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, June 14, 2011

Me And My Lewy Body Shadow

I was so tired from lack of adequate sleep I went to bed before 10:30 PM one night only to be waken shortly after midnight by a tap on my leg. Hubby was laying in an odd position at the end of the bed and couldn't get himself switched around.
Not immediately aware he was stuck there I asked if he was OK. He said he was, but that he had a big mess on his side of the bed. I got up and walked around to survey the problem and sure enough, a pool of ranch dressing, a whole bottle of it, poured all over the floor, all over the side of the bed. sigh

Hands and knees I cleaned it up, sputtering to myself and about the situation. Then I realized, I was grateful for the exercise mats I bought and placed on Hubby's side of the bed for messes and easy clean up. Then I went back to sputtering.

By the time I got it all cleaned up  I was wide awake and decided to watch a few netflix shows. Another sleepless night.
Side note, Netflix has been a wonderful addition to our lives since we don't have the ability to get up and go to the movies or run down to the local video store.

Morning brought it's own sputtering moments that were associated with coffee and breakfast orders but we got through them.

Aide arrived and while Hubby was getting cleaned up I overheard him talking to Aide about the house.
Hubby doesn't believe he is in his own house. He actually made me laugh when he told aide she wasn't going to fool him into thinking it was.

Perhaps the lack of sleep caught up with me in another way because I've been sick for the last few days. Actually sick enough to have slept for about 2 of them.
Poor Hubby has had to make due with what I was able to drag to him or what he could forage for himself, which hasn't been much. Good thing for snack foods.

I'm feeling a little better today but still not quite well enough for me.
I have learned a few things while ill.

One of those is when people were talking to me theirs speech sounded all garbled and I couldn't understand what they were saying. My brain chose not to assemble the words into coherent sentences leaving me to stare blankly trying to sort it all out. I actually could not finish a conversation with my daughter because I couldn't concentrate on what was being said. It was terribly frustrating.
I wondered if this was the same thing that is happening to Hubby?

And even though today is better for me, Hubby still continues to have communication problems.
He can't hear me or understand my words. He has said some off the wall comments.
He wanted to know if the UPS man brought a box of green tomatoes (Hubby's fav)
Then he wanted to know if I was going to call State Farm to see if they had any green tomatoes.
Uh, No and No Hubby but if I'm feeling up to it tomorrow I will go to the local fruit stand and see if I can find some for you.

Another thing I learned is that Hubby sleeps the majority of the time EXCEPT when I am sleeping or not in the room.
I have come to realize that as long as I am seated at my desk where when he opens his eyes he can see me, he will sleep. BUT if I'm out of the room for any reason and he wakes, he comes looking for me. The other day I had stepped outside and he didn't know where I was. When I came in I could tell by looking at him that something was wrong. I asked if he was OK.
He wasn't angry or scared but had a concerned tone and he said "I just didn't know where you were."

Then I realized that while I sleep, he was up more, wandering the house.
Most of the time I just woke up when he got up to notice him gone but at other times there was evidence of him being up (dishes, trash scattered around, etc).

I worry about him wandering around since he is a fall risk. He's already taken enough falls without serious injury but I wonder just how many more he can take. I really don't want to know, but I can't keep him chained down. 2 falls in the last 2 weeks and today I just noticed that one of those times he had fallen and broken our bathroom scale.
Actually I have been saying it has been broken for quite  awhile now but that's a whole other story.

And just today I woke much later than normal. Hubby was already up and out of bed and was wearing his cap.
I asked if he was going outside to which he answered he already had been.
Apparently he HAD been outside to try and ride his bicycle.
He pushed it off the porch across the drive onto the grass but realized he couldn't do it so left it there and came back into the house. All the while I WAS SLEEPING!!

Our son, who was here, watched his father and told me of the struggle that Hubby had in his short lived effort.

Hubby also told me that he knows there is no way he can ride his bike.
I sympathized with him and left it at that.

But I wonder. Will I need alarms on my doors now to alert me?
When we cared for Hubby's mother we had to have them as she was always trying to get away. She would fight you to get away. Hubby isn't like that. Although he doesn't really believe that this is his house and he is always talking about moving, he has never tried to get away. So I don't believe his outside experience was an attempt to escape but more an attempt to do something he thought he could, like, ride a bike. I just wish he would let me know when he wants to try things. His independent spirit is very strong though so I doubt he would let me know.
It's hard to know where the line is when dealing with the independence of a person with dementia. Especially when their safety is priority.
My prayer is to maintain the balance between Hubby's independence along with his dignity and pride. It is very important to me and I struggle terribly in this area.What feels easier and safer to me may not be what Hubby needs.
Hubby may not remember me, or the house or how to ride a bicycle.
And perhaps 'Hubby' himself is gone but 'the man' is still there, somewhere trapped in Lewy's world.

1 comment:

  1. I KNOW the exhaustion you feel. It's tiring to care day in and day out on minimal sleep.

    Having my mom in a facility is making it easier. I am sleeping at night. I visit her everyday. She enjoys having people around. Our visits are pleasant... I bring her coffee and ice cream.

    I never thought I'd place her in a home, but sure glad I did.


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