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.

Saturday, November 12, 2011

Me, Myself and I and BIL

My daily call to check on Hubby verified what I had said about his stomach problem was correct.
I find it funny that discussions of bathroom issues are as natural as discussing the weather.
Hubby was feeling better had risen to eat breakfast and was resting when I called.

There seems to be a calm that has settled on the house.
For the last 2 days I have noticed it in BIL too.
He's more cheery.
He sings while he puts his shoes on for school.

This day I tackled a home repair project that could NOT be done while Hubby was here.
Re Grouting the bathroom floor.
I've been wanting to take care of this over due repair for some time now but have not been able to free up the bathroom for the length of time it takes to do the job.
Hubby being away frees up the bathroom (we have another upstairs I can get to) and allows me to devote my time to doing the job as quickly and easily as I can without distractions.

You might think that this is all boring and wonder why I would choose an activity like this for my respite.
I can assure you that this is something I want to do.
Not rushing into a free for all respite week for me was the most relaxing and mind strengthening I could do for myself.
Taking care of me had to be priority number one if I want to care for Hubby.
Knowing this job will be finished is part of taking care of me.
I really am feeling a little more collected and although this job is tedious I do enjoy it.
It's what relaxes me.

Also, I still have caregiving responsibilities for my 63 yr old Down Syndrome BIL.
It's funny though that I never consider myself as a caregiver for him. I've been doing it for more than 17 yrs. He has always been considered as one of my kids. Perhaps because he is of the age equivalent of an uneducated 8 yr old and his care blended with the kids while they were young.
He still needs care just like my children when they were young.  They outgrew it, BIL didn't
That type of care was just being a parent and nothing more to me.
BIL's needs are met. He is encouraged to do everything he can and sometimes pressed to do what I know he can even when he complains that he can't.
He is always encouraged to try something first before giving up and he enjoys the independence and challenges, most of the time.
He is a true treasure to have when he comes.
His care is shared equally between his 2 other sisters and myself.
I have him for the fun months, Sept - Dec. I get all the good holidays :)
Oh, he can annoy me, just like my own children used to, when he gets stubborn or moves my things around and then I can't find something. He takes FOREVER to do anything and his morning slow and my lack of morning friendliness can clash when he must be pushed to make it out the door to catch the school bus. Or when he turns into a Drama Queen over things.
BIL makes me smile more than annoys me though and I love him and I love having him.

Testing the respite waters in my own way works for me.
Knowing respite is available eases my mind for a plan B.
I don't feel so trapped, if that's a good word to use.
Knowing Hubby has adjusted fairly well to his stay assures me he is in good hands.
Prayerfully turning it all over to God to deal with makes all the changes of the week easier to process.

Friday, November 11, 2011

Now What?

Undisturbed sleep has been welcomed, appreciated and enjoyed :)

I called the VA and asked about Hubby.
The nurse said that his notes showed that he slept all night long, woke to eat breakfast. He appeared pasty and complained about his stomach hurting. There was no report of fever. Overall he was fine though.
I suggested that it was possible that Hubby could be constipated because he always feels like that when he is and generally looks ill.
I surprised myself by not over reacting and allowing the professionals to do their job.
It was a feeling of peace that everything would be okay.

I was making plans in my head.
Plans for things to do while I had this time.
I had a million ideas but nothing definite.
I wanted to lunch with so many friends and family. There weren't enough days for those lunches and had there been, I had already gotten rid of my larger pants vowing to not return to them ;-)
I wanted to spend time with the people I loved. I wanted to share the days with them and soak up the pleasure of their company.
So who and what would be next?

It turned out that I was next.
I spent a day with ME.
I went to the beauty shop and had my hair cut.
I did a little Christmas shopping for my boys.
I bought myself a purple sweater and I took time to wander around in Lowe's just looking and dreaming of things and projects that I would be interested in.

You may find this odd but give me a day to wander in Lowe's and I am a happy woman!
I don't like to be massaged or have my nails done.
Show me tools and let me smell lumber.

Thursday, November 10, 2011

2nd full day

For day 2 I had decided I was going to visit our youngest daughter her hubby and our youngest grandson since it was her day off and they had no plans.

Time in caregiving is a very precious commodity.
I must add that I am blessed to receive 10 hrs a week from a home health service which allows me to run errands and to buy groceries to keep the home running smoothly, or maybe I should say, groceries to keep our stomachs satisfied. Either way it works for me ;-)

Hubby and I live in a rural area so our biggest town for BIG shopping (walmart) is 20 miles away.
Now I wont go into the numbers game for time I'll just say that everything that can be squeezed in needs to be during this gift of aide attendance leaving little left over for personal pleasures like lunch with a friend or coffee, although I do try to work it in if at all possible. I have been known to be squealing tires upon my return to the driveway.

That said, being able to go and visit our children is such a very rare thing and getting rarer every day. Our youngest daughter lives more than an hr away so it was always out of the question to be able to visit with her during aide time. She may as well live a million miles away, I am glad she doesn't though.

So I made the decision I would spend part of a day with her.
I called to check on Hubby and see how he was doing. The Nurse informed me that he was doing well. He was eating well and talking to people. They mentioned that he had been up much of the night and was still asleep when I called. I let the nurse know that was a normal behavior for Hubby and asked that they let him know I had called. I stated that I wasn't sure if calling and talking to Hubby directly was a good idea as I was worried I might upset him but the nurse told me to feel free to call them anytime. I thanked her and hung up.

Then I lollygagged so much that morning that I let time get away from me!! It was close enough to lunch when I arrived at youngest daughters and I was not disappointed with the visit. We all shared a lovely lunch. I carried the baby around (like they had a choice), sent bragging pictures of the baby to my oldest daughter and loved on them all as much as I could. Then returned home.
It was a wonderful day.

After BIL came home from school I took a short nap, fed us supper and enjoyed the quiet of the night.
I also took the opportunity to go out and look at the Moon and Jupiter.

Wednesday, November 9, 2011

Day 1

Just a manic Monday for us.
I got Hubby all packed the night before his respite day.
Added the few misc items and zipped his suit case on Mon morning.

We discussed the weather and coat/jacket options.

I brought him his coffee and breakfast as I made sure that BIL was getting ready for school. While they ate I dressed.
I was always the last minute gal for getting ready. We were never late for anything but I was always a right on time person. I didn't allow for delays, just always optimistic there would be none and we would arrive on time.
Hubby was the complete opposite. He was the early bird.
He constantly reminded me of the time.
The time it was, the time we had left and the time we needed to be anyplace.
This always annoyed me.
Now our tables have changed.
I'm the allow for everything gal. I give Hubby a 2 hr window to get ready to go anywhere. BIL needs the same amount of time.
Now I'm the keep everyone moving and be early gal.

An extraordinary feat in the mornings also ;-)

This particular day BIL school bus wasn't making the morning run so he would be a drop off.
Grandson had left his blanket from the day before and daycare would never forgive me if it wasn't returned to him so errand #2 was on the list.
Dog out, loaded the suitcase, the Hubby, the BIL, and tried to remain as calm and collected as possible fearing another refusal to go was looming somewhere in the Lewy atmosphere.

3 miles down the road, remember the weather conversation? Yeah, me too. I had to turn around and get the forgotten jacket for Hubby.
 Pulled in the driveway, jumped out of the car, opened the front door and the dog ran in.
Chased down the dog and booted her out. Back in the car with jacket in hand and away we went for our 70 mile trip to respite , after 2 errands. No turning back now. I had decided anything else forgotten would be purchased on the way.

Once we arrived we were directed to 3 different places the third being the proper one. (Third times a charm)
We were greeted by friendly staff and seated for intake which was more than 2 hrs.
I had the opportunity to educate a couple of the staff about Lewy Body Dementia. I had also printed off laypersons pamphlets and left it with the Nurse asking her to share with the staff.
She had only heard of Lewy Body but was not familiar with it.
I felt confident that she would read it, I want to believe she did.

Hubby was anxious about everything that was signed. He was double assured about every paper.
Once he implied I was just going to leave him there for good.
Bless his heart I know he had to be scared.

At one point he became angry with me because he had more money than the facility wanted him to have on hand. I offered to bring it home and he told the intake Nurse, "She just wants all my money so she can spend it".
The intake Nurse was kind and tried to explain that Hubby really didn't need that much on hand and I was only trying to help. Hubby was angry and threw his money on the table toward me. I gave some back and promised to put the rest up for him to have when he returned home.
I assured him over and over that I would return on Monday.

Lunch came and they seated him in a small dining room.
I helped him with his tray, and while doing so, 2 of the residents decided to get into an argument with each other.
They were yelling and pushing each other then the staff started yelling.
I wanted to look over at them all, point a finger and sternly tell them that we were company and they needed to mind their manners and shut their mouths! But I didn't, I continued to help Hubby.
Another resident sitting close to Hubby told me not to worry "We'll take good care of him"
I smiled and thanked him.
He then told Hubby that it was better than BootCamp. Hubby laughed.

I kissed Hubby, assured him I would be back Monday and reminded him I loved him.
Walking away seemed like the hardest thing ever.
He will be gone for a week.

I cried that night. I did not sleep well.
I keep looking for him and listening for him.

The next morning I called to check on him. They said he had an anxious night but over all he did fine.

That refreshed me a little to hear. The nurse I spoke with said Hubby was still sleeping and I assured her that was Hubby's normal. 

Tuesday night was still difficult but less so.

My first day I was able to enjoy a leisurely lunch with my sister in law.
We did a little window shopping and didn't watch the clock. 
We laughed and it was like old times.
I had fun.

The night ended and there are no angry words or harsh feelings.
The night ended and I missed Hubby instead of wanting to find a place to hide from him.
The night ended and I trust he was in good hands.

Tuesday, November 8, 2011

Scardy Kat

II Timothy 1:7 For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline

Statistically speaking respite care is  vitally important to the health and well being of the caregiver.

Respite care was scheduled for Hubby and I waited until a few days closer to tell him.
He took it well when I presented it as a week of observation and medication review;
Also an opportunity to have his pain in his back and neck cared for.
Hubby was pleased with this idea and was actually looking forward to it.
He thought about a way of escaping me from there.
He told me buses run and he would probably catch one to go into town if he wanted a day out.
I didn't disagree.

Then Hubby thought about it more and he became frightened and anxious.
Our household was filled with anxiety and suspicion.
Angry words and accusations flowed freely from Hubby.

I tried so many times to walk away, walk it off, run it out.
I wasn't always successful in keeping calm, cool and collected.
Some times the angry words spewed from my mouth while my head was screaming to shut up.
Apparently I don't listen very well or learn very quickly.

I NEED a break, my mind heart and body need a break. So I arranged one.
I fought many fears in doing that.
Fear that the new caretakers would not be willing to understand Lewy and medicate him.
Fear of losing more of Hubby to Lewy.
Fear that Lewy would convince others that what he was saying about me was true.
Fear that Hubby would not want to come home.

I coddled a spirit of fear, timidity.
My biggest fear without really being aware of it,
was thinking God couldn't take care of Hubby better than I could.
My faith was lacking.
For me, that was (is) a hard reality.

Sunday night Hubby was very upset.
To the point that he admitted to me that he was afraid.
He even decided he wasn't going to the Hosp.
I felt like respite time was crumbling around me but I remained calm.
I reminded him of all the reasons he wanted to go but agreed that if he chose not to go that would have to be okay and he could just stay here at the house with me.
Later in the evening our son came by.
Hubby beckoned Sonny Boy into the room and had him close the door behind him.
He asked Sonny Boy about going and Sonny Boy, bless his heart, was very kind and encouraging about his fathers stay in the hospital.
Hubby agreed he would go.

To add relief to the house tension, 6 yr old grandson offered his insight to Pappaw.
Sonny Boy and DIL agreed to run an errand for me. I offered them the use of my car and upon their return DIL handed me my keys.
Hubby, observing this exchange, grumpily exclaimed "I don't understand this! She lets you drive her car but she won't let me!" 
To which 6 yr old Grandson sincerely responds, "Well, That's because you're old." 
I had to hide and laugh as did Sonny Boy, and DIL, turned beet red! ROFLOL!!!! 
From the mouths of babes!!!

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!!