This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Sunday, May 29, 2011

Reflecting on smiles

Some days, you just gotta smile and laugh.

Thought I would share a few facebook status lines that made me smile or laugh from the last couple weeks.
Reminders to me that things aren't always bad.

(Hubby) can't hear me. I change my tone, raise my voice and repeat, more than once. He gets huffy and says he's sorry he asked because I'm yelling at him, then I finally yell at him to tell him I'm not yelling at him. CRAZY COMMUNICATION CYCLE!!!
 HA HA!! (Hubby) just told me , "You know, I'd like for you to stay around." I replied, "I'd like to stay around." He then said, "Good, I'm glad." Looks like my approval rating went up for the moment. I'll take it! ;-) LOL!!!
 Been a tough day. Poor (Hubby) :( Lots of pain complaints and difficulty staying upright. In an attempt to help him sit up I reached around him. He let out a yelp and I thought I hurt him. He said, "No, Your hand is cold" LOL note to self, make sure your hand is on the outside of the housecoat ;-)
HA HA!! (Hubby) made me LOL! Hubby: "You know I don't eat as much as I used to." Kathy: "Really? Do you think it's because of your drawer full of candy I got that you keep munching on all day and night?" Hubby: "No"
There was no changing his mind. I even prayed he would forget about it, but NOOOOOO! After weeks of talking about it and me avoiding, re directing and 'forgetting to price them', today (Hubby) had me order a bicycle for him. Oh the places you think you can go LOL!!
Here's one I didn't post. On a trip home from the Dr, Hubby said he was upset because he didn't ask the Dr about his teeth (getting new dentures). I told Hubby that we would have to ask primary care to set up that appointment and we had a PC appointment next month. Hubby said "I might not make it that long" I asked, "You might not make it? Do you think you will die by next month?" Hubby answered "Yes" So I had to ask. "Then why do you need new teeth if your going to be dead in a month?" Hubby sat silent for a min then said, "Well, I guess you're right" But we are still asking ;-)

Monday, May 23, 2011


So I sat around and moped about feeling empty and watching the days fly by etc etc.
I suppose God laughs at me at those times.

One of my favorite stories in the Bible is when Jesus, after feeding the multitude with 2 fishes and 5 loaves, sent his disciples out into a boat to "Go on ahead, I'll catch up". He sent the people home, went off to pray and then went out to join his disciples in the boat. By this time a storm had developed and the waters were rough enough for the disciples to struggle in their rowing. As Jesus walked out on the water toward the boat, the disciples got scared because they thought a ghost was coming to get them.  Jesus re assured them it was He; But Peter, had to have more than just His Word so he wanted Jesus to allow him to walk on the water too. (isn't that just like us? Oh yeah, well prove it)
So Jesus said, "OK, come on" (my interpretation)

My favorite part is that, Peter, keeping his eyes on the Lord jumped out of that boat onto the water even though the storms were all around him. He walked out to meet Jesus. As long as Peter kept his eyes on the Lord, he was walking on the water, safe from drowning. Now the Bible doesn't say that Peter stayed dry while he walked. So I feel pretty confident that the waves splashed him and his feet were wet along with his face and hair. The waves were all around and Peter was experiencing them on a personal level, yet keeping his focus on Jesus.

But wait, there's more!
As Peter was being drenched by the water waves, he took his eyes off Jesus to look at the storms and see what they were doing to him and to worry that he couldn't handle it. Peter began to sink.

Now the REALLY GOOD part!!
Peter yelled out, I'm sinking, I can't do this, I'm going to drown! This is too much for me to handle! The storm is too big (more interpreting)

(Matthew 14:31 Immediately Jesus reached out his hand and caught him.)

1. without lapse of time; without delay; instantly; at once.
2. with no object or space intervening.
3. closely

Jesus didn't have to run toward Peter to grab him!!
Peter was in one arms reach of the Lord.
Jesus didn't say, "Hang on I'm coming!" He was there.
Peter lost his focus, just like I do so many times.

I sit down and take in the enormity of the Lewy storm and the height of the Lewy waves.
I cry, it's too big for me to handle. I am right, it IS too big for ME to handle.
I hear so many times the phrase, God will never give you more than you can handle. That sounds lovely. I like to think I'm strong enough to handle anything that God chooses for me to have. But the reality is that I limit Him when I do that. I make Him my size. I admit I'm coughbigcough (and at this rate getting bigger, wink) but I'm not God big.
When I surrender my little all to Him and keep my focus where it needs to be, I won't sink and He will handle it.
That does not mean I should do nothing. I still need to pull my weight. Use the abilities I have and the knowledge I was given. Do the best I can with what I have. I STILL have my own work to do under the watchful eyes of my Lord, the supervisor, teacher, example.

Me and my feet are still going to get wet. I'll be splashed in the face and I'll have terrible hair days I'm sure. I just need to remember to keep my focus and let God handle it. He is SO much better at it and never screws it up like I do!!

Hubby hasn't fully rebounded from the shaking. It happened a few more times and each time I cradled him until it passed. I will continue to do that for him and for me. 
Today is not much different than yesterday. Still has those moments, VERY confused and mobility is very very poor, He tries so hard to do things yet. It hurts to see his effort but I encourage as long as it does not appear to be injurious to him.

Everything else will work itself out. I need to turn it loose and quit sabotaging myself. I am my own worst enemy and I use fear to intimidate myself. Would I accept this behaviors from anyone else, NO! I can say that boldly because I have been in that situation where someone tried to use fear on me to manipulate me. It happened once, it didn't happen a second time. I now need to stand up to myself and say, I'm not going to let you treat me like this anymore.

Perhaps my spirit has been refreshed enough to get raised up and walk on the Lewy waters with my focus on Love.

Sunday, May 22, 2011

Whole Lotta Shaking Going On

Hubby is experiencing a sometimes strange behavior on a more frequent basis lately and I'm rather stumped by it.
A behavior I had always been chalking up to cold chills, due to cold weather and a cantankerous heating unit spitting out cool air during the winter.
Since been replaced, my pocketbook is still screaming.

Hubby will begin shaking like he has a cold chill. He can't control the shaking and asks for a blanket.
I cover him and then lay down next to him and envelope him in my arms until he relaxes.
This may take a few mins to several to get him settled.
I'll release my grip a little and stay with him until his breathing is rhythmic and I feel confident enough to slide out of the bed and leave him.
Some times, if I linger very long I nod off to sleep.
Sleeping on the job.

This behavior has happened before and as I said chalked up to cold weather but now, even in warmer weather, it seems more frequent; especially in the last 3 days or so.
Today he has experienced this 3 times already.

No fever, nothing out of the ordinary for us so illness does not appear to be the factor.

It's distressing to Hubby when it happens.
He cant control his body movements and is unable to respond to me when it happens.
It's distressing to me also because I feel clueless as to how to take care of it more than I am, and my way feels like it's not enough.
Although, I have got a catnap or two.

Friday, May 20, 2011


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.

Tuesday, May 3, 2011

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.


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.