Caught Off Guard

Hmmm.

I've said before that Hubby has had a downturn.
His Lewy Body Dementia has caused him havoc in his cognition.
I'm having a difficult time sorting out his words and keeping track of his confusion.
There seems so much of it that it is now the normal.
We have lots more "people" in our house and one guy that is always looking for someone and another that preaches. I told Hubby that the preaching didn't bother me as long as the guy preached the truth ;-)
Hubby thinks it is.
The "people" are spoken of more often, maybe they have been here all along just not mentioned.
The GOOD thing about them is that they do not upset Hubby.

Hubby asks me more often where we are. I always say and he either gets suspicious of my answer, as if I'm trying to fool him, or seems surprised. He never gets upset about it.

He startles easily, has for a while actually but I can be looking right at him and speak to him, Hubby will jump high enough to scare me!
We leveled out or just adjusted to the new level of confusion so the ride, although downhill, is manageable.
Things are perking along.

What caught me off guard is, that tonight, I experienced a bout of lonliness.
As if it came out of the blue and landed on me, seeping through my eyes.

I'm not whining, I thought why would I even bother to blog about that feeling.
It's just one feeling.
It will pass.

My goal was to be honest about my life with Lewy Body Dememntia.
Tonight my life experience is that I feel lonely.
And you know what?
It stinks.
Tonight I miss my husband even though he is in the same room as I am and will sleep in the same bed as I will.

But you know what else.
It's just a feeling. It will not dictate my life.
I will probably miss him many more times while he is here before I miss him when he is gone.

I will, however, be OK.

I See the Light

"Honey?"
Hubby asks.
I look through the bathroom door into the bedroom as I gather clothes for the washing machine.
"Yes?"
"Come here and help me with this lamp."
I ask Hubby if he wants it off and he answers yes.
I set the dirty clothes down on the top of the hamper and step into the room.
I move Hubby's over the bed table to reach the lamp and touch it.

The light goes off.

I look at Hubby and smile making sure this is what he wanted.
Hubby looks at me with the 'I can't believe it was so easy' expression and laugh, smiling back.

Hubby and I laugh together.
I hold his face and give him a kiss.
I say "I love you."
Hubby says
"I love you too."

It's a great moment.

Vent

I'm only doing this because I need a vent about Lewy Body Dementia.
I have found that through blogging I have a way to release my feelings and it becomes a way of self help. Keeping my thoughts and feelings sorted. Allowing me to re read them and realize things are not as bad as they appeared at the time.
I am not looking for sympathy or a pat on the back.
I just want to vent.
As I stated in the writing of this blog, this is the life Hubby and I share and these are my thoughts and feelings.

I've tired at the downcast posts I feel like I've written lately. I want something uplifting to share.
Today won't be that day though.

I'm tired. When I do not get my allotted hrs of straight sleep I'm grumpy.
Today I am grumpy.
I blame Lewy for this and not Hubby. And Yes, I do differentiate between the two.
I don't like Lewy but I love Hubby.

Lewy was up ALL night! Wandering the house, clutching everything to keep himself up righted.
Rattling the dresser, disrupting my nightstand and banging the bed. Scooting the kitchen chairs and clinking utensils and dishes forging for food. Then the trip back with items in shaking hand.
Unfortunately the items were liquid and he spilled it on the bed causing me a quick jump up and blanket removal while I realized I was walking in  the stream of liquid on the floor. Chocolate Yoohoo, YOOHOO!!

You are right in your thoughts, the bright side to that is it was only yoohoo.

It started with the wipe out from last Saturday. What a great day that was for Hubby. The trade off for it is very high and seems to be rising.
Lewy started taking over. Sleeping more and extra mobility problems. Then last night serious confusion, as if regular confusion isn't enough.
How do I explain that? Regular confusion is just wondering and OK with the answers. Serious confusion is completely lost with a concentrated expression on everything. Did that make sense?

This morning Lewy is still awake and wandering in search of more food.  It doesn't matter that he already had breakfast served, he forgot, and he wants to eat again so I prepare him something else. While he waits he stares. He stares into the other room and again that concentrated expression comes across his face. Lewy asks me who is here. I name all of the House Occupants.
Lewy wonders because the man in the other room looks like he is looking for someone.
The man is just standing there looking as if searching a crowd of people.
Of course I do not see a man so I once again name the people in the house and assure Lewy that we are the only ones here.
Lewy accepts this answer with suspicion but accepts non the less.

I feel the necessity to inform House Occupants of the condition of Lewy today.
Hallucinations are one of the core features of Lewy Body Dementia.
Not wanting House Occupants to be upset by this behavior I calmly explain what may need to be expected throughout the day and if face to face with it how they should react to Lewy.
House occupants are as understanding as they know how and agree to not get frightened by the confusion and respond as I wish.

Lewy retreats to his room to lay down.
I follow to whine and complain about him in my blog.
Lewy decided he wants to sleep.
Hmmm I think I will need to vacuum this room.
Sorry for the disruption Lewy.
Take it up with your friends if you have a problem with it.

Afraid to Fly

I keep reminding myself that last Saturday, was a GREAT day!

I need to keep reminding myself because,
ever since then, Hubby has been wiped out.
Physically and mentally.

Hubby has been sleeping a lot more. He sleeps all the time so how can that seem possible?
I have to wake him to eat and use the bathroom but there are times he wont even budge to do those.

When he has been awake he has been in a huffy mood. I'm not sure why but I remain calm and agree with him about whatever.
Why?
1: He will forget what he said,
2: He can't walk far to go anyplace if he talks about leaving,
3: He isn't hurting himself or me
4: He thinks I'm a pretty good ol gal for taking his side, especially against that mean woman that has him locked up here (yep, that's me)

I win all the way around :)

Conversation is NILL and what conversation that there is, is completely off the wall or barely coherent.
Last night Hubby became upset with the fact that the people driving the airplane weren't keeping it steady while he tried to get up and walk to the bathroom.
This revelation came after a few earlier questions about
how did we get on the airplane
and
when did we get an airplane.
He was serious in all of these remarks.

My replies, I thought you were afraid to fly. All 3 times.
Hubby never acknowledged my response and I didn't have to argue that we weren't and didn't, trying to prove I was right.
Smooth flying for me; I love to fly ;-)

I just hate that these times of conversation are fading faster and faster.
Trying to piece together the ramblings into something understandable is a challenge to my own mind.
My heart is holding up well. I'm dwelling on the good things.
Even when Hubby's feelings of doom and mentions of not being here much longer are the topic of the moment.
I just look at him and tell him,
"You can't"
He asks why
I tell him "You better stick around at least until that new baby gets here. "
He always smiles and his hazel eyes shine.

Showering the Baby

I've taken a couple three of days off from internet activity to concentrate on hosting a Baby Shower for My Baby!
Hubby and I are getting ready to welcome grand(son)child #6  and we are SO excited. OK I am so excited but Hubby and I are one so We is I and He is We, you get the idea.
I don't think Hubby fully understands and if he does it's hard for me to recognize it.

Hubby had a downhill turn for a couple of weeks. We dealt with things as they came and didn't come. To be honest I wasn't sure how the Party day would go with Hubby's decline. I know that lots of extra activity confuses him more than usual.  Hubby has a very difficult time processing too much commotion and it throws him like throwing water in a working toaster. It starts to short circuit and spark.

I offered to host the event because getting away from here with Hubby seems to be a mighty big challenge these days. Bringing the party to us was the better choice, Or so I prayed :)
I busied myself preparing for the event, Sister in law, Bless her heart, offered me transportation to shop for needed supplies while Aide was here. Niece was placed on the decorating committee. Poor Niece had to endure the craziness that is known as "Aunt is expecting company get your butt out of bed and help!" Yeah, it gets a little tense and drill sergeant-ish, just ask our Children. They will attest and can tell stories, on second thought, don't ask them ;-)

I love that I serve a Great Big God and that as my Father he hears my smallest pleas (please). Let us have a good day. We did. Not only was it a good day I would almost consider it a GREAT day for Hubby.

A cooperative and low maintenance Hubby for a day. No extra laundry, confusion didn't seem off the wall and not stressful for Hubby. Walking was much improved, slow and at times, upright and upright is something! Hubby walked into the room closest to us as we congregated for the festivities. I prepared him a plate of goodies and he seemed to enjoy them. After we snacked Hubby joined us to watch while games were played and gifts were opened. Although he wasn't an active participant, he was a present observer.
(Hubby even let me talk him into wearing pajama pants with his robe )

Snacks, gifts, games, pictures and lively conversation didn't phase Hubby in a negative way. God is GOOD!

Kathy, Hubby and Beautiful Baby with baby <3

So today Hubby sleeps. It looks and sounds like a restful sleep :)
He woke a few times to go to the bathroom and have breakfast. Supper brought him MUCH confusion as he didn't understand why we needed to eat at that hour. I like to eat at any hour as my picture shows! LOL
I realized looking at that I HAVE to take control of ME and get my head and heart on the same page working together for me. I count for something, why have I been so neglectful?

Today I catch up on a couple of days of internet fun but it feels like I've been gone for a long time. The internet highway is sure fast and you can get passed by and be left behind!!

I've branched out a little bit on my blogging.
Here, I have met a few caregivers. I love the support we can offer each other in our responses.
Caregivers are a uniquely and intricately woven group of people. Like a cord, alone can be torn in two but braided and banded together, strong yet flexible enough to keep each other supported during the times of caregiving hardships and, celebrate with during times of caregiving triumphs and moments of joy.


I've started to Tweet.
I know, you may think I've gone cuckoo but I decided to give Twitter a run.
I have a lot to learn yet on Twitter but I am hoping that I can use it as a tool to educate others about Lewy Body Dementia and help another Caregiver that, like I, searched for something, anything to help them through this often scary, confusing, lonely and isolating life known as caregiving.
I've learned so much about Lewy and Caregiving yet still have so much to learn about it.
I just want to share and encourage.

Our Groundhog Day

I made this comment to another Caregiver friend...

Life with Lewy (Lewy Body Dementia) is ever changing.
Just when you think , Hey, I got this! Lewy changes the rules hmmph!

Just tonight I ran into a situation that was new for me.

Hubby and I had a lady friend that passed away last Dec.
Another friend had stopped in to see us and inform us. He spoke to Hubby but at the time Hubby didn’t know who he was. Friend was pretty upset by it.

Hubby and I talked about the passing of lady friend afterward and Hubby seemed to understand.
Like I said, that was Dec.

Tonight, Hubby asked about our lady friend.

Now for the last 2 weeks Hubby has been on the downhill slide, tonight we were somewhere in the middle.

I mentioned that she has passed away and that friend came and told us.
Hubby was very upset. He had not remembered so the feelings were new to him.
It was very sad.

I hope this is not something that Hubby must relive over and over again.

I wasn’t sure how to deal with it so instead of insisting that he already knew and it was a couple of months ago, I just sympathized with him and we talked about her for a while.

Even though the moment was sad, for a brief moment, my husband was visiting with me and that was what I chose to focus on.

Gentle Reminders

It's been an emotionally tough day today for a vast many reasons.

Hubby for the last couple of weeks has been on a downhill slide.
Mobility coming and going at the drop of a hat.
Lots of extra wheelchair rides
and 
LOTS of extra confusion.

But we are gettin through.

My post wont be long, I know, faint, right?

Tonight as I was attending to Hubby he looked up at me and asked me.
"Am I supposed to remember you?"
I answered calmly and matter of factly
"Yes, I am your wife, I am Kathy, and I take care of you.
And if it helps, You love me."

Hubby smiled at me and gave me a kiss.

Hey, I'm just delivering the facts ;-)