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, September 24, 2011

Hubby's Personal Loss

On top of all of Lewy's problems that plague Hubby, Hubby has had some personally difficult days.
Hubby and I went to see a friend who was gravely ill in the hosp and after they moved friend to the Hospice wing. Time constraints and other responsibilities prevented us from visiting one more time, then it was too late.
Why do we always think we have one more day?

Hubby has taken the loss of his friend hard.
I'm at a loss to be able to console Hubby because his delusions have kept him angry at me.
Why would he want the comfort of someone that keeps him 'trapped' and 'steals from him'?
So I look at him sympathetically and speak soft and kind words.
It's the best I can do.

The visitation and funeral have been a lot for Hubby to process.
Tonight he is very very confused of day and time.
As I brought Hubby his supper he asked what day is was.
He repeated my "Saturday" response with a questioning tone.
I confirmed he was correct, it is Saturday.
He wanted to know why it was Saturday.
It just is, was the only answer I gave.
When I set his plate down, he couldn't understand why we were eating.
I explained it was time for supper but was having a difficult time getting him to understand what supper was.
Eventually he clicked and ate his supper

It breaks my heart that Hubby feels confused sad and alone.

I am in hopes that he will follow through on the advise of his social worker and attend the Sr Center and participate with others. Our plans to do this have failed twice. The most recent time, Hubby woke, ate breakfast, conversed with me and I gathered his shirts for transport to the cleaners. Hubby likes his shirts starched at the cleaners. He dressed and laid down and wouldn't wake up in time for us to leave.
Oh well, better luck next time.

If at first you don't succeed...

Tuesday, September 20, 2011

Thank You Hubby

Listening to the radio in the car with Hubby today made me think back.

Shortly after Hubby and I met,  We decided we wanted a different life path for ourselves.
I wanted it for me as well as for him.
Have I always been the most perfect wife?
(insert laugh here) No!
Has he always been the most perfect husband?
No, and if you need details let me know ;-)

But I can honestly say, I don't know where I would be had I not met him.
I know my life is better than the choices I was making and I think I am a better person because of him.
And sometimes in spite of him.
Even with our ups and downs and deep pits he is still the man I love beyond reason.

Saturday, September 17, 2011

Wanted, Dead or Alive!

For the last few days sleep has been fleeting during the night for various reasons.
Cool temps, crick in my neck, staying up late, Hubby's busyness, worry that I would not wake on time for something so I watched the clock all night, sleeping with my hand curled up under my chin putting it to sleep and then at some point moving it and it wakes up (I don't know why I started that sleep habit),  etc
That makes for long days and nights and leads to mental and physical tiredness.
Oh, I'll eventually catch a nap for "a few mins" and find I've slept like a rock for a few hrs. A couple of times like that and I'll be all caught up.

Last night was no exception but I slept/didn't sleep for a longer stretch of time. Headache tired put me in bed before 9 PM and I finally crawled out at 8 AM. I argued at the clock every time I opened my eyes and looked at it. "I am NOT getting up!" I guess I told it! hmmph!

Dreams were crazy too! I will chalk this up to a 3 hr trip to a funeral. The sheer emotions of everyone and the 3 hr trip back and the car conversations. I dreamed that everyone I encountered had to hug me, no, embrace me. The long, clinging, tight, don't want to let you go, kind. Sometimes the embrace was very sensual.
(Note to self, stop watching so many back to back episodes of "Bones" if you want to keep the men out of your dreams)
I woke while packing backpacks for those going on a trip.  I didn't know where they were going but apparently they needed hamburger meat in patty form. 

Our son, SonnyBoy, stayed with Hubby so I could attend the funeral. I tried to make it as easy, comfortable and convenient as possible. I made Hubby hamburgers the night before for his lunch (that's where that thought came from).
I made SonnyBoy a time sheet to get BIL on the bus for school.
BIL is Hubby's 63 yr old brother with Downs syndrome. Our annual 4 months of his care began the first of Sept. Hubby's 2 sisters and I share BIL 4 mo of every year. We have done this for several years now. It's funny but I never considered having BIL as caregiving. He is just "one of the kids" and I have always considered it a pleasure to be able to have him. He makes me smile so much and is a treasure.

So SonnyBoy takes over the duties and for the first time in more than 3 yrs, I am a vast distance from Hubby. I just wish the circumstances had been different.

Back at the ranch...
I woke fully from my sleep and looked over at Hubby.
I hear his breathing, not labored  and I could see his chest rising and falling in rhythm.
He was sleeping calmly.
I need coffee.

For the last 2 days I have had something rolling around in my head.
The words of another have stirred deep feelings.
I'm NOT jumping on a lynch mob wagon but I do need to get MY feelings out.

By now everyone has heard about the advice Pat Robertson gave.

          Mr. Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the incurable neurological disorder.

          "I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Mr.Robertson said.

          He also stated he wouldn't "put a guilt trip" on anyone who divorces a spouse who suffers from the illness, but added, "Get some ethicist besides me to give you the answer."

         When asked by Terry Meeuwsen, Mr. Robertson's co-host, about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."
         The answer Mr. Robinson gave was :
         "If you respect that vow, you say `til death do us part, but this is a kind of death."

 As a spouse to someone with dementia this is how I (emphasis) feel about this.

From the worlds perspective as opposed to my beliefs and faith I first understood when he basically said, if you were going to find a relationship outside of your marriage then you should get a divorce BUT make sure the ill spouse had a caregiver.
I understood it as much as I understand the thought, If you're going to continue to have an affair (whether your spouse is ill or not) you might as well get a divorce.

I also understood when he said he wasn't going to put a guilt trip on anyone who divorces an ill spouse.
I know it is very hard to be alone and have the same desires and needs, physical and emotional and not be able to fulfill those with your spouse.
Neither am I going to judge anybody for their actions. This is not my place. I don't know how they feel or what they are experiencing. I only know me and my experiences. We are all different with different needs wants and desires. Some people, for whatever reasons, can not be alone.

In his final sentence, I tried every way to re read into what Mr Robertson said. Maybe I misunderstood. Perhaps he meant something else, but there was no further explanation. I can only think Mr Robertson's answer was based on a worldly view. (Again, as opposed to my own beliefs and my faith).
A view that can give us excuses for what we want to do or not do.
But what I do not understand, either from a world view or my own beliefs is how Hubby can be considered dead. I can find no excuses to lead me to accept or believe that Hubby is dead.
I even looked up the medical definition of death here.

I watched and listened to Hubby breathing all on his own this morning.

Lewy Body Dementia can be kill many things I think.
Hubby's mental loss as it continues is like a slow death but he is not dead.
Lewy takes away many of hubby's daily living activities.
We must make adjustments to make what is left of Hubby's life more comfortable, convenient and provide for him the best quality we can. He is still alive.
So alive he ordered breakfast this morning.

Does he remember who I am? No not really, He knows I'm Kathy, he knows we are supposed to be married, he knows I take care of him but he does not remember we got married almost 30 yrs ago.
He does not remember that the things he talks about in our past include me.
He is always surprised when he talks about something and I say, Yes I remember that. He wants to know how I remember it LOL :)

He remembers our children.
He knows I am their mother, but he can't connect us together with them.

He doesn't believe he lives in his own home.
He keeps talking about moving and going to his Mother's home.
It is one of the last places he remembers living at.

He can't walk far, just a few feet, we use the wheelchair quite often.
He sleeps much of the time.
He complains that I am stealing from him and keeping him trapped.
He says me and Kathy and the other one whom he can't remember, are tricking him. (Me myself and I)

Does he always know what he's takling about?
No and neither do I.
He gets anxious and sometimes he cries.
He talks about his death and sometimes I have no idea what to do for him so I hold him for comfort.

All of these things are done by a living and breathing person.
He isn't dead.

The funeral I attended, the man in the coffin, he was dead.
I did not experience the rhythmic breathing from him.
I'm pretty sure of it.

Is dementia easy to live with?
I whine and complain about it too.
Do I have the same relationship with Hubby as I had before?
My partner and I can no longer have the same intimate relationship.
We can't plan for the future like had once did.
I have no sounding board for concerns and there is nobody to turn to for physical or emotional comfort.
I have no pillow talk friend.
My help mate isn't able to do simple things like bringing home a gallon of milk on his way home.
My chauffeur is retired so my back seat driving has turned into actual driving.
My security from car problems is now unavailable.
My scary thing hero can no longer kill the bugs and chase away the opossums.
My protector now needs to be protected even from his own choices and mishaps at times.
I have to think for 2 and react for 2 and care for 2.
All of this and much more has been lost.
I get lonely for my husband.
I miss his physical touch and the fulfilling of our desires for and with each other.
It might feel like someone died sometimes. Grief can creep at every loss.
Yet Hubby is very much alive.

For me, I made a vow, a promise, not just to my spouse, but to myself and to God.
I choose to keep my word.
I don't do it because I have to, I do it because I want to.

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

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.