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, February 26, 2010

Even the best layed plans...

I sat down here to go off on a tirade about how miserable my day was and how frustrated I felt. Enough so that at one point I wanted to throw up my hands and say fine, I quit!

The reality is that yes I am extremely frustrated but I don't intend to quiet.

Hubby and I made plans to attend a racecar show this weekend. Hubby loves the races. Or at least he did. There was a time in his life he used to drive dirt track. He was pretty good in his day and he enjoyed bragging about it. He even raced on the same track with a young and upcoming driver that surpassed him and went on to bigger and better things. Mr Mark Martin. A young "kid that could barely see over the wheel", Hubby would say. Even though Hubby and Mark never raced together, as they were in two different race classes, Hubby sure liked to talk about those days. A few years ago Marks Promo car passed through town on the back of a hauler and stopped at a local gas station. Hubby was there when it did and he had his picture taken beside the car. He is still proud of that picture and brings it to me to see every now and then. I miss that he doesn't talk about it anymore.

I like dirt track racing myself. There is nothing like the feeling of loud motors vibrating through your body or the taste of a heat lamp hamburger with ketchup and dust. That sounds terrible I know but I really love the races.

We also intended to double our pleasure, double our fun because we were going to see our grandchildren. We hadn't seen these since Christmas and I was so looking forward to spending some precious time with them.

Perhaps another day.

The plan was to take the 3 hr drive, spend the evening with our family, a night in a hotel and attend the car show tomorrow.
Our reason for going the day early was because it takes such a long time to get prepared to go anywhere. 2 hrs at the least and usually exhaustion sets in by the time Hubby is dressed, shaved, combed, fed  etc etc.
The show was going to start early in the day so that would have meant getting up extra early to accomplish those tasks and beginning the day hurried and have a very long ride.
I had a set time I wanted to leave that would allow us to arrive at our destination while still daylight. I do not like night driving. A hotel, for our convenience, could be found and we could get up and not rush to be at the show, be able to enjoy it and Hubby could sleep on the ride home.

Hurry is not a word used around here anymore. Oddly, I used to be the one ready right on the dot, Hubby was always reminding me of the time and trying to get me to rush. He never wanted to be late for anything. Now that time and space have no meaning for Hubby he moves at the slowest pace unaware. The more I attempt to hurry Hubby the more anxious he becomes. the more anxious he becomes the slower he gets. It's a no win so I try and allow all the time possible to do anything. Should I miss the 2 hr window even by 5 minsutes you can forget whatever plans were made. Hence, today.

I woke Hubby in plenty of time to prepare him something to eat and still have his good 2 hr window. 15 mins passed and still he would not get out of bed. 15 mins more I had passed and he went to the bathroom. YAY! I thought, a good sign. 15 mins later still no Hubby. I found him back in bed. Not a good sign. I asked Hubby if he was Ok. He seemed to take an extra long time to respond to my question and when he did he said "yeah". I reminded him we were supposed to go somewhere and we had a time we wanted to leave. He lay in the bed a long time with no movement or answer. I walked away and returned once more, 15 mins later, to ask if he was getting up, to which he said "You can go ahead and go if you want". Trying to reason with Lewy is impossible.

By then we had reached the 2 hr window. Anxiety high already I turned and walked away from Hubby. Apparently my anxiety found a way of escape through my eyes. Highly disappointed and frustrated I wanted to walk out the door get into my car and drive away.

Perhaps I should have gotten out and walked up and down the driveway but instead I filled my frustration, sadness and disappointment with food.

Hubby still sleeps and I have tried all day to come to grips with the hatefulness of Lewy. I want to yell at it and shake it hard but how do you make a dying brain understand? I have to learn to separate the disease from my Hubby. Sometimes a difficult thing to do as Hubby was able to get very stubborn and hateful without the help of Lewy. So once more I absorb the feelings.

I try to keep a smile journal. I wondered what I had to smile about today. Thanks to my daughter she was able to help me. She said, Well, at least he said you could go by yourself. We thought it was funny because in his health, he never wanted me to go anywhere by myself.

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