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!

Sunday, June 6, 2010

I did not... **

**some of this contains an adult topic

I  did not...

give you the disease that eats away at your brain and causes your problem

take away or have your drivers license taken away. I did encourage you not to drive and put yourself and others at risk.

steal your money.

run your friends off.

convince and entire medical community that you are sick.

make plans to keep you locked up at home.

hire people to keep watch over you, OK yes I did but not the reasons you think.

Behavioral issues are cropping up left and right anymore.
Hubby is so angry with the world and he blames me for all his problems.
Maybe because I'm just about the only one he sees besides his aide or the private pay lady I hired for twice a month.
He is so resentful of her that if he doesn't want to deal with them he stays in his room and avoids them
Believe me I am giving it all I can and then some to be sure and separate the man from the disease.
Sad part, Hubby has always had a hateful and angry streak about him so deciding where he and Lewy are joined has presented itself a challenge.
Hubby tries to engage me in a fairly normal argument. Feeling as though he has valid reasons for being upset for a very brief moment them slam the brakes on in the middle of his argument, never being able to get the words out. Talking in circles leaving me much of the time confused myself as I try to put together the bits and pieces that are actually related. All I know for sure is Hubby is angry.

The frustration for Hubby about his situation combined with the almost constant incontinence hasn't helped.
I have been up so many times at 3 AM do laundry and mopping floors.
Now I get woke at midnight or so to finish the never ending argument that never finishes.
Mostly of the time I remain calm and cool, just very tired. My frustration does seep out occasionally. 
The continuous tension has me wearing thin in places. Mostly my knees, as I pray a lot.

Just last night Hubby woke me at midnight to inform me he was dressing and leaving. He had business to take care of at the bank and he was getting his car (not even on the property) and he wasn't sure where he was going but he had to get things straightened out. I reminded him of the time and the day. He didn't care but did acknowledge that he would have to wait until Monday to go to the bank.

When I reminded him that he closed his bank account he denied ever doing it.
I was thinking, Hubby, don't you remember the police had to be called and all the financial problems we ran into?
The bank account is now in my name.
Hubby proceeded to put on his shirt. I remained calm and asked since he was dressing, if he would like to go out and get something to eat. IHOP is open 24 hrs. I was hoping for a distraction. He declined.

Good I didn't really want to get up and dressed anyway but I would have.

**Hubby came and sat next to me on the bed announcing that he knew I didn't really care about him.
I tried to be reassuring that I did love him and I was trying my hardest to keep him comfortable and safe. I wanted him to be able to enjoy his days. All of this fell on Lewys ears.

Again he insisted he knew I didn't care about him. When I asked why he felt that way he stared at me and said , you know.
 So I had to surmise that he was referring to our non sexual contact. Contact we have not had for 2 yrs. Contact that ended the night he rolled over on me and ask me what my name was.
That joke became my reality at a very intimate moment and it hurt, a lot. Still does.

I try to explain the dynamics of our relationship. The way it needs to be now. I suppose more for me than for him. I try to explain his health issues and medications that contributed to our dysfunction. Hubby makes childish faces at me and unintelligible mocking sounds. And he rolls his eyes. At that point I would have liked to roll them back to him.**

Hubby changes gears and declares I am stealing all his money. When asked why he thought that he said "Didn't you get new clothes?
Yes, I felt they were necessary since I've outgrown all my other ones and summer is upon us.

Now I'm a little annoyed.

Hubby's response "yeah right"
I try logic. (I KNOW I KNOW but I had to try) I had also bought him a new pair of sleep shorts. I thought he might like to wear them since the weather was warmer and he has taken to not even wearing clothes some days. Besides, I had spent more money on pull ups that he pulls off as soon as he walks into the bathroom door leaving me a wet mess to clean up and rugs and towels to wash.

When asked why he does that, Hubby says so they wont get wet. hmm :-/

Calmer now, The point is, Hubby, what I buy is a benefit for this house, our well being and your comfort.
Besides, now that I have to account for everything I spend to the courts I am a little more cautious about expenses.

Again Hubby stares at me. Rises from the bed and goes to the bathroom. This tine he doesn't pull the pull ups off too early. After a few mins Hubby emerges from the bathroom and all is well with the world again. He crawls into bed and sleeps. So do I.The time was almost 1:30 AM.

On an up note. Thanks to one of the members from the Online Spousal Support group I learned a little bit about an organization called Home Instead It's another home care agency that provides companion care as one of it's services. We have a meeting scheduled for Tuesday to see about getting Hubby a male companion to just take him to town and hang out with him. Maybe even take him fishing sometimes. Anything that will get him up and out I believe will do a world of wonder for Hubby. Or at least I want to believe it will.