I will gladly pay you Tuesday for a hamburger today

Hamburgers!! That's all Lewy wants to eat around here, oh and Malt O Meal.

Because of the shaking disorder associated with Lewy Body eating has become a chore and frustration for Hubby.
Finding finger foods he likes has been a little challenging for me but I'm very sure less of a challenge than him trying to eat from utensils. So he has settled on Malt o meal and hamburgers.

Why? That's a good question but all I can do is guess.

You see, Hubby has had several embarrassing moments with food. Falling down and dropping an entire plate of food at a family function once. He was pretty annoyed with himself and the fuss the family made over him.
Truth be told he gets pretty mad when anyone tries to help immediately.
He dropped an entire plate of food in a restaurant buffet line once. He was so mad at himself but I tried to assure him all was well and we would get another plate. We didn't stay very long after that.  Our eating out has dwindled to almost none unless we have a dr appt or he is having a SUPER DAY!

These days whenever we get that rare opportunity to eat out we ALWAYS go someplace we can be waited on and food brought to us. Including any salads or drinks

Because Lewy Body has many of the characteristics of Parkinsons he shakes. When he gets upset he seems to shake more but that might be anxiety. Eating from utensils is difficult so I try to avoid foods that will easily fall from a fork. But even foods spooned and pierced are shaken from the utensils. Cutting foods is especially difficult so I try and cut things before he ever gets his plate and should we be someplace public I discreetly try to cut for him as to preserve what independence and dignity he feels he has left. Many a time Hubby has refused to finish eating and left food on his plate just from sheer frustration.

Finding the line between helping and babying has been a challenge for me. He wants to be so independent and to a point I just let him. If it's walking a long distance without assistance (scares me so I follow with the wheelchair or walker I bring "Just in case you get tired" and he always does), closing a car door (several attempts), buckling a seatbelt, carrying a beverage (even if it spills) things of that nature.  All those seem like they would be easy tasks but to Lewy they are huge chores.  Once I notice frustration setting in I assist, suggest or find other ways to distract while I take care of the need. Stealing a kiss is a good distraction while I reach across and buckle a seatbelt and securely close the car door ;-)

So back to the hamburgers. With a hamburger, Hubby can hold it in his hands. He doesn't want anything on it but mustard and he mashes the bun flat on it. This prevents the bun from sliding off and he has control over the food getting to his mouth. With the Malt O Meal I can make it thin enough to drink from a straw. I purchased Hubby an over the bed table about a year ago. Hubby only eats in his room so this was the perfect purchase. Since the table is adjustable Hubby can raise it to the level he need to "drink" his Malt o Meal or eat his food. That position is usually right up to his face.

Over bed table 

There are other styles available but this particular one suited our needs.



I also purchased a travel mug . Short and squaty with a lid. The hole in the lid is just narrow enough to prevent the staw from easily falling out yet wide enough to be able to draw fluid through the straw adequately.

These items and actions are just a few of the things that help make Hubby feel independent still. As long as he can manage I say let him.

STOP THIEF!!

Lewy Body Dementia is a Thief:

Lewy is stealing what precious time I have with the one I love.
I believe it already stole 5yrs of my life and a huge chunk of my heart.
Every day a little bit more is missing. I can't stop it.
Oh how I wish I could.

I want my happy ever after but I know it won't come.
The best we can do is slow it down as it heads for the door. I grab hold and push with all my might just to wind up with skid marks on the floor as it departs into the eternal nothingness.
A vortex of swirling and confusion.

Lewy is stealing my Joy. Oh it thinks it's replacing it with humorous incidents and I won't notice the difference, but I do.

Lewy is stealing my passion. Most of the time my loved one has no idea who I am or what my relationship is to him. As such I find myself putting up emotional barriers and diverting most of his advances.

Lewy is stealing our precious memories. My loved one and I can't share the past and reminisce about our lives when time and space have no meaning.
So in the silence we sit.
The deafening, overbearing silence.

Lewy is stealing my space. How small my world is becoming knowing I can't leave my love one unattended.

Lewy is stealing my security. Now I must be the brave conqueror and protector.
My tag team partner is down for the count.

I hate Lewy. Lewy takes and gives back just to take again. Such a cruel heartless disease.

The only thing Lewy hasn't stolen is the love I have for my loved one.
Lewy can not take that away from me. I love this man beyond reason.
I hope and pray that  if Lewy succeeds in stealing all the memories from the brain of my loved one, the memory of my love is reminded daily by God to his heart.

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.

Lewy Body's Trying Days

Jan 7: Hubby and I were talking about how cold it is and will get. I appreciate cuddling under covers together. :-)

Jan 8: Have to pull a rabbit out of a hat for this daily smile. Hubby slept ALL day and only woke long enough to eat supper and go back to sleep. Happy that hubby had a restful and calm day. :-)

Lewy Body has this very mean way of fluctuating.

Jan 9: The last few days, except one, have been very trying here as Hubby has been "busy" going through ever shred of paper and drawer and clothing item and dish and photo (of course never putting back) in this house.
I THINK he is looking for anything he recognizes.
When asked what he'slooking for he just says looking.
His turn around in cognition has me whirling.

Last night if I didn't know there was a problem with Hubby I would never suspect one, other than the occasional brain farts we all get.

Hubby is convinced that there is nothing wrong with him and that he should be able to come and go as he pleases.
Our BIGGEST hurdle is driving. He hasn't driven in 2 yrs and as of today his car has a flat so it isn't operational and I will NOT help him repair it. That makes me the horrible mean hateful (w)itch that takes care of him only to steal his money! According to him I have him on a short rope and am trying to keep him chained at this house! I told him I would drive him all over the country if he wanted but he could and should not drive. I reminded him that I have asked numerous times for some of his friends to come and get him and take him out for the day or coffee. He agreed I had done that but nobody has ever come :-(

The Neurologist said at Hubby's last visit that was the best he had ever seen Hubby in a long time. Hubby took that as a getting better. Asked about driving the Dr said he didn't believe Hubby could get his license renewed. Hubby ignored that.

I told Hubby that with a diagnosis of dementia I did not believe that legally he would be able to drive.
He said I would not be able to find a lawyer to declare him incompetent and I told him I didn't need a lawyer, just his medical records and a judge if he thought we needed to push the issue to keep him and others safe. Although I would never really want to do that to him.

Hubby sure knows how to push a few buttons and I allowed myself to get engaged in a discussion that became heated and wound up with me in tears all because of the driving.

Then, I had the clarity moment and busted out laughing.
Hubby wanted to know what I was laughing about and I said "Because I'm all upset and trying to have a logical discussion with you and you may not even remember it in the morning and I'll be the only one upset still."

Hubby then decided he was moving out. I asked how he was going to take care of himself. He couldn't even shave himself with an electric shaver, how was he going to live alone?
He decided to show me and went off to shave. He returned to me quite a while later smelling of shaving lotion and said he couldn't finish. I calmly got up and said lets go take care of it and we did.

Wrapping my brain around this HUGE bounce back is very difficult. I wonder how long it will last.

Later Hubby was sitting on the edge of the bed and just fell off. No reason just kerplop.
He took a hard hit to his elbow and arm. I did the normal, move everything and check for damage.
All looks well but I bet Hubby is sore today.
Another oddity was that he just hopped up off the floor like nobody's business.

When I finally went to bed Hubby asked me if I was going to watch TV, I answered
yes. Hubby reached over, took my hand and held it as he fell asleep :-)

A day in Lewy Life

I have really enjoyed the reasons to smile list and I know some are trying to make their own.
BUT I have really struggled some days to find the smiles. I know that what is posted makes things sound so easy. Honestly finding something amongst the struggles we are faced with every day can be a tad overwhelming and there are times I just don't want to look for anything good. So I decided to share a recent day and then what I chose to concentrate on.

Hubby sleeps most of the time. He is usually up towards the late afternoon and as the night wears on he becomes more confused about things. The last few days he has been very busy going through everything. I kid you not about everything, looking in and pulling things out of every drawer and cabinet. I have asked him numerous times what he was looking for and he just says he is looking. I think he is looking for anything he may recognize as his or have some memory of. Of course what he takes out NEVER gets put back by him. It gets frustrating seeing him sit in the middle of the floor pulling out all the clothes from the drawers and rifling through papers knowing I am the one to pick them up.

On one night in particular he ran across the car title to his green car. Last year I renewed the tag although he hasn't driven in almost 2 yrs now. It expires in May and he came to me with title in hand and asked about the license. I explained the tags were still good he left the room. He returned again about the tags. Once again I explained. He did this over and over and over and the final time he came and handed me the title and said in a huffy tone, Well this says 1994. At which point I threw my "Good Wife" crown, banged and re bent my scepter and wanted to choke someone with the frayed sash and said in a gruffly annoyed tone, THAT'S THE YEAR THE CAR WAS MADE!! He looked at me suspiciously and left the room.

Deciding that there was nothing to smile about for this day I retreated to play Zelda and save the monkeys. On the way I let the baby kittens in the house. Seeing the kittens he then shuffled into the kitchen and watched them play for a little while then went to the dining room and started going through the books and pottery and dishes (I could hear) then I heard a THUD!! I rushed to the room to find him lying on his back as he had taken a tumble in the floor. As the norm for falling I survey for visible damage and make sure all limbs are movable. Then I wait for him to decide when he can get up. I have learned not to try and physically help as he can not understand the process and the result would be both of us getting injured.

As he lay there one of the baby kittens rounded the corner and walked over to him and stared at him. He in turn looked at the kitten and said, "It's a good thing you weren't under me". I started laughing and he smiled. He finally got up and I re checked for damage then we went to bed. That was close to 11 PM.

My status for that was: WHEW Barely got this in. Jan 4: Hubby enjoys watching the baby kittens play. I let them come inside so he can see and interact with them. I enjoy seeing his gentle nature with them. :-)

So perhaps the reason for sharing this was to show you that no matter what situation you may find yourself burdened or overwhelmed by keep looking, seeking. The positive is always somewhere. It wont always be funny, it may just be knowing a friend said they were praying for you or a stranger did something considerate.

This is my resolution for the year. "Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."