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, 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.


  1. My dear friend Kathy... I just went through this with my mother. She had pneumonia and a high fever. Her Blood pressure was crazy. She got Clonidine to lower her BP and now, she's sprung back. I would never have believed it possible.

    Hubby can rally back.

    My thoughts are with you always.

    Your friend in the CARE Giver trenches.

  2. Hey Sue,

    I'm so happy to hear your mother has her pep back.
    Fever is terrible, isn't it?

    I'm not sure what caused Hubby's fever it left like it came. I checked his BP and it was great. Better than mine in fact LOL!

    Hubby did rally back.
    That's the good thing about Lewy Body Dementia.
    I think.


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