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.

Thursday, January 26, 2012

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
On second thought, Hubby with no complaints? Maybe a few odd side effects but I can live with them ;-)

Friday, January 20, 2012

This is all about me.

I'm a caregiver statistic.
I eat poorly,
I haven't seen a medical Dr in 5yrs maybe more,
I don't exercise regularly,
I put my own self care last or completely ignore it until it screams for attention,
I was 4 yrs before I used any respite time that the VA had available. 

I do not suffer from depression, and I try to avoid it in all forms, but I do have some anxiety at times. Especially when significant and sudden downturns come.

I can tell I'm a little snappier in my responses to others.

My mental health is hanging on. For now.
My physical health is another story.

I'm a terrible self motivator.
Just take one look at me and my house and you will see that.

I've tried the home exercise and home hair cuts and home cooked meals.
I use my stability ball as a seat, I think I can rock a pony tail and since I found Schwans home delivered food, well, need I say more there?

I feel bad when I can't stay on course for myself.
I feel bad when I wish for more time away from Hubby so I could do some things I want.
I have learned the value of time. It is a precious commodity when it's in short supply for yourself.
As a 24/7 caregiver all the time is Hubby's except the 8 1/2 weekly hrs I get through the V.A. for an aide.
in this 8 1/2 hrs errands must be run groceries must be purchased, travel to and from must be included and where we live its a 20 min trip one way to our largest store, etc etc. I must find a way to fit in all the things I HAVE to do and still find some time for me in there. Occasionally I get a lunch with a family member or friend. Hurriedly of course but I still do it. Think about the expression, Eat and Run :)

Now this all sounds mighty whiny of me. But that isn't my intent here.
I am very blessed to have this time.
I know what it's like to have none, especially when the VA doesn't renew Hubbys Aide service for a month! breathe in, exhale slowly ahh

Available family have filled in for important things and run errands if I ask, so again, I appreciate the knowledge I can call when I have to.

But I don't like being a statistic. It's happening though and I can tell.
I thought of all the ways I could prevent it. I started doing small things, walking/jogging in the driveway.
A dual trip to the eye dr, Hubby was there so I squeezed in too.
Much needed dental work. (Remember the neglected self care and screaming, almost losing a front tooth due to neglect is a screaming issue ).
And just the other day, after much consideration and serious thought, lots of praying, mostly consisting of please let me find a way!, Weighing all the odds and planning the timing more than once, it occurred to me, I can start working out again! The gym I was once a member of had relocated several months ago. Their new location is ideal for me and my errand needs. Grocery store, drugstore and place to get my oil changed all within a stones throw! I am SO EXCITED!
Today was my first day back in 4 yrs! I was able to get my workout in AND pop in at the grocery store (right next door) with time enough to get home and not feel like I was running through myself :) it was a glorious feeling.
A funny thing happened at the store, I grabbed a cart, made a quick run through produce, went up the soup aisle rounded a corner and BAM wobbly legs got me and my knees buckled. LOL! I didn't fall down and was able to upright myself in plenty of, save myself from embarrassment, time. Good thing for shopping carts! I thought it was funny and I can't wait to get back to my workout Mon!

Now if a hairdresser would move in close by...

Sunday, January 15, 2012


Conversations around here can be hilarious at times.
Our struggle can range anywhere from unfinished sentences to incorporating parts of other conversations in the present ones.
For instance, when I passed by Hubby's bed, I reached over to get a small blanket and he flinched saying he thought I was going to touch him with my cold hands.
I assured him "I'll give you advanced warning before I do that".
Then I asked him what he wanted for lunch and went down the list, one at a time, of yea or nays.
No, was the word of the day and when I got to hamburger he said , "I need advanced warning".
After a moment to process this, I took this as a no and offered PB&J, it was yes.  
I wonder if he doesn't like my hamburgers. Hmm LOL!!!

Friday, January 6, 2012

Blub blub blub

Day 6 in the new year and I we are holding our own.
Hubby seems more content, less agitated. These are VERY good things.
Yet, I keep waiting for the jack in the box to jump out and scare me.

The Holidays came and went with little fanfare.
We kept it simple in many ways while still enjoying our family.
Hubby even participated in the family Christmas Eve gathering this time :)

New Years Eve came and I was a day behind wondering why everyone was celebrating early.
Half of the day was gone before I realized why. LOL
Hey, in my defense, all the days are the same around here.

BIL's time with us was over and he left to stay with his other sisters. He will return next Sept.
He is always quiet and when he isn't in school you would hardly know he was in the house but when he is gone, there is a hole left behind. We will of course see him as often as possible but his absence is felt in our home.

The Shaking that comes with LewyBody has increased enough to cause Hubby more neck and back pain.
In the past we have moved slowly and sparingly with pain meds.
I always fear meds because they seem to have a negative effect on Hubby's cognition.
In the past, fear has kept me holding off more aggressive treatment in pain management. Although I still have concerns I wonder, What I was holding Hubby back to? The tug of war of emotions to hang on or let go is emotionally heartbreaking. I had to decide that Hubby's quality of life was more important than my desire to "keep" him. Helping him stay as pain free as possible became top priority and the best care I could give him.

Meds were changed I am still watching for side effects but happy to say I haven't noticed anything distressful. YAY!!
Downturns still come but I have not necessarily contributed them to the new meds as they have been coming all along anyway.
Words are difficult to find. Hubby confuses easily.
Word recognition is diminished more.
Conversations are harder and sentences must be kept shorter. I struggle with that. :/

Hubby has started drinking his coffee in a laying down position. and eating his breakfast in the same manner.

Last night Hubby had mobile meltdown. Around 3:30 AM Hubby opened our adjoining bathroom door. He has done this a million times but this time, the sound woke me. I only stirred enough to see the time and be annoyed at being awake at that hr but something else said, something is wrong. Sure enough, I saw Hubby standing in the doorway, clutching the frame unable to move.
God has perfect timing and an acute alarm clock.
The longer he stood there the more he leaned forward and fear of him falling pushed me out of bed and to his side for support. It took all we had to walk (drag him) the few feet (6, I measured) to his bed and get him in it and settled. He couldn't remember  how to walk.

Today he is struggling to sit on the side of his bed and I was able to convince him to let me raise the hosp bed to sitting up and placing his table in front of him.
So far, it's working.

The biggest change in Hubby has been a noise he now periodically makes.
quite loudly he will make a sound that is familiar to a fast  "BLUB BLUB BLUB"
He makes this noise on occasion and mostly when I am busy in the room.
Perhaps a way of releasing frustrations and at times a way of getting the attention of our grandsons as they enter the room.
Sometimes I find it amusing and other times not so much when I'm trying to watch something on TV.
I do always ask if it helps him feel better to get that out :)
Somehow it reminds me of his mother. When we cared for her, she would make noise similar to that of a goat bahhh. Given a choice of sounds, I'll take a blub over a goat ;-)

Not every change is bad though.
The best change in Hubby has been his attitude toward me.
I can't say if it is because if Dr Neuros straight talk with him, or our straight forward talks here at home.
Whatever it is Hubby has been kinder toward me to the point of making an extra concerted effort to come and give me a kiss goodnight each evening.
And closing on the best note, One night we lay in the dark, in separate beds I said, "Goodnight Honey, I love you."
He replied, "I love you too, more than you know."