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, February 27, 2011

I See the Light

Hubby asks.
I look through the bathroom door into the bedroom as I gather clothes for the washing machine.
"Come here and help me with this lamp."
I ask Hubby if he wants it off and he answers yes.
I set the dirty clothes down on the top of the hamper and step into the room.
I move Hubby's over the bed table to reach the lamp and touch it.

The light goes off.

I look at Hubby and smile making sure this is what he wanted.
Hubby looks at me with the 'I can't believe it was so easy' expression and laugh, smiling back.

Hubby and I laugh together.
I hold his face and give him a kiss.
I say "I love you."
Hubby says
"I love you too."

It's a great moment.

Saturday, February 26, 2011


I'm only doing this because I need a vent about Lewy Body Dementia.
I have found that through blogging I have a way to release my feelings and it becomes a way of self help. Keeping my thoughts and feelings sorted. Allowing me to re read them and realize things are not as bad as they appeared at the time.
I am not looking for sympathy or a pat on the back.
I just want to vent.
As I stated in the writing of this blog, this is the life Hubby and I share and these are my thoughts and feelings.

I've tired at the downcast posts I feel like I've written lately. I want something uplifting to share.
Today won't be that day though.

I'm tired. When I do not get my allotted hrs of straight sleep I'm grumpy.
Today I am grumpy.
I blame Lewy for this and not Hubby. And Yes, I do differentiate between the two.
I don't like Lewy but I love Hubby.

Lewy was up ALL night! Wandering the house, clutching everything to keep himself up righted.
Rattling the dresser, disrupting my nightstand and banging the bed. Scooting the kitchen chairs and clinking utensils and dishes forging for food. Then the trip back with items in shaking hand.
Unfortunately the items were liquid and he spilled it on the bed causing me a quick jump up and blanket removal while I realized I was walking in  the stream of liquid on the floor. Chocolate Yoohoo, YOOHOO!!

You are right in your thoughts, the bright side to that is it was only yoohoo.

It started with the wipe out from last Saturday. What a great day that was for Hubby. The trade off for it is very high and seems to be rising.
Lewy started taking over. Sleeping more and extra mobility problems. Then last night serious confusion, as if regular confusion isn't enough.
How do I explain that? Regular confusion is just wondering and OK with the answers. Serious confusion is completely lost with a concentrated expression on everything. Did that make sense?

This morning Lewy is still awake and wandering in search of more food.  It doesn't matter that he already had breakfast served, he forgot, and he wants to eat again so I prepare him something else. While he waits he stares. He stares into the other room and again that concentrated expression comes across his face. Lewy asks me who is here. I name all of the House Occupants.
Lewy wonders because the man in the other room looks like he is looking for someone.
The man is just standing there looking as if searching a crowd of people.
Of course I do not see a man so I once again name the people in the house and assure Lewy that we are the only ones here.
Lewy accepts this answer with suspicion but accepts non the less.

I feel the necessity to inform House Occupants of the condition of Lewy today.
Hallucinations are one of the core features of Lewy Body Dementia.
Not wanting House Occupants to be upset by this behavior I calmly explain what may need to be expected throughout the day and if face to face with it how they should react to Lewy.
House occupants are as understanding as they know how and agree to not get frightened by the confusion and respond as I wish.

Lewy retreats to his room to lay down.
I follow to whine and complain about him in my blog.
Lewy decided he wants to sleep.
Hmmm I think I will need to vacuum this room.
Sorry for the disruption Lewy.
Take it up with your friends if you have a problem with it.

Wednesday, February 23, 2011

Afraid to Fly

I keep reminding myself that last Saturday, was a GREAT day!

I need to keep reminding myself because,
ever since then, Hubby has been wiped out.
Physically and mentally.

Hubby has been sleeping a lot more. He sleeps all the time so how can that seem possible?
I have to wake him to eat and use the bathroom but there are times he wont even budge to do those.

When he has been awake he has been in a huffy mood. I'm not sure why but I remain calm and agree with him about whatever.
1: He will forget what he said,
2: He can't walk far to go anyplace if he talks about leaving,
3: He isn't hurting himself or me
4: He thinks I'm a pretty good ol gal for taking his side, especially against that mean woman that has him locked up here (yep, that's me)

I win all the way around :)

Conversation is NILL and what conversation that there is, is completely off the wall or barely coherent.
Last night Hubby became upset with the fact that the people driving the airplane weren't keeping it steady while he tried to get up and walk to the bathroom.
This revelation came after a few earlier questions about
how did we get on the airplane
when did we get an airplane.
He was serious in all of these remarks.

My replies, I thought you were afraid to fly. All 3 times.
Hubby never acknowledged my response and I didn't have to argue that we weren't and didn't, trying to prove I was right.
Smooth flying for me; I love to fly ;-)

I just hate that these times of conversation are fading faster and faster.
Trying to piece together the ramblings into something understandable is a challenge to my own mind.
My heart is holding up well. I'm dwelling on the good things.
Even when Hubby's feelings of doom and mentions of not being here much longer are the topic of the moment.
I just look at him and tell him,
"You can't"
He asks why
I tell him "You better stick around at least until that new baby gets here. "
He always smiles and his hazel eyes shine.

Sunday, February 20, 2011

Showering the Baby

I've taken a couple three of days off from internet activity to concentrate on hosting a Baby Shower for My Baby!
Hubby and I are getting ready to welcome grand(son)child #6  and we are SO excited. OK I am so excited but Hubby and I are one so We is I and He is We, you get the idea.
I don't think Hubby fully understands and if he does it's hard for me to recognize it.

Hubby had a downhill turn for a couple of weeks. We dealt with things as they came and didn't come. To be honest I wasn't sure how the Party day would go with Hubby's decline. I know that lots of extra activity confuses him more than usual.  Hubby has a very difficult time processing too much commotion and it throws him like throwing water in a working toaster. It starts to short circuit and spark.

I offered to host the event because getting away from here with Hubby seems to be a mighty big challenge these days. Bringing the party to us was the better choice, Or so I prayed :)
I busied myself preparing for the event, Sister in law, Bless her heart, offered me transportation to shop for needed supplies while Aide was here. Niece was placed on the decorating committee. Poor Niece had to endure the craziness that is known as "Aunt is expecting company get your butt out of bed and help!" Yeah, it gets a little tense and drill sergeant-ish, just ask our Children. They will attest and can tell stories, on second thought, don't ask them ;-)

I love that I serve a Great Big God and that as my Father he hears my smallest pleas (please). Let us have a good day. We did. Not only was it a good day I would almost consider it a GREAT day for Hubby.

A cooperative and low maintenance Hubby for a day. No extra laundry, confusion didn't seem off the wall and not stressful for Hubby. Walking was much improved, slow and at times, upright and upright is something! Hubby walked into the room closest to us as we congregated for the festivities. I prepared him a plate of goodies and he seemed to enjoy them. After we snacked Hubby joined us to watch while games were played and gifts were opened. Although he wasn't an active participant, he was a present observer.
(Hubby even let me talk him into wearing pajama pants with his robe )

Snacks, gifts, games, pictures and lively conversation didn't phase Hubby in a negative way. God is GOOD!
Kathy, Hubby and Beautiful Baby with baby <3

So today Hubby sleeps. It looks and sounds like a restful sleep :)
He woke a few times to go to the bathroom and have breakfast. Supper brought him MUCH confusion as he didn't understand why we needed to eat at that hour. I like to eat at any hour as my picture shows! LOL
I realized looking at that I HAVE to take control of ME and get my head and heart on the same page working together for me. I count for something, why have I been so neglectful?

Today I catch up on a couple of days of internet fun but it feels like I've been gone for a long time. The internet highway is sure fast and you can get passed by and be left behind!!

I've branched out a little bit on my blogging.
Here, I have met a few caregivers. I love the support we can offer each other in our responses.
Caregivers are a uniquely and intricately woven group of people. Like a cord, alone can be torn in two but braided and banded together, strong yet flexible enough to keep each other supported during the times of caregiving hardships and, celebrate with during times of caregiving triumphs and moments of joy.

I've started to Tweet.
I know, you may think I've gone cuckoo but I decided to give Twitter a run.
I have a lot to learn yet on Twitter but I am hoping that I can use it as a tool to educate others about Lewy Body Dementia and help another Caregiver that, like I, searched for something, anything to help them through this often scary, confusing, lonely and isolating life known as caregiving.
I've learned so much about Lewy and Caregiving yet still have so much to learn about it.
I just want to share and encourage.

Friday, February 18, 2011

Our Groundhog Day

I made this comment to another Caregiver friend...

Life with Lewy (Lewy Body Dementia) is ever changing.
Just when you think , Hey, I got this! Lewy changes the rules hmmph!

Just tonight I ran into a situation that was new for me.

Hubby and I had a lady friend that passed away last Dec.
Another friend had stopped in to see us and inform us. He spoke to Hubby but at the time Hubby didn’t know who he was. Friend was pretty upset by it.

Hubby and I talked about the passing of lady friend afterward and Hubby seemed to understand.
Like I said, that was Dec.

Tonight, Hubby asked about our lady friend.

Now for the last 2 weeks Hubby has been on the downhill slide, tonight we were somewhere in the middle.

I mentioned that she has passed away and that friend came and told us.
Hubby was very upset. He had not remembered so the feelings were new to him.
It was very sad.

I hope this is not something that Hubby must relive over and over again.

I wasn’t sure how to deal with it so instead of insisting that he already knew and it was a couple of months ago, I just sympathized with him and we talked about her for a while.

Even though the moment was sad, for a brief moment, my husband was visiting with me and that was what I chose to focus on.

Wednesday, February 16, 2011

Gentle Reminders

It's been an emotionally tough day today for a vast many reasons.

Hubby for the last couple of weeks has been on a downhill slide.
Mobility coming and going at the drop of a hat.
Lots of extra wheelchair rides
LOTS of extra confusion.

But we are gettin through.

My post wont be long, I know, faint, right?

Tonight as I was attending to Hubby he looked up at me and asked me.
"Am I supposed to remember you?"
I answered calmly and matter of factly
"Yes, I am your wife, I am Kathy, and I take care of you.
And if it helps, You love me."

Hubby smiled at me and gave me a kiss.

Hey, I'm just delivering the facts ;-)

Saturday, February 12, 2011

Me and My Shadow

What a taxing week we have had, Hubby and I.

It's been one of those weeks where Hubby has been and more confused and lost and falling down more.
This is how our journey has felt.

Hubby lost his map. Insistent that he knows what he's doing he finds himself going in circles and taking wrong turns in the house. Not one to ask for directions he departs for places unknown in search of the familiar.
In doing so Hubby has been stranded in the floor several times with his flat tire.
I have found myself having to get him jacked back up and towed back to safety.
My emotional clunker putters us down life's highway spitting and sputtering at every bump in the dementia road has many days left me out of gas praying for the strength to push us onward. And Onward we go.

I don't know the reason I chose to write a traveling metaphor. It made me smile though, so there it is :)

I bought myself a small piece of freedom :)
When Hubby needed 24 hr care I purchased myself an audio monitor.
I was however rather disappointed in my choices I had. I just wanted a non descript audio monitor so Hubby could call to me if he needed me. All I found were baby monitors with soothing sounds and night lights. I felt a little put out by that. Hubby isn't a baby, OK, granted he can act like one at times and that was even before his Lewy Body Diagnosis. And I can act like one at times but we didn't need soothing lullabies and cutesy lights.
Other types were like walkie talkies, hubby would have needed to understand HOW to use one and with Lewy, learning a new task is so difficult when retaining old memories for tasks are fading anyway.
Price was another factor. SO much money seems to be involved in caring for a person with dementia.

I chose the least cutsey model available with dual receivers. I could walk around the house and outside a few feet and still be able to hear Hubby if he called.
Lewy's progression began to steal Hubby's ability to call out. there were times I would hear thuds and hurriedly go to check on Hubby only to find him lying on the floor as if he was supposed to be there.

At other times I have walked into the room and found Hubby had slumped from his sitting position I had left him in, into an awkward and uncomfortable position that required assistance. Not hearing an alerting sound when that  happened I was unaware of Hubby's situation until I found him because he wouldn't call out for me. There had been no telling how long Hubby had been like that.

One of my biggest fears is that Hubby will get sick and run a fever or that he will fall and break a bone. The latter prompted me to move my computer into our bedroom so I could stay with him and he wouldn't feel so alone and I could keep an eye on him.
Now not only did I feel like I could  not go anywhere without Hubby having a person to be with him, I was afraid to even move around my own home. Little by little my "house arrest" had me putting up bars for confinement. Little by little I began to feel the restricting grasp of dementia's throat hold. I do not like that feeling.

A series of life ups and downs found us without an aide for a month and a choice that I made in an effort to help someone left me even more confined and dependent on others. Add to that the cold snowy weather restrictions; and well maybe you understand  what I'm saying

So what about the freedom?
Ahhhh I have learned to do a LOT of on line shopping. Looking the internet over and over for the latest bargains, decoding the coupons and deciding if they are actual bargains or not. I have many of  daily supplies sent to me from places like Alice.com. I order many food related items from Schwans.com. I am learning more about the advantages of Amazon.com and it was there that I found that little piece of freedom.

Amazon had a daily deal on a video monitor

I bought it and fell in love with it.
Now I feel like my 'bars' are gone and I get to wear an 'ankle bracelet'
I feel comfortable enough to go watch a movie in the living room with Niece, or even go outside. I can now see if Hubby gets up or how long he has been out of camera range. I am so very satisfied with it!

There are a couple of drawbacks though.

One being that Hubby is used to me being there. When he wakes and I am not, he feels the need to come looking for me. This may be the reason for the more frequent falling.
It's a live picture. I need to remember that others can see it if I don't keep it discreet. I say this because Hubby only likes to wear his pull ups, socks and a house coat. There are times he will enter the room from the adjoining bathroom without them. Who knows what kind of show I may be watching on some days!

Wednesday, February 9, 2011

We all fall down

We have had our fair share of unsteadiness for the last couple 3 days!
Before then, Hubby took a downward turn in cognition but had some 'busy and awake' days.
Those days followed by a sleep crash. Waking only when reminded to use the bathroom or to eat.

Besides the downturn in cognition Hubby has had mobility problems. We've had to retrieve the wheelchair on 2 separate occasions for transport.
On one occasion Hubby made it to the kitchen but on his way back he froze up and was unable to walk. I tried holding him and guiding him but he never could understand that he needed to move his feet.
The other occasion and on a separate day Hubby was able to walk into the kitchen to retrieve a can of chips and toddle back into the bedroom, but through the door was as far as he got before he froze.
Unsteadiness accompanied Hubby and while I was busy in the kitchen, Hubby lost balance and fell forward onto out bed using his hands and arms to support himself as he bridged the distance of 3 feet. I walked in to find Hubby clutching the can of chips and keeping himself supported.
I was able to upright Hubby and balance him long enough to slide the wheelchair under him and get him moved to safety.

I fear we may lose our walking abilities sooner than I anticipated if we continue on this course.
I have made a couple of extra efforts in providing the safest and easiest way for Hubby to rise from his sleeping position but even doing that has proved futile.
For the 3rd time, in as many days, I have found him lying on the floor wedged beside his bed.

I think the most frustrating to me is that the falls are always when I have stepped out of the room.
I purposely moved my computer desk and household bookkeeping into our room so Hubby would not feel so alone upon waking. I practically live in there with him, so afraid he will fall and get injured.
Feeling a little 'captive' I bought myself a camera and monitor. A nice little gem so I can keep an eye on Hubby if I need to step outside or out of the range of  site or hearing. Yet he ALWAYS manages to fall when I am no where around!

Gentle coaxing and demonstration is usually the key to getting Hubby to understand what he needs to do to get up from the floor.
Even at 2 AM when he fell last night. I jolted up so suddenly I made myself sick. Poor Hubby, I got the gait belt and used it as a pull coaxer for the direction I needed Hubby to move and un-wedged and moved him enough to support himself leaned against the bed. Hubby looked up at me as I apologized through the huffing and puffing i was doing. I told him I was sorry for having to tug and pull on him. Hubby's reply. "We have to do alot of that. I may get pulled in two."
He smiled

I did too

Then I excused myself from the task so I could sit down and let my heart and stomach settle and cry for a min.
I don't do that often, maybe I should.

After I was able to get Hubby up righted we tried to walk into the bathroom. His walking ability has declined so much so quickly it seems. He can't move his feet. The best he has done for a while is just about drag one foot. No he hasn't had any type of stroke. He has just lost the ability to know how to use it. His legs want to move and he can 'spring ' up and down a little but moving the feet is a whole other feat. (I just made myself smile so I'm keeping the word LOL)

I'm very tired. I've written and re written this about 4 times already. I tried so hard to give it a positive tone.
But the reality of this day is I can't.
Hubby rests now.
And I have things to do.

It will get better. I will adjust and re group and trudge forward and smile.
That's what I do and I seem to do it well.
Just not today.

Sunday, February 6, 2011

Sleep is over rated

Hubby has had several fairly confused days as of late. Staying up day and night with just cat naps.
He wanders around the house and gets lost. One night as we lie in bed I asked him if he needed to go to the bathroom, a through the day habit I have developed. He agreed then pointed to the bathroom door and asked, "Is the bathroom in there?"
After his return he settled back down in the bed and asked me "Where are we?" I explained we were in our home, in our room and in our bed. I stroked his head, it relaxes me, and Hubby accepted that information without question.

The next day brought it's own troubles , lots of sheets to change and more laundry. Hubby's personal care aide came but we could not get him to agree to let her give him a bed bath that day. Perhaps he felt like he already had one after getting cleaned up so many times.
Whatever his reason, sometimes it's best to just let sleeping Hubbys lie.

Later in the day Hubby was standing in the door way. Just standing there. I asked him if he needed something.
He replied, I don't know what I'm doing or what I need to do or how to get there.
Hubby was lost in a Lewy Body thought robbery. I suggest things that might trigger any straight thoughts,"Can I get your walker, are you hungry, do you need a drink, do you want to go back to the bed"...et al.  Usually it works and Hubby fixes on one thing that makes sense and  goes for it. This time was going back to his bed.
Watching him try and walk at times is frustrating. Walker suggestions and retrieval for show and tell help sometimes but many times my suggestions are met with silence or refusal.
Lewy Body is such a mean thing. Hubby is still inside so much of the time, he just can't get out and past Lewy's thugs. I can see him in there through his beautiful hazel eyes when he tries so hard to tell me something and he knows it's coming out wrong. It's heart wrenching.

Hubby's lesser sleep days all crashed in on him yesterday and Hubby slept all day. I woke him every few hrs to ask about the bathroom need and he rose long enough to eat the meals I prepared. But that was all.

Today we started out early. 4:20 AM. 

Actually 4AM as Niece was in the kitchen and dropped an item. Waking with the mental survey of what, who and deciding all was well slipped back into sleep in a matter of moments, so I guess it doesn't really count.

Hubby was fidgeting with his cell phone and the beep beep of the number pads woke me. I asked what he was doing and he told me he was trying to see how wet the bed was.
My non morning brain was able to decode this and I immediately removed myself from the area. (I checked myself for overflow, none, yay ) Hubby started rising and I started removing the blankets and sheets. Threw the top sheet and pillow cases in the machine, started the coffee pot and returned to find Hubby had slid down on his side of the bed with a death grip on his hand rail. His table bed table was leaning over and had wedged itself up on his knee. Hubby's neck was cricked up against the night stand and he was reaching out for me as I rounded the bed to see what assistance I could offer. I was finally able to remove the bed table to give Hubby a little more room to maneuver.
I have learned (the hard way) that physically helping Hubby most of the time is actually no help at all. My best course of action is to try and talk Hubby through the process of getting up even with a demonstration. This does take time to do and requires repetition in word and example but eventually, if he is able to process the information, we can do it. Even if it's in small segments.
By 5:10 Hubby was upright and a body survey revealed a couple of large scrape bruises on top of the already bruised side from a previous fall a week ago in the dining room. The good news, no broken bones :)

Hubby made his way to the bathroom without need of directions, the bed got changed, Hubby is cleaned up, laundry is going and the coffee is ready.

Let the day begin.