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.

Friday, April 29, 2011

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.

Wednesday, April 27, 2011


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

Wednesday, April 20, 2011

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.

Sunday, April 17, 2011

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.”

Friday, April 15, 2011

Pop Goes the Weasel

When you were young did you ever play with a Jack in the Box?You twisted and twisted the handle to play the 'Pop Goes the Weasel' song knowing full well that 'Jack' was going to pop up and every time he did you still jumped.
There were times if he wasn't put back in the box just right; after the 'pop' part of the song, there was disappointment when the lid sprung open and 'Jack" never appeared.
Some days this is how it is with Hubby and Lewy Body Dementia.

After Hubby's fever the other day he didn't have the 'bounce back' I was expecting,
the lid opened,
but no pop,
yesterday and today.
Sun- Hubby was unresponsive
Last Night -Hubby talks about his problems with Lewy
Sun- Hubby cant walk
Last night and Today- Hubby has walked all over the house
Sun- Hubby doesn't eat and when he finally does he must be fed and all drinks must be held so he can drink through a straw
Today-Hubby has a good appetite. Too good in fact. He's eating everything he can find.
Sun- there is no way Hubby could have assisted with a sink bath (his normal bathing now for quite a while) Today- Hubby gets INTO the shower to get cleaned up
Sun- Hubby would barely open his eyes even when spoken to
Today- Hubby tells me he thinks his glasses are getting better. Yeah I'm not sure what that means either.

So I was hoping Hubby would  'pop' back right away and he didn't. I was disappointed. I feared there would never be the 'pop' this time.
But through the power of prayer, I whined enough for it, Hubby got better, if I can use the word better.
Oh he still doesn't remember that we got married and he isn't sure exactly where he is most of the time. The same cognition problems are there. I don't notice an increase in those. The 'people' I cant see are still here. But Hubby is better in that he is calm, accepting. Not as agitated, even cracking jokes.
Just last night he was talking to me about his illness.
I am honest with Hubby about it. I am matter of fact and I don't give excess information.
Just the facts, mam. And then I let it go unless he has questions.
I assured Hubby that I would do everything in my power to care for him and keep him safe and comfortable at home.
I think he is most satisfied with the hard time thinking diagnosis and blocks out the rest, but hey, as long as I know, it's OK.
Some time had passed after this discussion and Hubby said something that didn't make sense.
I think he realized it because when I asked "What?", he laughed
He said "I thought you were tracking me on my mind."
I just looked at him, smiled and laughed.
Hubby grinned real big and laughed too, saying, "Oh, just shut up!"
We laughed really hard.
It was a great night.

POP! Went my Weasel when I stopped to tie my shoe.

Sunday, April 10, 2011

***Now that I got that off my chest ***


OK. I seriously feel a little better after lodging my complaint with the complaint department (aka my online caregiving friends)
You guys understand and don't judge when bad days are had. When emotions are sitting right on shoulders.
You have walked the path of fear and frustration and nerves (the good and bad kind)
You are quick to offer support and encouragement. My prayer warriors run to the throne, my finger crossers even cross their toes, my well wishers wish deeply and wholeheartedly and my pixie dusters sprinkle pixie dust (which I like, by the way)  by the bag full.
I can't imagine what it would be like to travel the journey without you all.
I am a blessed woman and I so appreciate YOU!

Today Hubby struggles beyond behavior.
Perhaps the oncoming illness made it's presence known in the form of noncooperation and  hostile remarks.
Hubby has run a fever.
Fever and Lewy Body Dementia do not mix.
One of my greatest fears is fever.
Fever tends to cause more problems.
Hubby's poor brain does not need the 'baking' that seems to happen when fever is present.
Fever makes Hubby more confused.
No, that's actually an understatement.
Hubby is just not there when fever is.
Hubby can not walk, rise, sit up, move, respond.
Hubby can not cooperate and must be physically manhandled for everything including bathroom care.
This is only our second bout with fever since his diagnosis in 2007.

Perhaps Hubby's swift 'drop from the cliff' coupled with the encouragement I received made me a little more accepting of his recent behaviors and my helping lay aside my  feelings of defeat.
Maybe God knows I work well under pressure and I'm always up for a challenge so He knew a major change would rally me to action.

Either way I have a new found resolve to keep going and persevere.

Today Hubby was unable to respond to my verbal directions that actually had to be modified to physical limb movement using both, hands and feet.
Let me go on record, I am NOT a very good dancer!
Oh I'm great in the fast paced, on your own, need the space or you get hit style. But the close up, move together in rhythm needs LOTS of work!

So are you up for a smile moment?
I actually found one. Had I not been looking I would have missed it.
After getting Hubby up out of bed, for wheelchair transport, I was able to get Hubby onto the toilet. I left him there to care for the bed linens.
Since the toilet seat is a handicapped one with rails/ handle bars/ whatever you call them, I felt comfortable to leave him there while I attended the bed and he did his business, or what was left to do. He was gripping the hand holds as I walked out. A few mins later (yes I have learned how to make a bed quickly) I walked in only to find Hubby had leaned back too far and was sliding off the seat!! Stupid stupid me!! OK enough of that!
I rushed to Hubby and was having to speak loudly to him and repeat his name several times in order to get him to even respond to me. I seated him upright and started the underclothing application.
But couldn't understand what I needed for lifting feet.
I was finally able to get his hand on the hand rail I installed on the wall and pull him to standing. When he raised to his feet I said loudly , "Honey! I'm going to  pull your clothes on!" Once accomplished I tried to get him in the wheelchair. The death grip he had on the rail was almost impossible to loose. Over and over I repeated my request and saying his name at times. I was sweating and struggling to turn him but he wouldn't let go of the bar.
I finally pried his hand from the bar and he grabbed me. When he did he grabbed my side, then my pants and started pulling on them as though they were his and he needed to remove them for toileting (Smile moment). I got tickled at this and I took a moment to pray for the strength to accomplish the task and him to be aware enough to help.
I don't think he was ever aware enough to help but I did have the strength to accomplish the task. I'm not sure how I got him in the chair but I did and finally was able to get him into bed and settled; For now.

Hubby hasn't eaten all day despite the deliveries of food. That's OK, I pushed the fluids though and offered and he just ate a jello fruit cup.
I had to hold his cup and straw and feed him because he can't do it.
Tomorrow is another day, I'll make it through.

Saturday, April 9, 2011

Some Days

Some days I just want to scream
Some days I just want to shout
run away
twirl around like a tornado
throw things
be the mean girl
sit down
and give up
Some days I can't think.
I can't find the energy to exert on it.

I haven't thought well for a few days
I didn't even want to type right now,
but I didn't want to be silent, more.

I'm tired all the way to my heart.
I'm feeling empty.
I want to smile and laugh but the efforts feel forced.
I want to offer encouragement to others but I can't find the words.
Brain fog is rolling in and I need to combat it.
I try to read my Bible but the words all run together.

It's days like these I wonder. Will I survive caregiving?
And if I do, what will I be like at the end?
That thought frightens me.

I'll dig out of this hole I feel like I'm in.
I'll look back at it and say,
Some days I sure could be whiney

Saturday, April 2, 2011

I don't know what that means

Hubby and I have been trying to converse about a couple of things.
The confusion that comes with his Lewy Body Dementia has really taken a forward jolt leaving me to scramble for a thesaurus when trying to talk with him.

His conversations are nearly nill anyway but after shortening compound sentences to singles; then single complex to simple; and simple to "old western movie indian"; and sometimes, just single words with a look.
I do struggle to make connections at times.

For instance. Hubby asks me every day what day it is. Sometimes he asks me more than once. I can usually respond with the correct day. I say usually because sometimes I get my days mixed up too but that is completely beside the point.

On Wed, Hubby asked me if it was a diff day. I didn't think too much of the wrong day conversation as we have had it often and I tell him the day. Wed was the correct one. We talked about Wed.
So, today is Wed?
Yes, today is Wed.
What day is Wed?
Today is Wed.
No, I mean what day is Wed?
Oh, Today is the 30th of March
What is today?
Today is Wed.
(confused look) I don't know what that means

At this point I say that Wed is the middle of the week and a day that the aide comes.
Hubby seems satisfied with this answer and I think nothing more of it

Today, there was a flurry of activity in the house.
2 rambunctious grandsons hungry for food engaged in a discussion of some type with their mother.
The kitchen is located off of our bedroom.
Hubby motions for me to come over to him.
I approach the bed and lay beside him.
He asks me who's talking.

I tell him Daughter in law is talking to the boys
Hubby is confused as to who daughter in law is. This is not new to us and I don't feel so alone in the forgotten pool. (Welcome to my world daughter in law)
He asks what she is doing
I tell Hubby she is talking to the boys about lunch
Yes, it's lunch time and they are hungry.
The boys want to eat.
(confused look)
Daughter in law is making food for the boys.
(confused look) What is she doing to the boys?
Feeding them.
They want food.
(silently Hubby stares at me and says) I don't know what that means.
It's OK, she can take care of it.
(Hubby looses his confused look and closes his eyes as though relieved)

Oh Hubby, I am grateful you feel confidant enough to tell me when you struggle to understand.
I'll understand for both of us and make it OK for you.
OK enough for you to close your eyes and feel like everything is OK.

Friday, April 1, 2011

Another day starts at 4 AM

But not like the first.
One of the features of Lewy Body Dementia is REM sleep disorder.
Hubby acts out in his dreams hitting and punching.
Most people during dreams are in a "frozen" state.
Ever have a dream in which you tried to get away or do something and couldn't move?
Well that's because you can't move. Your body is semi paralyzed.

With Lewybodies the poor dreamer is in a real struggle of falseness and reality.
False thoughts in the form of dreams and the reality of attacking, hitting, punching and/or kicking.
All dreams seem to be violent in nature which at times can be distressful not only for Hubby but for myself when I'm on the receiving end of the nightmare. You would be distressed too if you were waken from a sound sleep with a smack upside the head, I'm just saying.
And I've mentioned before about the poor bedside table.

This morning was no different than any other REM sleep moment other than the jolt awake did just that,
woke me up,
so here I am.

Since our last 4AM fall down Hubby has been doing OK. He is sore more than anything.
He requires more assistance in rising from the bed due to the soreness but other than that, No marks across his face and only minor bruises on his arm where he hit it on something.
He has resumed his sleep pattern of most of the time.
As for me, for some reason, I am just beat.
I think for the last 2 days I have been more tired than usual.
I find myself napping for even 10 mins a few times throughout the day.
I will chalk it up to the dreary cold weather we have had again.

SO I am happy to report that we are in a holding pattern and I'm quite happy with that.
Today Hubby's aide should be here for 4 hrs and I have no errands to take care of or groceries that just have to be purchased so I think I shall call a friend and see if she would like to have lunch with me.
I need a little down time when caregiving is on a back burner of my mind and not a front runner.
I don't get to do that often.

It's a good day, no fooling, and I hope you can say the same. :)