Skip to main content

Fun Times While Living With Alzheimer's


MISSING YOU!!

Even though we aren't traveling right now, we are still on a great journey.  This wild roller coaster style trip living with dementia.



The fun times...

And the times when I try to remain calm and I tell George (as he would have said before his brain started deteriorating) "It is what it is."


Right now it is January, 2017 and our snow-bird friends have arrived.  I want to host lots of dinners and parties and gatherings.  I want to attend lots of fun activities and go on long all-day rides.  It is what we have done since we moved to Florida. But even with all the busy-ness...

I miss you.

I miss sharing the little things that happen day to day.  I miss having each of you with me in those moments.  I miss thinking how this moment looks from the OUTSIDE.

I am afraid.  I am afraid if I don't record these moments that they will be lost in the fog of my own memory which too will fade someday.  I am afraid that when George passes I will be overwhelmed with guilt because I will only remember the times my patience came up short.

I won't remember all the good times, the laughs, the dances, and all the hugs. So, out of fear and nostalgia for the community you helped me create by following our 2016 journey.  I have decided to keep posting, keep updating, keep this online journal-thing going.  At least try when I can pull myself away from the day to day.

So, you may wonder, how is George doing?


George seems happy.  But he doesn't tell me so unless I ask.  He still says "I love you."

And the other day, Friday 1/20/17, I couldn't believe it...

But before I get into what I couldn't believe on Friday, I first have to give you some background information.



I now take George with me when I go to work.  I am working part-time at a little bike shop in Floral City.  www.trailside.bike (Also known as Hampton's Edge)  It works out well right now because the owner is gone and George can sit in his office chair, see me, do his coloring and watch his videos (he has moved on from "How It's Made" to "The Three Stooges".  He is very quiet and my co-workers are supportive.

I started taking him to work with me because one day... We were about ready to hop on our trikes and go meet the group for a ride.  George went to use the 1/2 bath on the first floor.  He was in there a long while, I was concerned.

I heard a flush and he opened the door and I saw that the toilet was overflowing behind him.  George stood by and watched as I turned off the water, I ran into the garage and got the plunger and some big rags to soak up the mess.  George following a few paces behind. 

When I got back to the bathroom I laid down the rags to start soaking.  Both of us tried to get the plunger to work.  It was the former owner's plunger and it didn't plunge.  Fortunately our neighbors (who also ride with the group) had not left yet, so I ran over and borrowed their plunger.

The mess cleaned up, we got on our trikes and started down the road.  Then I saw George sit up in his trike and reach to wipe something off his sock.  It was POOP!

Let's just say my exclamation was appropriate to the situation.

We returned home.  I directed hm to take his shoes off because I saw they were full of poop too.  Then I was yelling, "DON'T TOUCH THE WALLS!"

We got him cleaned up.  As I washed him off I said, "No big deal.  It is what it is."   I think his embarrassment emotion is gone.  He didn't seem affected.

Afterward we went on the ride and caught up with some of the group at a stopping point.  We had a good rest of the day.

So that was when I started to take him to work with me.  Can you imagine the mess if I had been gone that day?

A few more messy incidents and we have graduated from incontinence pads to the full pants.





You never think of this, but a caregiver has to keep track.  George is still cleaning and dressing himself most the time.  One thing he doesn't always do is change his pad.  A caregiver at this stage must keep count or watch the waste can.

I am very fortunate in that George does not protest when I clean him up.  He doesn't argue when I tell him to change his pad.  I suspect that may change.  We'll see.

But to get back to the story I was going to tell you.. the thing I couldn't believe...


On Friday 1/20/17 he was with me at work.

At lunch time I took him outside to a picnic table.  I ate my sandwich and left him at the table to finish his lunch.  Right next to the bike shop is a flower shop.  In all the years we have lived here he never stopped to buy me flowers.  But that day...

 He must have noticed the flower shop....

Or maybe someone talked to him about it... I have my suspicions...

But then he has been... as a friend calls it... feeling "frisky".  I can't imagine he could plot out a strategy for wooing me at this stage of his illness. 

After work we rode our trikes from work to Inverness to meet up with a few snow-bird friends.  There was an old car show downtown and music to dance to.  I showed the flowers to our friends and they took more pictures.



 The music was good for dancing and George danced practically every dance with me/us... Frankie and I.  The first dance we did was a line dance and George just followed me around the dance floor... not doing the steps, just following me around.

Frankie and Joan.

We had a great time.

We are living in our new home now, much closer to Inverness.  I love that we are close to town.  We both miss our old home and neighbors.  Twice since we have moved we have gone back to walk around and visit folks.

One couple is on the same path as us.  Learning as she goes she has shared information and experiences.  She introduced me to the better support groups in the area.

Another friend recommended the book, "Alzheimer's proofing your home" so I ordered it from Amazon.

George and I joined the closest fitness club for a very reasonable fee.  Melody's has character and is walking distance.  George does well, though his form sometimes worries me, he keeps going and has not injured himself yet.

Well, that is enough for now.  I really should go sit with him and watch a movie or something.  Tomorrow night I am hosting "Girls Game Night".  I will probably set him up in the den.  Someone gave us a used DVD player that is portable.. like a small laptop.   So maybe I will get him some movies to watch.

Sue








Comments

  1. Thanks for the update! Saw you at Trailside a few weeks ago when I had my 559 in for servicing and thought it was you, but not sure.

    ReplyDelete
    Replies
    1. Yep that's me. And now George is in the office with me when I am here. Friday and Saturday most weeks. Come in and say "Hi".

      Delete
  2. Sue, your posting makes me emotional. I admire your positive spirit. In some ways you two are doing better than we are but we aren't dealing with the incontienence issue yet. I miss our talks, but this blogging helps.

    ReplyDelete

Post a Comment

Popular posts from this blog

Cover Choice Revealed... or maybe not... WATCH!

It is so exciting to be sharing our story.  Publishing this first book on Amazon has been a learning experience.
For those who have been asking, yes you WILL be able to order the paperback and have it in time for the book launch party at Cattle Dog in Inverness, Florida, USA at 10:00 a.m. on March 23, 2019.   The Kindle will be available for pre-order and will download to your device (as I understand) on the launch date, March 21st.  So,YES! I will be able to sign books at the launch parties.  
Please spread the word, as  a portion of my proceeds will be donated to Alzheimer's research and/or Caregiver relief/respite.
Mark your calendar!  The video to reveal the cover choice premiers at 6:30 p.m. Eastern Time U.S.A. on Monday, February 4th.

If video doesn't work, click here!



Books coming soon!

This blog is being published into two books!

The first is scheduled to be released on March 21, 2019.  Mark your calendar!  Find out what I have added and removed from the original blog of our journey around the North Western United States of America.


ALZHEIMER’S TRIPPIN’ with George

Diagnosis to Discovery in 10,000 Miles
By Susan Straley

What would you do if you learned that your spouse or partner has progressive dementia, possibly Alzheimer’s disease? 
This is the brutally honest journal of one spouse and reluctant caregiver that “ran for the hills.” Of course she took her husband George along. 
What challenges did Susan encounter?  Can she enjoy the present — a journey across the U.S.A. -  while worrying about the future?  How do she and George deal with his increasing dementia symptoms? 
And the biggest question of all, after 40 years together, can they remain married and loving through it all?  Travel along with George and Susan.  You will learn, you will laugh and maybe sh…

Neighbors, Friends, Simultaneous Published Authors!

What fun it was this fall when my biking friend and neighbor returned to Florida to announce that she had just published her first book.  ME TOO! I said.  Well, almost.  It officially releases March 21, 2019. 






Alzheimer's Trippin' with George - book 1 in the series - is now available to order and receive in paperback.

THE KINDLE

The kindle is  ready for pre-release orders.  Then it is sent to people's devices on March 21st.  On that date, the price goes way up!

If I get 100 pre-orders and some good reviews, then Amazon will take notice and start helping promote the book.  Which would be great if more beginning caregivers could find it and feel more confident and competent because of it.

SPEAKING OF...

I have now three speaking engagements at Alzheimer's Caregiver Support Groups in the area.

The first one is this week!

If these go well I will be looking for engagements in other areas of the state.

I stopped in at Trailside.bike where I used to work while caring for…