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.

Thursday, August 23, 2012

Some days...

It doesn't pay to get out of bed.

The day actually started okay.
Hubby had a Dr appt scheduled and as the norm for him when he know about an appointment he stresses about it. Asking every day when it is, what time, what day is it now, etc etc as though he is worried he will miss it.
We arrived in plenty of time and had a short wait.
We were escorted to the room and Dr was complimenting Hubby on his new haircut (I buzzed it off again but I wont tell you about removing a middle section of one of his side burns by accident) and his new shave  (he FINALLY let me get rid of his beard). Hubby was bright eyed and talkative and Dr  commented on that.
I told Dr that was one of the bounces we get with LewyBody.
We all discussed meds and how Hubby was feeling to which he replied, "Oh alright I guess, I don't really know" and as if someone flipped a switch, Hubby got very angry in tone, body posture, attitude you name it and proceeded to tell the Dr about how he was mad at the VA for allowing me to steal all of his stuff and him have nothing. He didn't understand how I was able to convince the VA that he was sick and the do him like they did.
I think Dr was taken back a little because he had not seen Hubby like this before.
Dr asked Hubby what he thought was wrong with him and Hubby replied, "Not much of anything that I can tell."

I'm not going to go into all the details of Hubby's beliefs of lies and deception, or Drs attempts to smooth Hubby's feathers to no avail. Dr couldn't get straight answers from Hubby about certain accusatory things so he finally just cut him off saying we could do that all day but it's hard to converse with someone that cant understand that he has an actual problem and it would do nothing but upset Hubby trying. Our appointment ended.
Hubby was not happy.
I wasn't happy, but not at Dr and not because of what Hubby said. I was not happy because there was obvious distress in Hubby's tone.

As usual I try to fix everything with food. I suggested lunch.
Maybe that only works on me but Hubby wanted no part of it so we came straight home.

Once home Hubby settled in then came to find me, we had to talk.
He was leaving me.

This is the part I didn't do well at and things went down hill pretty fast.
Actually the ground opened up and we plummeted.
I did not fall gracefully. 

Hubby took a breather as I was breathing hard, he returned to tell me he wanted a phone number so I wrote it down and handed it to him. Then as a courtesy (read with a sarcastic tone) I handed him the phone. He stared at it (because you don't know how to use a simple phone!) He asked me several questions about the phone and I did explain how to use it and even suggested he use the pick up and dial phone in our bedroom. No extra on off buttons besides the numbers to push. Hubby stared at the phone as I stared at him, then he threw the phone across the room. I mumbled, great, under my breath and he yelled at me for not dialing for him. Snap, so I yelled back. "If you think you're able to move out and live alone you should be able to make a phone call without help. Prove you can do it!"
Go me, that's telling him, way to go girl :/

Hubby retreated to his bed and I felt like dirt :(
I try so hard not to get wrapped up in the negative of dementia but some days it feels like I jump in feet first.
I know how hard it is for me to live with the difficulties but I can only imagine how difficult it is for Hubby to live with it every day without escape. Why do I make it even more difficult for him sometimes?

We eventually settled down and talked.
He said he was a burden, I said he wasn't a burden but there were times that his Lewy Body was difficult.
I also said I knew he didn't understand why things are happening the way they are and I was sorry that I added to his stress with my own behaviors. I try not to. I don't always succeed.

He made his call, I dialed for him.
We are getting ready to go out for supper.

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