can't find my iPhone to call her. 
I go to to Lounge front counter where they tell me the 9:30 PM flight has been cancelled.
I am still panicked that I haven't heard from Ginger but at least I know we have not missed our flight.

The man behind the counter calls Ginger.  She says she is next in line to get a new flight to Germany.

I find her down the hall at the Admiral Club where business and first class tickets can get new tickets in a smaller line.  

We find each other and she asks me where her small bag where the money is kept.  

I freak and race the five minutes back to my table in the lounge. 
Thankfully the cash bag is still there.  
Also unbeknownst to me my iPhone was in there the whole time! 

Wow! Another major meltdown of stress in one week. 

Maybe Alzheimers patients should not travel?

We get complimentary hotel for two nights at EB Hotel near the Miami Airport. 

Nice place.  The hotel check-in man could tell we have had a bad day and puts us in a deluxe suite.  Very nice. 

We settle in our room and try to compose ourselves. 

We were both angry with each other.  

We get over it and I muse that we actually did very well. 

We planned for just such a catastrophe by reserving Berlin Weston rooms five days before our Bus Tour started. 

We also call Weston and cancel the first two nights reservation, thereby saving 70,000 points.  

Now we feel even better and go to bed. 

We will make our Eastern Europe Bus tour. 

Unless Hurricane Dorian does not allow us to fly out tomorrow night.  


We will not tour Miami today.
We have been here before. 
No regrets as we like our days of rest.  

Neurologists advice:

Plan trips with rest stops in between. 

I am binging on Net Flix  MINDHUNTER season two.  

No residual stress from yesterday. 

Good sleep as usual. 

No valium or alcohol needed. 

We coped.  Hurray. 

Happy ending. 

Bill Murray told young people at a wedding he crashed that a couple should travel around the world together before they get married.

Best way to see if your marriage will last. 

The Supreme Test traveling with Alzheimers.

We got an early flight out of Miami only to be sent back to Miami one 90 minutes into the flight.
They told us to go to the 9:30 PM flight to Madrid.

I am cool about it however my wife is on the phone to double check.  Good.  Not me however. Too difficult.

They give her another flight for tomorrow where we have to pick up our luggage tonight.
I tell her no.
They will take care of us, I say.
If we switch anything can happen to us.
We are getting on a bus tour from Berlin in four days.
We have leeway.

Still she wanted to be certain and she went off the the desk.
Too much stress for me, I stayed in the lounge.


We were told our next flight out is 9:3O PM to Madrid.
She is worried about the connecting flight to Berlin.
I said, lets get to Madrid first and then worry about Berlin.
Lets get away from Hurricane Dorian.

Our travel tour doesn't leave for a few days from Berlin .
Once again this may be a good reason not to travel with Alzheimers.

I am not worried.
I am at the bar.

Last sunset in Paradise as Hurricane Dorian is coming

We are trying to get out of Nassau a day early to miss Hurricane Dorian.

We had a beautiful sunset tonight.

Bad day in Paradise. Maybe this is why Alzheimer's patients should not travel?

Link to easier to read article with my comments

Dementia Personality Changes Require Caring and Adjustment by the Caregiver link
to original article.

My comments in purple. 
One excerpt:

As Alzheimer’s makes the brain less functional over time, your loved one will inevitably have both good days and bad days as gradual changes in behavior occur.

It is curious in timing that I had a very bad day yesterday due to stress when I realized I was going to run out of Namzaric while on vacation in the next 30 days. I was terrified as my neurologist said a lapse of medication could cause a rapid deterioration of mentation.  I spent the morning by myself trying to rectify the situation. I was at the Paradise Island timeshare and my wife and daughter were asleep. I looked up pharmacies on google on Nassau. 

I would have to cross the bridge to get to one.  I didn’t have a car and a taxi was $50 round trip.

Thus I walked to the resort front desk and found a wonderful lady who took care of me.  She called a couple of pharmacies to see if they had Namzaric. They did have Aricept. I knew that was the important component in early stage Alzheimers.  However my Doctor could not call it in from the states. We had to find a Doctor. The lady called the Main Hospital walk in center but they suggested we use the Doctor who visits Paradise Island.  She tracked down where the Bahamian Doctor would on our island, The lady told me I would need cash. I asked how much? She suggested I bring $500 just to be certain. We took the golf cart back to my room and I went up to the room to find my wife and daughter eating breakfast.  I told them the story. My wife got the money. The lady drove me to the oldest part of the resort where there was a medical clinic. I waited about 90 minutes to be seen. The Doctor was lovely and after five minutes she wrote the prescription for Aricept 10mg (10 pills)  it was $84. They did not have generic. I wanted 30 pills but that cost $240. I will be in Germany next week and I thought I would have better luck there. 

I felt great relief that I fixed the problem.  However the hours of stress continued to cost a toll on me for the rest of the day which would not be relieved by some ice cream that I almost never eat anymore.  

I really craved some alcohol but I wanted to go dry this week in Paradise island.  The craving was worse than my usual hunger. I remained anxious and stressed the rest of the day despite a long walk.  Finally after a good dinner I felt better.  

The lady from the front desk went to get my medicine and delivered it to me that night. 

Marcie was an angel.

More Atlantis feeding time fish

 I usually don't see both of these large fish out at the same time.  Grouper?

 How many eels do you see.

How many Seahorses do you see?

Atlantis aquarium feeding time for Eels.

I came out about my Alzheimer's

At first I hesitated about telling people about my diagnosis of Alzheimers disease.
I wanted to tell people in person.  I wanted to see the reaction and answer their questions.
Usually they were surprised and couldn't believe I have Alzheimers.
I am sure they were trying to be reassuring.
One friend I told seemed to not know what to say and simply said "I'm sorry."
I understand, I found it difficult to tell families that a relative died.

Close family did not understand why I didn't tell my friends.
I wanted my friends to be a barometer of the progress of my disease.
20 months after my diagnosis, no one came to my wife and Ginger and ask if I was having problems.
I would tell people I was having memory problems but they assumed that was normal aging.
I also told them my math was worse and recognizing landmarks was worse.

I was happy to discover my that I knew my way around Atlantis, Paradise Island.  We had not been here for five years but I could find all my favorite spots.  My wife didn't remember.

It's a good reason to come back here in two years to see if I continue to remember.


Last month I decided it was time to tell a list of 24 friends on email.
Surprisingly only about 4 people responded.
Either they don't read my email when I include them in a list or they did not know what to say.
I ask them not to call me but write me an email with questions.
Better yet, I requested they follow my twitters which would direct them to my blogs.
Again only about two people agreed to do this.
Social media is a good way for me to engage people and keep my mind active.

Telling people that you have Alzheimers is a personal decision.
I decided there was no shame in having the disease.

However I did not want pity visits.

I published my book I am waiting for when I forget I have Alzheimers in Feb 2018.
Still none of my friends noticed.
I didn't tell them about the book.
I came out on twitter and my blog a few months ago and still no one noticed.
I made a response to a facebook post with a link to my book.
Two people wrote me and asked if I had Alzheimers.
At last.

Not very satisfying to an author who is trying to reach a tipping point with his book.

I still have not come out on facebook.
I will wait till I publish YEAR TWO next Feb 2020.

Should a Alzheimer's patient pursue a path towards joyful fullfilment?

Letter from a friend.


Letter in Blue
My comments in Black

I suggest to you Bruce, that you read Choose fun not struggling.  link

Then I ask you why  to have  fun rather than be frustrated at struggling.  

Why can't having fun not be fulfillment? My question to you Bruce. 

Bruce's letter

The spiritual journey and the meaning of Christianity are much on mind.  I am doing some writing on that.  Brian, you have said that you are on the Christian journey as well (so also Bill and Mark). 

 Consider this, as you write in your living with Alzheimer's book, that people living with Alzheimer's should choose Fun. 

I propose a different word - 'choose fulfillment'.  Much broader and deeper.  

I have thought that the fourth book would have the title: An Alzheimers patient trying to have a meaningful life. 

Bruce's letter

The spiritual journey and the meaning of Christianity are much on mind.  I am doing some writing on that.  Brian, you have said that you are on the Christian journey as well (so also Bill and Mark). 

 Consider this, as you write in your living with Alzheimer's book, that people living with Alzheimer's should choose Fun. 

I propose a different word - 'choose fulfillment'.  Much broader and deeper.  

I have thought that the fourth book would have the title: An Alzheimers patient trying to have a meaningful life.  By my forth year in the disease, I will be shocked if I can pursue a meaningful life.  However I am able to finish YEAR FOUR of having Alzheimer's. I think that means I did have a meaningful life with Alzheimers. 

I think that is what Brian has chosen! 

  He is not simply traveling the world and living with maximum indulgence. 

I think I am seeking "fulfillment"  but that word suggests effort towards a goal?  Stressful? 

Maximum indulgence, what do you think you think I do.  No coke, prostitutes or gambling yet.

 Actually, he writes about his battle with obesity, and now with early Alzheimer's, writing for his own benefit but also for the benefit of others.  Brian actually works pretty hard, offering to people what he has learned in his considerable medical studies. 

My work creating tweets, blogs and books is not work, it is pure satisfaction that I was able to do it. 

So Brian, I suggest you talk more of fulfillment...  from travel, time with family and friends, to writing for some, playing music, to finding a rewarding place to volunteer, to advocating for the less fortunate...  each person finds the path of the joyful fulfillment, within the grand scheme of God.  

Path of joyful fulfillment in the face of a terminal disease such as Alzheimers is usually associated with the idea that I am going to beat this disease.  Pointless.  I don't plan to volunteer. I have my writing and studying to do which I fill very fulfilling.  I am already paying it forward by participating 

     Overarching it all is the Christian promise of life beyond death.  So that is my answer to your quote from the rock group Queen. 

 No, I don't think I would choose this earthly life forever - or would we be forever 25 years old? Nahhhh.   Gotta be something different.     Fulfillment, joy, love...  Brian, you are demonstrating your path of fulfillment, a great message to share with others.  

Thanks Bruce, I appreciate and enjoyed your letter. 

I quote "Who wants to live forever" by Queen is to remind me we all die. 

 Alzheimers may not be the worse way to die. 

 In fact it is an opportunity to find your path of joyful fulfillment now rather than later. 

Nassau, Bahamas

I am writing Traveling with Alzheimers Year Two.

I arrived at Nassau airport and taxi to the resort in good shape.

I traveled with my wife and daughter from Jensen Beach, Florida.

People with Alzheimers can travel which is the premise of my book.

This is a good destination as I have walked 11,000 steps per day the last two days.

I usually walk 6,000 steps a day.

I also watched the  whole recent season of  TV series Homeland.

Excellent show, we stayed up till 3 AM to finish it last night.

Spoiler alert

Carries ending was the same as mine will be.

Largest Marine Habitat in world

Atlantis Bahama Aquarium link

Beautiful Atlantis Resort on Paradise Island

I walked 8,000 steps this morning. It's a great place to walk around.

View from Harborside Timeshare

I jumped in the Haborside pool after the long walk.  Wonderful.

The Bahama Navy at Atlantis

Bahama Navy of Billionaires

Paradise Island timeshare, Nassau, New Providence Island, Bahamas

First Day at Paradise Island, Nassau

View from room

The mail has arrived in the yellow mail boat 

Real life story of AZ patient losing sense of self

Mom’s Mirror Image Collides with Self Recognition with Dementia link

I hadn’t even realized that Mom was losing her own self recognition with dementia. My Mom often remarked that she was frightened by the “Old Woman” who constantly followed her but I had no idea who that woman might be.

For a long time, I thought it was an hallucination. But one day, as I stood beside Mom in front of  the mirror, she pointed to her own reflection and said, “There she is. That’s the Old Woman!  She’s scarey and she follows me every where.”

I was so taken aback that I didn’t know what to say. My Mom no longer recognized her own reflection. I put my arms around her in the only comfort I knew to offer, and told her that I would be sure the old woman never hurt her.

“She was only trying to make friends with you,” I explained.  Those words soothed Mom for the moment and that became my constant response to Mom’s fear of the old woman who followed her. It worked!

No matter  how silly it may seem, if it works–do it! Sometimes we only need to accept their fears, and find a resolution. We may never know how they’re really feeling.

I must add. Now that I’m in early Alzheimer’s myself, I watch my daughter repeating the things I told Mom.  I’m so happy she was watching those years ago.  

By late stage Alzheimer’s, my Mom’s eyes seemed fearful and worried most of the time, as though suddenly unsure of herself and the world around her.

As holidays near, it reminds me of her great discomfort in crowds or large groups. Please keep your loved ones feelings in-mind if planning parties or reunions or large get-togethers.

By middle stage Alzheimer’s, the patient is totally guarded and uneasy in large crowds with lots of chatter around them. It seems that the words come quicker than they are able to decipher and it leaves their mind in a twirl of confusion.

My comment in purple
I am in an early stage of AZ.  I would like to know people's experience with how long their relative remained in the early stage. 

Kevin made this cover for my second book

I published YEAR ONE last Feb. 30, 2019

I am 8 months into the YEAR TWO book.  I am confident it will be finished in Dec.

I guess the old adage, if you want to hide something put it in plain site is true.

If you want to do something for me follow my friend Billy's lead as described in his letter below.

Just before this letter from Billy arrived I specifically asked my sons to check my twitter feed  @brianedwardsmd and they have agreed.

I then knew I needed to reach out to my friends to follow and send a comforting word on twitter. You can send a private message on twitter as well if you prefer.

Socialization is important for Alzheimers patients and I found Billy wonderful for me personally.

I look forward to your comments on email or short comments on twitter.

Please don't write me that you just can't join one more social media account.  Thank you.

If you want to know how I am doing just check my twitter.  I can only write 144 characters.

Love,

Brian

Getting old composition on Facebook

George Dannewald posted this on Facebook

August 9 at 9:26 AM

I have posted it on my blog giving a unique perspective as a Alzheimers patient posted in purple text.

A WINTER FRIEND 

AND THEN IT IS WINTER
You know time has a way of moving quickly and catching you unaware of the passing years. It seems like yesterday that I was young, just married, and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all those years went. 

I know that I lived them all.

  I have glimpses of how it was back then and of all my hopes and dreams. 

But, here it is... the winter of my life, and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those "older people" were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. 

But, here it is...my friends are retired and getting grey... they move slower and I see an older person in myself now. Some are in better and some worse shape than me... but, I see the great change... Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be. 

Each day now, I find that just getting a shower is a real target for the day! 

And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit! 

Check for sleep apnea.  I wear a sleep apnea mask and can avoid taking a nap.

And so... now I enter this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!!

I had Alzheimer’s diagnosed in Dec 2017.  I have DM type two.  I believe that has aged me.  I benefitted from cataract surgery and new hearing aides. Wonderful.  I am blessed I have very little pain.  I find if I exercise daily with easy 20 minute walk, stretching for 10 minutes and 20 minutes of easy weight lifting I can get back into fair shape. I have given up skiing and bike riding due to poor balance. I am fortunate to have had a very full life with great family and travel and education. 

 But, at least I know, that though the winter has come, and I'm not sure how long it will last... this I know, that when it's over on this earth... it's over. A new adventure will begin! 

When your number is up, it's up.  I was fearful to die young as I desired to see the world. Now I am not so fearful.  I have an incurable disease and was worried I might not be me in two years.  I am 20 months since my diagnosis and will finish my YEAR TWO book on my Alzheimers  in Dec 2019.  Wondering how much time I have till I forget who I am has been difficult as I can't find books with timelines of the progress of the disease.  Most books are about the suffering of the family caring for the person.  I hope to finish 5 years of books about how I am doing with Alzheimers to give others hope.

Yes, I have regrets. There are things I wish I hadn't done... things I should have done, but indeed, there are also many things I'm happy to have done. It's all in a lifetime. 

So, if you're not in your winter yet... let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life, please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can TODAY, as you can never be sure whether this is your winter or not! 

You have no promise that you will see all the seasons of your life... so, LIVE FOR TODAY and say all the things that you want your loved ones to remember.. and hope that they appreciate and love you for all the things that you have done for them in all the years past!! 

During my life I heard the refrain, "Live for Today." I found I couldn't do that and I didn't want to do it. First of all I had the goal of becoming a Physician.  I wasn't interested in partying.  After college I still had Medical school (4 yrs) Residency (4 yrs) Fellowship (2 yrs).  Planning the future was a major priority.  Remembering the past also very important. (I will lose that soon, right now it is mostly recent memory which is not so bad.  Enjoying the present very important but usually requires past and future brightness. 

"Life" is a GIFT to you. The way you live your life is your gift to those who come after. Make it a fantastic one. 

Remember: "It is Health that is real Wealth and not pieces of gold and silver." 

True but I would quote Victor Hugo, "Life is to Give" We can't often choose our health.

~Your kids are becoming you......but your grandchildren are perfect!
~Going out is good.. coming home is even better!  
~You forget names... but it's OK, because other people forgot they even knew you!!!  
~You realize you're never going to be really good at anything.... especially golf.
~The things you used to care to do, you no longer care to do, but you really do care that you don't care to do them anymore. 

~You sleep better on a lounge chair with the TV blaring than in bed. It's called "pre-sleep."
~You miss the days when everything worked with just an "ON" and "OFF" switch..
~You tend to use more 4 letter words ... "what?"..."when?"...??? 
~Now that you can afford expensive jewelry, it's not safe to wear it anywhere.
~You notice everything they sell in stores is "sleeveless?!"
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet.... 2 of which you will never wear. 

~But "Old" is good in some things:
Old Songs, Old movies ... 
and best of all, our dear ...OLD FRIENDS!! 

Stay well, "OLD FRIEND!" 

Send this on to other "Old Friends" and let them laugh in agreement!

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