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?

6 words, first word, 1 syllable, sounds like...

 LBDA explains dementia as a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Communication problems are a major problem when dealing with anyone with a dementia problem.
If you have ever tried to talk with a person with dementia you know what I mean.

With Lewy Body the problem seems even more frustrating when a very logical conversation is happening and it suddenly changes into the a jumbled mess of nonsense leaving both me and Hubby confused as I try to sort through what he was trying to say. Sometimes I'm pretty good at understanding his needs even if what he says doesn't match up. One way conversations are becoming the norm but I still try and talk to him about things. I know he is unable to make all major decisions but when we take a rare opportunity to eat out I still tell him what is on the menu and there are even times he can make a very simple decision by answering "no" to what he doesn't want.

On those rare eating out occasions I like to take him to his familiar restaurant. A place he visited daily to have coffee with friends and shoot the breeze. Every day 3PM for several years.  It is user friendly to Bobby and very attentive to our needs. Small and intimate, just what we require. Many of those friends are now deceased or have dropped out of his life for various reasons. But the restaurant is still a stomping ground he knows.

Our waitresses are patient with the length of time it takes us to decide things and finish eating. They never complain about how high maintenance we have become and they are rewarded for it.

Since communicating is so obviously difficult I have noticed that people talk to me when they want to know something about Hubby. I usually turn to Hubby, ask him if he heard what was said, repeat it in a simple but non childlike way then look back at the person. Not only have I noticed this at eating establishments but also the Dr offices, or when we run into people we know and I am not happy about it. I wish that people understood that Hubby is not invisible. He is still in there, locked in someplace. He just can't get out.

Hubby has lost so many "friends" (actual and so called) as mentioned. Death, fear, the opportunity to take advantage now gone, their own lives and hardships and many more reasons I am sure keep them away. This breaks my heart.

One of the more important things I wish to learn from this life experience it is that I want to be a better friend. I pray I do learn that, I pray I have been doing that even in my limited ability by reaching out to others in need, being an e-shoulder or an e-ear. I want to be the friend the Bible teaches me to be.

Proverbs 17:7(a) ; A friend loves at all times...

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.