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, September 10, 2010

Touch and Go

So it's been a couple of months I've been emotionally hiding out.
Not wanting to deal with things and  just making it one day at a time.

For a little while it was sure touch and go.
I wanted to touch Hubby's neck all the way around and not let go.
What a roller coaster ride we have been on.
Those sharp twists and turns are hard on a body, mind and heart.

Am I feeling better? No not really. I'm still making the most of the situation.
I retreated into myself to sort through emotions. Too many of them to sort through so I retreated away into an on line game where reality didn't enter. I wanted as far away from Lewy as I could get my mind.
Unfortunately, when Lewy invades your life, there is no escape.

As of late Hubby has take a down turn.
Mobility is becoming worse and worse.
A recent Dr appt allowed us to stop off at our favorite place for lunch.
Hubby insisted that he would walk in but it became very apparent that the task was going to be difficult to nearly impossible.
Yet he was determined for reasons not known to me. I can only speculate that because this is the place he frequented most. This was his stomping ground. This is where many of his friends and acquaintances congregated. This was his daily ritual no matter what the day held. If he was ever faithful it was to his beloved gathering of friends.

Upon entering the establishment, everyone in grasping reach became support. I finally made the announcement that if they were steady be prepared to be used as a hand hold. The owner offered assistance and just as we seated Hubby decided he needed to go to the bathroom. UGH! Up and across the floor we went.
"I have your walker in the car, let me get it"
"Are you sure? It would make this much easier"
Stare down so I backed off.
The last thing I wanted was another police incident.

I was able to help Hubby get into the bathroom and about the time the food arrived he was finished so I led him back to the table. Once again clutching everyone and everything in his path.
For some strange reason he doesn't walk. He falls forward into the closest thing to grab and takes one step forward and scoots the other foot up about half way or a little more. I have tried countless times to get him to walk one foot in front of the other or to actually get to an object before he grabs it. I continue to suggest this but my efforts are wasted. A walker is scarier than him walking on his own. He continues to push the walker instead of walking with it. I can picture him in a heap all tangled up in the walker like a cartoon.
How do I make him understand?

As we were sitting eating lunch a few people we know spoke to me. Polite conversation or just  a hello. What stuck out in my mind was NOBODY spoke to Hubby. He noticed it. How heart breaking. He was sitting right there. OK so maybe he can't carry on a conversation but you could at least say hello or mention the weather or pat him on the back. Anything to acknowledge him.

Incontinence is the norm and disposables have been the garment of choice for a while. Another I can't make him understand is, they do not need to be removed the moment you enter the bathroom door. I can't make him understand to wait until he reaches the toilet before removing his pants thus leaving a trail of cleaning to do. I have tried multiple types of cleaners for odor control. My choices are peroxide in a spray bottle to clean the tile floor and vinegar in the laundry. Odo Ban just for the smells good and fragrance plug ins.

2 times Hubby has cried. Now he has come face to face with his mortality and he is afraid. I just held him close and reminded him I was here to the end, whether he liked it or not. He wiped his eyes with a tissue I handed him, smiled at me and held me in his shaking arms.

I suppose on a good note, our down turn has resulted in less anger and hostility. I like that. The cost was high to get it though, and rising.

Eating has diminished some and weight has been lost in the last 2 weeks. Not much but enough to keep track of. Withing the last few days swallowing issues have developed. Pills have been put in pudding, broken crushed into a powder but his resistance to the taste or texture has left him without meds. It is here that I am unsure how to proceed. My head says get advice. My heart says leave him alone. This is his choice.  Now I wait for a call from the Neurology Nurse so my head wins out today. ( *UPDATE: Nurse called and sched appt for Oct, made notes for Dr and I'm going to follow my heart in keeping Hubby comfortable)

I don't like leaving these these posts on bad notes so I'm going to share a funny.
To some it may seem insensitive so if you are the overly sensative type stop reading here.

Our teen aged niece has chosen to to live with us for a year. I gave Niece every reason why she might not want to but she still chose to be here. What a blessing to have her. Niece has brought so much joy into my life lately and I almost forgot what it was like to laugh really hard with someone. We decided that home school was the best option for us, more for me and my convenience. Niece is very smart and has wanted to home school for a few years now. This was perfect. She has been doing well.
Home school gives us the option to be flexible so we took a short day today.

Tomorrow is Niece's15th birthday. We made plans to lunch for her birthday when the aide came.
When Aide arrived I gave her the rundown of my plans. Hubby said he wanted a bath so I informed Aide.

As I walked through the dining room I told Niece "Let's go kiddo" she rose from her chair and walked to the front door, following me.
I passed the door to tell Hubby goodbye and entered our room just off the kitchen.
Hubby clutching the bed rounded the foot of the bed headed toward the kitchen.
Upon seeing Hubby I quickly stepped into the bedroom and shut the door.
Hubby was not dressed!
Niece had been behind me but made a stop at the front door. I had blocked her view of any upsetting image. Explained to Hubby that Aide would be in shortly to bathe him. Kisse him goodbye and exited the room. Niece in a worried, shocked, disgusted, confused tone asked, "Was Uncle naked?! I replied, "Yes, he was". Then I looked at Niece, smiled really big and said, HAPPY BIRTHDAY! I got you a stripper!! ROFLOL!!!! ;-)


  1. Kathy, I have been thinking about you and Hubby a lot lately. Sorry to hear things have been so hard but am glad that you have your niece to be there with you.

    Hang in there and remember I am still here praying for you.


  2. Glad to see you're back even though things are steadily worsening. At least you have retained your sense of humor. Hang in there. I'm in the same boat, just a little behind you in dealing with some of the issues.


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