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.

Wednesday, November 9, 2011

Day 1

Just a manic Monday for us.
I got Hubby all packed the night before his respite day.
Added the few misc items and zipped his suit case on Mon morning.

We discussed the weather and coat/jacket options.

I brought him his coffee and breakfast as I made sure that BIL was getting ready for school. While they ate I dressed.
I was always the last minute gal for getting ready. We were never late for anything but I was always a right on time person. I didn't allow for delays, just always optimistic there would be none and we would arrive on time.
Hubby was the complete opposite. He was the early bird.
He constantly reminded me of the time.
The time it was, the time we had left and the time we needed to be anyplace.
This always annoyed me.
Now our tables have changed.
I'm the allow for everything gal. I give Hubby a 2 hr window to get ready to go anywhere. BIL needs the same amount of time.
Now I'm the keep everyone moving and be early gal.

An extraordinary feat in the mornings also ;-)

This particular day BIL school bus wasn't making the morning run so he would be a drop off.
Grandson had left his blanket from the day before and daycare would never forgive me if it wasn't returned to him so errand #2 was on the list.
Dog out, loaded the suitcase, the Hubby, the BIL, and tried to remain as calm and collected as possible fearing another refusal to go was looming somewhere in the Lewy atmosphere.

3 miles down the road, remember the weather conversation? Yeah, me too. I had to turn around and get the forgotten jacket for Hubby.
 Pulled in the driveway, jumped out of the car, opened the front door and the dog ran in.
Chased down the dog and booted her out. Back in the car with jacket in hand and away we went for our 70 mile trip to respite , after 2 errands. No turning back now. I had decided anything else forgotten would be purchased on the way.

Once we arrived we were directed to 3 different places the third being the proper one. (Third times a charm)
We were greeted by friendly staff and seated for intake which was more than 2 hrs.
I had the opportunity to educate a couple of the staff about Lewy Body Dementia. I had also printed off laypersons pamphlets and left it with the Nurse asking her to share with the staff.
She had only heard of Lewy Body but was not familiar with it.
I felt confident that she would read it, I want to believe she did.

Hubby was anxious about everything that was signed. He was double assured about every paper.
Once he implied I was just going to leave him there for good.
Bless his heart I know he had to be scared.

At one point he became angry with me because he had more money than the facility wanted him to have on hand. I offered to bring it home and he told the intake Nurse, "She just wants all my money so she can spend it".
The intake Nurse was kind and tried to explain that Hubby really didn't need that much on hand and I was only trying to help. Hubby was angry and threw his money on the table toward me. I gave some back and promised to put the rest up for him to have when he returned home.
I assured him over and over that I would return on Monday.

Lunch came and they seated him in a small dining room.
I helped him with his tray, and while doing so, 2 of the residents decided to get into an argument with each other.
They were yelling and pushing each other then the staff started yelling.
I wanted to look over at them all, point a finger and sternly tell them that we were company and they needed to mind their manners and shut their mouths! But I didn't, I continued to help Hubby.
Another resident sitting close to Hubby told me not to worry "We'll take good care of him"
I smiled and thanked him.
He then told Hubby that it was better than BootCamp. Hubby laughed.

I kissed Hubby, assured him I would be back Monday and reminded him I loved him.
Walking away seemed like the hardest thing ever.
He will be gone for a week.

I cried that night. I did not sleep well.
I keep looking for him and listening for him.

The next morning I called to check on him. They said he had an anxious night but over all he did fine.

That refreshed me a little to hear. The nurse I spoke with said Hubby was still sleeping and I assured her that was Hubby's normal. 

Tuesday night was still difficult but less so.

My first day I was able to enjoy a leisurely lunch with my sister in law.
We did a little window shopping and didn't watch the clock. 
We laughed and it was like old times.
I had fun.

The night ended and there are no angry words or harsh feelings.
The night ended and I missed Hubby instead of wanting to find a place to hide from him.
The night ended and I trust he was in good hands.


  1. Good for you. A successful first time respite. I REALLY hope you enjoy more to come. Love Linda

  2. Yay for respite! So happy to hear that you have had a chance to decompress and have some fun.


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