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.

Monday, June 14, 2010

Party Animals

If it wasn't for finding the humor in this Lewy Body situation I think I would be completely hospital bed ridden depressed.

We took what I believe will be our final trip anywhere, for any length of time. A 3 hr rd trip to celebrate our grandson's first birthday. I was SO excited and Hubby made the extra effort to be there. God Bless him!

We hadn't seen the kids since Christmas and other plans to see them have fallen through leaving me sad and frustrated. This time we made it but it was eventful. We also took Hubby's brother (BIL) who has Downs Syndrome. (His roll is important to this story also)

The first 2 hrs of the trip went well then the urgency of finding a bathroom hit. Of course it had to hit AFTER we passed a major gas station leaving me to try and find another.

The next exit found us in the middle of no where and no place to turn around on the expansive bridge over the water. Yes, WATER! EXACTLY what we needed to see and what my BIL wanted to talk about LOL!
I was able to do a U turn after I got off the bridge and go BACK over the water that again BIL wanted to talk about, to get us back on the main road.
A few miles and exceeded speed limit later a REST AREA Potty stop revealed a major problem with walking for Hubby. As if his brain wouldn't tell his right foot to catch up. Result, frozen, unsteady and extra slow.
Of course Hubby would have nothing to do with me suggesting I retrieve the wheelchair for him. He was determined to walk.

When we arrived at Daughter's home Hubby needed to use the bathroom immediately and then what seemed like every 15 mins. thereafter. The first trip required dry disposables so I whipped out my purse and WHA LA! Hubby was concerned about what to do with the soiled one but I had a plastic bag in there also and was able to tie it up inside and dispose of it in the trash.

Daughter, not seeing her father for 6 months, was surprised at just HOW much he had deteriorated. I actually speak to her about every day and she was aware but it's one of those seeing is understanding things. She was so overwhelmed she burst into tears. My poor baby :(
Son in law seemed to take the change hard also. I spread extra reassuring love all around. Tough job but necessary LOL! ;-)

We ate, had cake, opened gifts. (the gift i brought was the most liked - giggle) Whenever I wasn't making the potty run I snuggled and smooched everybody and breathed in as much grandbaby air as possible. BIL was waited on hand and foot so he was doing great ;-)

Hubby got lost a couple of times in the house. Twice he wandered into the kitchen, slow and unsteady, not sure what he was doing, once looking for a room, just didn't know which room. Hubby asked me about where all the doors went to and said no every time I told him. I finally asked if he was looking for the bathroom. The other time he wandered around and returned with a sandwich. LOL!

I helped Hubby settle on the couch and he needed a beverage. Our daughter went into the kitchen and I entered to retrieve the drink. As I was talking to our daughter who at that point was cleaning things up, I noticed Hubby's bottom teeth on the kitchen table.
She saw I had spied them and said very solemnly, "Yeah, I saw those"
I stared at the teeth and tilted my head as if  confused by them, gave her a wink and we BUSTED OUT laughing!!

I went into Hubby and asked him if he was having a difficult time eating without his teeth. To which he replied, his teeth were in his mouth and he flashed me a smile. Of course I stood there and asked, "Really? Even your bottom teeth?" To which he ran his tongue over his gums.

I shot a look to Daughter and again we Hooted and Hubby just smiled. Daughter handed me a baggie to put them in and Hubby decided he wanted the top ones out too so we put them in the baggie also. I put the baggie in my purse and announced I should be on Lets Make A Deal! Poor Son in law didn't know if he should laugh or cry.  LOL!

Preparing for departure we made a trip to the bathroom, said our final goodbyes, gave an extra squeeze to everybody and set off for home. We were all smiling.

I had the radio playing. Normally if Hubby is in the car it's on a OLD COUNTRY station since our musical tastes are so different. I'm a child of classic rock ;-)
BIL was buckled in the back seat and the song ELVIRA came on. I could hear BIL singing so I chimed in and we sang louder. Hubby got caught up in our fun and started clapping to the beat. Our ride home was fun. We made a stop for supper and as it was getting later in the day the normal nightly confusions and mobility issues coupled with what we had already experienced made the last hr of the trip a little uncomfortable but we made it. :)
The walking difficulty and freezing have continued. I wonder if they will now stay.

I feel so blessed to have had a good day. Lately they have been full of Hubby's anger towards me. His behavioral issues continue to plague us. I am still waking in the middle of the night to do laundry and mop floors.
I desperately needed a good day to trump those bad ones.

Giddy Up,
a  Oom Poppa, Omm Poppa, Mow Mow
Giddy Up,
a  Oom Poppa, Omm Poppa, Mow Mow
Heigh-ho Silver, away!


  1. God bless you Kathy. It's a tough road that we travel but we have the benefit of seeing the changes occur so that it's not so shocking for us as it is for our families.

    I'm happy that you had a good day, you surely could use a few good nights too!

  2. I just found your blog through someone following mine. My Dad has Lewy Body, its a hard thing you're doing and I hope you take care of yourself! check me out at cleaninghousebook.blogspot

  3. LOVE ELVIRA!!! I Love reading your blog!


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