Tuesday, September 12, 2017

Cold and rainy with a scream of frustration boiling below the surface

Monday 9/11/2017

There is no coffee pot in our room, no lobby that offers breakfast.  We are staying at a small mom-and-pop kind of place in the Smokey Mountains of North Carolina.

I text my friend, Debra, and ask if she is ok and what she sees.  We talk on the phone.  She slept through it, no damage to her house that she can tell.  The power is out.

In Bryson City, NC, the sky is gray and the air is cool.  We head to breakfast at the local restaurant and I see a sign for a 9/11 event that reminds me what day this is.  In Inverness they were going to have a display of memories and items from the events of 9/11 at the Valerie Theatre.  Now, with Hurricane Irma still passing in the early morning hours, the streets clogged with debri from trees, and a large area with power out.  I know the event was canceled, so much changes with this kind of storm.

The streets are dark still and the restaurant isn't even open yet.  We walk the streets of Bryson and I chide myself for not bringing warmer clothes.  I KNEW it would be colder up north in September.  The car thermometer says it is 55 degrees.  We have only shorts.  Fortunately I did bring our sweatshirts.

We saw the Friends of the library had a dedicated used book store in downtown Bryson City, NC.


I buy a paper to take into the restaurant.  But I don't get time to read much of it.  George finishes his meal and repeats "Ready to go?"  "Are you ready to go?".

I contact a neighbor and ask her to go check on our place and our neighbor's home to see if the neighbor's tree fell on it.  She texted back.  Our home was ok, the tree did fall and damage our neighbor's home.  I was supposed to be watching over their home while they were away.  I quickly notified them by phone, text and email.  I felt guilty for not being there, though I probably couldn't do much.

Later we stop at the tourist center and get info on thrift shops, the library, and the approach of Irma.  Even here places are closing in preparation.  Deep Creek National Park has closed to protect visitors from falling trees due to the anticipated winds.  Gee wiz!  Can't we get away from this thing!

When the library opens I go and set George up with the dvd payer and earphones.  I was hoping to save our dvd's for later and use the library's dvds,  But they wouldn't let us use them without a library card.  I gave them a sob story (evacuated Florida,  husband with Alzheimer's).  Nope.  Didn't work.  I blogged as best I could.  I had written everything in a word document and the blog site didn't seem to like the copy and paste and was jumping around making it very difficult to edit and see the finished product.  I published it anyway.

We stopped at a grocery store and saw the utility trucks lined up and ready for action in anticipation of the winds expected from Irma.  Even here.

I fed us soup in our room.  While I was preparing lunch I set George in a chair in front of the tv.  He kept standing up.  I would ask several questions, "why did you stand?"  He just laugh his nervous laugh.  "Do you need to go the bathroom?"  No,  "Do you need to change the channel?"  No.   I would get him to sit down and then two seconds later he would pop up again.  I think he was just hungry.  He had a need, but he didn't know what it was.

My neighbor on the other side, Ken C., called to let me know about the big tree mess.  He seemed frustrated.  I tried to tell him it would be a while since there were a LOT of trees down and the tree cutters had to prioritize (Hospital, Utility, Hwys, etc).   While I was talking with him, George picked up the empty suit case and headed out the door.

I had to call him back in three times during my short conversation with our neighbor.

George needed to GO DO something  So I decided to drive us to the casino to kill some time.   When we got there, I changed my mind and drove 1/2 mile back then I changed my mind again and went back to the Casino.

As we were entering we were encouraged to sign up for this card that tracks your gambling and gives you rewards.  As a reward for signing up you get $50 worth of gambling credits each.

So we had $100 between us to gamble.  If it was our money that would be way too much to gamble.  But it was their money.  So we gamble it and any time we won I cashed out and saved those.  So we walked out with $30 cash.  If that was our $100 we would have lost $70.  But we came out ahead and went out to supper.

I said I wanted Pizza.  Then I asked George, Mexican or Pizza.  He said Pizza.  Easy date.  I take us to an Italian restaurant.  On the menu is Pizza and also on the menu is lasagna.  "Do you want a Margarita Pizza or the Veggie Lasagna?"  I ask George.

"Veggie Lasagna".

We wait.  It takes a while.  George doesn't speak.  I see other couples talking and I wonder what we look like, sitting there, not speaking.  We don't speak.   We eat bread dipped in vinegar and seasoned oil.  We wait.  We don't speak.  George waits well.  I can be grateful he doesn't make insulting comments in a loud voice like some dementia patients.  I can be grateful he can sit and wait.

The lasagna comes.  He devours his.  He looks stuffed.  The check comes,  we get ready to leave, George says, "We didn't get the pizza yet."

I take him back to our room at the motel.  I get him set up with a movie on the dvd player.  I text my sister.  I am feeling down.  No respite care, no way to get away for vigorous exercise which helps my body and mind.  I am feeling down because I keep eating the things I know I shouldn't.  I am using food as a drug.

I am feeling down as the words of the motel owner sink in.  "I have been caring for my mother for 12 years."

It is kind of like the coming of this Hurricane.  It isn't like a tornado, it comes and it is gone.   Alzheimer's and many other Dementias can last 20 years.  The caring gets more difficult.  How can I continue to care for him forever.  How can I not?

Now I am trying to learn to give instructions in one or two words, not long sentences.

For example, when we stopped to do laundry.  I told him I was going to put X in the car and I would be right back.  He follows me to the car and stands on the passenger side ready to get in.

I repeat, "I am just putting this in the car, George.  We aren't going anywhere."

I unlock the car, he starts to get in.  "No, George.  No go."  I repeat several times.

I put the thing in the car.  I close the car and start to walk away.  He gets out of the car and follows.

In the bathroom when it is time to change him, I tell him one clothing item at a time.

"We are going to clean you up. Take off your shoes."  And if that is too much, I say,  "Shoes off".

"Socks off."

"Outer Pants off."

Sigh.  I sometimes I am energized by what I have learned, the progress.  Sometimes I cheer when we get him cleaned up, when we are able to walk a few miles.   I have learned to listen to his gait and when he starts to scruff too much I stop him and say, "Look at that straight pole.  Chest out.  Heels down on the ground."  And we stand a moment and he gets steady.  We can walk a while further.

Sometimes I am still shocked and surprised by his disability.  His lack of comprehension, his lack of body awareness, the spills on the floor, his shirt and pants.

I am frustrated that I still try to imprint somethings into his memory.

"We are not leaving now.  We are here two more nights."

"George don't use your butt rag to wipe off the sink."

"George, don't sit on the bed with your pants off, you may leave a mark.... see???"


I fight tears.

Today I could only dream of getting away for a long hike in these beautiful mountains.   I dream of spending this cold rainy day with a cup of hot chocolate and a good book.

I see the white-water rafting places we pass here and know it would be too scarey for George... it's cold and rainy anyway.

This is just a bump.  Tomorrow will be a better day.  Our house is still standing, our friends are still alive and unhurt. We are blessed.


  1. Hugs, hugs, hugs. Karl just wants to sleep, we will be walking (short walk), he'll be asleep shuffling along. He has no opinion on what type of food, only if he doesn't want to eat it he won't open his mouth even with coaxing. Hearing someone has done this for 12 years - oh my, I'm only half way thru. Our place is ok too, thank God I don't have to go down and tend to something.

  2. Kat, thanks for the hugs. As you know some days coping is easier. This down day was followed by a good day.

    Please, if you don't already, get some one in even if for two hours so you can exercise. It will really help you cope, I got to exercise today 9/12/2017 and felt so happy for it.

  3. I feel very sad for what you are going through and hope that you will be heading home soon. Once back in familiar surroundings for George and some respite for you and things will look up. None of us can know how long this journey will be, and that also is a hard part. Prayers for you both.


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