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.

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.

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)

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.
MISTAKE!!
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.

And who says men wont ask for directions

24 hrs after Hubby made his I love you statement, he once again reverted to being in the V.A. Home and me as his caregiver.
The statement/question he made this time was "You have a contract to do this (take care of him) don't you?"
I answered him without skipping a beat. "I sure do. It's called a marriage license".
The look on Hubby's face when I said it was priceless.
A combination of shock, confusion and disbelief and the smirky you're pulling my leg look, all rolled into one and it almost made me laugh out loud. I had to turn away from him and started typing on my facebook.

We settled into bed for the night , or I did anyway because Hubby wanders around at night and raids the refrigerator.
About 2 1/2 hrs later he called out to me. I shot up so quickly that for a moment I had lost my bearings then I noticed him sitting on the side of the bed.
I asked if he was okay but he responded no, he was lost and obviously frightened enough to admit it.
He didn't know where he was or how he got there.
He wanted to know where the doors led too and who was here.
He was shaking and I spoke calmly and reassuringly.
He settled in the bed still shaken and admittedly scared.
I held him close and asked him if he trusted me. He replied yes.
I asked him if he knew he was in a safe place. He said he thought so.
I followed through with those feelings to reaffirm we were in our own home and bedroom, nobody was here but us and everything was okay.
He eventually calmed down and drifted off while I pet his head.

According to Hubby this wasn't the first time this had happened to him but the first time he admitted he was afraid.
I so wish that fear was something Hubby never has to encounter but when he does I pray that we can deal with it quickly and easily.
I think we handled it quite well.

Denied

So it's official.
Hubby received his official decision from the Veterans Association regarding Aide and Attendance and the word is that although he does need 24 hr care he does not qualify for it since his condition is not part of his service connected disability. I was aware this would be the road block.
SO...
Onward we go just like we have in the past. And that's okay :)

I did learn one thing in the decision.
Apparently his records indicate that he was showing signs of dementia in Jan 2005.
How was I blind to this?!

Oh well, I'm not going to dwell on it as a negative.
I'm going to concentrate on the here and now and I am FULLY going to concentrate on his words to me last night.

I thought he was asleep when I crawled into bed.
He stirred and rolled over toward me and said,
"You know, I sure do love you."

You know what Hubby? "I love you too" :)
And I gave him a good night kiss.

Annual Review

Today was our scheduled day for the Veterans Association to review Hubby's care and well being by doing a home visit.
Hubby kept asking me when the Dr was going to come and I had to keep reminding him no Dr was coming.
He was set that he had a few things he wanted to get straight with the Dr.
Again I informed him that no Dr was coming but it never sank in.

I was prepared with all of the financial information.
My box was full of receipts and accounting ledgers, detailed and condensed information for funds spent. How and why and where. Everything sorted and organized.

I spent yesterday picking up the house so it didn't look like Hubby was a prisoner in a junk yard.
I actually cleaned house, more because I was nervous about the visit.
Why was I nervous, you ask?

Well I know that as far as the financial stuff goes I was doing everything Okay. As stated above, very organized and meticulous.
But what I was nervous about was Hubby.

What would Hubby say?
Would he tell them how he thought I wasn't his wife?
Would he tell them that I have been stealing his money?
Would he tell them that he wanted to leave here?

The unknowns with dementia are upsetting enough as they are, but, knowing that someone has the power to change your life with the click of a pen is a little unnerving. So I clean. 

My portion of the review went off without a hitch. As a matter of fact the lady that arrived to do the review was very impressed with my thoroughness.
Then came her part with Hubby.
I asked Review Lady if she was aware of his Lewy Body Dementia and thankfully she was. Hey, she is a paper pusher you know. Oh and a nice one by the way.

I led her to Hubby's room and left them to visit while I went into another room. Not far enough away to be out of earshot though.
Well, you never know when I might be needed!

I heard Review Lady ask Hubby the standard mini Mental Questions. Which I thought was funny since she isn't a Dr but perhaps she needed to verify his dementia.
Hubby remembered his name and Birthday.
Branch of service and even his Service number!!! (Impressive!)
He didn't remember what years he served though.
Review Lady asked him the day and date, the president, all of which he did not know.
Then she asked Hubby if he knew where he was.
Hubby said in a home.
When asked if he knew what kind of home Hubby replied "A V.A. Home"
He was asked who takes care of you?
He replied, "She takes care of me" (I will feel safe to think he pointed towards the direction of the door I left from)
Review Lady asked if Hubby was aware he received V.A. monies.
Hubby said No (I almost snickered)
Then she asked if Hubby received a weekly Allowance, Hubby replied No (True answer only because he doesn't ask for anything)
Review Lady asked Hubby if there was anything he needed.
(Holding breath)
Hubby declared he needed more money (LOL!!!)
Review Lady agreed that would be nice and she would like some too.
They laughed.

Review Lady's final question for Hubby was "Are you being well cared for?"
Hubby replied "Yes, it's good here."

What a relief to hear that. After all the days of wanting to go home and accusations of theft and talk of leaving.

Review lady left the room and said her goodbyes but before she did she asked about me and how I was doing. Informed me that there wouldn't be a need for another review for 3 yrs. And she said Hubby looked great, and appeared very well cared for. He even smiled for her.

It's always good to have affirmation when we think we make so many mistakes.
And even Hubby, somewhere,in his brain, he knows he is in a good place.
It's been a good day and the house is clean to enjoy it :)

She's supposed to be my wife

That's what Hubby told the Dr he saw the other day when asked who I was.
But Hubby doesn't really believe it. sigh

Sometimes I just get so tired of caregiving for Lewy Body Dementia that I don't want to even think about it, talk about it, research it,  blog about it, read about it. Unfortunately it's like air, caregiving is vitally needed so you go into auto pilot. Or at least in my case you do. I'm hoping it's just this dreadful heat we are having. A body doesn't want to do anything in it.

So where are we? Lets see. Still in our holding pattern except for some unexplained anxiety Hubby has been experiencing lately. We had an appointment with the Veterans Admin for Aid and Attendance a few days ago. We don't think he will qualify because his problem is not his service connected disability. I didn't really have high expectations for it but we followed through knowing all they can say is No.
So we get the appointment to see the Board Dr.
Hubby needs a 2 hr window to get ready to go ANYWHERE! Our appointment is in the afternoon so I don't have to get him up early.We have over an hr drive which is always difficult for Hubby. He sleeps or rides with his eyes closed so that helps. Big City traffic distresses me AND Hubby. The traffic itself for me and the amount of stimulus for Hubby.

As we prepare for the day I ask Hubby if he would like to stop and eat before we go. Hubby agrees and we stop at out favorite restaurant for lunch. Hubby allows me to use his wheelchair to take him in. This is actually the second time he has conceded to it's use getting into the restaurant for which I am VERY grateful.

Served and filled we make the trip to the Big City.
We arrive in plenty of time, check in and sit in the waiting area.
We are quickly called to the Dr office.
Now if you are familiar with the V.A. you know this is a rare thing indeed!
The Dr proceeded to ask Hubby a few questions.
Name,  check but spelled his middle name wrong
Date of birth, check
Age, He didn't know and looked to me for the answer
Who I was, answer, "She's supposed to be my wife". Still stings but shake it off.
Where were we, check
What was the date, unknown
What was the day, another look at me for answer
Who was the president, unknown
What town did we live in, check
What was our address, unknown and looked to me for answer.

Then Dr asked me some Qs about Hubby's abilities to care for himself , walk or be alone.
Dr showed me Hubby's THICK file that was going before the board.
Dr explained what our obstacle was.
Dr said he would help all he could and we were finished.
People this took ALL OF 10 MINS!! from wait time to leaving.
Going to the bathroom before the hr long trip took longer!!

Every one of these Qs could have been asked over the phone, or gleaned from his records. Especially from the form that his PC Dr filled out for this very thing just a few months ago!
The government, sheesh!

So anyway we make the trip home, stop by the fruit stand for the green tomatoes on the way and a trip to the store for milk then home.
I do not know what happened at this point but Hubby became agitated at me and refused to let me get the wheelchair to help him get to the house. For Hubby, the walk to and from the car is rather long so he uses the wheelchair and I am considering a few yard and parking modifications.

His anger was verbal in nature and the heat was high. He refused to let me assist in any way and told me to get away from him. The more I tried to get him to explain the more anxious he got. Realizing I wasn't helping the situation I left him there and came into the house watching him from the window.
Hubby struggled to get around the car but eventually made it only to get 'stuck' as soon as he needed to let go of the vehicle and walk without support. Seeing this I offered to assist in a matter of fact non threatening way.  "Honey, I'll be happy to get the chair for you." this was met with a hard look and a wave off. Again I retreated to the house. Watching Hubby let loose of the vehicle and 'freeze' in place was heart wrenching. I worried about the heat also. Yet no matter how many times I offered assistance he refused. Eventually he walked to the front of the car into the shade, was able to get a hold of the house and work his way to the porch along the wall and to the front door.
Once inside he was hot and HOT!
I left him alone as he went to our room, undressed and got into bed. I never knew what set him off but as the night came he seemed in a little better mood.

Anxiety continues to plague Hubby but not like that day. At least he isn't angry and I can deal much easier with non angry issues.
Most of the anxiety seems to hit at night, Hubby's internal thermostat goes haywire and he is usually burning up. I put the fan on him directly and it seems to help.

Another thing I noticed is that when this happens to Hubby he stresses about my whereabouts and hollers for my presence. Most of the time I am in the room pounding away at my FB games or looking for amazon deals so if I happen to be in another part of the house he will begin to yell "Honey!" Which I find funny that he does considering he isn't quite sure who I am, but then again, Hubby has always been a flirt ;-)
I'll come running only to find him confused, restless and unsure of himself. I make him comfortable as possible and sit with him until he sleeps.
Specifically last night I was busy in the kitchen when Hubby yelled for me. At first I said I would be right there, hang on, but he yelled again leaving me to believe he had fallen and needed help or something like that. I ran to the room to find him in bed but distressed. I asked if he was Okay to which he replied, "NO I'm suffering" I snuggled up to him until he settled down.

Anxiety is the new norm.

Another new norm is Hubby's declaration of his death. He talks about it quite often.
It goes along with his desire to move away and 'go home' to live alone. Wherever home is.
Hubby isn't sure where home is exactly but he knows this place he is in is not it. He believes this is a hospital that he has been mysteriously brought to and I am his caretaker everyone is trying to convince is his wife. I feel bad for Hubby but if I were the one needing care I think I would want me to be the caregiver. Although I tire, I'm pretty good at it. LOL!! ;-)

And me? I have finally overcome my mental hurdle about exercise. I wanted so much to attend a gym not just for the exercise but for the motivation, support and communion with others. But it was out of my reach so I sat frozen basically in my own depression UNTIL I watched an old episode of Bones ( I love that show) anyway, in the episode she and her partner Boothe were interrogating a woman. The woman was quite large, to be polite, and as they walked in the room, Boothe covered his nose and asked "What's that smell?" Bones, answering in her direct, scientific manner she has, said, "Mold, morbidly obese people have a tendency to develop mold in their fat creases." I nearly fainted and my hurdle for exercise was jumped! I did not wish that to be me.

So I started changing my eating habits and began ATTEMPTING (major emphasis) the couch potato to 5K challenge. It has NOT been easy as it's taking me 2 weeks to accomplish week 1 but I can see results not only on my scale but in the way I feel.
I use the 20 mins specifically for prayer time (in addition to the sporadic throughout the day conversations)
I changed how I thought about me, God gave me a job, caregiving. How could I continue to do it properly without the right tools? My body and mind are all part of the caregiving package and I was not using them to do the job properly. I could feel my own health failing. It needed repair. Just like any piece of equipment we have that might need repair I would see to it that the piece was repaired or replaced.
Since I didn't want to be replaced, ie having to place Hubby due to major illness of me, it was time to repair the Temple.
In my eating change came Hubby's eating change. Healthier choices, smaller portions, more fruits and veggies.
No candy, few sugars. Hubby's change is less restrictive than mine. If he asks for it he still gets it but I don't volunteer those things or have them readily available, well except for the fudgepops. They will have to be a special trip to the store.
I even tried to give up my morning coffee but that was the result of a 3 day headache! I couldn't live with that so I welcomed it back with open arms. I'm gradually cutting back on the amount and it seems to be working.

I purchased a juicer for fresh juice.
I LOVE IT!
I HATE IT!
I only hate it because it gives me thoughts of  wanting to plant a garden next year! LOL!! ;-)

These changes are not easy, I won't lie and say they are a breeze.
They haven't given me miraculous power to be superwoman. They are just a step I needed to take for me.
I still get tired of caregiving.
It consumes my every thought and action.
Even when the aide is here is still not down time. I must run errands and be aware of the time.
Everything I do has to be with Hubby in mind, even at the back of it.
And if it's not supposed to be, how do you separate him from it?

I'm still challenged in my caregiving roll but I'm trying to stay positive.
I know the changes are inevitable and I hope to be able to roll with them.
There are just some days I'm in caregiver overload and I want to sit down and say, No thanks, I'm good.

Holding Pattern

Until this morning Hubby and I have been in a holding pattern for illness and caregiving.
Can't say anything was good, can't say anything was bad.
To me, everything seems 'normal'.
It's funny what caregivers consider 'normal' in our lives. Or at least what I consider 'normal' in mine.
Especially caregiving for dementia.
Lewy Body Dementia takes so many things away from Hubby and keeps them out of reach from me.

Hubby still struggles to admit his limitations. Sometimes I'm sure he knows he has problems and other times I really wonder if he is aware of them.
He can be quite stubborn about many things. For instance. I have been trying to get him to agree to a day facility for just a few hrs a couple of days a week. I tried to encourage him by highlighting the fact that he can get out of this house and associate with other people and have some time away from me.
I tried to argue (I know I know!!) the point that it would give me some time to get out too and maybe even join a health facility again. Something I need to put back into my life.
I could do things alone at home but lets face it. The reality is I really suck at self motivation.
I need people in my life.
But Hubby will have no part of it.
His reason?
He doesn't want or need to go there but if I want to go alone I could.
Uh, sorry Hubby but that's NOT happening.

Then there are the other times Hubby will admit he can't do something like ride his bicycle or walk up the driveway with me to check the mail. There are times he struggles to just walk across the bedroom and asks for help.

When we get the lap over is when he is insistent ( a mild word) that he has the ability to drive, stay alone, etc etc in one breath and in the second, needs me to fetch him something to eat or drink because he can't get it himself.
Truth - This is the times when I'm annoyed with caregiving.

This is our normal though.
This is the holding pattern we seem to have been in for a little while.
This is also the time when I seem to collapse in on myself.
Feeling suspended in time and finding it difficult to move forward.
Wanting to hold on to moment yet waiting for the next change.

Hubby's most recent loss has been the placement of his wedding ring.
Hubby doesn't wear his rings all the time and the last couple of times he has, he has asked me which hand the wedding ring goes on. He says he can never remember. I tell him, believe me, I will remind you and not let you forget. We smile.
This morning he can barely walk and needed chair assistance to and from the bathroom.
There seems to be no reason to this sharp decline but Lewy doesn't really need a reason for anything.

In our holding pattern Hubby has felt like sitting out on the deck with me a couple of times in the evening.
One night we sat out and dreamed about things we would like to do. They weren't big travel plans, just home remodels and yard work. The expensive kind of course LOL! Hey, I said dream!
It felt good to dream with Hubby.
He still holds hope for his future.

Sweetness

I invested heavily in some 'me' time and took a 3 hr nap today.
Hubby morphed into his wander mode.
I woke twice during that time, once to do an auditory survey of Hubby's shuffle and once to roll over.

When I finally woke up I realized that there were some of Hubby's candy bars on my table.
He had been saving them and surprised me with them.

Thanks Hubby,
I love you too.

Stand up, dust off, get back on the Lewy Body Dementia train

SOoooo, how do you handle a ghost in the bed?

I don't know either so I just left it there.

When I was a little girl I lived in NY state.
The winters are cold and snowy.
Ice skating is popular.

In winter our long and rutted out driveway had ice in the dips.
To an 8 yr old this was prime ice skating property.
Bundled up and wearing my skates I spent some happy moments driveway skating.
Then the unexpected happened.
I slid and fell.
I fell hard.
I cried a lot.
Sitting on the ice, cold and hurt I couldn't imagine anything hurting more.
I couldn't get up.
Then my Daddy came outside.
He checked me over to see if I was okay then he picked me up and carried me into the house.
He helped me get my skates and coat off. He placed me on the couch with a blanket and brought me hot chocolate that he had made.
That feeling of safety and comfort still remains with me.
That was 40 yrs ago.

After our big fiasco the other night I spent a day decompressing.
The pressure was all coming from myself and that had to change.
I cried a lot, I was hurt and I couldn't think of anything that could hurt more.
I prayed for comfort but I couldn't get up.
Then my Father in Heaven heard my cries.
My support team came running,
err typing,
prayer warriors, well wishers, encouragers, family, friends, my list is long for emotional support and I am so blessed to have them/YOU all.
You picked me up, helped me remove the constricting feelings of guilt and wrapped me in your love and offered me emotional hot chocolate.
Thank you for caring.
Thank you for reminding me to be gentle with myself.
I am.

Yesterday Hubby slept all day.
Today he was having a good day.
He recalled with ease several things and incidents of long ago.
Communication has been good too.
He willingly participated in a family gathering when his daughter came to visit us.
We hadn't seen her for quite a long time and it was good to catch up.

Today is an easy day. That is not to say it doesn't come with it's challenges and odd questions or proclamations but I deal with each thing as it comes with my own self awareness for reaction.

I will try, try being the word of the day, to react to upsetting words in a different way.
I think 3 yr old grandson taught me this lesson.
When 3 yr old is upset because he can't have more candy he pouts, he whines, he cries and pleads to have his way. Most of the time I ignore him and tell him if he chooses to behave that way he needs to do it in another room away from me. Other times it means he is ready for a nap and this upsets him more and he declares that he hates me.
I know 3 yr old does not hate me.
His words do not bother me. He's 3.
I just remind him it is his right to feel that way and there are no laws against it but I still love him anyway.
My heart doesn't ache when this happens, my anger doesn't flare.
It is what it is and it doesn't last long before I am reinstated back to the "Happy" that 3 yr old loves "big".

This will need to be the attitude I develop with Hubby.
It wont be as easy looking into the angry face of a grown man.

Will I succeed?
Probably not all the time.
I'm not superwoman.
Thinking I can handle all things all the time is a false idea.
The best I can do, is the best I can do.

I'll fall apart and fall down.
I'm not perfect.
I'll make mistakes.
I will use and have regrets for harsh words.
I will forgive myself and continue to love.
Oh my goodness...
I'm human with human feelings.
And you know what?
It's okay to be human.

My own worst enemy

Feeling the need for a little "me" time I made a trip to the hairdresser and got my hair cut.
It has been more than 2 yrs since I had taken the opportunity to do that.

My biggest concern in doing it was the thought,"Will Hubby get more confused as to who I am?"
I decided to do it anyway and cross that bridge when I got there.

Upon my return home Hubby's first reaction was "I like it" YAY no strange looks or weird behaviors so any second thoughts about doing it were laid to rest.
The evening and the morning came.
Hubby was feeling good and decided he wanted to go have lunch and find some green tomatoes.
I was eager to do those things with Hubby and had no fears about our outing. The last couple have gone pretty well so I felt at ease in the decision.

The day was really good. :)
Hubby was more mobile. He wasn't anxious. He was more chatty and clear on the topics he engaged. Granted they were few and most of lunch was eaten in silence but that was okay.He was feeling good, wanted to get out and I was happy to be able to provide the opportunity for him to do just that.

Our return home found me looking for a nap so I snuggled into our bed and feel asleep with a peaceful feeling.
When I woke Hubby was up and sitting in a chair. He suggested we go visit his sister.
Since I'm always happy to go visit SIL I was eager to go and we did. We had a nice visit, Hubby did well just got tired as the evening wore on. We sat outside on her deck and listened to the thunder and lightning.
It was a good evening and we made our way home.

I joked on my facebook page that we had such a good day because maybe Hubby didn't know who I was with my new haircut and wanted to be seen with his new 'lady friend'. 74, dementia and still got it going on! ROFLOL!

Through the rest of the night Hubby and I made chit chat conversation which for us is a lot. Then in a sudden blindsided blow, Hubby announced that we needed to talk.
I did NOT see this coming.
My standard prayer to keep me reminded of the situation and to act accordingly must have been said without actual feeling because I let Hubby get to me with his words.
Angry at and suspicious of me.

I was hiding things from him,
I ws stealing his money,
He didn't know who I really was,
He wanted to know how he got here,
He thought he had been moved into this house for only 6 months,
When he first got here there were 4 of me and we were trying to trick him and steal his mind,
He wanted to know how long I had lived here,
I was keeping him trapped,
Who said I could keep him here,
He didn't know why he needed someone to take care of him,
He was going to have me moved out by checking himself into the VA hosp and living there.
He was going to get a lawyer and get out of his trap.
Who gave me permission to steal his money,
I keep trying to trick him...
over and over until he finally wore me down with his accusatory words and hateful feelings.

At first I deflected his emotions.
Keep your cool,
He doesn't know what he is saying,
He will forget in the morning,
Try to change the subject,
Find somewhere else to go,
Offer him food...

I think that lasted all of the first go around.

This is where it gets ugly
the wifely caregiver apparently only gave it a half hearted shot in conversing with her husband/caree
but enough emotion sucked in the intimate wife dealing with her husband.

I didn't remain calm, I wasn't polite, he said things to try and hurt me, I retaliated.
Our frustrations were scattered everywhere.
I couldn't even make myself settle down and to be very honest, I WANTED to be mad at him so I didn't try extra hard.

At the end of out verbal rant he had the nerve to ask me to make him a sandwich.
I laughed at him, recapped what he said to me. I was supposed to be okay with it and just go about making him a sandwich?
I left the room by telling him to make his own stupid sandwich..

I slept in the recliner.
(WOW, I just realized, this is the FIRST time in our nearly 30 yrs of marriage that I have ever slept someplace else. I never gave up my bed in an argument)

I lay there in the dark and I heard Hubby shuffling toward the living room. I heard his presence in the door and then I heard him shuffle off.
He continued to do this the remainder of the night until I finally rose this morning.

Now he sleeps and I feel terrible.
I try so hard to preserve his emotional calm, his manhood and his pride and dignity, yet I am the one that can shred it faster than an industrial paper shredder.

My heart hurts today, I've cried a lot and I'm struggling to separate the intimate wife from the wifely caregiver once again.
I tried to read scripture for support but all I seemed to look up was about fools and their anger and keeping our mouths shut.
Some days it feels impossible to keep it all together.

Me And My Lewy Body Shadow

I was so tired from lack of adequate sleep I went to bed before 10:30 PM one night only to be waken shortly after midnight by a tap on my leg. Hubby was laying in an odd position at the end of the bed and couldn't get himself switched around.
Not immediately aware he was stuck there I asked if he was OK. He said he was, but that he had a big mess on his side of the bed. I got up and walked around to survey the problem and sure enough, a pool of ranch dressing, a whole bottle of it, poured all over the floor, all over the side of the bed. sigh

Hands and knees I cleaned it up, sputtering to myself and about the situation. Then I realized, I was grateful for the exercise mats I bought and placed on Hubby's side of the bed for messes and easy clean up. Then I went back to sputtering.

By the time I got it all cleaned up  I was wide awake and decided to watch a few netflix shows. Another sleepless night.
Side note, Netflix has been a wonderful addition to our lives since we don't have the ability to get up and go to the movies or run down to the local video store.

Morning brought it's own sputtering moments that were associated with coffee and breakfast orders but we got through them.

Aide arrived and while Hubby was getting cleaned up I overheard him talking to Aide about the house.
Hubby doesn't believe he is in his own house. He actually made me laugh when he told aide she wasn't going to fool him into thinking it was.

Perhaps the lack of sleep caught up with me in another way because I've been sick for the last few days. Actually sick enough to have slept for about 2 of them.
Poor Hubby has had to make due with what I was able to drag to him or what he could forage for himself, which hasn't been much. Good thing for snack foods.

I'm feeling a little better today but still not quite well enough for me.
I have learned a few things while ill.

One of those is when people were talking to me theirs speech sounded all garbled and I couldn't understand what they were saying. My brain chose not to assemble the words into coherent sentences leaving me to stare blankly trying to sort it all out. I actually could not finish a conversation with my daughter because I couldn't concentrate on what was being said. It was terribly frustrating.
I wondered if this was the same thing that is happening to Hubby?

And even though today is better for me, Hubby still continues to have communication problems.
He can't hear me or understand my words. He has said some off the wall comments.
He wanted to know if the UPS man brought a box of green tomatoes (Hubby's fav)
Then he wanted to know if I was going to call State Farm to see if they had any green tomatoes.
Uh, No and No Hubby but if I'm feeling up to it tomorrow I will go to the local fruit stand and see if I can find some for you.

Another thing I learned is that Hubby sleeps the majority of the time EXCEPT when I am sleeping or not in the room.
I have come to realize that as long as I am seated at my desk where when he opens his eyes he can see me, he will sleep. BUT if I'm out of the room for any reason and he wakes, he comes looking for me. The other day I had stepped outside and he didn't know where I was. When I came in I could tell by looking at him that something was wrong. I asked if he was OK.
He wasn't angry or scared but had a concerned tone and he said "I just didn't know where you were."

Then I realized that while I sleep, he was up more, wandering the house.
Most of the time I just woke up when he got up to notice him gone but at other times there was evidence of him being up (dishes, trash scattered around, etc).

I worry about him wandering around since he is a fall risk. He's already taken enough falls without serious injury but I wonder just how many more he can take. I really don't want to know, but I can't keep him chained down. 2 falls in the last 2 weeks and today I just noticed that one of those times he had fallen and broken our bathroom scale.
Actually I have been saying it has been broken for quite  awhile now but that's a whole other story.

And just today I woke much later than normal. Hubby was already up and out of bed and was wearing his cap.
I asked if he was going outside to which he answered he already had been.
Apparently he HAD been outside to try and ride his bicycle.
He pushed it off the porch across the drive onto the grass but realized he couldn't do it so left it there and came back into the house. All the while I WAS SLEEPING!!

Our son, who was here, watched his father and told me of the struggle that Hubby had in his short lived effort.

Hubby also told me that he knows there is no way he can ride his bike.
I sympathized with him and left it at that.

But I wonder. Will I need alarms on my doors now to alert me?
When we cared for Hubby's mother we had to have them as she was always trying to get away. She would fight you to get away. Hubby isn't like that. Although he doesn't really believe that this is his house and he is always talking about moving, he has never tried to get away. So I don't believe his outside experience was an attempt to escape but more an attempt to do something he thought he could, like, ride a bike. I just wish he would let me know when he wants to try things. His independent spirit is very strong though so I doubt he would let me know.
It's hard to know where the line is when dealing with the independence of a person with dementia. Especially when their safety is priority.
My prayer is to maintain the balance between Hubby's independence along with his dignity and pride. It is very important to me and I struggle terribly in this area.What feels easier and safer to me may not be what Hubby needs.
Hubby may not remember me, or the house or how to ride a bicycle.
And perhaps 'Hubby' himself is gone but 'the man' is still there, somewhere trapped in Lewy's world.

2 coffee pot day

Hubby had a busy night last night.
Many shuffling trips to the kitchen to raid the refrigerator and of course needing all the support he can get by leaning on various noise producing things.
Scooting chairs,
frig doors with misc jar items in them,
fully top loaded dressers with clinking things on them (UGH note to self, CLEAN OFF THE DRESSER!)
the foot of the bed where MY FEET ARE!  Both ways. Although this wasn't noise producing the wakening seemed unnecessary.

Lewy body causes Hubby to shake without control. So when he clutches the bed it's almost like having a vibrating bed. That used to be fun when I was young. Not so much now.

So after Hubby tires of the kitchen trips he decides to raid his candy drawer.
Candy that has rattling wrappers. Wrappers that have been glued with never get it open in the night glue!
Hubby fought the candy for what seemed an eternity until I wanted to throw the candy out the back door!

So needless to say, my night was busy too and my interrupted sleep made for a cranky Kathy this morning.

To add to my attitude I had forgotten to set the timer on my coffee pot. This means I must wait for my coffee instead of it waiting for me in the morning.
At this point I am not sure who I am more annoyed with, Lewy, or myself.

Yes, I know I have a bad morning coffeeless attitude, and no, I don't intend to do anything about fixing it. So deal or stay away until I have had at least the first cup ;-)

But does Lewy remember this? NO! Lewy rises and makes a trip to the bathroom. Then he sits on the side of the bed and wants to know where his coffee and sausage biscuit are.
Are you kidding me?!
You walked all night getting things for yourself and now you are placing orders?!
Well I will have you know right now that I took a deep breath, sighed, and grumpily mumbled, ok as I retrieved his breakfast.

Proverbs 15 :1 A gentle answer turns away wrath,  but a harsh word stirs up anger.

I hope low tone mumble counted as soft.
In the 60 seconds it took to get his coffee and bisc, (and my second cup) I recalled a time Hubby woke up and asked me what time they served breakfast around here not realizing he was in his own home. Maybe this was a time like that.

ORDER UP!!

By the afternoon the coffee had already made it's internal round and bathroom trip so all was well with the world again. :)

Hubby has been quiet and or sleeping.
After a bathroom trip he decided to put on a pair of shorts that had buttons.
I watched him attempt to button them for close to 15 mins.
It saddened my heart to see his struggle. I weigh heavy the options of when to help and when not to. I don't think I'll ever master that decision making.
Finally frustrated Hubby announced, "Well I can't get these things done."
I offered to help which he accepted gladly.
He then sat down on the end of the bed and in a disgusted and defeated tone said, "And I think I can ride a bicycle."
I looked right at him and smiled real big and told him, "Well Honey, We all need to dream."
He thought this was quite funny and started laughing and said, "I guess you're right".
Then in a matter of fact tone, I added, "Of course I am."
A remark that made us both laugh.

Broken Dictionary

Since living with Lewy Body Dementia, I realize more and more that, to Hubby, I am literally his everything.
Yet somehow, the meaning does not look or feel like the mainstream romance definition for movies, books and music for some reason.
sigh
We need a song :)

I want to ride my bicycle

OK so I know this is a double post for the day.
But I promise my apology for 2 in a day is probably  longer than what I want to share.

Hubby had asked for a bike for weeks until I couldn't avoid any longer. 
FedEx pulled up with his freedom box this evening. 
I assembled it in the heat, sweat pouring off my nose. 
Hubby sat on the stairs inside the house with the door open to watch. 
After I got it assembled, aired the tires up and gave it the once over I proudly announced,"It's ready to ride".
Hubby's response, "I don't feel like it." 

ROFLOL!!! 
Looks like I got a new bike ;-)

Spontaneous combustion?

I love being spontaneous!
Or I used to love it.
These days with Lewy Body Dementia running the show, being spontaneous raises my anxiety level.

A couple of days ago Hubby decided he needed a haircut.
He refused my offer to buzz it and wanted to see a professional.
I  don't blame him there. I really stink at barbering, and I know it!!

So a haircut doesn't sound so bad, does it?
WRONG!!
Immediately my "sneaky devil' radar started blipping.
We've already had a terrible round of trickery from Hubby under the guise of a haircut.
I get nervous. My pulse quickens and my palms get sweaty. Every scenario runs through my head.
Anxiety creeps up the more he insists and me with no really good reason why we can't do it.
Lewy doesn't help matters either when he gets completely ready to go!
Completely dressed, alone, shoes socks. He's waiting on ME!

I try to delay in hopes that he will tire and wish to nap.
I change shirts and run a comb through my hair.
Add to the equation 2 of our grandsons (ages 3 &5) that are here with us also.
We find socks and shoes and of course they are easily found because Happy (my grandma name) has taught them to put their shoes in the same place every time!
WHAT IS WRONG WITH THAT WOMAN?!!
I mean, when did they start paying that much attention? They are 3 and 5 afterall.

So the boys proudly present their shoes and get them on the right feet.
oh yay :/

I ask Hubby if he wants to ride to the car in the wheelchair.
No! (firmly)

I decide to load the wheelchair anyway despite his insistence that he doesn't need it.

Once loaded and buckled in we make the trek to town. Chatty boys in the back seat, Hubby talking about the unfamiliar scenery and my mind racing.
Gripping the steering wheel tighter as we enter town, I suggest we go to a larger facility than Hubby wants so I could use the wheelchair.
Guess what he said?
Go on, guess.
Yes, he said no.

I get annoyed and Hubby asks why so I explain that he insists on doing things the hard way and it frustrates me, then I stop mid explanation and  tell Hubby, "You know what? Instead of being upset I should just appreciate the fact that you want to go out and do something. I'll stop complaining about it. I'm glad you want to get out with us." Hubby and I ride silently the rest of the way listening to the chatty boys.

I park as close to the door as I can for Hubby who still refuses the chair.
The boys are excited and as young boys do, they must investigate every thing they see and come back to tell me. Apparently their behavior distresses Hubby enough to throw his walking off and he freezes every time he concentrates on the boys. Or so he blames them for it.

(personally any activity Hubby concentrates his attention on does the same thing but I'm willing to let the boys take the blame as long as he isn't mad at me right now)

I send the boys to stand by a large flower pot and look at everything there while waiting for us.
Off they go.

I finally get Hubby inside and get his hair cut while the boys chattered about everything.

Oh great, now we have to leave. Boys scramble from their chairs and out the door.
Their little legs and feet are moving as fast as my pulse knowing we are going back out into the world. Away from the safety of home. Once we finally get to the car Hubby decides he wants to go get something to eat.
I only ask where, already knowing the answer because I am the one that will make the decision anyway.
Once there it takes 3 of us to get Hubby inside. And yet he STILL refuses the chair all in the name of his pride.

Food ordered, Drinks served in to go cups, food served, everyone's meals cut up.
Once we all finished I suggest that Hubby may want the chair to ride out in.
He agrees!!!!
I didn't give him time to change his mind before retrieving it from the trunk.

Loaded and locked in we head for home, but I'm still on edge about being out. We aren't home yet and the day is still young enough for Lewy to make trouble. With every thing Hubby suggests he do I fret inwardly so not to show him my frustration.
MUST. REMAIN. CALM.

A stop at a friends place of business had Hubby trying to get out of the vehicle but unable to finish his attempt. Melt down had occurred so I put his legs and feet in the vehicle, buckled him in and away we went to the safe harbor of home.

Once home, even 5 yr old took Pappaw's hand as he got out of the car. I unlocked the house, threw down my purse and got the chair for Hubby to give him a ride in.
Since then Hubby has pretty much been wiped out and slept.

No serious incidents so I was fraught for nothing.
Serves me right worrying about something I had no control over.

One of the difficult things about being a spouse caregiver to dementia, at the end of the day, I have nobody to pillow talk with and bounce the events of the day off.
Nobody to hold me and say, you got through the day just fine, or, tomorrows another day.
The loss of intimacy, both physical and mental, is painful even if you think you have moved past it for the most part.
I think it's like having your heart picked apart in small pieces, like a crow on roadkill.

I can't leave this post like this so I'm adding something I found from an earlier time that I forgot to publish

Hubby: "I don't feel good."
Me: "What's wrong?"
Hubby: "I don't know."
Me: "Are you sick to your stomach or just general feel bad?"
Hubby; incoherant
Me: "Are you , Go to the Dr sick?"
Hubby: "No, I just need to be babied."

OH HUBBY!! LOL!!

Reflecting on smiles

Some days, you just gotta smile and laugh.

Thought I would share a few facebook status lines that made me smile or laugh from the last couple weeks.
Reminders to me that things aren't always bad.

(Hubby) can't hear me. I change my tone, raise my voice and repeat, more than once. He gets huffy and says he's sorry he asked because I'm yelling at him, then I finally yell at him to tell him I'm not yelling at him. CRAZY COMMUNICATION CYCLE!!!

 HA HA!! (Hubby) just told me , "You know, I'd like for you to stay around." I replied, "I'd like to stay around." He then said, "Good, I'm glad." Looks like my approval rating went up for the moment. I'll take it! ;-) LOL!!!

 Been a tough day. Poor (Hubby) :( Lots of pain complaints and difficulty staying upright. In an attempt to help him sit up I reached around him. He let out a yelp and I thought I hurt him. He said, "No, Your hand is cold" LOL note to self, make sure your hand is on the outside of the housecoat ;-)

HA HA!! (Hubby) made me LOL! Hubby: "You know I don't eat as much as I used to." Kathy: "Really? Do you think it's because of your drawer full of candy I got that you keep munching on all day and night?" Hubby: "No"

There was no changing his mind. I even prayed he would forget about it, but NOOOOOO! After weeks of talking about it and me avoiding, re directing and 'forgetting to price them', today (Hubby) had me order a bicycle for him. Oh the places you think you can go LOL!!

Here's one I didn't post. On a trip home from the Dr, Hubby said he was upset because he didn't ask the Dr about his teeth (getting new dentures). I told Hubby that we would have to ask primary care to set up that appointment and we had a PC appointment next month. Hubby said "I might not make it that long" I asked, "You might not make it? Do you think you will die by next month?" Hubby answered "Yes" So I had to ask. "Then why do you need new teeth if your going to be dead in a month?" Hubby sat silent for a min then said, "Well, I guess you're right" But we are still asking ;-)

Focus

So I sat around and moped about feeling empty and watching the days fly by etc etc.
I suppose God laughs at me at those times.

One of my favorite stories in the Bible is when Jesus, after feeding the multitude with 2 fishes and 5 loaves, sent his disciples out into a boat to "Go on ahead, I'll catch up". He sent the people home, went off to pray and then went out to join his disciples in the boat. By this time a storm had developed and the waters were rough enough for the disciples to struggle in their rowing. As Jesus walked out on the water toward the boat, the disciples got scared because they thought a ghost was coming to get them.  Jesus re assured them it was He; But Peter, had to have more than just His Word so he wanted Jesus to allow him to walk on the water too. (isn't that just like us? Oh yeah, well prove it)
So Jesus said, "OK, come on" (my interpretation)

My favorite part is that, Peter, keeping his eyes on the Lord jumped out of that boat onto the water even though the storms were all around him. He walked out to meet Jesus. As long as Peter kept his eyes on the Lord, he was walking on the water, safe from drowning. Now the Bible doesn't say that Peter stayed dry while he walked. So I feel pretty confident that the waves splashed him and his feet were wet along with his face and hair. The waves were all around and Peter was experiencing them on a personal level, yet keeping his focus on Jesus.

But wait, there's more!
As Peter was being drenched by the water waves, he took his eyes off Jesus to look at the storms and see what they were doing to him and to worry that he couldn't handle it. Peter began to sink.

Now the REALLY GOOD part!!
Peter yelled out, I'm sinking, I can't do this, I'm going to drown! This is too much for me to handle! The storm is too big (more interpreting)

(Matthew 14:31 Immediately Jesus reached out his hand and caught him.)

Immediately:

1. without lapse of time; without delay; instantly; at once.

2. with no object or space intervening.

3. closely

Jesus didn't have to run toward Peter to grab him!!
Peter was in one arms reach of the Lord.
Jesus didn't say, "Hang on I'm coming!" He was there.
Peter lost his focus, just like I do so many times.

I sit down and take in the enormity of the Lewy storm and the height of the Lewy waves.
I cry, it's too big for me to handle. I am right, it IS too big for ME to handle.
I hear so many times the phrase, God will never give you more than you can handle. That sounds lovely. I like to think I'm strong enough to handle anything that God chooses for me to have. But the reality is that I limit Him when I do that. I make Him my size. I admit I'm coughbigcough (and at this rate getting bigger, wink) but I'm not God big.
When I surrender my little all to Him and keep my focus where it needs to be, I won't sink and He will handle it.
That does not mean I should do nothing. I still need to pull my weight. Use the abilities I have and the knowledge I was given. Do the best I can with what I have. I STILL have my own work to do under the watchful eyes of my Lord, the supervisor, teacher, example.

Me and my feet are still going to get wet. I'll be splashed in the face and I'll have terrible hair days I'm sure. I just need to remember to keep my focus and let God handle it. He is SO much better at it and never screws it up like I do!!

Hubby hasn't fully rebounded from the shaking. It happened a few more times and each time I cradled him until it passed. I will continue to do that for him and for me. 
Today is not much different than yesterday. Still has those moments, VERY confused and mobility is very very poor, He tries so hard to do things yet. It hurts to see his effort but I encourage as long as it does not appear to be injurious to him.

Everything else will work itself out. I need to turn it loose and quit sabotaging myself. I am my own worst enemy and I use fear to intimidate myself. Would I accept this behaviors from anyone else, NO! I can say that boldly because I have been in that situation where someone tried to use fear on me to manipulate me. It happened once, it didn't happen a second time. I now need to stand up to myself and say, I'm not going to let you treat me like this anymore.

Perhaps my spirit has been refreshed enough to get raised up and walk on the Lewy waters with my focus on Love.

Whole Lotta Shaking Going On

Hubby is experiencing a sometimes strange behavior on a more frequent basis lately and I'm rather stumped by it.
A behavior I had always been chalking up to cold chills, due to cold weather and a cantankerous heating unit spitting out cool air during the winter.
Since been replaced, my pocketbook is still screaming.

Hubby will begin shaking like he has a cold chill. He can't control the shaking and asks for a blanket.
I cover him and then lay down next to him and envelope him in my arms until he relaxes.
This may take a few mins to several to get him settled.
I'll release my grip a little and stay with him until his breathing is rhythmic and I feel confident enough to slide out of the bed and leave him.
Some times, if I linger very long I nod off to sleep.
Sleeping on the job.

This behavior has happened before and as I said chalked up to cold weather but now, even in warmer weather, it seems more frequent; especially in the last 3 days or so.
Today he has experienced this 3 times already.

No fever, nothing out of the ordinary for us so illness does not appear to be the factor.

It's distressing to Hubby when it happens.
He cant control his body movements and is unable to respond to me when it happens.
It's distressing to me also because I feel clueless as to how to take care of it more than I am, and my way feels like it's not enough.
Although, I have got a catnap or two.

Empty

I sit staring at this blank screen for days.
There is nothing to say, nothing new, just treading water.
Numb may actually be a better word.
How do I move forward?
When did I lose myself?
I KNOW how important it is to take care of me, yet I can't move to do it.
What is it going to take?
I feel like I'm glued to the floor watching the days whiz by.
One after the other.

I don't make a Dr appointment because I can't depend on the aide service to show up on time, at the right time or at all.
I don't hire outside help because Hubby's needs are more than just sitting much of the time and he gets agitated that he "Don't need no d*** babysitter.
He is adamantly opposed to any kind of day facility even for a couple of hours.
Both the Dr and I have spoken to him about it. 
I don't even go outside for periods of time because my fear is that Hubby will try to come looking for me and get hurt in the process.
Depending on family members is not easy, time constraints, distance, age, just a few factors working against me.
When did I make myself a prisoner and more importantly, how do I break the chains?

I hope this passes soon.
I'm getting concerned.

It's not all bad

Oh, there's sunshine,
Blessed sunshine,
While the peaceful, happy moments roll;
When Jesus shows His smiling face,
There is sunshine in my soul.

YAY for warm air and sunshine.
Please remind me come mid July and Aug that I said this! ;-)

Hubby had another good day. Not as good as yesterday but still good.
He even attempted to go outside with our 3 yr old grandson and me, so we could feed the birds.
I asked Hubby if he wanted to go with us after grandsons squeals from my suggestion subsided.
Grandson and I laid on the bed looking at the ceiling while we waited for Hubby/Pappaw to come out of the bathroom. When he did, he needed a little assistance which we provided. Grandson retrieved Pappaws shoes for him then ran to get his own sunglasses so he could "have glasses like Pappaw".

Pappaw shuffled to the door and Grandson bounded out with seed cup in hand.
I waited patiently for Pappaw as I held the seed bags.
When we finally made it outside, Grandson and I waited in the yard as Pappaw made his way to us.
Smiling Grandson told Pappaw, "Come on Pappaw."
Pappaw informed Grandson that, "Pappaw moves kinda slow, Big Boy".

To which Grandson declares, "Walk faster".
I laughed so hard. Ahhh it was obvious what needed to be done!! Why haven't we thought of that?!! LOL!!

Still laughing I told Grandson I better help Pappaw, so I traded hands for the birdseed and took Hubby's arm.
Grandson, walked over to me and said "Here Happy" (my grandma name). He handed me the seed cup. Now I'm thinking he has lost all interest in the birds now that we have taken so long and he is leaving me stranded with the seeds and the cup to do the job myself while he runs off to play or find some mischief. Either way they mean the same to him,
But instead, Grandson walks to the other side of Pappaw and takes him by the hand as we walk.

It was a priceless moment.

Surreal

First we had the turmoil of potentially severe weather that included tornadoes.
We ourselves were fortunate enough to have escaped the full brunt of the storms.
Now we deal with flooding from what seems the never ending rains.
It doesn't seem right that Arkansas should feel this cold in May, but here I sit wearing a jacket and running my heater.

As strange as it seems about that, I find myself in what feels a stranger place.
Perhaps it's the change in the weather, Hubby too has had his fair share of ups and downs lately, so it's possible.
My strange feeling is that my life feels out of place.
Like I'm disconnected from it and it's all a dream that I will wake up from.

Days I think I'm walking in slow motion and just going through the motions of living only to find that the days are whizzing by and I haven't done much living.

Today was no exception.

Hubby over the last few days has taken another up trend.
As much as I appreciate these mobile days I'm always waiting for the bottom to fall out.
But while it's good, and he isn't talking about moving away, I'll take the good.

Remember the rain? Apparently Hubby forgot it was raining and he insisted that we were going to town after the "wash woman' (aka personal care aide) left. Hubby didn't want her help with anything and sent her to another room until her time to leave came. Afterward he dressed himself; all but his shirt buttons.
I thought, when he see's it raining he will change his mind.

I shaved him, at his request and combed his hair.

He put on his coat and hat and proceeded to the door. He kept asking me if I was ready.
Yep, pants, shirt, ponytail, shoes, no makeup. I was ready to meet the world.
I grabbed a jacket; he didn't change his mind.
oh well it was raining.
I asked him if he was ready he answered "Yes' then realized he needed shoes.

I took the wheelchair out at his ready to ride to the car.
He refused and walked, slow, but walked.

I loaded the chair then made sure his door was closed and got in.

I always get nervous when Hubby leaves the house.
I never know what he may have up his sleeve once we make the 6 mile trip to get to town.
He had no plans so we went to the store for milk.
He waited in the car.

When we left he suggested we stop to eat.
I drove to our favorite eating establishment but they were closed.
We drove a little to see the flooding and headed to another place to eat.

We had a nice leisurely late lunch and pie.
We sat and smiled at each other with no conversation other than what he would like to eat.
I tell him my order, Hubby has the same. Sounds good to him.
While we sat there I stared at Hubby. My mind thinking, how many more good days like this? Will this be my last time to enjoy his company out? Does he wonder the same things?
I felt like at that moment I came face to face with Hubby's mortality and I wanted to cry, instead I stared at him soaking up the peaceful quiet and grateful I was there.

Melt down occurred and I saw it coming with Hubby's announcement of being tired.
He tried to get to the restroom without assistance but I insisted and he willingly accepted.
I held his arm as we walked and I held doors for Hubby. We eventually made it back home. A wheelchair ride in and Hubby undressed and settled in his bed.
Within an hr he declared he was hungry and wanted a sandwich.
After the next 2 he wanted to eat again so I fixed his plate for supper and got his lemonade for him.
He ate it all. He even came in another hr later and raided the refrigerator.
He is definitely going to need a dose of Miralax!

It's 12:15 am and here I sit still. Enjoying the recap of the day yet at the same time questioning if the day was real.
I wonder if I'm the only one to have this disconnected feeling.
I wonder if it's normal.
How would I even know, since nothing around here is normal.

Remarkable Day

Lewy Body dementia is such an odd duck.
The fluctuations between good days and bad come without warning and stop as they please.
I suppose that's the reason many caregivers of Lewy Body consider it the roller coaster.

Take for instance; 2 weeks ago Hubby was down, completely down, physically, mentally and verbally.
But yesterday, 180 degrees.
For the past few days he has kept me on my toes trying to keep up with him.

He has wandered all through this house. Mainly to the kitchen and back to fill his desire to eat. Within a couple of hours Hubby is claiming hunger and makes another trip to the kitchen or asks me to retrieve something for him. I find this interesting because when I say to him, "Again?" He will respond with, "What do you mean, again?"
Hubby will have forgotten he had already eaten. I ask if he feels full but he claims he does not.
He even eats the oddest things. One day I found him leaned over the counter applying mayo to a piece of pepperjack cheese and eating it. ewwwww was my initial silent reaction after I figured out what he was doing. I stood there and watched him working tediously to get the mayo squeezed out of the container onto the cheese slice.
I chose to remain silent about his job and just let him be. He struggled due to the shaking he has, but he did it, and in a way, I was kind of proud that he did. Hubby looked up at me and I just smiled and walked away to finish my chore.

Hubby has been awake more than he has been asleep, that's very uncommon.
The confusion is still prevalent but when Hubby has 'good days' he forgets he has problems and his desire to move away and live alone resurfaces. I stopped arguing, for the most part when I remember not to get sucked in. Hard to do some times but I am better at it.

He has been more playful with niece and grandsons. One time, 3 yr old grandson was chattering away in his 3 yr old voice. Hubby, in a high pitched voice, leaned over to grandson and said " You have a squeaky voice!"
Not only did it scare grandson, it scared me! Grandson stared at his Pappaw and then fell to the floor like a possum playing dead! We laughed so hard! Good times!

Hubby was supposed to have a Neuro appt on Thursday. At the last minute they canceled on us. Hubby asked if we could go eat. I agreed it was a good idea to get out even though I was nervous about taking Hubby out due to past behaviors. Hubby was having such a good day that he walked all the way to the car without his walker or needing a ride in the wheelchair. Of course that sounds easier than it was but he did it.
Once we got to his favorite eating establishment we ran into a few of his old friends. He remembered them ALL!! I wasn't sure if I should have been happy he did or mad because he doesn't remember me LOL!

Just before we finished eating I could tell Hubby was beginning to experience some melt down but he wanted to visit another friend so we did that too and a third before we made it home. Hubby asked to go back home of his own accord and by that time he was pretty much slipping fast. We made it home without experiencing any distressful behaviors. Hubby needed the wheelchair ride back to the house from the car and went to bed. He has pretty much been wiped out ever since. Only waking when I bring him something to eat.


Sometimes I wonder if the weather has an effect on Hubby. We've had some severe weather pass through our state. We were blessed to have only had to deal with mostly rain. As tornadoes neared us they seemed to dissipate or pass around us. Others were not so fortunate in our state and throughout the US. My heart hurts for them as I have seen this type of devastation first hand. Many prayers for them as they try to piece whats left of their lives and belongings together.

Hurry

Riding out severe weather threats and tornados is a LOT easier than riding out frustration.
This too shall pass.
sigh

I got nothin'

Lately I feel like I'm the busiest person I know and I have nothing accomplished to show for it!

Things with Hubby are on smooth ice.
Nothing better, nothing worse just the same.
All the days are the same.

You know what?

It's kind of nice.

My Day in 3 Words

Caregiving had a bumpy night last night but no big deal, honestly. Just a disruption to my sleep but, water off a duck’s back this time.

Later in the day as I was tidying up and putting away laundry, I passed by Hubby who was eating some lunch.

I looked over at him and smiled as I was passing.

He smiled back and said,

“I love you.”

Pop Goes the Weasel

When you were young did you ever play with a Jack in the Box?You twisted and twisted the handle to play the 'Pop Goes the Weasel' song knowing full well that 'Jack' was going to pop up and every time he did you still jumped.
There were times if he wasn't put back in the box just right; after the 'pop' part of the song, there was disappointment when the lid sprung open and 'Jack" never appeared.
Some days this is how it is with Hubby and Lewy Body Dementia.

After Hubby's fever the other day he didn't have the 'bounce back' I was expecting,
the lid opened,
but no pop,
until,
yesterday and today.
Sun- Hubby was unresponsive
Last Night -Hubby talks about his problems with Lewy
Sun- Hubby cant walk
Last night and Today- Hubby has walked all over the house
Sun- Hubby doesn't eat and when he finally does he must be fed and all drinks must be held so he can drink through a straw
Today-Hubby has a good appetite. Too good in fact. He's eating everything he can find.
Sun- there is no way Hubby could have assisted with a sink bath (his normal bathing now for quite a while) Today- Hubby gets INTO the shower to get cleaned up
Sun- Hubby would barely open his eyes even when spoken to
Today- Hubby tells me he thinks his glasses are getting better. Yeah I'm not sure what that means either.

So I was hoping Hubby would  'pop' back right away and he didn't. I was disappointed. I feared there would never be the 'pop' this time.
But through the power of prayer, I whined enough for it, Hubby got better, if I can use the word better.
Oh he still doesn't remember that we got married and he isn't sure exactly where he is most of the time. The same cognition problems are there. I don't notice an increase in those. The 'people' I cant see are still here. But Hubby is better in that he is calm, accepting. Not as agitated, even cracking jokes.
Just last night he was talking to me about his illness.
I am honest with Hubby about it. I am matter of fact and I don't give excess information.
Just the facts, mam. And then I let it go unless he has questions.
I assured Hubby that I would do everything in my power to care for him and keep him safe and comfortable at home.
I think he is most satisfied with the hard time thinking diagnosis and blocks out the rest, but hey, as long as I know, it's OK.
Some time had passed after this discussion and Hubby said something that didn't make sense.
I think he realized it because when I asked "What?", he laughed
He said "I thought you were tracking me on my mind."
I just looked at him, smiled and laughed.
Hubby grinned real big and laughed too, saying, "Oh, just shut up!"
We laughed really hard.
It was a great night.

POP! Went my Weasel when I stopped to tie my shoe.

***Now that I got that off my chest ***

Whew.

OK. I seriously feel a little better after lodging my complaint with the complaint department (aka my online caregiving friends)
You guys understand and don't judge when bad days are had. When emotions are sitting right on shoulders.
You have walked the path of fear and frustration and nerves (the good and bad kind)
You are quick to offer support and encouragement. My prayer warriors run to the throne, my finger crossers even cross their toes, my well wishers wish deeply and wholeheartedly and my pixie dusters sprinkle pixie dust (which I like, by the way)  by the bag full.
I can't imagine what it would be like to travel the journey without you all.
I am a blessed woman and I so appreciate YOU!

Today Hubby struggles beyond behavior.
Perhaps the oncoming illness made it's presence known in the form of noncooperation and  hostile remarks.
Hubby has run a fever.
Fever and Lewy Body Dementia do not mix.
One of my greatest fears is fever.
Fever tends to cause more problems.
Hubby's poor brain does not need the 'baking' that seems to happen when fever is present.
Fever makes Hubby more confused.
No, that's actually an understatement.
Hubby is just not there when fever is.
Hubby can not walk, rise, sit up, move, respond.
Hubby can not cooperate and must be physically manhandled for everything including bathroom care.
This is only our second bout with fever since his diagnosis in 2007.

Perhaps Hubby's swift 'drop from the cliff' coupled with the encouragement I received made me a little more accepting of his recent behaviors and my helping lay aside my  feelings of defeat.
Maybe God knows I work well under pressure and I'm always up for a challenge so He knew a major change would rally me to action.

Either way I have a new found resolve to keep going and persevere.

Today Hubby was unable to respond to my verbal directions that actually had to be modified to physical limb movement using both, hands and feet.
Let me go on record, I am NOT a very good dancer!
Oh I'm great in the fast paced, on your own, need the space or you get hit style. But the close up, move together in rhythm needs LOTS of work!

So are you up for a smile moment?
I actually found one. Had I not been looking I would have missed it.
After getting Hubby up out of bed, for wheelchair transport, I was able to get Hubby onto the toilet. I left him there to care for the bed linens.
Since the toilet seat is a handicapped one with rails/ handle bars/ whatever you call them, I felt comfortable to leave him there while I attended the bed and he did his business, or what was left to do. He was gripping the hand holds as I walked out. A few mins later (yes I have learned how to make a bed quickly) I walked in only to find Hubby had leaned back too far and was sliding off the seat!! Stupid stupid me!! OK enough of that!
I rushed to Hubby and was having to speak loudly to him and repeat his name several times in order to get him to even respond to me. I seated him upright and started the underclothing application.
But couldn't understand what I needed for lifting feet.
I was finally able to get his hand on the hand rail I installed on the wall and pull him to standing. When he raised to his feet I said loudly , "Honey! I'm going to  pull your clothes on!" Once accomplished I tried to get him in the wheelchair. The death grip he had on the rail was almost impossible to loose. Over and over I repeated my request and saying his name at times. I was sweating and struggling to turn him but he wouldn't let go of the bar.
I finally pried his hand from the bar and he grabbed me. When he did he grabbed my side, then my pants and started pulling on them as though they were his and he needed to remove them for toileting (Smile moment). I got tickled at this and I took a moment to pray for the strength to accomplish the task and him to be aware enough to help.
I don't think he was ever aware enough to help but I did have the strength to accomplish the task. I'm not sure how I got him in the chair but I did and finally was able to get him into bed and settled; For now.

Hubby hasn't eaten all day despite the deliveries of food. That's OK, I pushed the fluids though and offered and he just ate a jello fruit cup.
I had to hold his cup and straw and feed him because he can't do it.
Tomorrow is another day, I'll make it through.

Some Days

Some days I just want to scream
Some days I just want to shout
kick
stomp
run away
cry
twirl around like a tornado
throw things
wail
be the mean girl
sit down
and give up
Some days I can't think.
I can't find the energy to exert on it.

I haven't thought well for a few days
I didn't even want to type right now,
but I didn't want to be silent, more.

I'm tired all the way to my heart.
I'm feeling empty.
I want to smile and laugh but the efforts feel forced.
I want to offer encouragement to others but I can't find the words.
Brain fog is rolling in and I need to combat it.
I try to read my Bible but the words all run together.

It's days like these I wonder. Will I survive caregiving?
And if I do, what will I be like at the end?
That thought frightens me.

I'll dig out of this hole I feel like I'm in.
I'll look back at it and say,
Some days I sure could be whiney

I don't know what that means

Hubby and I have been trying to converse about a couple of things.
The confusion that comes with his Lewy Body Dementia has really taken a forward jolt leaving me to scramble for a thesaurus when trying to talk with him.

His conversations are nearly nill anyway but after shortening compound sentences to singles; then single complex to simple; and simple to "old western movie indian"; and sometimes, just single words with a look.
I do struggle to make connections at times.

For instance. Hubby asks me every day what day it is. Sometimes he asks me more than once. I can usually respond with the correct day. I say usually because sometimes I get my days mixed up too but that is completely beside the point.

On Wed, Hubby asked me if it was a diff day. I didn't think too much of the wrong day conversation as we have had it often and I tell him the day. Wed was the correct one. We talked about Wed.
So, today is Wed?
Yes, today is Wed.
What day is Wed?
Today is Wed.
No, I mean what day is Wed?
Oh, Today is the 30th of March
What is today?
Today is Wed.
(confused look) I don't know what that means

At this point I say that Wed is the middle of the week and a day that the aide comes.
Hubby seems satisfied with this answer and I think nothing more of it

Today, there was a flurry of activity in the house.
2 rambunctious grandsons hungry for food engaged in a discussion of some type with their mother.
The kitchen is located off of our bedroom.
Hubby motions for me to come over to him.
I approach the bed and lay beside him.
He asks me who's talking.

I tell him Daughter in law is talking to the boys
Hubby is confused as to who daughter in law is. This is not new to us and I don't feel so alone in the forgotten pool. (Welcome to my world daughter in law)
He asks what she is doing
I tell Hubby she is talking to the boys about lunch
Lunch?
Yes, it's lunch time and they are hungry.
What?
The boys want to eat.
(confused look)
Daughter in law is making food for the boys.
(confused look) What is she doing to the boys?
Feeding them.
Why?
They want food.
(silently Hubby stares at me and says) I don't know what that means.
It's OK, she can take care of it.
(Hubby looses his confused look and closes his eyes as though relieved)

Oh Hubby, I am grateful you feel confidant enough to tell me when you struggle to understand.
I'll understand for both of us and make it OK for you.
OK enough for you to close your eyes and feel like everything is OK.

Another day starts at 4 AM

But not like the first.
One of the features of Lewy Body Dementia is REM sleep disorder.
Hubby acts out in his dreams hitting and punching.
Most people during dreams are in a "frozen" state.
Ever have a dream in which you tried to get away or do something and couldn't move?
Well that's because you can't move. Your body is semi paralyzed.

With Lewybodies the poor dreamer is in a real struggle of falseness and reality.
False thoughts in the form of dreams and the reality of attacking, hitting, punching and/or kicking.
All dreams seem to be violent in nature which at times can be distressful not only for Hubby but for myself when I'm on the receiving end of the nightmare. You would be distressed too if you were waken from a sound sleep with a smack upside the head, I'm just saying.
And I've mentioned before about the poor bedside table.

This morning was no different than any other REM sleep moment other than the jolt awake did just that,
woke me up,
so here I am.

Since our last 4AM fall down Hubby has been doing OK. He is sore more than anything.
He requires more assistance in rising from the bed due to the soreness but other than that, No marks across his face and only minor bruises on his arm where he hit it on something.
He has resumed his sleep pattern of most of the time.
As for me, for some reason, I am just beat.
I think for the last 2 days I have been more tired than usual.
I find myself napping for even 10 mins a few times throughout the day.
I will chalk it up to the dreary cold weather we have had again.

SO I am happy to report that we are in a holding pattern and I'm quite happy with that.
Today Hubby's aide should be here for 4 hrs and I have no errands to take care of or groceries that just have to be purchased so I think I shall call a friend and see if she would like to have lunch with me.
I need a little down time when caregiving is on a back burner of my mind and not a front runner.
I don't get to do that often.

It's a good day, no fooling, and I hope you can say the same. :)