Disclaimer

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, February 6, 2011

Sleep is over rated

Hubby has had several fairly confused days as of late. Staying up day and night with just cat naps.
He wanders around the house and gets lost. One night as we lie in bed I asked him if he needed to go to the bathroom, a through the day habit I have developed. He agreed then pointed to the bathroom door and asked, "Is the bathroom in there?"
After his return he settled back down in the bed and asked me "Where are we?" I explained we were in our home, in our room and in our bed. I stroked his head, it relaxes me, and Hubby accepted that information without question.

The next day brought it's own troubles , lots of sheets to change and more laundry. Hubby's personal care aide came but we could not get him to agree to let her give him a bed bath that day. Perhaps he felt like he already had one after getting cleaned up so many times.
Whatever his reason, sometimes it's best to just let sleeping Hubbys lie.

Later in the day Hubby was standing in the door way. Just standing there. I asked him if he needed something.
He replied, I don't know what I'm doing or what I need to do or how to get there.
Hubby was lost in a Lewy Body thought robbery. I suggest things that might trigger any straight thoughts,"Can I get your walker, are you hungry, do you need a drink, do you want to go back to the bed"...et al.  Usually it works and Hubby fixes on one thing that makes sense and  goes for it. This time was going back to his bed.
Watching him try and walk at times is frustrating. Walker suggestions and retrieval for show and tell help sometimes but many times my suggestions are met with silence or refusal.
Lewy Body is such a mean thing. Hubby is still inside so much of the time, he just can't get out and past Lewy's thugs. I can see him in there through his beautiful hazel eyes when he tries so hard to tell me something and he knows it's coming out wrong. It's heart wrenching.

Hubby's lesser sleep days all crashed in on him yesterday and Hubby slept all day. I woke him every few hrs to ask about the bathroom need and he rose long enough to eat the meals I prepared. But that was all.

Today we started out early. 4:20 AM. 

Actually 4AM as Niece was in the kitchen and dropped an item. Waking with the mental survey of what, who and deciding all was well slipped back into sleep in a matter of moments, so I guess it doesn't really count.

Hubby was fidgeting with his cell phone and the beep beep of the number pads woke me. I asked what he was doing and he told me he was trying to see how wet the bed was.
My non morning brain was able to decode this and I immediately removed myself from the area. (I checked myself for overflow, none, yay ) Hubby started rising and I started removing the blankets and sheets. Threw the top sheet and pillow cases in the machine, started the coffee pot and returned to find Hubby had slid down on his side of the bed with a death grip on his hand rail. His table bed table was leaning over and had wedged itself up on his knee. Hubby's neck was cricked up against the night stand and he was reaching out for me as I rounded the bed to see what assistance I could offer. I was finally able to remove the bed table to give Hubby a little more room to maneuver.
I have learned (the hard way) that physically helping Hubby most of the time is actually no help at all. My best course of action is to try and talk Hubby through the process of getting up even with a demonstration. This does take time to do and requires repetition in word and example but eventually, if he is able to process the information, we can do it. Even if it's in small segments.
By 5:10 Hubby was upright and a body survey revealed a couple of large scrape bruises on top of the already bruised side from a previous fall a week ago in the dining room. The good news, no broken bones :)

Hubby made his way to the bathroom without need of directions, the bed got changed, Hubby is cleaned up, laundry is going and the coffee is ready.

Let the day begin.

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