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.

Sunday, April 28, 2013

It's Obvious I am NOT a Dr...

...but here's my take on Lewy Body Dementia.

Lewy Body dementia is a degenerative brain disease that deposits alpha synuclein plaques, also known as LewyBodies, in various places in the brain that destroy neurons causing impairment in thinking & coordination which leads to a whole lot of other issues.

I've tried to educate others as to what lewy is and what lewy does through this blog, hand out and spoken word. Yet when someone starts talking medical to me, I get lost in the language SO I began explaining it in terms I could understand.

Hubby has Lewy Body dementia. It is the second most common form of dementia after Alzheimer. It is a brain disease that has symptoms that look like Parkinsons where he shakes a lot, and some symptoms that look like Alzheimers when he has memory and/or thinking problems. One of the differences in Alzheimers and Lewy Body are the fluctuations lewy can do. You might even think the person is faking a problem because they seem so "normal" one time, "off" the next time, and back to "normal. 

So, imagine a highway.

 In alz, when the plaques and tangles interrupt the brain neurons trying to make a connection, the connection shuts down like a road block of quick sand. The neuron says, "Well we can't get past that" and it stops trying and eventually dies.

With Lewy, when the neurons hit a road block it keeps backing up and ramming to get through. The "off" happens while the neuron frantically tries to find a way through or around the neuron road block (lewy plaque) until it either accomplishes a detoured route, (normal) or has used up all of the options. Once it has no other options, it then dies. Probably from sheer exhaustion :/

The lewy delusions and hallucinations are like a house of mirrors and glass. In Hubby's case, most of the time he knows he is in the house of mirrors. There is more than one of certain things, things like me most of the time. Other things are distorted and confusing but, since he knows, he tells himself it's distortion or asks. This is a place I get to be also. I can see him but I can't get to him. There are occasions when he can't make the distinction. Those are the times he becomes convinced of what he sees and is sure he has found the way out. When it turns out not, he becomes agitated and angry.

I can't stop the progression. We've applied all of the slowing down we can and now our tires are worn to threads. I can only learn how to try make Hubby's life easier for him. It's a delicate balance and a LOT of trial and error in meds and action.
As easy as it can be to take his negative attitude and actions personally I MUST remind myself to keep my own self in check. I get testy and pouty and annoyed. When verbally pushed, I verbally push back. I'm not the perfect caregiver but I love deep, even if some days I don't like,  I do the best I can. I try not to wallow in the negative but I can get overwhelmed. I can shut down but I always regroup, stand up and continue going. I laugh and surround myself with others that laugh. I limit negative from outside sources. I offer support the way I want to receive it. I try to care for myself. So far both Hubby and I are doing as best we can. I contribute that to the very many prayers I say throughout the day. Prayers for him and for me. It's my prescription for our happiness.
Even though I'm not a Dr, I think it's working.

Friday, April 26, 2013

False Hope

Lewy Body dementia is peculiar in that it comes with fluctuations in cognition.
Don't believe me, check out this lbda link they have all the technical/medical info about lewy and then some.

Hubby has had plenty of fluctuations in cognition. They can last anywhere from a few moments to days. He can go from completely confused that he is in his own house to describing how we built it and back to wondering where we are all in the span of a few moments, or over the course of a few hrs or days.
We've had a huge positive fluctuation over the course of several weeks.
Hubby had even seemed "better". His mobility and memory were improved greatly. He could carry on a detailed conversation. He was remembering things even I had forgotten. He was walking without the use of any assistance. Long distances at that. Long, as in from the car to the inside of a local eating establishment and back out. 
We had the occasional "blips" but nothing that wasn't quickly recovered from. 

then, the bottom fell out. 

In my heart I knew it would be coming because that's what Lewy does, it tricks you. 
It tricked Hubby. He was so aware that he was feeling better. He was convinced he WAS getting better. He commented on how good he was doing and that he thought he was "going to beat this". It was heartbreaking to hear him talk like that because I was staying poised for the decline and unable to REALLY enjoy the moments of clarity. But, the one day I let my guard down we ended up in a physical altercation in the car. 
The day started out fine. We made plans to go to town. I got him shaved, something he still wasn't able to do and he dressed himself. 
Once we got into town, Hubby became angry at me because he had decided he was feeling well enough that he wanted to move out and wanted to see a lawyer. I refused to take him. Instead I turned the car around and headed home. Our day out turned into a fight for the keys and steering while we were driving. We are blessed that we live in a very small town with very little traffic. My anxiety went into overdrive and the fight over the keys resulted in Hubby getting a scratch injury from the key ring. We've been through this type of behavior before but it's been about 3 yrs. And to be honest, it feels like we had gone back in time 3 yrs but I did not want to relive those 3 years again. 
Over the last few days we have skipped ahead. We are back to angry and hurtful words.  
I guess I'll take the reality as opposed to the false hope.

Sunday, April 7, 2013

Algo Para Pensar or Something to Think About

Today Hubby was watching a hispanic TV show.
That might not seem odd but neither of us speak spanish. :/
I couldn't understand anything that was said and could only pick out the times they laughed. Every now and then I recognized a word or two but the longer it was on, the more frustrated I felt and I wanted the channel changed.

This got me to thinking.
I wonder if this is how Hubby feels sometimes with language.
I wonder if this is what his world must be like when he can't understand what is happening around him or there is too much activity for his brain to sort out and respond to correctly.
It made me stop and think and I hope I remember this in the future when I find myself frustrated at him for not keeping up in a conversation or constantly asking huh.

Thursday, April 4, 2013


Look Ma, No Hands!!!!!!!!!!

It seemed that for a few weeks lewy had taken a break from the havoc it can wreck.
I'm not complaining at all!
To be honest I was a little afraid to mention it for fear the coasting would run into pot holes, or sink holes would open up under us!

Even though the last few weeks had been cognitively decent for Hubby they have also been filled with other emotional struggles. A family members illness and eventual death kept me torn between home for my loved one and away for my loved ones. We are blessed that youngest daughter was willing to stay with her father so I could lend support to others.
This family situation was not one I could keep from Hubby. I was concerned how Hubby would react to this distressing sad news. I was concerned how Hubby would react to my being away so often. I was concerned for our family and the painful journey they would be taking. I couldn't take away their pain, I could only be there for them when it was possible.
 I was concerned for youngest daughter taking care of her father. Not because I didn't think she could do it, she just graduated from CNA classes, but because Hubby is very needy.

Or at least that's how he is with me.

I  learned that while I was away Hubby became very independent.
Instead of asking youngest daughter to do anything, and she offered many times, he refused most of her assistance and did things on his own.
Things like turning on lights, getting his own beverages, finding snacks, changing the TV channels. Oh, there were the occasions he would mess the TV up and call youngest daughter to help, or needed muscle cream applied to his neck and back and would ask for her help then.
But mostly, he got up, walked around and did for himself.
Are you kidding me?!
I would have never known this had I not been told because as soon as I walked in the door, it was all "honey, do".
But now that I have this knowledge, what could I do with it?
I tried and eventually failed at getting Hubby to do some things for himself since then. He was good for a day or two and just stopped. Complaints of pain and general feelings of illness took control of Hubby's physical movements. His shaking has increased. Some times he looks like he's on the last step out of a fun house. You know, that moving floor you have to cross?
So that leaves me to wonder, Maybe I am Hubby's problem ;-)

Besides the shaking Hubby has developed another issue. He has started to drool.
Not a lot but enough to make sure he has a tissue close by and reminders to wipe his mouth. He says he isn't aware it's happening.

Hubby also took a HUGE positive fluctuation in memory.
He can recall MANY things that have occurred in the course of our lifetime together. Things I had forgotten my own self until reminded.
Minor things also as well as significant one.
Lewy Body Dementia is such a strange disease.

I wish I could really, really, just enjoy the positives.
I know we should live in the moment, enjoy the day, blah blah blah. Reality can have an ugly side. I keep waiting for the fall. I made a comment to a group the other day "Somewhere between diagnosis and death there is a whole lot of good living to be done. Why does it feel like we always try to skip to the end?"
Maybe I'm protecting my heart from hurting again when Hubby once again loses the memory of our life. I don't know.

Another change in Hubby is his interest in Gospel music. I'm not saying that's a bad thing LOL!! I find it odd because Hubby is a country music guy. In the past I have offered music of various kinds for him. He would always want it turned off. They say music soothes the savage beast. Well Lewy was having NO part of being soothed, until lately.
It just seemed to me that Hubby went against everything I learned about caregiving for someone with dementia. He didn't like routine, he didn't like music, he didn't like activity, he didn't like... insert all things "tried and true" by the professionals. Was I failing because of that? No, I just realized that is Hubby's dementia.
Like the saying, Once you meet one person with dementia, you've met one person. All uniquely different.

I'm keeping to myself these days. I'm staying focused in our world, maybe too much.
For now, we coast with hands off the bars and wind in our face.
Yet ever mindful that the handle bars must be grabbed to steady on.
I feel the front tire wobbling.

Here's some glimpses into our lewy life from FaceBook.
Feb 25 : Yesterday, Hubby wanted to have a talk with me. He motioned that I sit at the end of the bed and we had a very long conversation about. Because he thought it should. He didn't want me to. We did this. So I sat and listened and responded accordingly. And when he felt like we had talked enough, he was content with how it went.
Now you may be wondering what the heck I'm talking about, right? yeah, me too.
BUT apparently it ended well so that's all that matters. :)

March 17: The MOST annoying sound in the world? Candy Wrappers at 3AM!!! Not mentioning any names though >:/

 Youngest daughter asks her hubby to bring her ice cream tonight. They asked if Hubby and I wanted any. I politely declined and hubby accepted. Hubby kept asking me if I wanted some and after it arrived continued to still ask me. Several times I declined. A minute or so after receiving his, Hubby shuffled over to me and this time I was very quick to insist that I did not want any, seriously, I was fine and appreciated him wanting to share, but no thank you, in a firm tone. Then he said, I just wanted you to open it for me. Kind of rude that he didn't want to share! ;-) LOL!!!
Now he's feeding the dogs some with a spoon.

March 19: 
Hubby and I are getting ready to go into town. He's struggling but I'm helping. Doing simple things like that makes him shake much more and wears him out. He made a comment about his struggle and shaking. I said I believed that doing things like that requires more mental energy from him resulting in the difficulties.
He smiled and asked, "Are you trying to say I'm using my brain too much?"
My answer: "Yes and you're not used to it."
He swatted me! LOL!!!!!!

March 23:  Hubby, feeling his oats today, decided to sneak up on, grab and scare me. Not a good thing to do because in fight or flight mode, I fight. I hit him in self defense and nearly knocked him down. oopsie! LOL!! I better check him for black and blue marks later.

March 31:  Hubby shares EVERYTHING he gets to eat with the dogs. He will even chase them down with a spoon or fork full of something so they can have a bite and at times he will try to force feed them. Nothing I say seems to deter him. Not even a sick dog :P
Tonight is no exception, he's eating cake and ice cream and sharing. Deciding he needed more because the dogs were eating it all, I finally try to put down my foot about it and it worked, until I walked out of the room and he gave them the last bite. LOL!!

April 3: 
Tonight I am SOooooo glad we paid more to have DVR.
Hubby insisted that it was going to be 80 degrees tomorrow.
I tried to explain that it wouldn't be anywhere near it, only cold and rainy, yet he insisted all the more.
Fast thinking I grabbed the remote, hit the back button until the 5 day forecast showed up.
He pointed and said SEE?!
to which I said "That's an 80% chance of rain".
Hmmph, I showed him! Literally.
Worth every penny to be right! ;-)