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.

Friday, April 29, 2011

Remarkable Day

Lewy Body dementia is such an odd duck.
The fluctuations between good days and bad come without warning and stop as they please.
I suppose that's the reason many caregivers of Lewy Body consider it the roller coaster.

Take for instance; 2 weeks ago Hubby was down, completely down, physically, mentally and verbally.
But yesterday, 180 degrees.
For the past few days he has kept me on my toes trying to keep up with him.

He has wandered all through this house. Mainly to the kitchen and back to fill his desire to eat. Within a couple of hours Hubby is claiming hunger and makes another trip to the kitchen or asks me to retrieve something for him. I find this interesting because when I say to him, "Again?" He will respond with, "What do you mean, again?"
Hubby will have forgotten he had already eaten. I ask if he feels full but he claims he does not.
He even eats the oddest things. One day I found him leaned over the counter applying mayo to a piece of pepperjack cheese and eating it. ewwwww was my initial silent reaction after I figured out what he was doing. I stood there and watched him working tediously to get the mayo squeezed out of the container onto the cheese slice.
I chose to remain silent about his job and just let him be. He struggled due to the shaking he has, but he did it, and in a way, I was kind of proud that he did. Hubby looked up at me and I just smiled and walked away to finish my chore.

Hubby has been awake more than he has been asleep, that's very uncommon.
The confusion is still prevalent but when Hubby has 'good days' he forgets he has problems and his desire to move away and live alone resurfaces. I stopped arguing, for the most part when I remember not to get sucked in. Hard to do some times but I am better at it.

He has been more playful with niece and grandsons. One time, 3 yr old grandson was chattering away in his 3 yr old voice. Hubby, in a high pitched voice, leaned over to grandson and said " You have a squeaky voice!"
Not only did it scare grandson, it scared me! Grandson stared at his Pappaw and then fell to the floor like a possum playing dead! We laughed so hard! Good times!

Hubby was supposed to have a Neuro appt on Thursday. At the last minute they canceled on us. Hubby asked if we could go eat. I agreed it was a good idea to get out even though I was nervous about taking Hubby out due to past behaviors. Hubby was having such a good day that he walked all the way to the car without his walker or needing a ride in the wheelchair. Of course that sounds easier than it was but he did it.
Once we got to his favorite eating establishment we ran into a few of his old friends. He remembered them ALL!! I wasn't sure if I should have been happy he did or mad because he doesn't remember me LOL!

Just before we finished eating I could tell Hubby was beginning to experience some melt down but he wanted to visit another friend so we did that too and a third before we made it home. Hubby asked to go back home of his own accord and by that time he was pretty much slipping fast. We made it home without experiencing any distressful behaviors. Hubby needed the wheelchair ride back to the house from the car and went to bed. He has pretty much been wiped out ever since. Only waking when I bring him something to eat.


Sometimes I wonder if the weather has an effect on Hubby. We've had some severe weather pass through our state. We were blessed to have only had to deal with mostly rain. As tornadoes neared us they seemed to dissipate or pass around us. Others were not so fortunate in our state and throughout the US. My heart hurts for them as I have seen this type of devastation first hand. Many prayers for them as they try to piece whats left of their lives and belongings together.

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