Day 106 - Home Adjusting, Looking Back, Looking Forward

Sunday, August 4, 2016

The cruelest part of dementia, I think, is the roller coaster.  Just when you are feeling adjusted to the loss of your loved one, they have a great day. 

George is back!  I fall in love all over again.

How does that happen?  If the brain cells are dead like the doctors say, then how can someone who couldn't carry on a conversation for many weeks is now all of a sudden able to chat with you?  Someone who can't think what to do with themselves now thinks to take out the trash and the recycling. 

Now, I know what you are thinking.  He is home in familiar surroundings.  But before we left on our trip we were home and he wasn't listening and comprehending my side of phone conversations and was forgetting about the trash and recycling.

He had good days when we were traveling.  On Sunday after we got back from our trip George had a VERY good day.

I have heard of people on their deathbeds.  Laying there close to death for days and then, just before they die they have a day where they sit up in bed and have conversations and seem so much better. 

The brain is one strange organ and life itself is a mystery.

****************

As you may recall, we arrived home in the early evening on Wednesday.

On Thursday morning as soon as the clock said the bank was open, I called.  I talked to someone and told them our story and they said they could not make the account they had shut off active again.  So I pushed and prodded, but then I finally asked, "Well, what do I do now?" and just then our connection ended.

I SCREAMED at the phone!  "AAAAAAAAAAAHHHHHHHH", I yelled.  "HOW CAN I FIX THIS???  AAAAAAAAAA".  Then I saw, George standing by me watching and I looked at him and smiled and started laughing at myself.  And he smiled.

I stood up and hugged him and laughed, but then the laughs turned into sobs.  I was crying!  Not a little weep but a huge dribbly honking loud cry.  George started crying too... but he was quiet about it.

I went and blew my nose.  I was shocked.  I thought I was handling things pretty well.  Where did THAT come from???

I packed up some papers and looked up addresses.  As much as we didn't want to get in the car right away again,  We had to drive to the bank and the Insurance office to get things straightened out.

Fortunately there is a Blue Cross office in Inverness.  The agent told me not to worry.  That there is a grace period.  And he let me call from his office phone to pay the bills that were behind and keep George's insurance.  It was a relief to have that taken care of.

 Our bank is in Ocala... the Villages, actually.  I thought I was driving the right way up 41 and 200.  But when I started entering Ocala I realized I had gone the wrong way.  We were supposed to take 44 East!

I pulled out the ipad.  We were 45 minutes away from the bank, probably further away than from our home.  Sigh.  More driving.........

At the bank we opened another account with George's name on it  but with me as custodian of the account.  I asked after we signed if I would be able to see the account when I logged in.  He assured me I would be able to see it.  I needed an account in George's name to have his Social Security Checks direct-deposited.

Anyway, we walked out with no paperwork and I have yet to see the account on my page on the banks website.  So I will have to call them again after the Labor Day Holiday.

Thursday night was the Hurricane Hermine.  Our neighborhood didn't have any problems.  The wind was blowing strong much of the night and I worried about the big oak tree near our home, but nothing fell. 

Friday it was still raining on and off, but the wind had stopped. 

I had George wait outside and I went in and sprayed the house for bugs.

Then I drove us to Anytime Fitness.  Anytime Fitness was closed!  Reason... no power.  The power was out in parts of town.

We went next door to Winn Dixie.  A clerk by the door told us we could only by stuff off the self.  All things from the coolers and freezers were being destroyed.  The power went out at 2 a.m.  It was now 9:30 a.m.

Staff were gathered around shopping carts full of wrapped cheese and other items from the coolers.  They were scanning them in and the scanner was saying "DESTROY"  "DESTROY".

I told George it sounded like a video game.  How sad to have to destroy all that wrapped cheese after only a few short hours.  I am sure it was lawyers and a sue-happy society that came up with that rule.

We drove back home and went to the clubhouse where we did yoga with a video.

As always, it felt great afterward.

I worked on getting the checkbooks all up to date and to figure out where we were after selling the two rental homes during our trip.

On Saturday mornings our bike group meets for breakfast at the Hen House in Inverness.

I set the alarm so we would be up in time. 

George had changed the tube and not the tire and it must have still had something in it because my front tire was flat again.

No problem, I have a two wheel bike for such occasions...

There was a lot of debris on the trail still from the storm.

I didn't bring the camera in and take pictures of our bike group.  There were about 16 people at breakfast.  AND, Dick M. bought our breakfast!  He said he was glad to see us back safe.

Thank you Dick!

We biked a bit with the Snails of our group.  But rain threatened so we turned around after only 5 miles.

After running some errands on our bikes and getting quite wet, we arrived home.

Later the sun came out and I went out and mowed the lawn and trimmed bushes.  We have a service that is very affordable, but the rain kept them from coming and our grass in places was Thigh-high.  Time to mow!

While I was out our neighbor, Dianne D. came over and gave us a fresh tomato off the vine and three fruit from her cactus.   She said the seeds are crunchy and the fruit is slightly honey sweet.
 

We liked them!  I don't like growing cactus because they are hard to weed around.  But the flowers she gets from her cactus are gorgeous and these fruits are pretty cool.


Tiny little ants have found out we are home.  They are in the cupboards and on the counters.  So one of the errand stops was to pick up these ant stations.  They take the food home and it kills off the queen and the whole colony.

We got a call from our Canadian neighbors, Louise and Richard.  We do a lot with them in the winters and have gotten quite close in the few years we have known them.  They told us they might not make it down this year.

I turned the phone over to George so he could say "Hi" and George started to cry.  "I miss you guys," he said.  Louise was surprised he was so emotional.  The part of the brain that keeps that in check is gone.  Plus he is dealing with having this dementia happen to him.

Sunday the ants were still around.  How long do these things take?

We have a wasp building a nest by our door.  And I took pictures of this old abandoned nest.

Sunday, we were going to go for a trike ride.  I announced on Facebook we were going for a ride and asked for company.

We stepped outside.  Hot and very humid.  I was suddenly feeling VERY tired.

I got a call from my sister.  We had a nice chat.  I told her I had been thinking about looking for a duplex in the area.  The lawyer had said to buy a big house because if George needs nursing home care it will take all our funds before we can start getting financial assistance from the Government.  They allow the well spouse to keep the house and a car. 

Right now we live in a manufactured home on rented land.  So that isn't much of an asset for me to keep if I should survive George.  Anyway,  I mentioned this to my sister.   I was in the kitchen talking.  George was in the living room reading.

After I hung up George came in and said, "So you are thinking about buying a duplex?"  It surprised me.   He's doing good today!
 

We went for a drive instead of riding trikes.  We became gawkers, we drove toward Crystal River and the Gulf Coast to see if we could see any damage from the Hurricane/storm.

 A few piles of carpet outside of homes, mostly branches and sea grass, on the road out to the beach a lot of sea grass that had been already cleaned off the road.

Mattresses....

 The most furniture we saw on the curb was at a Government office.

But at the park, folks were out on their boats... maybe they were gawking from the water side...

Utility workers were stringing up lines on a Sunday....  Thank you Utility Workers!

We tried to get to the beach where we heard the dock was out.  But the road was closed.  So we drove back home. 

I was still exhausted and like a hypochondriac I started to worry that I had pneumonia or something...

But around 2:30 I felt energetic again.  So I asked George if he wanted to go for a trike ride.  Yes he did.  He had changed my tire, we were ready to roll.

We were riding in the afternoon heat.  I said, "But it will be cooler in a couple hours."

As we rode I started feeling better and better.

In Floral City we saw they were working on putting in a parking lot for the rest-stop.  I turned around to take pictures and George followed.

While we had been gone our friends Regis and Cindy had sold their bike shop and retired.  The shop still looked good and open for business.

I started feeling really good and even did some sprints.  George and I were both happy to be on this nice wide trail with shade and without having to stop and read the map.

At Townsend park we went down to see how high the river water was.  Our favorite tree had lost a branch recently, but the big ones were still there.

I asked George if he wanted to go into Nobleton and see if the ice cream shop was open.  He smiled and said, "Sure!"

It was 4:00 on a Sunday.  I thought it might be closed.

It was open!

The owner dished out our ice cream and then told us we could go behind the shop and sit in the shade by the river...

 Oh my!  It was lovely! 

We sat for a long time... as grey clouds rolled in with booming thunder.

One lone duck, beautiful, came and watched us cautiously.  We could see that the owners had put out corn meal for the ducks... but he was too nervous with us right there to come close enough to eat.

 But then three ibis arrived and the duck seemed so happy to have company.  The ibis started eating right away, the duck did too.

After a long sit we decided to head back.  We made it two blocks and  could see the rain coming.  We pulled over and stood in the doorway of the Nobleton Post Office waiting for the worst of it to pass.

George used to complain and avoid the rain like it was acid or something.  Now he says, "It's just water."

When it lightened up we headed out again.  A bit cooler but not uncomfortable.

How wonderful to be on our trail, wide enough to ride side by side.

Monday morning I went for a walk before George was out of bed.  I saw my neighbor Diane and walked with her a bit.  I told her about needing to buy a house and she told me that she and her daughter are both nurses.  They will help me when it is time.  I don't have to put George in a home!  She said we were much better off staying in this neighborhood where we have support.

I said, "When he starts wandering..." and then I realized that in this neighborhood people would know where he belonged.  We have support here.

I am relieved and want to believe.

I signed up for a September 14th "Coping with Dementia" for caregivers.   If I learn something new, I will share it with you here.

Day 39 - White Salmon, Washington, Bike, walk, Museum and Brain Loss Symptoms

Wednesday, June 29, 2016

We are always moving.  Whether it is on our bikes or in a car or on our feet.  Sometimes the moving is from one stage to another -- from denial to acceptance, from independence to dependence...







We did our exercises by the cliff and then we were hungry so we knocked on our host's door.  She swung the door wide and welcomed us in with a big smile.  How nice is that!

She put George to work chopping onions and I went to work making coffee.  Peyt put out a nice spread of an omelette with spinach, onion and colored sweet peppers. 


She dined with us and the conversation flowed wonderfully.

Then off we were to bike.  We drove to the trail that Peyt had shown us yesterday.

Across the Hood River Bridge.

Up a winding road for only about 1/2 mile.

It was very windy.  I asked another couple that was just starting their ride how long the rail was.  He said 9 miles round trip.

It was a WONDERFUL short ride.

 

The trail was beautiful and had some inclines that made us work.  At the far-end I had learned there were bathrooms up the road.  So I turned, geared down and had to work to gear down again.  Once you get a lot of strain on the chain, it can sometimes be hard to shift.  So you really need to plan ahead when biking.  Look ahead and know what is coming so you can gear down.  By turning sideways to the hill I was able to get it into the low gear…. I call it the “Grandpa Gear”.  I climbed the hill and at the top I looked back and there is no George.

So I park my trike and walk down.  He can’t change into a lower gear.  So I lift up the back end of his trike so he can shift.  IT still doesn’t shift, but he thinks to unclip and use his foot to push the chain toward the smallest gear on the front sprocket.  So it is something.  He can figure some things out and other things he is can’t. 

I saw that there was a fee station at this end of the trail.  So I grabbed an envelope and put money in it, but could not find anywhere to put the envelope.  No slot.  So I put it in my trunk to show proof that we tried to pay.

On the way back the wind was in our face and it was REALLY STRONG in the tunnel.

At the start of the trail was a visitors center.  But it was closed.

When we got back to the car I studied the map to find another trail.  Though there were green lines indicating a bike trail, when I investigated further they were dirt bike trails.  But I found one that I thought might work.  It was 30 minutes away, starting at the Bridge of the Gods.

We were supposed to be back at the house and ready to go with Peyt to a music concert in another town at around 5 pm.  So I figured we could get a couple hours of biking in before we had to head home to shower.

So we took everything out of the car so we can put things in.

I started driving West on I84 when I saw a sign for the ANTIQUE AIRPLANE AND AUTO MUSEUM.  I had suggested going there yesterday and George wanted to go.  He is/was a mechanical kind of guy and loves old cars.  So I turned off and we paid the $24 admission to get us into the museum.

We got down the first aisle and George needed to find a bathroom.  I led him back tot he entrance where the restrooms were.

While in the ladies I noticed that the strugglig to keep my hat down had caused my hair to stand straight up just on top in the middle.  I tried to wet it down,  The fix didn't work.

There weren’t just cars and airplanes there.  There were motorcycles, bicycles, and wheelchairs.  There were cameras and telephones and wagons.  There were lots of videos.  We watched one on Wilber and Orville Wright.  It was interesting, but long.  

Then we started looking at stuff and passed several other videos.  We stopped at one about women in aviation and in particular the female pilots race of 1929.  It was also interesting, but at one point I said we would never get through the museum if we didn’t stop watching videos.

Later I asked him which car thrilled him the most.  And he said, “They all do.”  So I was glad we took the time to go to the museum.

George pointed at the rear of this bike. I said,, "Yes, it looks like it got bent up pretty good."  Then he stuttered and said, "Gear drive, there is no chain."

Oh ya!

 The founder offered to take our pictures in the corvette.

We started getting hungry and George was losing interest.  So we left.  I had passed a place that said “GOOD NEWS GARDEN and CAFÉ”.  So we went back there.  It was awesome.

We didn't get a cookie, but they looked big enough for three people.

This ant was parading back and forth on the windowsill.  As soon as I took his picture he exited stage left.

OK, bellies full.  I decide we have time to at least look at the trail we were aiming for.  On the way we saw this sign.

"Naked Wine, We aim to Tease."

The trail head is close ot the Bridge of the Gods.  I looked for information about the trail at the trail head but found none.  I looked for information about why this place was called "Bridge of the Gods".  I found none.


We decided to walk down the trail.

I assembled this man and took his picture and I thought it would make George smile at my silliness.  But it didn’t.  I learned later why he wasn't responding as expected.

On our walk I mentioned I had to go potty, but I knew that as soon as I squatted some biker would zoom by.  So I would wait.

When we got back to the car (2 mile walk) there was no bathrooms.  I mentioned that to George..  As we were getting into the car George looked down at himself.  “Do you need to go pee?” I asked.

He nodded.  I said, well come on, there are bushes over here.  So we walked a few feet down the trail and I stood guard while he relieved himself.

We got back in the car and traveled the bridge over the Columbia River to Washington.

Right after the bridge I saw a historical marker sign and pulled in and found a porta-potty for me to use.

Then I read the kiosk and it explained the name of Bridge of the Gods.  It came from a native American story that at one time their people could walk across the river on rocks in that location.  Geologists have confirmed that this Native American history story actually occurred.  A land slide actually happened that was big enough to block the river..

When I got back to the car, George was gone.  I was surprised that he needed to use the porta-potty since he had just urinated on the other side of the bridge.


When he got back in the car he brought an odor with him.

I didn't beat around the bush or criticize.  I think I did good.  I said, "I smell poop.  Did you have an accident?"  And George said, "I had an accident."

I touched his head and said if you can tell me you need a bathroom I will try real hard to find one for you.  You need to tell me if you can.

He nodded.

I stopped at one more marker.  George stayed in the car.

The wind was so strong that the water was splashing over the dock.

We went through three tunnels.

We got back to the cottage it was 10 minutes to 5.  We were supposed to be ready at 5:00 to go with Peyt.

George was already in the bathroom when I got into the cottage.  I offered help, he didn't want any.

Soon he opened the door all dressed and ready to go.  He had rinsed out the clothes well... I double checked.

But I told him go back in and take a shower.

Bossing him around like this is new to both of us.  It started shortly after his diagnosis with getting him to do the exercises.  He resisted and I told him that I didn't like it either,  But this diagnosis has changed things for both of us.  I have to tell him what to do and he has to accept that.

George is out of the shower cleaned up.  I hug him.  Then I hear Peyt.   It is time to go she says and she heads for her BMW in the garage.

I look at George and the front of his shorts are wet... Another accident!

Another quick change.  I grab a towel for the evening and worry he will have an issue in her BMW.

Peyt takes us for a lovely ride through the countryside away from the gorge.

She takes us to a very small town, Glendale.

Yet the restaurant had veggie burgers.  All we saw in town was a few houses, a park, the General Store, and the restuarant.

Fun!

In the park was a concert.

They had sheets of paper on a table held down from being blown by the wind.  It was the songs they play.  Each of us were to go up and pick a song.  I picked “5 foot 2” and “The Green Green Grass of Home”  Someone else chose “King of the Road”.

It was enjoyable.  There were about 20-25 folks there.  Afterward they served water melon

Peyt drove us back home a different route.

Back at the house, Peyt wanted to make us breakfast tomorrow and I wanted to get an early start, so she made us egg salad.  I gave her some containers to put it into.  When I was doing that she asked about George.  He was in the cottage and we were in the house so we could talk about him.

I had already told her and she had already sensed and witnessed George's loss in cognition.  But I told her about the incontinent moments.

She hugged me.  She was very sweet.  She wants to help.  She has helped herself with some alternative healing practices.  

She has a way of asking a "higher power/God/Guardian Angel/whatever you want to call it" for guidance.  “Do I need this?” and she gets an answer.  She tried to teach it to George.  She was hoping this might help stop, slow, or reverse his illness.  

When I tried it on a couple things, I definitely got an action.  But we didn’t see any action when George did it.  Peyt really wanted to help. 

Anyway, we talked for maybe 5 minutes.  When I entered the cottage George was standing in the living room near the door.  Just standing there.  I asked if he was going outside.  

"No," he said.  

"what are you doing?" I sak.

"I don't know," he says.

I think this is the day had been extremely fun and different.  I did not get to sleep until after 2 a.m.

One of the things I worry about is keeping my cool while packing up the car.  He wants to do things.  He can do things.  I just sometimes feel so rushed trying to stay ahead of him.

Here is the reality in pictures.  This is a scan of a healthy brain.

This is a scan of George’s brain taken over 1 year ago. 

A scan of his brain activity showed diminished capacity on the left side of his brain, hence, planning ahead, strategic thinking is harmed. A positive is that he is less critical of things, activities, stuff.  And THAT makes for more fun.

What amazes me is that so many times he returns and talks and seems to think like he used to.  How can that be???