2 coffee pot day

Hubby had a busy night last night.
Many shuffling trips to the kitchen to raid the refrigerator and of course needing all the support he can get by leaning on various noise producing things.
Scooting chairs,
frig doors with misc jar items in them,
fully top loaded dressers with clinking things on them (UGH note to self, CLEAN OFF THE DRESSER!)
the foot of the bed where MY FEET ARE!  Both ways. Although this wasn't noise producing the wakening seemed unnecessary.

Lewy body causes Hubby to shake without control. So when he clutches the bed it's almost like having a vibrating bed. That used to be fun when I was young. Not so much now.

So after Hubby tires of the kitchen trips he decides to raid his candy drawer.
Candy that has rattling wrappers. Wrappers that have been glued with never get it open in the night glue!
Hubby fought the candy for what seemed an eternity until I wanted to throw the candy out the back door!

So needless to say, my night was busy too and my interrupted sleep made for a cranky Kathy this morning.

To add to my attitude I had forgotten to set the timer on my coffee pot. This means I must wait for my coffee instead of it waiting for me in the morning.
At this point I am not sure who I am more annoyed with, Lewy, or myself.

Yes, I know I have a bad morning coffeeless attitude, and no, I don't intend to do anything about fixing it. So deal or stay away until I have had at least the first cup ;-)

But does Lewy remember this? NO! Lewy rises and makes a trip to the bathroom. Then he sits on the side of the bed and wants to know where his coffee and sausage biscuit are.
Are you kidding me?!
You walked all night getting things for yourself and now you are placing orders?!
Well I will have you know right now that I took a deep breath, sighed, and grumpily mumbled, ok as I retrieved his breakfast.

Proverbs 15 :1 A gentle answer turns away wrath,  but a harsh word stirs up anger.

I hope low tone mumble counted as soft.
In the 60 seconds it took to get his coffee and bisc, (and my second cup) I recalled a time Hubby woke up and asked me what time they served breakfast around here not realizing he was in his own home. Maybe this was a time like that.

ORDER UP!!

By the afternoon the coffee had already made it's internal round and bathroom trip so all was well with the world again. :)

Hubby has been quiet and or sleeping.
After a bathroom trip he decided to put on a pair of shorts that had buttons.
I watched him attempt to button them for close to 15 mins.
It saddened my heart to see his struggle. I weigh heavy the options of when to help and when not to. I don't think I'll ever master that decision making.
Finally frustrated Hubby announced, "Well I can't get these things done."
I offered to help which he accepted gladly.
He then sat down on the end of the bed and in a disgusted and defeated tone said, "And I think I can ride a bicycle."
I looked right at him and smiled real big and told him, "Well Honey, We all need to dream."
He thought this was quite funny and started laughing and said, "I guess you're right".
Then in a matter of fact tone, I added, "Of course I am."
A remark that made us both laugh.

Broken Dictionary

Since living with Lewy Body Dementia, I realize more and more that, to Hubby, I am literally his everything.
Yet somehow, the meaning does not look or feel like the mainstream romance definition for movies, books and music for some reason.
sigh
We need a song :)

I want to ride my bicycle

OK so I know this is a double post for the day.
But I promise my apology for 2 in a day is probably  longer than what I want to share.

Hubby had asked for a bike for weeks until I couldn't avoid any longer. 
FedEx pulled up with his freedom box this evening. 
I assembled it in the heat, sweat pouring off my nose. 
Hubby sat on the stairs inside the house with the door open to watch. 
After I got it assembled, aired the tires up and gave it the once over I proudly announced,"It's ready to ride".
Hubby's response, "I don't feel like it." 

ROFLOL!!! 
Looks like I got a new bike ;-)

Spontaneous combustion?

I love being spontaneous!
Or I used to love it.
These days with Lewy Body Dementia running the show, being spontaneous raises my anxiety level.

A couple of days ago Hubby decided he needed a haircut.
He refused my offer to buzz it and wanted to see a professional.
I  don't blame him there. I really stink at barbering, and I know it!!

So a haircut doesn't sound so bad, does it?
WRONG!!
Immediately my "sneaky devil' radar started blipping.
We've already had a terrible round of trickery from Hubby under the guise of a haircut.
I get nervous. My pulse quickens and my palms get sweaty. Every scenario runs through my head.
Anxiety creeps up the more he insists and me with no really good reason why we can't do it.
Lewy doesn't help matters either when he gets completely ready to go!
Completely dressed, alone, shoes socks. He's waiting on ME!

I try to delay in hopes that he will tire and wish to nap.
I change shirts and run a comb through my hair.
Add to the equation 2 of our grandsons (ages 3 &5) that are here with us also.
We find socks and shoes and of course they are easily found because Happy (my grandma name) has taught them to put their shoes in the same place every time!
WHAT IS WRONG WITH THAT WOMAN?!!
I mean, when did they start paying that much attention? They are 3 and 5 afterall.

So the boys proudly present their shoes and get them on the right feet.
oh yay :/

I ask Hubby if he wants to ride to the car in the wheelchair.
No! (firmly)

I decide to load the wheelchair anyway despite his insistence that he doesn't need it.

Once loaded and buckled in we make the trek to town. Chatty boys in the back seat, Hubby talking about the unfamiliar scenery and my mind racing.
Gripping the steering wheel tighter as we enter town, I suggest we go to a larger facility than Hubby wants so I could use the wheelchair.
Guess what he said?
Go on, guess.
Yes, he said no.

I get annoyed and Hubby asks why so I explain that he insists on doing things the hard way and it frustrates me, then I stop mid explanation and  tell Hubby, "You know what? Instead of being upset I should just appreciate the fact that you want to go out and do something. I'll stop complaining about it. I'm glad you want to get out with us." Hubby and I ride silently the rest of the way listening to the chatty boys.

I park as close to the door as I can for Hubby who still refuses the chair.
The boys are excited and as young boys do, they must investigate every thing they see and come back to tell me. Apparently their behavior distresses Hubby enough to throw his walking off and he freezes every time he concentrates on the boys. Or so he blames them for it.

(personally any activity Hubby concentrates his attention on does the same thing but I'm willing to let the boys take the blame as long as he isn't mad at me right now)

I send the boys to stand by a large flower pot and look at everything there while waiting for us.
Off they go.

I finally get Hubby inside and get his hair cut while the boys chattered about everything.

Oh great, now we have to leave. Boys scramble from their chairs and out the door.
Their little legs and feet are moving as fast as my pulse knowing we are going back out into the world. Away from the safety of home. Once we finally get to the car Hubby decides he wants to go get something to eat.
I only ask where, already knowing the answer because I am the one that will make the decision anyway.
Once there it takes 3 of us to get Hubby inside. And yet he STILL refuses the chair all in the name of his pride.

Food ordered, Drinks served in to go cups, food served, everyone's meals cut up.
Once we all finished I suggest that Hubby may want the chair to ride out in.
He agrees!!!!
I didn't give him time to change his mind before retrieving it from the trunk.

Loaded and locked in we head for home, but I'm still on edge about being out. We aren't home yet and the day is still young enough for Lewy to make trouble. With every thing Hubby suggests he do I fret inwardly so not to show him my frustration.
MUST. REMAIN. CALM.

A stop at a friends place of business had Hubby trying to get out of the vehicle but unable to finish his attempt. Melt down had occurred so I put his legs and feet in the vehicle, buckled him in and away we went to the safe harbor of home.

Once home, even 5 yr old took Pappaw's hand as he got out of the car. I unlocked the house, threw down my purse and got the chair for Hubby to give him a ride in.
Since then Hubby has pretty much been wiped out and slept.

No serious incidents so I was fraught for nothing.
Serves me right worrying about something I had no control over.

One of the difficult things about being a spouse caregiver to dementia, at the end of the day, I have nobody to pillow talk with and bounce the events of the day off.
Nobody to hold me and say, you got through the day just fine, or, tomorrows another day.
The loss of intimacy, both physical and mental, is painful even if you think you have moved past it for the most part.
I think it's like having your heart picked apart in small pieces, like a crow on roadkill.

I can't leave this post like this so I'm adding something I found from an earlier time that I forgot to publish

Hubby: "I don't feel good."
Me: "What's wrong?"
Hubby: "I don't know."
Me: "Are you sick to your stomach or just general feel bad?"
Hubby; incoherant
Me: "Are you , Go to the Dr sick?"
Hubby: "No, I just need to be babied."

OH HUBBY!! LOL!!

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 ;-)

Focus

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.)

Immediately:

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.

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.