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.

Tuesday, March 16, 2010


[Opening narration (season 1)]
Narrator: There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call the Twilight Zone.

Daylight savings time messes me up for a while. Just as I'm about to get used to it, it changes again. :-/

Since Hubby has no concept of time any longer he really doesn't seem bothered by the time change. Getting up when he wishes and eating when he wishes. No matter to what time it is. Time is just a word.

For me, it still has some meaning. Because Hubby has an aide that comes I need to make sure I have been up for a while and had some coffee in my system before she arrives on the early days. Since I have limited "going" I do much ordering on line for various items so I make sure I'm up and dressed before I get caught in my jammies when deliveries come. I actually found an online site, alice.com, that has many of the products I use on a regular basis for right at and sometimes below, sometimes higher, than what I would normally pay so I order those on line now and they are delivered free. YAY!!  Mondays are trash days so I must rise early enough to drink a cup of coffee before I must dress and trek the trash to the end of the long driveway before the trash man runs. Time and days still have some meaning for me.

Yesterday was Monday, trash day, but Hubby had already gotten up before I did. He was actually the one that woke me with his rattling around. And NO he did not think to take out the trash.

Hubby had things on his mind he wanted to take care of. I wasn't too happy with his "things" as I feared they had much to do with the driving aspect we have gone round and round about. Hubby was not clear on what he wanted to accomplish.

He decided we were to go into town and off he went to get ready. He shaved (electric) got completely dressed and waited as I finished up. Talk about oddity. He hasn't been able to accomplish that in what feels like forever. I was happy he could though.

As we were headed to the door I couldn't find my house keys. I searched and searched. I tried to backtrack every step I had made since the last time I saw them on Friday. Hubby waited patiently on the steps while I looked. I searched my purse, removing everything in it more than once. I searched the car more than once. I looked in every cubby and pocket. Between the seats under the mats. The only thing I found in the car, besides the regular junk, was a half empty coke bottle, a nasty lip gloss, half melted mint, empty tic tac container and a penny. Penny for your thoughts ;-)

I searched my home. I took everything apart emptied every drawer, cabinet, went through the freezer, fridge, looked in the hamper and washing machine. Raked the burn pile and the leaves closest to the house. I went from confused to frustrated to annoyed.

I called the Post office, all 3 stores I went to, the big time weekly newspaper, I even went so far as to call the police station. Yes, I was desperate to find them. I don't know why. They were just house keys after all but it was the sheer fact that I could not remember where I may have lost them. I wondered if this is how Hubby feels much of the time.

I finally graduated to obsessed about it!! So much so that even hubby was laughing at me. I felt like it was making me nuts. Perhaps it was me with the problem and not Hubby. nahh lol!

This day had not started out very well and as time marched on it was too late for us to go anywhere and be back before the aide arrived so the trip to town was cancelled . I was actually relieved.

Hubby's aide was ill so he had a sub aide. While she was here Hubby brought her to the room with the digital picture frame in it.

Hubby and I had been blessed to be on the recipient side of a gift of a scanner which has been put to LOTS of hard work scanning pics of old and transferring to the frame. Hubby has really enjoyed sitting and looking at the pictures of when he was young and younger. Old family photos of loved ones already gone and photos of what we now call simpler times.

Still in key hunt mode I heard Hubby talking to the aide and it made me stop in my tracks. He was telling the aide about every picture in the frame. He was giving her names and locations. Details about things in the picture backgrounds. He talked about my family and how they were related to me. He even remembered my mother. He hasn't been able to associate her to me in a while.
He named all of the kids, his and ours along with the grandchildren. He named his parents and all of his siblings and their children giving a brief description of their relationship.
I stood in the kitchen in disbelief of the things I was hearing. I wanted to shout with joy! I wanted to cry happy tears! Mostly I didn't want the aide to leave so I could listen longer. 

For a while Hubby was back. At that while I would have said completely. I believe he could have done anything he set his mind to.

I want/ed to believe he can but reality holds me back. I know this won't last but I still want to enjoy and appreciate it. The sad thing is that this moment of clarity makes it even harder for Hubby to accept he has a problem.

Today has a different tone. Hubby just came to me very upset that his drivers license has expired. He knew they would. He saw the reminder and we talked about it. I posted it on the bulletin board but never reminded him when the time came to renew. (I know, bad me) Today I'm the bad guy. Guess we play it by ear.

Why must Lewy Body be so mean as to dangle the chocolate carrot in front of you only to pull it back and take a bite from it?

Oh and FYI, keys were located. I called the Post Office back and since one of the keys was a PO key they just put them in my box. YAY!!

Some days it truly feels like living in The Twilight Zone.

1 comment:

  1. Kathy, I totally understand those moments when they return... it's exciting. I can't imagine what it must be like for you caring for your husband how I care for my mom. YOU are doing a great. I wish we lived closer so that we could help each other. I heard about these women who formed a club where they all care for each others' loved ones when one has to do something like go to the store or worse... the hospital.

    Anyway, I love reading your blog. I need to add it on my site so more people can read what you write...

    You are both in my happy thoughts too.

    Big hugs and lots of love,



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