Fat Lip, Big Mouth

The other morning Hubby woke with a fat lip.

It was quite a surprise because he hadn't fallen out of bed, nor was there anything that he could have hit in the night. But BAM! There it was as big as all get out. 

Hubby said he bit it in the night. I thought that he had his Lewy Body Dementia REM sleep disorder in full swing (pun intended) hitting his own face during a “fight”. 

I had even thought he might have had a stroke so I had him do the S.T.A.T. signs for me - 

Smile (looks weird but both sides are moving check), 

Talk to me (jumbled but understandable, check), 

Arms up (check), 

Tongue out (sticking straight out no down angle, I bet he enjoyed doing that, check) whew no signs of stroke.

Whatever it was, there was no denying something happened to him.

Perhaps this was a “payback” for the hateful way he's been treating me as of late. Not just privately but in the presence of others. And harsh enough to be scolded by Oldest and Youngest Daughter on 2 separate occasions. Accusations of theft, personal insults, his insistence of leaving and moving out on his own, driving, the list goes on and on so you get the point.

Yes, I know he can't help it and he can only react to the things his brain is convincing him of but for the last 4+ years I've been a 24/7 caregiver to Lewy Body Dementia, a year before that a watchful wife/caregiver, a few months before that a concerned wife, a couple months before that we were working on repairing a damaged marriage, 17 months before that I was fighting undeserved divorce proceedings, learning how to live alone and deepening my relationship with the Lord. A while before that Hubby had an ongoing affair that shattered our world and the 24 yrs before that I was a homemaker, mother and wife living with and buffering for Hubby's PTSD.

So, separating the man from the disease isn't always easy especially when I'm feeling emotionally beat down by his harsh and hurtful words. I've shook it off, walked away, run it out, and yet there are times that my feelings get hurt and I run my big mouth.

These deep feelings have kept me away from blogging. The deepest hurt is his insisting that Hubby wants to leave. He even wanted to look into placement.

I feel like I've tried so hard to keep things easy for Hubby, yet he continues to reject me.

I wrapped myself in prayer but admittedly I don't even know what I needed to pray for so I asked for a Spirit of calm to make the contacts necessary for Hubby.

Eventually I did receive that calm and leading to make the contacts and this was actually before the big melt down with my mouth, just needed to throw that in.

Wouldn't you know it though, when I told Hubby I had made the contact he changed his mind about leaving for placement. Imagine that! He is cognizant enough to understand what it means if he chooses to go into a Nursing Home. I told a friend I felt like I was on a hamster wheel because he doesn't want placement but still wants to live by himself. Squeak! Squeak ! Goes the hamster and the wheel.

Contact about placement was only for information. I wasn't sure what the process was or where or how to even start. The social worker at the VA was new so even she wasn't sure and referred us elsewhere, to another new person, who wasn't sure where we were even located on her map.

To my surprise none of our 3 local facilities were contracted through the VA. One never has, one sold so they don't and won't have a contract and one lost their contract due to issues. The SW didn't say why. Because I was almost in disbelief of the local facilities I actually visited the 3 places . She was correct and after walking into the one that lost their contract, if the greeting I received was any indication as to why, I could see! I would never want Hubby there!

The SW did give me the names of 3 facilities they did contract with that were the closest to us. But each one was at the least 45 miles away! She suggested I look on the Medicare.gov site to compare and research the 3 suggested facilities.

The first and closest one I looked up was an absolute No! No! No! A 2 and 3 star rating out of 5 and complaints on the medicare website was enough to dismiss that idea without ever seeing the facility for me. So Hubby has 2 choices if he chooses to go into a home closest to our location. The other 2 places were higher on the rating scale so if Hubby decides this is what he wants, we will be taking a trip to each one. This is breaking my heart apart in small pieces at a time.

I also had to ask questions that were hard for me to ask. How would it need to be paid for? Would I lose my home, would I need to find employment? Would placement nullify the guardianship?

I was assured that if Hubby chose placement nothing would change except his location. Being 100% Korean War era Service Connected Veteran qualified him to Nursing Home Care and if he decided he didn't like it, he was free to leave and come home. Nothing was permanent. That eased my mind a little.

It's been a few days since the melt down. Hubby has been in a nicer mood, for the most part. He still continues to need my presence even though her resents it. He won't ask others to do for him, just me. I'm heart tired and have neglected my own needs but this past week I'm trying to sort out what those needs are and working on them.

And to end on a good note, we FINALLY got the Home Health Aide hours straightened out and are once again receiving 10 hrs a week.  

Please continue to pray for us as we walk through this part of the Lewy Body journey.

Pillow Fight

I decided to call it a night .

It was 1 AM

Sleep finally hit me like a ton of bricks. I was happy to experience it.

Then during the night I experienced something else, a dull thud in my back.
I awoke with a jolt but an exhausted millisecond survey said no problems so I closed my eyes again.

Then another thud and a smack on my head. Again and again.
It didn't really hurt as a pain but it was uncomfortable and annoying and I knew at that moment I was under attack by the Lewy Body dream hoodlums that invade Hubby's sleep.
An agitating group that leaves Hubby thrashing, fighting and kicking while he sleeps. Often times yelling profanity or threats at them or unintelligible sounds followed by more hitting.
Hubby takes meds to alleviate this problem yet it persists. I suppose not to the degree it could be. 
The poor night table on Hubby's side has had it's share of abuse and we wont even mention the demise of a bed side lamp.

On a normal (giggle) night, or day or any time Hubby is asleep, which is pretty much most of the time, I get some kind of a warning that the fight will ensue following the verbal  barrage.
A jerk or mumblings or a loud yelp.
At which point, if I'm in bed, I crawl out of the bed into a safe zone. (Usually to the coffee pot and in my comp chair)
I have already learned to "run for cover" for fear of one too many knocks upside the head.

This time however, the warning, if any, was missed and I experienced a full rear assault to my back and head. Sleep, however, was trying to win out and keep me trapped so what else was I to do? I grabbed my second pillow I sleep on, and placed it around my head and between Hubby and me as a shield. I think at one time I may have "butted" Hubby back to his side of the bed.

Hubby must have felt victorious as he finally settled down and the assault stopped.

 WHEW!

I'll tell you, it is certainly an experience in self control to be woken by attack and not retaliate. ;-)

Sleep Disorder

Hubby had to wake me from a nightmare I had last night. I cried out loudly which started to wake me from the bad thing and Hubby was shaking me asking if I was OK. I seldom do that. Fortunately I do not remember what the nightmare was about and I knew it was just a dream so the thoughts of it do not bother me.

Now lewy Body dreams are an entirely different story.

Daytime sleep became more and more prevalent along with the fitful sleep. He has REM sleep behavior disorder or RBD.

WebMD describes it, but with more details, like this:

During REM sleep, rapid eye movements occur, breathing becomes irregular, blood pressure rises, and there is loss of muscle tone (paralysis). However, the brain is highly active, and the electrical activity recorded in the brain by EEG during REM sleep is similar to that recorded during wakefulness. REM sleep is usually associated with dreaming. REM sleep accounts for 20-25% of the sleep period.

In a person with REM sleep behavior disorder (RBD), the paralysis that normally occurs during REM sleep is incomplete or absent, allowing the person to "act out" his or her dreams. RBD is characterized by the acting out of dreams that are vivid, intense, and violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. 

I can't even begin to tell you how many times I've been grabbed like a vice grip, punched and smacked in the back or upside the head during my own peaceful sleep. Talk about a rude awakening! I shall admit publicly that there have been times I have been so roughly woken that my initial reaction was to hit back in anger, I just never have. Fortunately I have never been seriously injured even though I have actually had to physically remove him from me at times to prevent such injuries. The worst I have ever suffered is a smack mark or pinch mark. Of course Hubby doesn't always remember beating "me" up or he claims not to remember, what he does remember is that is was someone  or something else. So I remind him ;-)

I still continue to sleep in the same bed with Hubby. I have no intention of ever not doing that until it becomes a no other choice, so I have learned to use 2 pillows. One as a head protector. :) 

I have learned to sleep facing as far away from Hubby and have been able to realize when he starts having thrashing sleep. I then get out of the bed leaving him to take fits out on my pillows or his side table. Once he beat his table up so badly he broke his lamp and bent and lost his glasses to the floor under the bed. Glasses found, re shaped, new lamp purchased, wife "safe" all is well with the world again ;-)


Hubby has no control of his dreams and the worst part with Lewy is that sorting the dreams from the reality is difficult or impossible. I can only relate it to those dreams we all have at some time that seem so real and are difficult to shake off that morning or through the day. Eventually that happens, just less so with Lewy dreams.
So we live with Hubby's reality and assure him all is well, he is safe, cared for and most of all that he is loved. Reassurance, reassurance, reassurance. Did I mention reassurance?

To sleep or not to sleep, that is the question

Hubby has always been a restless sleeper. He has had restless legs for many, many years so it has always been difficult for him to remain still and sleep. That on top of his PTSD. I on the other hand, think insomnia sets in if I am awake longer than 5 mins from the time I lay down. He has always disliked that about me. ;-)

But lately Hubby sleeps most of the time.

Before Hubby's Lewy Body Diagnosis a full night sleep was rare. Up numerous times during the night then an early morning workaholic. Poor guy had NO idea what the word vacation was until he met me. So he was the GO GO GUY. Always wheeling and dealing. A head for business but not management so his brain was always churning out some thought or idea no matter what part of the day or night it was.

He has always slept 'fitfully'. Tossing and turning and thrashing.

Then time and space started having no meaning to him. He started sleeping in and sleeping longer and napping more during the day. He would get up in the night and just wander around the house.  Just wandering around. never doing anything but walking. Oh and eating. He would ALWAYS raid the refrigerator.

He would get his days confused and after a nap, wake and believe it was another day. He would talk about something that happened weeks ago and think it had just happened or talk about something that happened 5 mins ago and talk as though it was last week.

A good example is few short months after diagnosis we were watching a TV show. A couple hours later the news came on and they made reference to the show we watched. Hubby asked me “Wasn’t that the one we saw last night?” I replied that we had just watched it. He was pretty confused about it.

Daytime sleep became more and more prevalent. Sleeping in, sleeping later, sleeping late and now sleeping almost all the time.

As of today, 2 yrs into Hubby's diagnosis, on most days Hubby sleeps until supper time. There have been a few times I have prepared his supper, taken it to him, he has eaten and gone right back to sleep. Night time wandering has subsided some.

His neurologist has said that was ok if he felt like he needed to sleep. So sleep he does. I just wish he could rest. But that's a whole other blog.

When I finally go to bed I watch the television and stroke his hair while he sleeps. It soothes him and me.

For Better or Worse, in Sickness and in Health

Bobby and I have been married for 28 yrs.

We have a large age difference. He is 26 yrs older than I am.

At age 16 his parents signed for him to join the US Navy where he learned to be a gunners mate during the Korean War. Sadly that experience took it's toll on his mind and he has suffered with the effects of PTSD(Post Traumatic Stress Disorder) for very many years. I focused mainly on his anger issues although he had other problems too.

As a result emotional problems have been a regular part of his life. These problems have have taken their toll on many relationships he has had, relationships with spouses (I'm wife #4) children whom have a very detached with him, friends who are actually only acquaintances, jobs he couldn't keep working for others and then he found his nitch in life. CARS. A man with the gift for gab, an endearing personality and charm. He found that he was good, very good at selling used cars. He opened his own business and did this for many many years until his emotional problems caused him to be unable to continue. He closed his business. Such a sad sad day for him.

During our marriage he had been seen by a neuro about a shaking disorder. Nobody ever said definitely what it was.First they thought Parkinsons, then decided it was just an essential tremor then they weren't sure. So he lived with the shaking.

As I said we have dealt with his emotional problems our entire married life but over the last few years things started to take a turn for the worse. He separated from me Sept, 2005. 

 After our separation I had heard these very odd and out of character comments about him. He was thought to have started drinking (he doesn't drink) He was thought to have gotten into a fight due to his bruised and cut face and arms and broken glasses. (with his anger issue anyway it was possible)

After 17 mos we reconciled and he returned home March of 2007.

When we reunited and he returned 2 yrs ago we had such plans to honeymoon and travel. I quit the job
I had and it was going to be our time. The kids were all gone so with no ties we
were free. Oh I was so happy with the prospect of our lives together!

Then just a couple short months later, Lewy obviously crashed down like a hailstorm and there was no where for us to seek shelter.

I had noticed that he shaking was worse and he was having trouble walking and stumbling quite a bit. His speech and train of thought were 'off'. Substituting words, slow response. (Perhaps why he was thought to have been drinking).

He wrecked his truck twice, both times in our own yard.

We saw a neurologist in mid April and started on CARBIDOPA-LEVODOPA. It made him so sick he couldn't even get out of bed some days. He said would rather live with the shaking and I agreed.


Things didn't get better, if anything they got worse. He was "beating me up" at night (Dreaming and acting out) more than usual when he finally did sleep.  He started falling down for no reason. Around that time I took over the driving anytime we went someplace together.

A late Neurology appt  brought a different med for the shaking, CLONAZAPAM.

It was at this exact time my mother was diagnosed with Cancer and died less than 2 weeks later. Everything happened so fast. We had a house full of people coming and going and my attention was totally directed to my mother at that time so sadly I cast Bobby to the wayside. He appeared stable and stayed in his room all the time so that was to my advantage taking care of my mother.

Because of all the hurried activity I didn't tune in to Bobby. Always asking about the people in the house and when they were leaving. What day it was, what time it was etc etc

But after it was over and done and everybody and everything was gone within a few days it got crazy. Falling, forgetting, confused, time and space had no meaning, walking about 'lost', looking for people that weren't there...
I called the neuro and said HELP!

We weaned him off the Clonazepam and saw the Neurologist in August. The Dr said he was thinking one of 2 things. Multi System Atrophy OR Lewy body. At the appointment they did a resting /standing BP check and it was normal. After my research and taking that test into consideration I believed they would say LB.

They started him on GALANTAMINE to help with his confusion and thinking.
I was SOOO happy with this med I could kiss the makers. What a difference it made in his cognition at the time.

Then in Oct 2007 they gave him a diagnosis, Probable Diffuse Lewy Body.
I knew in my heart that would be what they said and yet it was like
someone stole all the breath from me when they did.

I don't know how he felt he has a stone face and he doesn't like to
talk about things. But it must be terrifying.

It felt like the end of the world as we knew it.

WAKE UP!! I think you fell asleep ;-)