Public Enemy Number One

That would be me.

Things here have been on the downhill side at a fairly slow decline with the occasional bump along the way.
Unfortunately the pace has quickened in the anger area. Since we've dealt with PTSD issues for the majority, Ok truth be told, all, of our married life Hubby's anger issues seem to be old hat.

Yet, I find myself a little worn down, OK OK a lot worn down by his anger. Before, I was always able to reason with Hubby. He would take what i said and dwell on it a while then re evaluate and although he would never apologize for irrational, inconsiderate and obstinate  behavior he would at the least become calmer. Not anymore. There is NO reasoning. He is assured that I have convinced everyone, including an entire community of medical professionals that he is ill when there is NOTHING wrong with him. His anger towards me about this coupled with his anger towards me about the guardianship and him not knowing anything about it and how I'm getting away with stealing everything he has (insert sarcastic laugh here) is escalating.

So here is where we are.

We were expecting company from out of state over the Fourth of July week. hubby and I had discussed it and were looking forward to the visit. Me especially since it was my sister I hadn't seen in a year. <3
Hubby had been talking about getting a needed haircut for a few days prior to their arrival yet never felt like going until that particular day. All seemed to be fine, we were in "normal" bounds of behavior and attitude so a trip to town for a haircut was going to be a good thing. We had plenty of time to do that AND check on a new washer as ours bit the dust. :( RIP washing machine, you served me well.

Before we departed to town Hubby asked me about his pocket money and was annoyed he couldn't find it. I was able to retrieve it and he seemed satisfied. Upon our town arrival we barely managed to walk inside the building for the haircut. God is wonderful and the place was empty so no waiting for us :) Hubby got his hair cut and we slowly made our way out of the building and back to the car. As we left I made a turn and Hubby asked me to go the other way. As he likes driving by certain places to see if he can spot friends vehicles I had no problems making a turn around and hitting a different road to get to our destination as hubby did the look out. But as I tried to enter the interstate, Hubby said he wanted to go somewhere else, I THOUGHT he had spotted a friend so I pulled out of the lane and proceeded but as we came close to where I thought he spotted the friend he told me to keep going. At that point I decided to pull over and get the full story of where he wanted to go. My lane change and turn attempt resulted in another car fight over the keys. His quick removal of my keys from the ignition and jerking on the steering wheel and shifting of the car gears found me fighting to get into a safe place. Once we came to a complete stop the wrestle for the keys without causing injury to Hubby, and believe me, the thought to knock him out crossed my mind, just an ugly reality fact, ensued. I was able to retrieve the keys but ended up getting hit upside the head and face in the process.

I made a call to the local police. The same dispatcher from the time before and the same officer made me giggle a little as to the ridiculousness of the situation. What must they be thinking about us?

Hubby  informed the Officer that he wanted to go to the bank and get his money I was stealing. I showed the officer my guardianship papers even though he already knew the situation. He read them and explained the same thing to Hubby that I did about the bank. He told Hubby he couldn't go there.
Hubby asked where he could go
Officer asked where did he want to go
Hubby said out in the middle of the highway
Officer said he couldn't let Hubby do that
Hubby said he wasn't getting back in the car
Officer asked Hubby if he wanted another family member to get him
Hubby said yes
Officer asked who he wanted
Hubby named a friend, then said stated that friend didn't have a car or phone.
Officer asked if I cared to take Hubby for a visit.

I had no probs letting Hubby visit so I decided to scrap the washing machine search and take Hubby to a cool down place.
When we arrived, Hubby shuffled inside for his visit while I waited outside in the car.
A gentle breeze on occasion made the 90 + degree heat a little more bearable while I waited and listened to the radio.

After an hour and a half had passed someone else pulled into the driveway to visit the gentleman. As he passed me sitting in the car he asked if the man was home. I said yes as my husband was inside visiting. The man went to the door and a couple mins later came back out. As he passed me again he said he did not see my husband in there. I panicked. Had he went out the back to leave and I didn't see him?!

I got out of my car and went to the home. I entered and he was right no Hubby BUT Hubby's shoes were sitting on the floor next to a recliner and friend told me Hubby had gone to the bathroom.
As my heart made it's way back into place I visited with friend for a few mins then Hubby made his appearance. I told friend about our expected company and reminded Hubby about them. To which he made a statement that he didn't care.

Apparently Hubby had decided to den up there and live. He felt as though he could because this was the same place he lived for a short time after he left me and the relationship with his girlfriend didn't work out.

I tried to reason with Hubby and friend who said Hubby could stay there and visit. (YOU ARE NOT HELPING! I screamed in my head) In my own heart I could not leave Hubby there for a several reason. Friend is physically incapable of caring for Hubby should he fall or need assistance. Friend has no phone to call for help. Hubby would have needed his incontinence items and these days getting Hubby to understand that he should NOT pull his pants off before he gets to the toilet leaves me many times with a wet floor to clean and rugs and towels to wash. I do not believe friend would want to deal with that. Although... just a thought ;-)

One last time I asked Hubby to willingly go and he one last time refused me. Sadly and embarrassingly I had to invoke the powers of my guardianship and ask an officer to come and remove Hubby from the house. I told Hubby that he was leaving me no alternative for the day and I explained what I would need to do if he refused to leave. He told me to do what I needed to do, so I did.

Officer was so understanding. He even said he had a family member go through this so in some way it was a relief that he knew my intent was not to bully Hubby purposely for my own enjoyment. It made me heartsick that the dignity I am trying so hard to retain for Hubby had to be taken away by me. If I was Hubby, I would hate me too :-(

So here we are. I'm beat down but not out. Licking my wounds and trying to regroup my thoughts. I tend to withdraw to think when I am that far down.
I have appreciated the kind words of concern for us when I have neglected my blog.
Some days things seem too ridiculous to be reality. How do you put it in black and white?

I bounce back. I always do.
My week long visit with my sister has me feeling a little rejuvenated.

If you converse with God say a prayer for us. We could sure use the peace of mind.
If you have some extra good thoughts and wishes I'll take all you have.
If we cross your mind, smile for us please. I need the extra help these days.

HUGS to you all
The caregiver road is long, and difficult but occasionally, a wild dandelion pops up in the crack and makes an appearance amongst the hard gray concrete.

Party Animals

If it wasn't for finding the humor in this Lewy Body situation I think I would be completely hospital bed ridden depressed.

We took what I believe will be our final trip anywhere, for any length of time. A 3 hr rd trip to celebrate our grandson's first birthday. I was SO excited and Hubby made the extra effort to be there. God Bless him!

We hadn't seen the kids since Christmas and other plans to see them have fallen through leaving me sad and frustrated. This time we made it but it was eventful. We also took Hubby's brother (BIL) who has Downs Syndrome. (His roll is important to this story also)

The first 2 hrs of the trip went well then the urgency of finding a bathroom hit. Of course it had to hit AFTER we passed a major gas station leaving me to try and find another.

The next exit found us in the middle of no where and no place to turn around on the expansive bridge over the water. Yes, WATER! EXACTLY what we needed to see and what my BIL wanted to talk about LOL!
I was able to do a U turn after I got off the bridge and go BACK over the water that again BIL wanted to talk about, to get us back on the main road.
A few miles and exceeded speed limit later a REST AREA Potty stop revealed a major problem with walking for Hubby. As if his brain wouldn't tell his right foot to catch up. Result, frozen, unsteady and extra slow.
Of course Hubby would have nothing to do with me suggesting I retrieve the wheelchair for him. He was determined to walk.

When we arrived at Daughter's home Hubby needed to use the bathroom immediately and then what seemed like every 15 mins. thereafter. The first trip required dry disposables so I whipped out my purse and WHA LA! Hubby was concerned about what to do with the soiled one but I had a plastic bag in there also and was able to tie it up inside and dispose of it in the trash.

Daughter, not seeing her father for 6 months, was surprised at just HOW much he had deteriorated. I actually speak to her about every day and she was aware but it's one of those seeing is understanding things. She was so overwhelmed she burst into tears. My poor baby :(
Son in law seemed to take the change hard also. I spread extra reassuring love all around. Tough job but necessary LOL! ;-)

We ate, had cake, opened gifts. (the gift i brought was the most liked - giggle) Whenever I wasn't making the potty run I snuggled and smooched everybody and breathed in as much grandbaby air as possible. BIL was waited on hand and foot so he was doing great ;-)

Hubby got lost a couple of times in the house. Twice he wandered into the kitchen, slow and unsteady, not sure what he was doing, once looking for a room, just didn't know which room. Hubby asked me about where all the doors went to and said no every time I told him. I finally asked if he was looking for the bathroom. The other time he wandered around and returned with a sandwich. LOL!

I helped Hubby settle on the couch and he needed a beverage. Our daughter went into the kitchen and I entered to retrieve the drink. As I was talking to our daughter who at that point was cleaning things up, I noticed Hubby's bottom teeth on the kitchen table.
She saw I had spied them and said very solemnly, "Yeah, I saw those"
I stared at the teeth and tilted my head as if  confused by them, gave her a wink and we BUSTED OUT laughing!!

I went into Hubby and asked him if he was having a difficult time eating without his teeth. To which he replied, his teeth were in his mouth and he flashed me a smile. Of course I stood there and asked, "Really? Even your bottom teeth?" To which he ran his tongue over his gums.

I shot a look to Daughter and again we Hooted and Hubby just smiled. Daughter handed me a baggie to put them in and Hubby decided he wanted the top ones out too so we put them in the baggie also. I put the baggie in my purse and announced I should be on Lets Make A Deal! Poor Son in law didn't know if he should laugh or cry.  LOL!

Preparing for departure we made a trip to the bathroom, said our final goodbyes, gave an extra squeeze to everybody and set off for home. We were all smiling.

I had the radio playing. Normally if Hubby is in the car it's on a OLD COUNTRY station since our musical tastes are so different. I'm a child of classic rock ;-)
BIL was buckled in the back seat and the song ELVIRA came on. I could hear BIL singing so I chimed in and we sang louder. Hubby got caught up in our fun and started clapping to the beat. Our ride home was fun. We made a stop for supper and as it was getting later in the day the normal nightly confusions and mobility issues coupled with what we had already experienced made the last hr of the trip a little uncomfortable but we made it. :)
The walking difficulty and freezing have continued. I wonder if they will now stay.



I feel so blessed to have had a good day. Lately they have been full of Hubby's anger towards me. His behavioral issues continue to plague us. I am still waking in the middle of the night to do laundry and mop floors.
I desperately needed a good day to trump those bad ones.

Giddy Up,
a  Oom Poppa, Omm Poppa, Mow Mow
Giddy Up,
a  Oom Poppa, Omm Poppa, Mow Mow
Heigh-ho Silver, away!

I did not... **

**some of this contains an adult topic

I  did not...

give you the disease that eats away at your brain and causes your problem

take away or have your drivers license taken away. I did encourage you not to drive and put yourself and others at risk.

steal your money.

run your friends off.

convince and entire medical community that you are sick.

make plans to keep you locked up at home.

hire people to keep watch over you, OK yes I did but not the reasons you think.

Behavioral issues are cropping up left and right anymore.
Hubby is so angry with the world and he blames me for all his problems.
Maybe because I'm just about the only one he sees besides his aide or the private pay lady I hired for twice a month.
He is so resentful of her that if he doesn't want to deal with them he stays in his room and avoids them
Believe me I am giving it all I can and then some to be sure and separate the man from the disease.
Sad part, Hubby has always had a hateful and angry streak about him so deciding where he and Lewy are joined has presented itself a challenge.
Hubby tries to engage me in a fairly normal argument. Feeling as though he has valid reasons for being upset for a very brief moment them slam the brakes on in the middle of his argument, never being able to get the words out. Talking in circles leaving me much of the time confused myself as I try to put together the bits and pieces that are actually related. All I know for sure is Hubby is angry.

The frustration for Hubby about his situation combined with the almost constant incontinence hasn't helped.
I have been up so many times at 3 AM do laundry and mopping floors.
Now I get woke at midnight or so to finish the never ending argument that never finishes.
Mostly of the time I remain calm and cool, just very tired. My frustration does seep out occasionally. 
The continuous tension has me wearing thin in places. Mostly my knees, as I pray a lot.

Just last night Hubby woke me at midnight to inform me he was dressing and leaving. He had business to take care of at the bank and he was getting his car (not even on the property) and he wasn't sure where he was going but he had to get things straightened out. I reminded him of the time and the day. He didn't care but did acknowledge that he would have to wait until Monday to go to the bank.

When I reminded him that he closed his bank account he denied ever doing it.
I was thinking, Hubby, don't you remember the police had to be called and all the financial problems we ran into?
The bank account is now in my name.
Hubby proceeded to put on his shirt. I remained calm and asked since he was dressing, if he would like to go out and get something to eat. IHOP is open 24 hrs. I was hoping for a distraction. He declined.

Good I didn't really want to get up and dressed anyway but I would have.

**Hubby came and sat next to me on the bed announcing that he knew I didn't really care about him.
I tried to be reassuring that I did love him and I was trying my hardest to keep him comfortable and safe. I wanted him to be able to enjoy his days. All of this fell on Lewys ears.

Again he insisted he knew I didn't care about him. When I asked why he felt that way he stared at me and said , you know.
 So I had to surmise that he was referring to our non sexual contact. Contact we have not had for 2 yrs. Contact that ended the night he rolled over on me and ask me what my name was.
That joke became my reality at a very intimate moment and it hurt, a lot. Still does.

I try to explain the dynamics of our relationship. The way it needs to be now. I suppose more for me than for him. I try to explain his health issues and medications that contributed to our dysfunction. Hubby makes childish faces at me and unintelligible mocking sounds. And he rolls his eyes. At that point I would have liked to roll them back to him.**

Hubby changes gears and declares I am stealing all his money. When asked why he thought that he said "Didn't you get new clothes?
Yes, I felt they were necessary since I've outgrown all my other ones and summer is upon us.

Now I'm a little annoyed.

Hubby's response "yeah right"
I try logic. (I KNOW I KNOW but I had to try) I had also bought him a new pair of sleep shorts. I thought he might like to wear them since the weather was warmer and he has taken to not even wearing clothes some days. Besides, I had spent more money on pull ups that he pulls off as soon as he walks into the bathroom door leaving me a wet mess to clean up and rugs and towels to wash.

When asked why he does that, Hubby says so they wont get wet. hmm :-/

Calmer now, The point is, Hubby, what I buy is a benefit for this house, our well being and your comfort.
Besides, now that I have to account for everything I spend to the courts I am a little more cautious about expenses.

Again Hubby stares at me. Rises from the bed and goes to the bathroom. This tine he doesn't pull the pull ups off too early. After a few mins Hubby emerges from the bathroom and all is well with the world again. He crawls into bed and sleeps. So do I.The time was almost 1:30 AM.

On an up note. Thanks to one of the members from the Online Spousal Support group I learned a little bit about an organization called Home Instead It's another home care agency that provides companion care as one of it's services. We have a meeting scheduled for Tuesday to see about getting Hubby a male companion to just take him to town and hang out with him. Maybe even take him fishing sometimes. Anything that will get him up and out I believe will do a world of wonder for Hubby. Or at least I want to believe it will.

Sometimes you feel like a nut

So, Hubby's been sleeping for 45 mins straight after a night of consistent ups and downs. Stumbles and bangings (NO falls last night) Waking me by pushing, poking, digging, spatting, and squeezing me. Trips to the bathroom every 15 or 20 mins and me repeating, don't get a drink every time you come out of there.

So again, sleeping for 45 mins straight.
I just want to walk over to the bed and shake him real hard and say, "You need to go to the bathroom!?" Then poke him until he gets up.

But I won't.

I get a 4 hr respite today.
I may sleep in my car ;-)

Someone Hit The Brakes

"What time will the brakes go up in the morning?"

"Huh?"

What time will the brakes go up in the morning?"

Hubby I have NO idea what you are talking about. SO he repeated it a third time with an annoyed tone.
This was such a random question that had nothing to do with anything on TV or anything we had talked about very recently. I was confused.

I asked him to explain what he meant by brakes.
OK apparently to Hubby I was a complete idiot as he started telling me, in his condescending tone, what brakes were.
Of course that tone didn't set right with me so again I asked what were the brakes attached to.

Hubby just stared at me and said BRAKES!

Seeing his frustration in trying to communicate I started the 20 questions. It usually helps but then Hubby got glass eyed and refused to talk about them anymore.

The rest of the evening went along fairly well. No more mention of brakes.

I do wish I would have had a set of brakes for Hubby though.
We have had some tough nights. Plenty of confusion, nothing severe, just the normal house stuff. Me stuff.
I think it's odd that I now consider that all normal.
The "other people" were here. (Of course they show up AFTER the yard is mowed)

Hubby also informed me that he doesn't think us living together is going to work out.
When I asked him why he said it was because we just want 2 different things.
He asked if I thought we could find someone that would move in the house with him.
To which I informed Hubby that I wasn't moving out and he said "Oh, OK." just like that.

Last night Hubby took a couple of falls, one was fairly bad and he is going to feel the effects of it for a few days. The inspection of body parts and their ability to move revealed nothing broken, just skinned and cut. One broken vein under his arm caused a pooling and raising of blood under the skin but it never got bigger or spread.
This morning it was completely flat but it will make a huge bruise.
My poor Hubby. I wish he would stay still at night.
 Incontinence issues keep him bathroom hopping.

Hubby has also started a new thing I am not too sure I am happy with.
This once starched and pressed, no hair out of place man has turned into the underclothes wearing weekly bather that barely wants to shave. Now he has decided clothing optional which has me saying hmm I don't think so.
He thinks it will help with the incontinence and keep his underclothes dry and he will not use as many incontinence aids.
He doesn't think about the sheets and the floor.

Mopping the floor and doing laundry at 3AM isn't really my idea of a good night sleep.
That chore added to the night time wakings and the jolted wide awake falls makes for brain sludge the rest of the day.
On the positive to that, I DO appreciate my washing machine and dryer :)
singing: You spin me right round baby right round... ;-)

Tomorrow I should get a 4 hr respite. YAY! I believe I shall find a friend to lunch with.

You know, the days all used to merge together for me. One was as interesting as the other. With the 4 hr respite now, Fridays will have a whole new meaning. I'm also hiring private sitting care for a couple of times a month. Back to back with the aide may be just enough of a recharge break I need for me! Look out Fridays!! :)

Dear Hubby

Dear Hubby,

I write this as you sleep peacefully for a change. I suppose Lewy had you busy enough last night and the tumble in the bathroom floor this morning mixed with the inability to understand how to get up has you exhausted. I understand. I'm tired too.
I am grateful you have strong bones and no injuries.

The reason I am writing you is to ask you if you would please relay a message to Lewy.
I'm tired, today very tired. I'm tired because Lewy had me up the majority of the night and refused to rest.
I'm tired because Lewy wont listen to me when I ask him to let me help get and do things I know will require help since he is pretty unstable and falling is a risk. I am afraid he will hurt you.
I'm tired of Lewy getting out of bed and wandering around, or should I say stumbling around. He has already broken the closet door twice banging into it.

Hubby, will you please tell Lewy to leave me alone while I am sleeping.
Please have him stop pinching and poking and grabbing and spatting me.
Tell him I do not need to be held in a vice grip every time I move. I am NOT going anywhere.
If it isn't too much to ask I would like to be left alone for a few hours in a row.
And I especially don't like the morning rough ups like the one that had me out of bed at 5:30 this morning.

Lewy doesn't need to order anything from me before I have had at least 1 cup of coffee.
Lewy needs to understand about me and my NEED for coffee.
Yes, I KNOW you understand that :)

Lewy needs to be informed that clothing is fine at a minimum as long as he is covered.
It used to be fun to follow a trail of clothing that led to you but Lewy just drops clothes anywhere and quite frankly I only consider it a mess to clean up in more ways than one.

Oh and speaking of clothing, Lewy really does NOT need to take a pair of scissors and cut holes in every pair of your socks. I promise, the socks are not that tight. The circulation in your legs will not be cut off and you will not lose your foot. If Lewy would just stop hindering you from walking around a bit every day I would almost bet the minimal water retention would go away.

Hubby, would you also see if Lewy would be happy to eat something besides biscuits and gravy. Yes, I understand that Lewy gets OCD about some things and that they are easy to make but that's just it, they are easy and GOOD!! My waist line could really do without the temptation. Thanks Honey.

There is something else also. I don't want Lewy to get involved in my night time television shows. He can really get on my nerves trying to incorporate things from the show into our lives that have nothing to do with us. For instance, the other night while I was watching CSI, Lewy wanted to know if we needed to talk to the Criminal Investigation Department. Were they coming to see us? How would they get in the house? Do we need to see them. Am I sure they aren't coming? Wasn't that who I was talking to earlier? Honestly, it's just a show, NOT our actual lives. And NO we have NEVER been to visit anybody on the "How did you get so rich?" commercials. Really honey, I have cut back on so many types of shows already.

Although I have my doubts that you will be able to get through to Lewy, I do appreciate that you would take care of it if you could.

And Honey, I just want to remind you, because I know Lewy keeps erasing it from your mind,
I LOVE YOU!!

You know you're loved when...

At a recent follow up Dr appointment for Hubby I asked the Dr if he would order a test for UTI (Urinary Tract Infection.)
Hubby complains chronically about back aches but even more so lately and his complaints seem localized.
With his increased confusions and the miserable nights we seem to be experiencing lately I thought it would be in our best interests to know if infection was present and jump on it before it wrecked too much havoc to recover from.

Dr was very supportive of the idea and set up the order. When we finished our appointment with him I took Hubby to the lab area where he had just been for blood work. Hubby wanted to know why we were back, so I explained why we were there.
 Nurse brought Hubby the specimen cup for his urine sample and a cleansing cloth to use. She explained to Hubby what he needed to do and he stepped into the rest room. I patiently waited in the wheel chair for him to exit.
 Upon hearing Hubby exiting the door, I hopped up and Nurse rounded the corner and held the door for Hubby who was struggling to exit the big door and get seated in the wheelchair.
 I asked Hubby where his specimen cup was and he pointed to the bathroom.
 Nurse offered to retrieve it and reached into the restroom.  She withdrew her arm with an EMPTY cup.

Hubby had forgotten what he needed to do.

Nurse and I just looked at each other.

Nurse looked at Hubby and told him he forgot to use it the cup.

Hubby just stared at Nurse.

I asked Nurse if we could take the cup home and I would return with the sample. She fetched another cleansing cloth and a plastic BIO HAZARD zip bag. She placed the items in the bag and handed them to me.

Hubby and I left and decided we wanted to eat. Since the Dr appt was at 8AM and it required fasting lab work, Hubby was hungry and biscuits and gravy sounded like the thing for him.
We always stop at the same place. I like it there due to the small size and limited amount of people that can be assembled at one time. (compared to a large restaurant) The waitresses treat us superior, the cooks know us, the owners visit with us. It's a family place that suits us quite well. He shuffled inside and into a booth.

We ordered our breakfast and finished. Hubby decided he needed to use the rest room so he shuffled to the restroom while I paid the bill. I seated myself and waited for Hubby's return from the restroom. It seemed to take an extra amount of time but he finally emerged. The short hall seemed to be almost too much for Hubby to walk at one time. 2 times he stopped. I walked toward him and as he reached me he and I moved at a snails pace to exit the building. I offered to get the wheelchair but Huby insists he does not need it.
Why should I offer? anyone can see he didn't need it.(rolling eyes)

We exited the building and Hubby using me and the building for balance barely made it the length of the short walk to the parking lot. The owner of the establishment came out to help us but poor Hubby completely froze and was unable to move. I left him in the arms of the owner and scooted to the car and got the wheelchair out of the trunk. I wheeled it under Hubby and we were able to get him seated. I was then able to get him to the car and inside for the trip home.

We made a stop for tomatoes at the fruit stand and a trip by the post office which yielded more fruit than the fruit stand. FINALLY the rest of the income arrived! YAY!! GOD is so good!
I showed Hubby our good fortune but he just looked at me. A drive through the bank for a deposit and then home.

When we parked Hubby was able to exit the car and walk inside the house. Seems he was able to regroup a little on the ride home. I was grateful for that.
He was so exhausted that he took off all his clothes and spread himself out in the bed. I figured the rest of the day was over for us so I didn't press the issue about the urine sample and just left him be.

He slept off and on the majority of the day.

Today as I prepared to run a few errands while the aid came I asked Hubby to use the sample cup so I could drop it off at the Dr office.
I explained what he needed to do and left him to the job. With the mission accomplished I placed the cup in th BIO HAZARD bag and then placed the bag in the bottom of my purse for delivery to the Dr.

I hope Hubby doesn't have a UTI but at the same time I hope he does. That would explain the extra back pain, and confusion that we may be able to alleviate fairly quickly with antibiotics. It might even help with our night time issues.

You know you are loved when somebody willingly carries your pee around in the bottom of their purse! LOL!