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.

Showing posts with label Anxiety. Show all posts
Showing posts with label Anxiety. Show all posts

Friday, October 7, 2011

Still kickin

The passing of  Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.

What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!

The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.

I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.

During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.

Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.

But wait! the party didn't end there.

Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.


I prayed for Hubby to just go to sleep, I prayed for  the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.

My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and  peaceful.

Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.

It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.

Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.

I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.

Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.

I haven't blogged for what feels like an eternity.  I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.

On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)

A few funnies that happened I shall share from my FB status

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you" 
He says "What?" 
I repeat, he says "What?" Through laughter I say it one more time. 
Huobby says "Oh, she's like me, huh?" LOL!!

I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what? 
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!
Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :( 
Got out of bed at 4:20 
poured coffee at 4:30 
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)" 
My response, "Yes I need to get them to the cleaners" 
He asks, "You need to get what to the cleaners?" 
I stare at him thinking, seriously?! 
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since. 
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally
It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do." 
Seriously Hubby?!?! I love you too!! LOL!!! 

See it's not all bad :)

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.

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.

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.

Thursday, July 14, 2011

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 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.

Tuesday, May 4, 2010


I started to say Lewy bodies have me feeling numb but realized numb is no feeling at all.

SO just what am I feeling?

Here's our update.
The hearing for Hubby's guardianship went well and I was appointed. As such I will now need to file an annual accounting of expenses and health update. I have no problems doing this. What's a little extra work ;-)

Seriously, I was very pleased with the proceedings and the Judge and the Bailiff were as supportive and helpfully informative as you could imagine. As I handled the case Pro Se (by myself) The Judge took me off record to explain some of the responsibilities of guardianship. The things I was allowed to spend Hubby's income on and the things I was not allowed to spend it on. It struck me as odd but understandable, as most spouses never have to declare themselves as guardians, that I was able to spend Hubby's income on His food but not mine. ALL expenses had to be for Hubby's benefit and Hubby's alone. The Judge in his kindness did smile and say he would grant me a generous salary for the 24 hr caregiving I provide.

The bailiff informed me of a couple of things I did not know of concerning the veterans. He is a retired Military and wanted to pass on some information he felt would be beneficial to both hubby and myself.

The first was a grant for "Special Adaptive Housing"
The second was a "Veterans Mortgage Life Insurance"

We do not qualify for the Life Ins due to Hubby's age.
I will do more research on the adaptive housing.

All in all I was very pleased with the outcome of the day and VERY appreciative of all the help.

We still have a ways to go until we get back to our financial normal. Hubby's biggest income is still floating around somewhere. We have yet to receive it and that loss still keeps us in financial distress for now. Savings (big laugh, should be called squirrel money) plowed through to cover last months expenses which are now due again for this month. It's a waiting game.

Now my life sits in limbo. Can't move forward can't move back. Numb.
Maybe that's a good place to be right now.

As for Hubby. Informed that a guardianship was taking place. Properly notified, Dr discussed it with him and Hubby even agreed it would be a good thing. Nothing done behind his back. He becomes confused as to exactly what would happen. He is under the impression that I will now keep him locked up. I tried to reassure him that is NOT the case. He actually became so upset that while his sister was here he verbally lashed out at her for no reason. While I was trying once again to explain the reasons behind the guardianship, his sister injected that it was so I could pay the bills. His reaction to the comment she made took me by surprise. At one point he rose from his chair as to strike her. I was floored. He said some very hurtful things to her. Bless her heart for understanding.
I would not have been surprised if the anger and hostility had been directed at me. It has been before and I can deal with it, but his sister who he has always admired and respected had to be on the receiving end of it. So sad.
She stepped away from the situation and went home. I called to make sure she was OK and she assured me she was. God bless her. I know that had to hurt.

As Hubby slips farther and farther the things I want to protect others from are becoming increasingly difficult. For the first time while talking to our son, Hubby called him by another name. I could tell my son was hurt by the tone of his voice but I don't think he would ever admit it completely. He tries to be strong for me. I try to be strong for my family. I suppose we can't keep them completely protected.

Wow this is such a depressing post so I shall stop!
Better start looking for the positive.