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.

Tuesday, October 25, 2011

The Days of our Life

Thought I would share a few smiles that came our way over the last couple weeks.
While talking on the phone with our youngest daughter one evening, Hubby decided to talk to me too. He saw me with the phone to my ear and even asked who I was talking to. Our daughter sent her love which I forwarded and he returned. He continued talking and asking me questions about nothing in particular until I finally told our daughter I had to let her go so I could concentrate on what Hubby was saying. When I hung up, he said in a disgusted tone "Oh, you hung up on me!" then he stopped talking!
Hubby is completely shocked one night when he learned my last name is the same as his but he thinks I'm pulling his leg! ROFLOL!!
You know you're a caregiver when you let your 3 yr old grandson help take care of Pappaw by holding and trading off care supplies . When the job is finished, you tell your grandson "Good Job!" and the two of you High Five as he exclaims, "That's Teamwork!"
Very early one morning I was trying to get a cup of coffee down when Hubby gave me my "orders" for breakfast. When I walked in the room with the sausage biscuits I noticed he was sleeping. The thought crossed my mind it yell very loudly "ORDER UP" but enough of the coffee had kicked in to combat that feeling. #lovemymorningcoffee
FINALLY decided to paint the wall in my bedroom today! Now Hubby and I are watching paint dry and seriously, it's the highlight of our day because we noticed a spot I missed :)
 Interesting evening here. Hubby thinks it's morning and try as I may he will not be changed. Oldest daughter called and even she tried to speak to him on the phone but he told he he didn't like to talk that early in the day. LOL!! He thinks it's funny that I served him supper instead of coffee and breakfast. He's even asking if Brother in Law thinks it's funny to have soup before he goes to school.I believe that to Hubby, it's funny and he is humoring me in my mistake ROFLOL!!!
Completely agitated at myself for putting something in the oven, setting the timer and walking outside getting occupied!
No burn up when time dawned on me but the timer was beeping like crazy and Hubby and BIL were just standing in the doorway. I nearly knocked them down to get to the oven sputtering that nobody came to get me!
Hubby, after saying "huh?" several times, didn't know why he needed to get me and BIL just started at me.
Frustrated I barked, "Didn't you hear the timer?!"
Hubby said "No" 
I asked why he was standing in the door.
His answer, "I didn't know where you were.
I still sputtered as I removed the food. then Hubby annoyed with me said "I don't know what's wrong with you."
AGAIN I repeated my frustration and walked away from them.
Hubby called me back and said "Honey, I love you"
All I can do is laugh. ROFLOL!!!
Trying to get me (limited coffee) BIL (Mr slow poke) and Hubby (Mr "Huh?") all corralled into the car for a Dr appointment this morning was like being in an episode of the 3 Stooges. Finally got BIL to school and Hubby to the Dr.
By the time we got there Hubby was wound up and acting silly. He asked for extra assistance to get out of the car so I reached in and took hold of his hand while I braced the wheelchair. He leaned forward, gave me a sly look, let go of my hand and fell back into the seat. Then proceeded to whine like a child "Ohhh she let go of me and made me fall back, she's abusing me" then started laughing like a little girl!
I started laughing and tried to help again but my laughter made me lose my grip and then he did fall back into the seat.
More "Whining" about a "boo boo on my finger" and more laughter.
MAN what a morning!! Came home and took a 2 hr nap!
So you see, it's not all bad around here :)

Thursday, October 20, 2011

Anniversary ..of sorts

Oct 18 was our anniversary.
Not the wedding type, the diagnosis type.

4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.

At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia. 
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.

You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.

Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.

I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<

So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.

That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.

One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.

My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)

A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.

Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.

I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!

Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.

The possibilities are many.

Should I feel bad that I feel good about this?
I'm conflicted.

Then there is the flip side.

I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.

Should I feel anxious about this?
I'm again conflicted.

So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!

Tuesday, October 11, 2011

Is this the party to whom I am not speaking?

I think I'm sick.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.

CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).

YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.

I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.

What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?

And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,


I don't know if my heart could stand it.

This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.

Friday, October 7, 2011

Still kickin

The passing of  Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.

What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!

The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.

I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.

During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.

Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.

But wait! the party didn't end there.

Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.


I prayed for Hubby to just go to sleep, I prayed for  the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.

My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and  peaceful.

Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.

It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.

Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.

I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.

Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.

I haven't blogged for what feels like an eternity.  I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.

On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)

A few funnies that happened I shall share from my FB status

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you" 
He says "What?" 
I repeat, he says "What?" Through laughter I say it one more time. 
Huobby says "Oh, she's like me, huh?" LOL!!

I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what? 
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!
Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :( 
Got out of bed at 4:20 
poured coffee at 4:30 
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)" 
My response, "Yes I need to get them to the cleaners" 
He asks, "You need to get what to the cleaners?" 
I stare at him thinking, seriously?! 
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since. 
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally
It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do." 
Seriously Hubby?!?! I love you too!! LOL!!! 

See it's not all bad :)