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, 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
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.
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.

Thursday, August 18, 2011

Letting Go

Many MANY years ago, when the only thing I could do in the kitchen was boil water; I had an experience that lasts me a lifetime.
Once, while boiling said water I took a metal spoon and stirred macaroni in a metal pan. To keep the macaroni from sticking, I was sure to stir the bottom of the pan. As I reached over to turn the heat down on the electric stove, I made a full electrical connection and was paralyzed by the current, unable to let go of the spoon and unable to let go of the stove knob. It didn't last long and I eventually shook off the knob, threw the spoon and backed away from the stove staring it down, assessing my damage and remembering the pain.
Through my fright of the situation I concluded I was glad that was over and didn't want that to happen again although it would not be the last time in my life I have ever shocked by electricity. I recalled the incident several times to family and friends but eventually moved past the feeling and even found humor in the situation.
"See, I can't even boil water" ;-)

So what did I learn from this.
Perhaps that difficult and scary situations I can't seem to get out of, happen. By my own fault or by accident.
My recall of the situation was minimal but I could have easily allowed that fear to take over about electricity. Today I am very cautious and respectful of electricity but have no problems plugging in something I need or want to operate. Case in point, my computer!!
I have learned to use wooden or plastic spoons for stirring. And most of all I make sure , even when I know all is well, to never multitask by stirring and turning down a burner. One hand at a time :)

But what has this got to do with caregiving?

Hubby's Lewy Body Dementia has found me in a few scary, difficult to get out of situations emotionally.
Some by no fault of ours and some by my refusal to let go of the circuit.
I could find myself staying in the depression of the situation without a mind change.
I think the things that I fear is lingering anger and bitterness.
Those are the "electrical currents"' I am very cautious and respectful of.
They had already been in my life too long once and I don't want that to happen again.

So I feel the pain, acknowledge it.
Recall the situation in my blog and sometimes internally for several days depending on the depth of my mood.
Sometimes I just let go and sometimes I find a different method for stirring.
Then I look for the humor, if it can be found, or reach for a donut. ;-)
Mostly the humor these days.
"So tell me again, You're seriously TRYING to reason with a man that has dementia?"
Yeah, that's me, doing the best I can.

Wednesday, August 17, 2011

I Surrender

Hubby has been convinced for quite some time now, that he is being held in a V.A. Home and I am his caregiver (jailer).

Whenever he makes a comment about where we are, who's house this is, or a reference to "your house"  I have always corrected him in that the house belongs to us. In moments of frustrated proving, I've even pulled out paperwork to the fact but Hubby just says I have forged his name or tricked him into signing something.
 Since we have been dealing with extra anxiety lately I have decided to surrender to his delusion that the house belongs to me.
I have already accepted that he does not know who I am and instead of correcting him about the house I will just answer the questions or handle the statements as they are. The house is mine, our location is..
This hurts because I know I can prove to Hubby these things but I cant penetrate his beliefs so I must let go of it and watch Lewy steal it away.
In doing so there is less anxiety for both Hubby and myself. The anxiety of his belief we (Me Myself and I, remember there are 3 of us now) are tricking and confusing him is lessened as well as the anxiety of my desire to be right. I don't always have to be right, mumbles eventhoughIamaboutthis.

Some days dealing with Hubby's confusion is like trying to hold sand in a wind storm.
Some days he amazes me with what he does remember.

Tonight I am tired and a little sad because I feel like I've been lost forever in Hubby's mind. Part of me always wanted to believe I was in there somewhere in the deepest parts. And that may be true in the fact that he feels like I'm his security and comes looking for me when I'm out of the room even though he gets angry at me. Or perhaps he is hoping I finally flew the coop and he can make his get away ;-)
I'm also sad (jealous may be a better word) that he remembers people he met and knew for short periods of time and places he has been once in his life, but our home is no longer his.

I will try not to dwell on the negative.
As always I will regroup and adapt as needed.
But first, I think I'll have a donut.

Saturday, August 13, 2011

The Experience of Dementia as a Journey –Author Unknown

An amazing caregiver in her own right and a wonderful friend, Bette, posted the following story and I loved it so much I wanted to post it here. If for no other reason than to read it again for my own self. I think it speaks for it's own self.

The Experience of Dementia as a Journey   –Author Unknown
I am going on a long journey by train.  As I begin, the city skyscrapers and country landscape look familiar.  As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable.  The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different.  The buildings have odd shapes and the trees don’t look quite the way I remember them.  I know that they are buildings and trees, but something about them is not quite right.  Maybe I’m in a different country with different architecture and plant life.  It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed.  They are barely taking notice of the passing scenery.  Maybe they have been here before.  I ask some questions, but nothing seems different to them.  I wonder if my mind is playing tricks on me.  I decide to act as if everything looks all right, but because it does not, I have to be on my guard.  This places some tension on me, but I believe I can tolerate it for the remainder of the trip.  I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong.  Everything looks strange and unfamiliar!  There is no similarity to anything I can recall from the past.  I must do something.  I talk to the other passengers about the strangeness I feel.  They look dumbfounded and when they answer, they talk in a new language.  Why won’t they talk in English, I wonder?  They look at me knowingly and with sympathy.  I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going.  The only answers I get are in this strange language, and even when I talk, my words sound strange to me.  Now I am truly frightened.
At this point, I figure that I have to get off this train, and find my way home.  I had not bargained for this when I started.  I get up to leave and bid a pleasant goodbye.  I don’t get very far, though, as the other passengers stop me and take me back to my seat.  It seems they want me to stay on the train whether I want to or not.  I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening.  Strange, inhuman-looking beings peer into the window at me.  I decide to make a run for it.  The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car.  There’s a door!  It is difficult to push, but I must.  It begins to open and I push harder.  Maybe now I will get away.  Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train.  I hear the door shut.  They take me back to my seat.  I realize now that I will never get off this train.  I will never get home.

How sad I feel.  I did not say goodbye to my friends or children.  As far as I know they do not know where I am.  The passengers look sympathetic, but they do not know how sad I feel.  maybe if they knew they would let me off the train.  I stop smiling, stop eating, stop trying to talk, and avoid looking out the window.  The passengers look worried.  They force me to eat.  It is difficult because I am too sad to be hungry.

I have no choice now.  I have to go along with the passengers because they seem to know where the journey will end.  Maybe they will get me there safely.  I fervently wish that I had never started out on this journey, but I know I cannot go back. (Author Unknown)

Tuesday, August 2, 2011

Order Up!

This post may be all over the place as that is how my thoughts feel today.
I am hoping that getting them down in print would sort them so please bear with me.

Hubby has been experiencing unexplained anxiety over the last few weeks.
I cant tell if this is related to his PTSD or his Lewy Body Dementia or perhaps a collision of both.
Anxiety that has caused him internal nervousness and fear. Fear he has actually expressed.
His accusations about me having him trapped here and stealing his money are hurtful but I try to rationalize them in my head. He really has no idea who I am or where he is and this HAS to be distressful.
I'm sure his fixation on his own death as of late has not helped the situation either.

At first it was easier to soothe his fears and calm him but as time passes the ability to do so is more difficult.
His verbal displeasure of being here and wanting to go has hightened. 
90% of the time I can easily shrug off his words. 9% I have to make a willful choice not to get sucked into his annoyance and the other 1% always finds me loaded with guilt because I let my mouth engage before my head.

Today I contacted Hubby's Dr and we have an appointment for next week. I think that's the quickest we have ever gotten an appointment for the V.A.

Then there are the times when Hubby is very calm.
He still talks to me about not being here and never wants me think it's because of anything I did.
At these times he talks to me about me. And lately I am a 3rd Kathy.
One day Hubby talked to me about getting out of here.
I asked him why he wanted to go.
His answer was that he didn't know but he needed to.
And it wasn't because Kathy wasn't taking care of him.
I inquired about Kathy and received a pleasant answer.
Apparently he felt that the one treated him quite well, "Almost like a God"
Then an uncomfortable answer,
the other didn't treat him bad but she could be hateful.
And when I asked him who I was, He replied "Kathy"
Then he said we were trying to confuse him and laid down.

Today started out unusually good.
Hubby wanted to go out and have breakfast.
I suggested another eating establishment with a greater variety to which he said, He didn't care.
I wasn't thinking about the number of people in the restaurant and the amount of noise.
Bigger (menu) isn't always better.
Hubby jumped at every noise. I offered to have our food prepared to go but he insisted that it was okay and didn't want to leave.
During the meal Hubby complained about feeling nervous and shaky. He did finish his meal and we set out for home. Once inside he still complained about the nervous and shaky.
He needed assistance removing a shirt for his comfort.
I went through all the reg questions about illness to assess the situation.
Hubby rested.

Later in the evening Hubby announced that he felt his time was almost up.
What do you say to this? How do you respond?
I never know what to do except lay near him and talk calmly about other things.
Then the conversation took a sharp turn to accusations of thievery and entrapment.
I chose not to stay there so I went to another part of the house for a few mins. He finally settled down and I returned to the room.

Thus has been our life for the last few weeks.

Keeping my feelings in check isn't always easy.

Separating the man from the illness isn't always easy.
I love this man,
I hate this illness.

The other day he told me that I would be better off without him.
I told him I wouldn't really be and he asked me why.
My answer was because he made me want to be a better person.
He always has.

Then he placed an order for food. He knew exactly what he wanted and how he wanted it.
I smiled, prepared it and returned to him announcing
"Order Up!"
We laughed, he called me a smartalic and I agreed.