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.

Saturday, March 17, 2012

What a day

Hubby has had a very interesting day today.

But it all started back a few days or maybe I should say nights.
I have been keeping a close eye on Hubby since he started his new seizure episodes. Not overly worried or concerned about them just yet. I've been monitoring his BP and it has all been in a normal range laying, sitting and standing. His pulse rate has been elevated though. His last episode was Friday while he was with his aide.
For some reason I am always comforted by the fact that someone besides me, sees what is happening with Hubby.
When I should be thinking, "Oh poor Hubby and poor you, I'm sorry you had to witness that"
Instead I'm thinking "YAY, something happened while you were here. I am NOT imagining things"
Weird I know.
The night was followed by lots of extra confusion.

Hubby's normal, but less so lately, nighttime behaviors have consisted of night time snacking and trips to the bathroom. His normal movements have become "white noise" to my sleep patterns and anything out of the ordinary sets off some type of alarm in my head and body and I immediately jump to the ready. I'm never off duty I suppose.
Lately however, Hubby has been staying up at night and wandering stumbling through the house. The parkinsons symptoms associated with Lewy Body make Hubby shake terribly. Results being that anything he touches is shaken and rattled since there is no way to control this movement.

That leads up to the last 3 nights. Hubby has not only been NOT sleeping at night again. He makes every attempt to get into the kitchen at night clutching everything in his path until he finally gets there. My offers to fetch for him are met with resistance as he feels he is quite capable.
I just wish he felt capable during the day and not during the middle of the night.
You see, as Hubby passes my bed he holds it, you know where I'm going with this so just let me start from his bed.

He has a metal over the bed bar on a chain that he uses to help himself rise. (can you hear it clanging?)
Next to that is a bed table, with misc items on it, that I move out of arms reach to keep it from getting beat up at night and knocked over.
Then he moves from the table to my bed side.
I wake and move, mistake, he thinks I'm talking material, I'm not, other than, "Are you ok?"
Hubby pauses to say something I don't understand and probably if I were forced to tell the truth would say at that hour, I could care less about besides, "Yes I'm fine" but I'm not forced to tell the truth so I wont mention it.
Hubby moves from my bedside to our dresser. Seriously I NEED to get that thing cleaned off!
Hubby walks along the edge of the dresser and makes it to the door frame, where he stands and mumbles something. I roll over.
About 3 feet from the door frame is an old family dry sink with glass jars displayed on it. (Who's ides was that?)
4 feet from the drysink is a counter chair. Our floors in the kitchen are tiled.
As Hubby makes his way around the counter a couple of feet he finds the fridge. Another item with glass pretties on the top.
From the sounds of it, Hubby uses the door as leverage.
Then Hubby must make his way back to his bed.

Once settled he realizes he needs to go to the bathroom.

Metal bar on chain, bedside table, my bed, talking. This time he has to walk the length of the end of my bed to get to a doorframe. Lights, squeaky door, shuffling, dozing off until I hear the squeaky drawer (what is he doing?), then the squeaky door, the aroma of my body spray, Hubby makes a stop to sit in the chair by the door and ask if I'm awake. I am, he might need me. More talking (I think, mostly I grunt uh huh and uh uh), the end of my bed, his bed table, his bar on the chain then silence. For all of 3 hrs IF I'm lucky. Then he repeats the processes!

Now I'm one that needs straight hours of sleep by 5 or more. Preferably 8.

This has been going on for the last 3 nights. I even had Hubby stay up ALL day on Friday hoping he would sleep Fri night but Noooo.
So here we are today, Saturday.
I'm tired.
Hubby was too because he decided to go to sleep this morning. I woke him for coffee and breakfast and took advantage of the beautiful weather to do a couple things outside close to the house. I also had my video monitor tucked in my shirt so I could hear him or see him :)
I came in for water and checked on Hubby and he had chose to go back to sleep and was snoring.
I wanted so much to shake his bed and yell GET UP!, but I didn't :/

When Hubby finally did get up early afternoon, he was in a great mood.
He was chatting up a storm. Laughing and carrying on with 2 of our grandsons.
I fussed at him for drinking his coffee lying down and spilling it all over the bed.
He told the boys he was in trouble and they laughed.
I stripped the sheets and remade the bed.
Hubby was sitting in a chair and announced,
"You know, I had a great time yesterday. I don't know what I did but I had a great time"
Hubby was pleased as punch and who was I to say he didn't even though I had no clue what he might have done. It's a positive and I'll take it.

A couple hours later everything changed.
Hubby realized he was having a problem and commented to me about it.
He didn't remember where he was or how he got here.
I spoke with him about this and he told me that he knew where he was earlier but not now.
I asked him if he was worried or scared. He said no but he knew it wasn't right.

I received some helpful suggestions from some of my Lewy Body FB friends.
I'll look into finding a way to bring some rest not only to Hubby but for myself.
Oh how I appreciate those waking this path of Dementia and their willingness to share ideas and suggestions.
It's so reassuring to know that we are not alone on this journey.


  1. O Kathy,thanks for your wonderful description of being awakened at night, coffee spilled on the bed, the grandkids' reaction!

    My dementia husband prays at night: "Thanks, LORD, for the good day. I know it was good" (although he can't be specific on why it was good!) and "help us get a good night of sleep".

    Ideas for sleep. Hmmm. I give my husband 6 mg of Melatonin at night. Can you just have a basket of a few snacks by the side of the bed for your husband so he doesn't have to go to the kitchen? Of course then he needs to remember they are there.


    1. Hi Carol,

      Melatonin was one of the suggestions I received. Along with Natural light bulbs. I'll be looking into it this week :)
      Good news is that we actually slept for 8 hrs last night WOOT!!!

      I already have several snacking items and beverages on Hubby's table. I guess he just needs to be in the kitchen so I make sure I have no raw foods he might ingest. I screw lids down tightly on jars (he can't open jars for some reason) and I also make sure I throw away anything that looks like it might turn green ;-)

      Thanks for checking in with us :)

  2. Kathy, I'm so sorry you're not getting any sleep! You have such patience and such love. It's terrific Hubby thought he had a great day (even if he didn't remember anything about it!). I'm hoping you got a little more sleep last night. You are not alone! I feel privileged to be sharing these moments with you.

    caregiving. family. advocacy.

    1. Hi Trish!

      Yes Hubby was so happy about his good day!
      There was NO way I was going to pop that bubble!

      Thank you for popping in to see us here :)

  3. You are a wonder Kathy! God bless you for being such a positive, upbeat person even on a few hours sleep! This definitely would not be me. I need 8 hours straight and often don't get them. My husband has parkinson's and dementia. He has not been labeled LBD but displays some of the behaviors of your husband.

    Love reading your posts. They are quite informative and helpful. I know exactly what you mean by wanting someone else to see the behaviors we live with each day. We're not looking for sympathy; we just want validation that it did happen.

    1. Hi :)

      Thank you for taking the time to follow along in the zig zag journey LOL.

      I'm glad you are able to find something useful in my posts and that they can also give you a reason to smile.
      Caregiving so be so overwhelming at times it's easy to lose focus on the anything good in it.

      You hit it right on the head in your sentence, "We're not looking for sympathy; we just want validation that it did happen." that is so true!

      Please continue to stay in touch as you can :)


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