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, February 19, 2010

Where he stops, nobody knows....

For the last few days, when he hasn't been asleep, Hubby has had some great physical days.
He even tried sneaking up on  me yesterday to spook me, but I popped his balloon when I looked at him as he rounded the corner.
"You knew I was coming." Hubby said.
I responded "Yes, I heard you walking"
So he decided if he couldn't scare me he would touch me with a cold coke. brrrr

Mentally though, has been another story. Of course Hubby doesn't think there are any problems.

As we prepared to go to the Dr the other day, Hubby was dressing himself. As I have said before I always give the once over or help when he asks or when I realize he is getting frustrated. From our big mirror, I could see Hubby in the bathroom with a can of deodorant. He seemed to be struggling with the can and eventually turned it upside down and sprayed it in a random direction. My original thought was he thinks it's stopped up. He sprayed it again when I realized he didn't know what to do with it.

I walked into the bathroom and offered to help. Hubby handed me the can and said he couldn't do it. I told him it may have been stopped up so he wouldn't feel like I was taking over even though I was. I rinsed the top and told him I thought I had it fixed so he should raise his arms so I could see. Hubby told me I needed to turn it upside down to make it work. I didn't say anything just sprayed it on Hubby then combed his hair and helped with his shirt..

Yesterday, Hubby's Home Health Nurse came out for her visit. While she was here she was able to talk to Hubby and commented how well he was doing. When She asked how he was he raised up and blurted out "I'm doing wonderful!"
 At that moment I would have even believed he was.

Early in the day I would have wondered when he tried so hard to tell me something but could never get the words out.
As he sat in the chair the digital picture frame kept distracting him. Finally he told me he couldn’t remember what he was going to say because “That thing made me forget” 
Then a little while later Hubby tried talking to me but never could remember what he wanted to say, forgetting the words he was searching for and then repeating “I need to remember so I can remember, No...” I need to remember so I can remember...” shaking his head he just sat quietly in the chair.

What a difference a few hrs can make in Lewy.

That brings me to today.

Hubby woke early and was prepared for his Aide. He just wanted lotion on his extremely dry skin. Normally when Hubby finishes with his aide he is exhausted and lays down to sleep but this day Hubby walked out of his room dressed. I was very surprised as was his aide. I asked Hubby if he had plans but he just looked at me and turned to walk away to his room. After the aide left I again asked Hubby if there was something he wanted to do today. He told me he thought so but wanted to lay down for a minute. I told Hubby I would get prepared in case he wanted to do something later I would be ready.

I redressed and started working on face and hair Hubby decided he needed help with his shirt buttons. After I buttoned those I reminded him he needed a shave so I shaved and combed his hair for him then finished myself.

Sure enough he was ready to go after a little while so away we went but I had no idea where we were going. I had a 6 min drive trying to get an answer but Hubby couldn't tell me where he wanted me to go. Being it was close to lunch perhaps he wanted to go eat but that wasn't it. We drove through town and passed a barbershop. It was then he knew that he wanted to get his hair cut. Mission accomplished.

Then we decided to have lunch so away we went again. I read the specials to Hubby but he couldn't decide so instead told me to order what ever I wanted him to have. I know he loves fried catfish so I ordered that for him offering him choices that seemed more like my decisions.

"You would rather have french fries instead of onion rings, right?"
" You want a salad with Ranch dressing, don't you?"
I think in doing that he still feels like he can have some say so in his food choices. '
One of my biggest fears is making him feel like a child. Yes it would be easier for me to do and request everything but maintaining his dignity is vital for me. I try so hard to do things in such a non obvious way that I'm usually exhausted by the time we leave.

Sliding a tissue across the table and quietly and quickly alerting Hubby to his running nose.
Preventing food from falling off the plate by pushing other dishes up against his to block.
Offering to have the waitress bring us a bigger bowl for salad because "They filled this one so high I can barely eat out of it.
I have decided to ask for "To Go' cups with lids for us, in case we want to take our drinks home. We almost had a major spill from a regular glass today.

I think our worse moment was when Hubby barely made it to the Ladies room, as the Mens room was occupied. Any port in a storm as the saying goes.

More than an hour from our arrival  we left our favorite eating establishment and headed out again. I asked Hubby where he wanted to go but he had no thoughts or ideas. I suggested a friends business so he agreed. They all know Hubby well and understand his problems so I felt secure in letting him go visit  without my assistance. He sat in the car with me for a good 10 mins before he ever went inside.

Upon his return I decided we should visit his sister so we headed there for a visit. We never stay long as Hubby is always ready  to leave as soon as we get there. I don't understand it. I like visiting Sister.

When we arrived, Sister always tries to help but Hubby had gotten grumpy when she did so and insited he could do it on his own. Sister let him be and she and I walked behind Hubby as he entered the house.
Sister has a bathroom in her washroom where we had just

As we left Hubby was unstable enough he required and asked for my help in walking. I took his hand and once again Sister tried to help but Hubby wanted no part of it. We all 3 walked very slowly to the car. By the time Hubby got in he was exhausted and I could tell getting a little more confused.

After the short 4 mile trip home and Hubby struggled to get inside the house but determined to do it, I left him but watched.  He came in and undressed.

I checked e mail and entered a few contests, by the way I won a $5 Gift Card from Sears, Hubby came in to sit with me. He was watching the digital picture frame when he said he didn't understand.
I asked him what he didn't understand and he said "That woman. I can't remember she's related to you. I know her but I can't remember her being your mother."

Once again we had the conversation about my deceased mother. I was finally able to understand that he thought a deceased friend of his was related to us. He also thought the friend was related to my mother but my mother wasn't related to me. What a confusing night! I don't think he ever got the thing straightened out.

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