Empty

I sit staring at this blank screen for days.
There is nothing to say, nothing new, just treading water.
Numb may actually be a better word.
How do I move forward?
When did I lose myself?
I KNOW how important it is to take care of me, yet I can't move to do it.
What is it going to take?
I feel like I'm glued to the floor watching the days whiz by.
One after the other.

I don't make a Dr appointment because I can't depend on the aide service to show up on time, at the right time or at all.
I don't hire outside help because Hubby's needs are more than just sitting much of the time and he gets agitated that he "Don't need no d*** babysitter.
He is adamantly opposed to any kind of day facility even for a couple of hours.
Both the Dr and I have spoken to him about it. 
I don't even go outside for periods of time because my fear is that Hubby will try to come looking for me and get hurt in the process.
Depending on family members is not easy, time constraints, distance, age, just a few factors working against me.
When did I make myself a prisoner and more importantly, how do I break the chains?

I hope this passes soon.
I'm getting concerned.

It's not all bad

Oh, there's sunshine,
Blessed sunshine,
While the peaceful, happy moments roll;
When Jesus shows His smiling face,
There is sunshine in my soul.

YAY for warm air and sunshine.
Please remind me come mid July and Aug that I said this! ;-)

Hubby had another good day. Not as good as yesterday but still good.
He even attempted to go outside with our 3 yr old grandson and me, so we could feed the birds.
I asked Hubby if he wanted to go with us after grandsons squeals from my suggestion subsided.
Grandson and I laid on the bed looking at the ceiling while we waited for Hubby/Pappaw to come out of the bathroom. When he did, he needed a little assistance which we provided. Grandson retrieved Pappaws shoes for him then ran to get his own sunglasses so he could "have glasses like Pappaw".

Pappaw shuffled to the door and Grandson bounded out with seed cup in hand.
I waited patiently for Pappaw as I held the seed bags.
When we finally made it outside, Grandson and I waited in the yard as Pappaw made his way to us.
Smiling Grandson told Pappaw, "Come on Pappaw."
Pappaw informed Grandson that, "Pappaw moves kinda slow, Big Boy".

To which Grandson declares, "Walk faster".
I laughed so hard. Ahhh it was obvious what needed to be done!! Why haven't we thought of that?!! LOL!!

Still laughing I told Grandson I better help Pappaw, so I traded hands for the birdseed and took Hubby's arm.
Grandson, walked over to me and said "Here Happy" (my grandma name). He handed me the seed cup. Now I'm thinking he has lost all interest in the birds now that we have taken so long and he is leaving me stranded with the seeds and the cup to do the job myself while he runs off to play or find some mischief. Either way they mean the same to him,
But instead, Grandson walks to the other side of Pappaw and takes him by the hand as we walk.

It was a priceless moment.

Surreal

First we had the turmoil of potentially severe weather that included tornadoes.
We ourselves were fortunate enough to have escaped the full brunt of the storms.
Now we deal with flooding from what seems the never ending rains.
It doesn't seem right that Arkansas should feel this cold in May, but here I sit wearing a jacket and running my heater.

As strange as it seems about that, I find myself in what feels a stranger place.
Perhaps it's the change in the weather, Hubby too has had his fair share of ups and downs lately, so it's possible.
My strange feeling is that my life feels out of place.
Like I'm disconnected from it and it's all a dream that I will wake up from.

Days I think I'm walking in slow motion and just going through the motions of living only to find that the days are whizzing by and I haven't done much living.

Today was no exception.

Hubby over the last few days has taken another up trend.
As much as I appreciate these mobile days I'm always waiting for the bottom to fall out.
But while it's good, and he isn't talking about moving away, I'll take the good.

Remember the rain? Apparently Hubby forgot it was raining and he insisted that we were going to town after the "wash woman' (aka personal care aide) left. Hubby didn't want her help with anything and sent her to another room until her time to leave came. Afterward he dressed himself; all but his shirt buttons.
I thought, when he see's it raining he will change his mind.

I shaved him, at his request and combed his hair.

He put on his coat and hat and proceeded to the door. He kept asking me if I was ready.
Yep, pants, shirt, ponytail, shoes, no makeup. I was ready to meet the world.
I grabbed a jacket; he didn't change his mind.
oh well it was raining.
I asked him if he was ready he answered "Yes' then realized he needed shoes.

I took the wheelchair out at his ready to ride to the car.
He refused and walked, slow, but walked.

I loaded the chair then made sure his door was closed and got in.

I always get nervous when Hubby leaves the house.
I never know what he may have up his sleeve once we make the 6 mile trip to get to town.
He had no plans so we went to the store for milk.
He waited in the car.

When we left he suggested we stop to eat.
I drove to our favorite eating establishment but they were closed.
We drove a little to see the flooding and headed to another place to eat.

We had a nice leisurely late lunch and pie.
We sat and smiled at each other with no conversation other than what he would like to eat.
I tell him my order, Hubby has the same. Sounds good to him.
While we sat there I stared at Hubby. My mind thinking, how many more good days like this? Will this be my last time to enjoy his company out? Does he wonder the same things?
I felt like at that moment I came face to face with Hubby's mortality and I wanted to cry, instead I stared at him soaking up the peaceful quiet and grateful I was there.

Melt down occurred and I saw it coming with Hubby's announcement of being tired.
He tried to get to the restroom without assistance but I insisted and he willingly accepted.
I held his arm as we walked and I held doors for Hubby. We eventually made it back home. A wheelchair ride in and Hubby undressed and settled in his bed.
Within an hr he declared he was hungry and wanted a sandwich.
After the next 2 he wanted to eat again so I fixed his plate for supper and got his lemonade for him.
He ate it all. He even came in another hr later and raided the refrigerator.
He is definitely going to need a dose of Miralax!

It's 12:15 am and here I sit still. Enjoying the recap of the day yet at the same time questioning if the day was real.
I wonder if I'm the only one to have this disconnected feeling.
I wonder if it's normal.
How would I even know, since nothing around here is normal.

Remarkable Day

Lewy Body dementia is such an odd duck.
The fluctuations between good days and bad come without warning and stop as they please.
I suppose that's the reason many caregivers of Lewy Body consider it the roller coaster.

Take for instance; 2 weeks ago Hubby was down, completely down, physically, mentally and verbally.
But yesterday, 180 degrees.
For the past few days he has kept me on my toes trying to keep up with him.

He has wandered all through this house. Mainly to the kitchen and back to fill his desire to eat. Within a couple of hours Hubby is claiming hunger and makes another trip to the kitchen or asks me to retrieve something for him. I find this interesting because when I say to him, "Again?" He will respond with, "What do you mean, again?"
Hubby will have forgotten he had already eaten. I ask if he feels full but he claims he does not.
He even eats the oddest things. One day I found him leaned over the counter applying mayo to a piece of pepperjack cheese and eating it. ewwwww was my initial silent reaction after I figured out what he was doing. I stood there and watched him working tediously to get the mayo squeezed out of the container onto the cheese slice.
I chose to remain silent about his job and just let him be. He struggled due to the shaking he has, but he did it, and in a way, I was kind of proud that he did. Hubby looked up at me and I just smiled and walked away to finish my chore.

Hubby has been awake more than he has been asleep, that's very uncommon.
The confusion is still prevalent but when Hubby has 'good days' he forgets he has problems and his desire to move away and live alone resurfaces. I stopped arguing, for the most part when I remember not to get sucked in. Hard to do some times but I am better at it.

He has been more playful with niece and grandsons. One time, 3 yr old grandson was chattering away in his 3 yr old voice. Hubby, in a high pitched voice, leaned over to grandson and said " You have a squeaky voice!"
Not only did it scare grandson, it scared me! Grandson stared at his Pappaw and then fell to the floor like a possum playing dead! We laughed so hard! Good times!

Hubby was supposed to have a Neuro appt on Thursday. At the last minute they canceled on us. Hubby asked if we could go eat. I agreed it was a good idea to get out even though I was nervous about taking Hubby out due to past behaviors. Hubby was having such a good day that he walked all the way to the car without his walker or needing a ride in the wheelchair. Of course that sounds easier than it was but he did it.
Once we got to his favorite eating establishment we ran into a few of his old friends. He remembered them ALL!! I wasn't sure if I should have been happy he did or mad because he doesn't remember me LOL!

Just before we finished eating I could tell Hubby was beginning to experience some melt down but he wanted to visit another friend so we did that too and a third before we made it home. Hubby asked to go back home of his own accord and by that time he was pretty much slipping fast. We made it home without experiencing any distressful behaviors. Hubby needed the wheelchair ride back to the house from the car and went to bed. He has pretty much been wiped out ever since. Only waking when I bring him something to eat.


Sometimes I wonder if the weather has an effect on Hubby. We've had some severe weather pass through our state. We were blessed to have only had to deal with mostly rain. As tornadoes neared us they seemed to dissipate or pass around us. Others were not so fortunate in our state and throughout the US. My heart hurts for them as I have seen this type of devastation first hand. Many prayers for them as they try to piece whats left of their lives and belongings together.

Hurry

Riding out severe weather threats and tornados is a LOT easier than riding out frustration.
This too shall pass.
sigh

I got nothin'

Lately I feel like I'm the busiest person I know and I have nothing accomplished to show for it!

Things with Hubby are on smooth ice.
Nothing better, nothing worse just the same.
All the days are the same.

You know what?

It's kind of nice.

My Day in 3 Words

Caregiving had a bumpy night last night but no big deal, honestly. Just a disruption to my sleep but, water off a duck’s back this time.

Later in the day as I was tidying up and putting away laundry, I passed by Hubby who was eating some lunch.

I looked over at him and smiled as I was passing.

He smiled back and said,

“I love you.”