Visual Learning about Lewy Body Dementia

It's been 2 years since my husband passed away and I still feel heart led to be actively involved in caregiver support.
I know this will be the first post anyone sees on this blog so I wanted to share this visual lesson I have given on Lewy Body Dementia. If you can understand this, you might understand Lewy and other dementias a little bit more.
This is also a hands on activity for you to do at home and share with others, so here goes

You need

Bubble wrap

Highlighter

This brain photo *Thank you to Stephen Holland at hiddentalents.org for his permission to use it.

Brain Functions

Print this picture out on a regular sheet of paper

Cut a piece of bubble wrap a little less than the size of the paper

Play with the bubble wrap while you're reading the brain functions, you know you want to pop some bubbles!

Turn the bubble wrap to the smooth side and use the highlighter to mark the popped bubbles.

Turn the bubble wrap back over and place it over the picture.

THIS represents the beta proteins of Lewy Body Dementia!

Lewy bodies are diffuse, meaning scattered or spread over a wide area, not concentrated. 

Notice what areas of the brain are under the highlighted bubbles.

Now fill the bubbles back up with air.

What do you mean you can't? Just do it!

You see, the bubbles are broken so the best you can do it try to patch them (meds) or in some cases if the bubbles air was only transferred you might be able to shift some of the air of another nearby bubble into the highlighted one. THAT represents the fluctuations of LBD, seems to decline, now a rebound.

But you realize that over time the air will eventually seep out and the bubble will no longer be inflated.

Lewy Body dementia is a total body issue, not just a memory one.

We give meds to alleviate some symptoms, it's the best we can do.

Even meds for other things might not have the same effects on their intended issues over time.

We're trying to MAKE a dying brain that can not, function normally. Sometimes we can force it for a while but the brain, the mainframe of the body is shutting down totally, the bubbles continue to pop and as of yet, can not be reversed or repaired.

I hope this visual helps you understand a little bit more about what is happening to our loved ones.

In the year 2009

I found a couple of videos I had from 2009 when Hubby was admitted for testing to rule out hydrocephalus. I knew I had written a couple of FB posts before I ever started blogging so I found them and thought I would share them both.

May 30, 2009

Anxious Heart

So are you ready for a blow away?

Since Oct of 2007 Hubby has had a diagnosis of Lewy Body Dementia. A combination of Parkinsons symptoms and Alzheimer symptoms. I've watched the other half of my heart decline for almost 2 years now. Some days at a very quick rate and some days unchanged. It has been a roller coaster ride for sure. These days he can't be left alone as he is a fall risk so I COMPLETELY understand what the expression "shut in" means. I'm grateful for this social network as here is as close as I get to spending any time with my family and friends and I can still feel a part of their lives.

Life may change though. Hubby had a Neurologist appointment last Thursday. They had the CT back from his head and it showed LARGE amounts of spinal fluid in his brain. Yeah, I know that doesn't sound good BUT they are going to admit him for a 3 day spinal tap and relieve the pressure from his ventricles and HOPE it makes a world of difference!! They could see an immediate change! Could it be that simple? It sounds almost too good to be true. Could he regain some of mobility and thinking back or has he had too much damage? My mind and heart are in a whirlwind with hope.

Then I have to think of all negatives also. If it helps enough, they will do brain surgery to insert a shunt and drain the spinal fluid. His age (72) comes into play here with brain surgery. IF he actually has Lewy Body plaques in his brain also, then we run the risk of an anesthesia catapult into a worse condition as lewy bodies and anesthesia are like bleach and ammonia mixed. Right now he is calm, not anxious, he feels safe and protected. Although I feel he is missing out on much of his life he is content where he is. Where will this procedure leave him and in what condition?

So many questions and more prayers asked as we are faced with possible life changing decisions. The biggest and hardest prayer is "Thy will be done". Following through with that though has been difficult as I find myself guarding my heart. I'm afraid to have him just to lose him yet again. I'm glad my Heavenly Father is my comforter and keeper of my soul. I could not make it without His hope and love. I look toward the day where there is no sadness or confusion. Just worship.

Wanted to share, keep us in your prayers.
Kathy

Jun 19, 2009

Home from the hospital

Current mood:disappointed

My Hubby just spent 4 days in the hospital ruling out Hydrocephalus.
He endured a spinal tap for 3 days in a row with very little to no change in his gait or cognition.
I endured 3 nights of being away from him as the V.A. would not let me stay with him.

My fear of him getting confused, anxious and wandering or falling, then the staff giving him meds to keep him calm tearfully spilled over onto the poor Dr. I was assured that they would NOT give him any meds other than what was in his chart for any reason. A little calmer I left and double checked personally with the head floor nurse (I don't think she was too happy with me) before I absolutely had to leave. Came home and crashed and returned the next day bright and early. He had a bed alarm on his arm so they knew if he ever got out of his bed for any reason.

The tap however was not successful so hydrocephalus was ruled out and a shunt surgery is not even in question. I suppose the only thing accomplished was that my poor Bobby got a headache and is a little grouchy. We are however back to the , Why can't I drive? phase. I'm not sure how long that will last.

So it looks like Lewy wins again. And I'm too tired to give it much thought today.

Just wanted you all to know how things went.

More Boys

Last night Hubby needed and asked for assistance with his bed covers.
As I was hovering over him he asked me if there were people in the house.
I answered no, there were not.
This question is common but it came with a different tone for Hubby.
He then stated that he hears a lot of background talking.
I stopped fussing with the blankets and assured him that nobody was here.
I reminded him that hearing voices was a symptom of his Lewy Body Dementia.
I also said that hearing voices or even seeing things like people or animals could happen.
Hubby didn't care for my explanation too much and scowled at me.
I fussed with the blankets some more and made sure Hubby was covered up and warm.
I suppose I was taking too long when Hubby announced that my doing that was bothering him for some reason. He didn't know why or what but it was really bothering him.
I think it was from the scowling.
I backed off and gave Hubby some space and a concerned smile.
The rest of the evening was calm.

Tonight Hubby called for me and when I entered the bedroom he was sitting on the side of my bed.
He had a look of confusion so I asked if he was ok.
His reply was no, yes, I think I just saw grandson.
Hubby asked me if the boys were here.
They are not.
Hubby was very convinced he saw one of them and I assured him that I believed he really did think he saw them and I explained again about his Lewy Body and its ability to make the brain believe something was there when it really wasn't.
Still obviously upset, I asked Hubby if he was okay?
His answer was that he was trying to get a snack from the kitchen but seeing the boy in the bedroom made him have to sit down and make sure of what he saw.
I asked Hubby if he was frightened by it.
He answered no, just confused.
I offered to get a snack for Hubby and he happily accepted.
I asked Hubby to always tell me if he sees something and has questions about it or is frightened by it.
He said he would and shuffled off to his bed.

Auditory hallucinations have been around for a while here.
Some visual but Hubby has always been able to shake them off as, that can't be real, or, tricks of the eyes.
Last night and tonight they had a very real presence to him.
I pray that I will always have the words to assure Hubby and make him happy with an offer of a snack.

Except for these incidents, things here have been fairly smooth and steady.
I like smooth and steady.
Hubby has been in good spirits and calm.
Little to no anxiety.
New pain meds seem to be helping with no serious or odd side effects.  A little more tired perhaps.
I have no complaints
And neither does Hubby
 WAIT-
On second thought, Hubby with no complaints? Maybe a few odd side effects but I can live with them ;-)

Anniversary ..of sorts

Oct 18 was our anniversary.
Not the wedding type, the diagnosis type.

4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.

At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS. 
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia. 
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.

You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.

Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.

I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<

So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.

That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.

One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.

My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)

A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.

Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.

I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!

Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.

The possibilities are many.

Should I feel bad that I feel good about this?
I'm conflicted.

Then there is the flip side.

I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.

Should I feel anxious about this?
I'm again conflicted.

So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!

Is this the party to whom I am not speaking?

I think I'm sick.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.

CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).

YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.

I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.

What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?

And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,

again.

I don't know if my heart could stand it.

This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.