Disclaimer

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, September 13, 2011

Lewy's Anxiety or Mine?

I sometimes wonder if the additional anxiety belongs to Hubby or if it's mine.
Mine, because I'm anxious to lessen Hubby's and have thus far been unable to do.

I've sought out advice and council from the experts (Drs) and the experienced from the trenches (other caregivers)
I meet Lewy head on at times with his bullheadedness and uncooperative attitude and mine with my continuous prompting (could also be construed as nagging).
Some how I need to find a solution. I'm thinking along the lines of less nagging.

My preferred "go to" site for Lewy Body support and advice is the Yahoo spouse group
I am NOT saying that any experience or advice that other (non spousal) caregivers can offer isn't appreciated or valued. it IS!  I just know that caring for a spouse is different compared to caring for a parent, grandparent, other family member or friend.

But, I'm grasping now for a place to turn to make it better for Hubby and in the end result me.
This is the question I posed to others.

"Would a social worker or counselor be of benefit?
I'm afraid of new meds and their side effects but is there something others have
found beneficial I can ask about? I worry he will be fast forwarded with meds
but what am I actually holding him back in?
Do I just let the change occur and roll with the punches?

I'm really conflicted and feel like I'm in a circular room with a revolving
floor and lots of doors. No corners to hide in and no way out but through one
that isn't locked. Yet I keep trying the locked door :( "

In one answer I was asked if the Dr knew about these changes and if meds had been introduced.
My answer is...
Seroquel is not a med that Hubby takes and yes, his Dr has been notified of his
behavior changes. This behavior is also not the result in any med changes.
Illness is also not a factor ie: Fever (always first thought), UTI...etc
Just seems to be a natural (that seems like an odd choice of word) part of the
progression.

I've prayed but honestly I'm not sure what I need to pray for.
I'm open for thoughts, feelings, suggestions, magic spells (kidding!)

I'm a firm believer that love concurs all, in this case I think it needs some backup.
I don't care for this, helpless to do anything, feeling.

Monday, September 5, 2011

FB status rewind for my own pleasure

Things that make you go hmm,
Things that make you smile,
Things that make you go LOL!!

We live a simple and easy life

Tues. Aug 23: Hubby has complained about not being able to see well for a very long time. Since the V.A. is too slow for him and I needed an exam myself, we both went and had exams with a local Eye Dr. 
After his exam Dr told him his eyesight wasn't much if any different than his current prescription. but his glasses could use adjusting. So, we had the old ones adjusted and cleaned. 
Later he told me he could see great with his new glasses. He is very pleased. YAY!! ;-)

Fri. Aug 26: This shouldn't be funny but hey, it's me. I let our dog, Lady, in the house to see if it would help alleviate some of Hubby's anxiety. It's a work in progress. 
She's been getting royal treatment! Tonight while she and Hubby were laying on the bed, I walked out of the room into the kitchen. I heard Hubby say, "Where did she go Lady? Where did Kathy go? Or whatever her name is." LOL!!

Sat Aug. 27: Waking up in a new world is always difficult, especially for Hubby. Lets pray we can make the visit short yet sweet until we find our (his) way home to the familiar. 
We always did want to travel. I just thought we would actually leave the house ♥

 Sat Sept 3: HA HA!! Hubby's REM sleep disorder causes him to act out dreams. There's nothing like a 2 AM beat up and incoherent yelling from Hubby. 
Used my defensive pillow block move so no injuries, just a rude awakening. Then he grabbed my night dress and blanket resulting in a tug of war! Of course I was victorious and even had to laugh (yes I was surprised at that too). Hubby slept right through the entire thing.

and again
 
Oopsie, body spray is not hair spray. But Hubby sure smells purty ;-)

(Hubby did it to himself. He smelled like sweetpea )


Sun Sept 4: Hubby: You know what? I've been thinkin. I've been thinking about it since it came to me. Well since you said something but I've been thinking about it for a while now. I sure have been thinking about that. (long silence) You know what I mean?
Me: Umm, no, I have no idea what you are talking about.
Hubby: Now Hun, you can't tell me you're that stupid.  
Me: (silent thought) Apparently I am!

That comment made me bust out laughing! 


If you don’t enjoy life on purpose, then you probably won’t enjoy it at all. - Happily Copied from Joyce Meyer Ministries

Lewy's Bicycle Escape Dream

It's been an interesting few days at Lewy's House.
In particular,
If you remember Lewy decided he needed a bicycle. One was purchased for him but he was unable to ride it.
Then he started talking about an adult trike.
I delayed him as long as I could until a trip to a local bike shop was made Friday.

My anxiety always raises it's red flags any time we have to travel from home.
Knowing Lewy has been planning his escape for some time now left me feeling anxious.
First he thought he would get a 2 wheeled bike for his get away.
But that was a no go.
The best he could do was push it across the driveway a couple of times.

Awaiting the trip to the bike store was fueling his eagerness. Lewy had been up for a couple days in a row. Talking about going and getting his new bike. Riding it back to town. (Not home, as he was going to stay in town a 15+ mile trip back. Home is farther)
I suggested when we get there he give it a test run just to make sure he was able to ride it.
Lewy agreed. As it happened that his aide was here for her time, he was annoyed he had to wait.
I, on the other hand could have happily waited until the end of forever.

As soon as we pulled in to the parking lot another customer was taking a "test  spin" on a bike identical to the one Lewy was interested in. She appeared to be a little older and had some physical problem. Lewy watched as she made the parking lot circle with the assistance of the salesman.
We entered the showroom and were greeted by another gentleman.
Lewy was looking at a row of adult trikes and told the man he wanted to try one.
I told Bike Gentleman what Lewy wanted and I also mentioned that Hubby had Lewy Body Dementia. I asked if he would please take that into consideration when dealing with Hubby.
Bike Gentleman was so kind, he smiled and told me he completely understood and that he had his own experience dealing with people with dementia.
Bike Gentleman made me feel at ease.
I explained that Lewy may be trying to plan an escape.
Bike Gentleman and I laughed.

He offered Lewy a test ride in the parking lot.
Lewy mounted trike and Bike Gentleman pulled him outside.
It was apparent that Lewy would not be able to understand the mechanics of peddling and steering.
Balance was still off making turns difficult and Lewy's inability to push the pedal and continue momentum was almost non existent. All in all it was a very disappointing reality for Lewy and as much as I rejoiced that he failed, My heart hurt for Hubby.

Not willing to admit his inability we all entered the showroom for a cooler place.
I could tell Hubby was very disappointed but he never said so
Bike Gentleman asked Hubby what he thought.
Hubby said he thought he needed to sleep on the decision.
Bike Gentleman told Hubby to take all the time he needed.
I then thanked Bike Gentleman and said we would do just that.

Hubby started experiencing mobile melt down when he made a walk to the restroom.
It gradually increased. 
Bike Gentleman offer Hubby a chair and a bottle of water.
He was so kind and considerate and patient.
Hubby stayed in the showroom for over an hour.
Then we left.

Hubby was quiet the ride home and most of the evening.
He later informed me that the small 'ride' through the parking lot was too difficult and he didn't believe he would be able to ride the bike.
I agreed with him and there has been no more word on the subject since.

Maybe now Lewy will leave Hubby alone.

Tuesday, August 30, 2011

Uphill, Through the Slick Mud,Trudge

I try really hard to be optimistic. I really do!
But lately it feels like it's taking every bit of my optimism just to get through the days and I'm feeling completely exhausted. Mentally and physically

I'm not looking for sympathy here just sorting out my feelings.

I've been trying to get my own head wrapped around just what it is I'm feeling.
I can't quite place it other than disconnected.
Like something pulling me into a tunnel and everyone and everything feels farther and farther away.
I still do all the things I have before, I'm exercising and eating without over indulging (too many times but I HAD to make a coffee cake!).

I'm remembering to take deep breaths or just leave the room when Hubby is on a rant.
For the most part I let what he says go in one ear and out the other trying to remain unphased by his words.
All of this is still a work in progress.

I still interact with others and still pray for them and our own selves.
I still try to offer support to others but feel like I'm failing because the words wont come out right.
I'm finding it difficult to blog for those same reasons.

I do the best I can to make time for me, I made a new caregiving friend and IF we can connect again we will share lunch and have some laughs!
I'm still keeping my sense of humor.

I would like to chalk this whole thing up to a change in the weather, the new moon, or the hurricane, even though it didn't effect me personally.
I suspect that I'm just sick of dementia. I eat, sleep (or don't sleep), dream, breath, live, (house) work and  play with it from the outside. I can't really imagine how Hubby feels with it from the inside. I must keep reminding myself that this is not his fault but there are times...there are times, hmmm.

In Hubby's latest adventures he is still angry at me for stealing his money.
He decided he wanted to see a Dr right then, when I questioned him why, and explained I had to tell the nurse what was so important so she would work him in otherwise they would set him up for the first available appointment. When dealing with the V.A. we never know how long that can be. He became very agitated and told me it was none on my D* business.
He demanded I call anyway but instead I told him if he wanted he could call himself and explain it and I would be happy to give him the number. I retrieved the number and handed it to him. He wasn't pleased with me at all.
He sat on the edge of the bed continuing his tirade.

Side note: I think this in itself is funny because he can barely carry on a conversation without having to stop after ever 3rd or 4th word or forgetting completely what he was saying mid sentence, yet he can yell at me in long sentences and he never forgets what cuss word to use.

Hubby then decided he needed to get out of here so he put on a pair of his pajama shorts, a tank top and a button up shirt (that did not even match), slipped on his house shoes and decided to pack his things in a walmart bag and leave.
He stood at the closet for a long time.
I said a quick prayer and asked for a hedge of enclosure on the house to keep us safe inside.

My mind was working overtime though.
How do I deal with this?
I didn't want to block the door or physically restrain him.
My heart was racing and my own anxiety was rising.
Now what? kept creeping in my mind but remain calm kept creeping in too.
I chose (try to) remain calm.
I concluded he wouldn't be able to walk to the street so getting that far was out of the question for him.

What if he got out the door?
What if he fell down?

Neither of those had happened yet he was still staring at the closet.
Hubby turned and asked me if he could come back later and get his things.
(remain calm)
I repeated the question.
He said yes.
(remain calm)
I said yes.
He stared at me,
(remain calm) I looked at him.
He went to the bathroom, I exhaled.
When he came out he was tired and laid down to sleep.
After he woke, the rest of the evening was manageable.
My prayer worked :)

So this is Lewy Body Dementia.
The ups and downs.
This is life for us.

The saddest part is, my life is SO much easier than other caregivers dealing with this.
They have children still at home.
They have jobs they must go to.


I don't see how they do it day in and day out.
They have my greatest respect and admiration.
Mostly they have my prayers.

Tuesday, August 23, 2011

Winning the battle even if I'm losing the war

Poor Hubby has certainly has his ups and downs with Lewy Body Dementia.
It's heart wrenching to see him slowly, and at times quickly, slip away from what and who he knows.

My goal for Hubby has always been, Quality of life and maintain his dignity.
I have not always succeeded at it but I do my best, learn from my mistakes, pray I don't repeat them and lean on the Lord for guidance.

Yesterday's unnerving conversation with Dr left me with a sour taste in my mouth.
Today, after all of the sweet words I received from friends & loved ones, swallowing was easier.

I understand what Dr was saying and I understand why
BUT
I know me, I know my heart and I know that there MAY come a time when a decision of placement is necessary, it is not now.

I have decided that I needed to hear this awful thing.
I needed something to focus my frustrations with Hubby's anxiety on besides Hubby.
It just so happened to be Dr's words.
I was able to cry about them and feel my anger.
I prayed about it and whined about it.

Today my heart is lighter.
Hubby still started the day with anxious conversation about driving.
I tried blaming it all on Dr yet still agreeing that Dr was right in his decision.
I've named all the reasons why it wouldn't be safe.
Hubby thinks that since he has walking trouble, foot pedals could easily be replaced with hand controls.
I'm not distressed by this conversatoion.
We've had it a million times and every time I'm learning what words work and what words don't.
Like the Kenny Rogers Gambler Song, I need to know when to hold em, know when to fold em, know when to walk away and know when to run. 

Today I'm considering ways to combat the anxiety.
Meds are going to be tricky but I will discuss a possible change with Neurologist.
I'm also going to spit polish our little outside dog and allow her in the house again.
I think Hubby would enjoy the comfort of the dog and I KNOW she would love to be back inside.
I'll arrange a room for her to stay in at night to protect the carpets (the whole reason she got kicked out to begin with)

I believe with everything about me that God can bring this anxiety under control.
I believe with everything about me now is not the time to consider placement for Hubby.
And I believe with everything about me that I have the most wonderful support team ever.

My visual daily reminders tell me,
I am loved, share the love and remember to pray for others.

I am never alone or forsaken.

And I am also reminded by my monitor camera, that God sees everything. 


Monday, August 22, 2011

***Angry, me this time but not what you think***

A call to the Dr this morning leaves me with an anxious heart.

Dr tells me that he and staff believe Hubby is in the beginning of end stages of his Lewy Body Dementia and recommended placement.
I was a little taken back by that.
In my mind Hubby needs to be bed bound in the end stages.
Unable to communicate and needs fed.
In my eyes, this is what end stage looks like.

But I suppose end stages start somewhere.

I've chewed these words all day.
I am not ready to hear this.
I am not ready to surrender.
My heart says I may not win the war but I can win the current battle.
Perhaps it's the fighter in me?
Perhaps it's my own superwoman complex?

I have seen & read where other caregivers were at the end of their ropes dealing with difficult combative behaviors, be they  physical or verbal from family members.
My heart ached for them as they struggled to hang on one more day. I prayed for the peace of not only them but their caree.
There were times I questioned, to myself, if they held on too long before placement.
Their own health seemed to be fading and their peace of mind was slipping away.

I remember the decision we had to make concerning my MIL when she had to be placed.
And I remember the reasons we made it.
All logical and in her best interest.

I've wondered all day, am I not seeing something others are?
Did Dr rush to a solution?

His points were valid and I acknowledge them.
One concern was that Hubby "may" get agitated enough to want to cause me injury but hurting himself in the process.
Dr was right, if that happened I would feel terribly guilty if Hubby fell and broke a bone because he was mad at me.
We never know what a person with dementia is capable of.

He thought it would be better for placement while Hubby could still make the adjustment with lesser distress.

My mind is racing and my heart is screaming NO!
I am not ready, not now.

I'm angry.
I'm angry because even though I thought I was, I am not emotionally prepared to deal with this thought.
I am angry because I can't find a way around the anxiety without feeling like I am jeopardizing Hubby's condition and making it worse.
I'm angry because Lewy caught me off guard and left me rattled.
But I'm most angry because I allowed myself to be swept up in the feeling all day and evening.
 A complete waste of a day.

The good things about days end, is another is on the way.
Today I may be shaken, but I'm not going down.

***Emotional Land Mines***

Not sure what happened or how it did.
Hubby asked for a bowl of cereal before I went outside to jog/walk. A ritual I have been trying to keep up for myself in an effort to do something positive for me.
I happily obliged him and even added a fresh sliced peach for his enjoyment.
Comfortable that he would be settled in for my 20 min workout in the driveway I went outside.
When I returned to the house feeling accomplished and VERY sweaty, I did what I always do and boasted about my accomplishment as I sat in front of the fan.
Hubby did what he always does and asked me if I was hot.
I drink my 4:1 ratio of protein /carbs in the form of chocolate milk and head to the shower.

Somewhere between getting in the shower and getting out, and believe me I'm a fast bather, Hubby had a melt down.

He started out by telling me his usual chorus of moving away and me stealing his money but his tone and attitude escalated in anxiety and near hysteria. He was shaking as though he was raged.
I was stealing his money, I had him trapped here and he wasn't going to put up with it and if he had to, he would shoot himself between the eyes to keep that from happening.
(NO WEAPONS IN THE HOUSE!!)
His emotional tirade lasted quite a while. I tried calming words until I found myself having to walk out of the room, take a few deep breaths and wait for him to stop talking.
Then I returned , sat near him and spoke again in calm tones.
I asked how we could make him feel better. I suggested we call his Dr in the morning and see what he suggests.

Since Hubby has already been experiencing extra anxiety his Dr suggested we could try seroquel. As I am already leery of new meds, I wanted to do my own research on it before having a prescription filled. My red flags all shot up and started waving when Dr said anti psychotics. MOST of those types of meds are No No's for Lewy. My research has taught me that Lewy is super sensative to antipsychotics and anesthesias and a listy of other meds.
Of course EVERYBODY is different so what's bad for one may not be bad for another.
As with all meds, it's hit and miss.
The bad thing is that the misses with Lewy can push him farther down the dementia road at a much faster rate.
So you see why I am careful.
My research has shown that small doses have seemed to help some people with their anxiety so when I call I will agree to the new med.

Hubby was receptive about a call to the Dr and seemed to settle a little.
Staying on eggshells I was careful not to say or do anything to cross his line of fire and that plan pretty much worked until he became annoyed with me sitting at the computer typing. I cut off a friend that I was chatting with, called it a night as I was tired anyway and went to bed.
I wondered if I should have asked Hubby if he cared if I slept there, but didn't and the night went on peacefully.
Of course I attribute that to my plea for prayers on my FaceBook wall before signing off.

Now I understand in my head that Hubby is not himself.
He is held captive by Lewy.
My heart, even though I have a short defense wall built, still aches especially when he talks of needing to get away and hurting himself.

My self esteem takes a shot too.
What's wrong with me that you don't want to be here?
I think I'm a nice person.
I take good care of you. You have anything you need and most of what you want.
I jump when you want or need me.
My thoughts are always on you and your comfort and care.
If I were you I would be happy to have me taking care of me.

The unexpected outburst caught me off guard.
Admittedly it made me a little anxious to the possibility of escalated behaviors.
I've been the recipient of those before and they are not pretty.

I hope and pray that the day is calmer for Hubby.
Eggshells are not easy to walk on and the potential of cracking one and setting off an emotional landmine is great.
I just need to remember to stand firm and keep my focus.

Psalm 16:8
I keep my eyes always on the LORD. With him at my right hand, I will not be shaken.