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.

Sunday, December 5, 2010

Tis the season...

...to get back to reality.
The responsibilities and increasing care needs of Hubby have brought me back from the online game escape I needed and took full advantage of. Juggling them both left one or the other lacking so I chose Hubby.
I know there will days when I will wonder why ;-)

I find myself struggling this year to get anywhere near the Christmas Spirit.

Perhaps it's the day in and day out of the same day, over and over and over again.

I should appreciate Hubby's emotional calm days.I'll take them anytime over the distress and hostile anxiety he has and can exhibit. These days are filled with confusion, repetition in deed and word. Mobility comes and goes. Mostly goes. Incontinence has increased to him not even trying to get up and go to the bathroom some times or sleeping right through it.

I bought a complete waterproof mattress cover at my local Wal Mart store. It zips the entire mattress and memory foam cover, in. I also purchased additional waterproof mattress pads for the bed in addition to the complete mattress cover

Another item of purchase for Hubby is a chair with arms. At Big Lots I found a perfectly sized tub style chair for Hubby to sit in as he eats. We have lots of stability issues and sitting on the side of his bed to accomplish the task is becoming increasingly difficult. Its a comfy little thing, the arms can keep him upright or propped as he needs. The only thing we need to adjust is the height. It seems to be a little low for Hubby so I will look for those bed risers. You know those things you put under the legs of your bed to raise it a few inches? I think they may be just the thing we need.

I do not recall if I mentioned we had a swallowing issue that has crept in to our lives on occasion. Less food consumed by it and pills not taken as often. We also encountered a self feeding issue once. Hubby could not feed his own self and I needed to feed him. This little chair will also come in handy for being able to sit in front of him to help with this should and when it arises again.

Yes, I think I shall like this little chair for its convenience and support and a little peace of mind. Maybe no more walking in on Hubby to check on him while I was preparing supper only to find that he was no longer sitting up on the side of the bed but fallen over and unable to raise himself. Initially I run over to offer and give assistance then I find myself chuckling at the site of poor Hubby like a turtle on his back. Yes I know, bad wife. I smile at Hubby and he usually smiles back and then I ask the smart question, "You need help?" We laugh and I get Hubby back to his original position.
 Hubby rarely ever calls for help anymore if he finds himself in a awkward situation. As a result I find I spend the majority of my day in the room with him. Ready to help at a moments notice. I sometimes wonder if this is the right thing for me.

Providing physical care for Hubby comes fairly easy.
I am blessed that I have the opportunity, health and means to do it.
I do see changes that need to be made before the providing becomes too difficult. I have placed myself last on the list of "dumb things to do". I have neglected my body and its proper needs for nutrition and exercise. As a result I am feeling the effects of self neglect.

The emotional caring I give Hubby is not up to its usual par. I find myself frustrated easier at his constant "what?", or, "Huh?" It seems that no matter what I say to him, he has to say, "What? or "Huh?"" and I must repeat myself more than once, more than twice and sometimes as much as several times. With each repetition I speak louder until it finally seems like I am shouting at him. There are times I get pretty tickled at his interpretation of something he thought I said, the result nowhere near what my original words were, and plenty of times leaving me confused as to what I was actually saying and why. 
I don't think it's always because he can't hear me, I think much of it is that he does not understand the words.

Then there are the times when Hubby wishes to converse with me. Knowing that the conversation is going to go nowhere and make no sense I almost cringe whenever I can't immediately guess what he needs and have to wait for him to try and tell me. It's not the waiting, it's the sorting out.

Lewy has stolen Hubby's vocabulary so he trades one word for another. Talk about ... I forot, what were we talking about?

Now on to the extra people in the house. I really, really, REALLY do not like the extra women here. They are nothing but trouble and keep Hubby distressed when he talks about them or thinks about them.
The sad thing is that these other women are ME!
 Is this where Me, Myself, and I are actually 3 people? Hubby speaks of one by my name, and the other as that other woman. Of course he always tells me that I know who that other woman is and then tells me things 'she' did that in actuality I did. When asked, Hubby can recall my name but there is no connection between me and them as far as he sees. Only that we work together to keep him confused.  So there it is. Another day or how ever many in our lives. The days all run together anymore. Nothing new to say or tell really so I feel like there is nothing to update about.

I will end on this.

We had the pleasure of a visit from our 2 daughters and a son in law. As the girls and I took off to spend some time together Son in Law, BLESS his heart, took responsibility for Hubby and took Hubby to town to get a cup of coffee.
God greatly blessed Hubby with a tremendous day, physically and mentally and Hubby was able to get out for a few mins.    
The hardest thing, Son in Law said, was getting Hubby in and out of the car. I KNOW Hubby was so looking forward to this time and greatly enjoyed it. I wish he had the opportunity to do more of it. Those are rare opportunities I fear but oh how appreciative we are for the ones we have.

God has blessed us with His goodness, all the time, even when it seems bad. I chose not to forget that.

Monday, November 15, 2010

Something new

It was a great weekend for the most part :)
Hubby and I had the pleasure of a visit from our oldest daughter and a couple of our grandsons :)

Hubby was very happy to see her. Even though he tried very hard to associate with us all it was painfully obvious to daughter that her Daddy's condition had deteriorated quite a bit since her last visit with us.
It also didn't help that he spoke about me not as her mother but as another person, addressing me by name to her. That coupled with the announcement from Hubby to Daughter that he wouldn't be around much longer.
Hubby needed to say it. Daughter cried and my heart hurt for them both.

We did find time to share our feelings, as sad as they may have been, but more importantly we took the opportunity to laugh until our faces hurt. Hubby enjoyed the boys running around peeping in on him. He tried very hard.

Now the visit is over and we find ourselves at a juncture. Today we woke to a new issue.
Hubby wanted oatmeal for breakfast as usual. I prepared it and set it on his table. After a few mins I noticed he was struggling and was becoming frustrated. I asked Hubby how I could help. He asked for his table to be raised so that the bowl was almost level with his mouth. Still struggling to eat I noticed his problem. Hubby was not putting his spoon to his mouth but instead trying to move his head to his spoon and having a terible time of it. I offered my observation but Hubby never grasped what I was saying, the end result was me feeding him.

At first he laughed at me and the prospect. I reached over and stroked the side of his head and face in a gentle manner and smiled at him. He agreed that it would be a good idea.

I don't know how long this new thing will last. Who knows, by the time he wants to eat again he will have no problems. But he knows I am willing to patiently feed him if he would like help.

I shall look for other food choices for him to continue as much independence as he can until he just can not any longer.

It was a wonderful weekend. :)

Thursday, October 28, 2010

No place to hide

I'm very tired all the way to my heart.
I'm sick to death of Lewy.
It invades every aspect of my life.
It keeps me trapped in my emotions, thoughts and time.

I'm trapped in my frustrations as I don't want to take them out on Hubby.
Some days he gets the short answers though.

I'm trapped in my thoughts and concerns as Hubby wouldn't understand them so who do I have to talk to?

I'm trapped in my time away. Leaving Hubby with anyone for any length of time due to falling and incontinence issues is difficult to almost impossible to do.
He is still a proud man and having these issues in front of anyone else but me is difficult for him.
Even though he doesn't remember us getting married, he still feels comfortable and safe enough with me to accept my help. He has even refused the aids assistance with anything but bathing.

I have become frustrated with his insistence on removing is clothing before he ever reaches the toilet leaving me with a mess to clean up several times a day BUT, I have found that as soon as he heads toward the door I can gently remind him to keep his clothes on until he gets there and that seems to work.
I suppose it's not all bad.

Probably the hardest thing about Lewy right now is Hubby's realization of his mortality.
I've seen him cry more than once lately.
Just last night he asked me if I had noticed he was getting worse.
I almost wanted to chuckle when he said "I don't know if you notice it or not, but I think I'm getting worse."
I sat close to him as he tried to communicate with me.
He was concerned that his health was not fair to me.

I assured him that I was here to care for him by love and choice.
As long as I'm able to do so I will.
My goal was to keep him at home and feeling safe, comfortable and loved.
His tears fell as we spoke and I kissed him.

My tears fell later so he wouldn't see them.

I'm leaving this post on a positive note though.
A recent visit to the Neurologist awarded us some new meds to help combat REM sleep disorder. I am always reluctant to give new meds. If anything I would like to eliminate as many as possible but every time we cut back we hit an emotional snag.

But that's not the positive.
The positive was when I asked the Dr to specifically prescribe the pull up type undergarments for Hubby.
The Veterans supplies these items but only the tab type unless Dr specified and with explanation.
So I explained that the Dr would have to specify the pull up type and the reason I requested them which is, that to some degree Hubby is still mobile. He can still remove his clothing on his own and the tab type clothing are difficult for him to manage. There are also some dignity issues involved with that style. I wish to retain as much of that as I can.
Dr looked at me, agreed to my request and said, "You're taking excellent care of Hubby."

Even though some days I feel like I'm not, it's always  good to have re assurance from the professionals that can change your life with the stroke of a pen.

Friday, September 10, 2010

Touch and Go

So it's been a couple of months I've been emotionally hiding out.
Not wanting to deal with things and  just making it one day at a time.

For a little while it was sure touch and go.
I wanted to touch Hubby's neck all the way around and not let go.
What a roller coaster ride we have been on.
Those sharp twists and turns are hard on a body, mind and heart.

Am I feeling better? No not really. I'm still making the most of the situation.
I retreated into myself to sort through emotions. Too many of them to sort through so I retreated away into an on line game where reality didn't enter. I wanted as far away from Lewy as I could get my mind.
Unfortunately, when Lewy invades your life, there is no escape.

As of late Hubby has take a down turn.
Mobility is becoming worse and worse.
A recent Dr appt allowed us to stop off at our favorite place for lunch.
Hubby insisted that he would walk in but it became very apparent that the task was going to be difficult to nearly impossible.
Yet he was determined for reasons not known to me. I can only speculate that because this is the place he frequented most. This was his stomping ground. This is where many of his friends and acquaintances congregated. This was his daily ritual no matter what the day held. If he was ever faithful it was to his beloved gathering of friends.

Upon entering the establishment, everyone in grasping reach became support. I finally made the announcement that if they were steady be prepared to be used as a hand hold. The owner offered assistance and just as we seated Hubby decided he needed to go to the bathroom. UGH! Up and across the floor we went.
"I have your walker in the car, let me get it"
"Are you sure? It would make this much easier"
Stare down so I backed off.
The last thing I wanted was another police incident.

I was able to help Hubby get into the bathroom and about the time the food arrived he was finished so I led him back to the table. Once again clutching everyone and everything in his path.
For some strange reason he doesn't walk. He falls forward into the closest thing to grab and takes one step forward and scoots the other foot up about half way or a little more. I have tried countless times to get him to walk one foot in front of the other or to actually get to an object before he grabs it. I continue to suggest this but my efforts are wasted. A walker is scarier than him walking on his own. He continues to push the walker instead of walking with it. I can picture him in a heap all tangled up in the walker like a cartoon.
How do I make him understand?

As we were sitting eating lunch a few people we know spoke to me. Polite conversation or just  a hello. What stuck out in my mind was NOBODY spoke to Hubby. He noticed it. How heart breaking. He was sitting right there. OK so maybe he can't carry on a conversation but you could at least say hello or mention the weather or pat him on the back. Anything to acknowledge him.

Incontinence is the norm and disposables have been the garment of choice for a while. Another I can't make him understand is, they do not need to be removed the moment you enter the bathroom door. I can't make him understand to wait until he reaches the toilet before removing his pants thus leaving a trail of cleaning to do. I have tried multiple types of cleaners for odor control. My choices are peroxide in a spray bottle to clean the tile floor and vinegar in the laundry. Odo Ban just for the smells good and fragrance plug ins.

2 times Hubby has cried. Now he has come face to face with his mortality and he is afraid. I just held him close and reminded him I was here to the end, whether he liked it or not. He wiped his eyes with a tissue I handed him, smiled at me and held me in his shaking arms.

I suppose on a good note, our down turn has resulted in less anger and hostility. I like that. The cost was high to get it though, and rising.

Eating has diminished some and weight has been lost in the last 2 weeks. Not much but enough to keep track of. Withing the last few days swallowing issues have developed. Pills have been put in pudding, broken crushed into a powder but his resistance to the taste or texture has left him without meds. It is here that I am unsure how to proceed. My head says get advice. My heart says leave him alone. This is his choice.  Now I wait for a call from the Neurology Nurse so my head wins out today. ( *UPDATE: Nurse called and sched appt for Oct, made notes for Dr and I'm going to follow my heart in keeping Hubby comfortable)

I don't like leaving these these posts on bad notes so I'm going to share a funny.
To some it may seem insensitive so if you are the overly sensative type stop reading here.

Our teen aged niece has chosen to to live with us for a year. I gave Niece every reason why she might not want to but she still chose to be here. What a blessing to have her. Niece has brought so much joy into my life lately and I almost forgot what it was like to laugh really hard with someone. We decided that home school was the best option for us, more for me and my convenience. Niece is very smart and has wanted to home school for a few years now. This was perfect. She has been doing well.
Home school gives us the option to be flexible so we took a short day today.

Tomorrow is Niece's15th birthday. We made plans to lunch for her birthday when the aide came.
When Aide arrived I gave her the rundown of my plans. Hubby said he wanted a bath so I informed Aide.

As I walked through the dining room I told Niece "Let's go kiddo" she rose from her chair and walked to the front door, following me.
I passed the door to tell Hubby goodbye and entered our room just off the kitchen.
Hubby clutching the bed rounded the foot of the bed headed toward the kitchen.
Upon seeing Hubby I quickly stepped into the bedroom and shut the door.
Hubby was not dressed!
Niece had been behind me but made a stop at the front door. I had blocked her view of any upsetting image. Explained to Hubby that Aide would be in shortly to bathe him. Kisse him goodbye and exited the room. Niece in a worried, shocked, disgusted, confused tone asked, "Was Uncle naked?! I replied, "Yes, he was". Then I looked at Niece, smiled really big and said, HAPPY BIRTHDAY! I got you a stripper!! ROFLOL!!!! ;-)

Friday, July 9, 2010

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.

Monday, June 14, 2010

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!

Sunday, June 6, 2010

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.

Friday, May 28, 2010

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 ;-)

Thursday, May 27, 2010

Someone Hit The Brakes

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


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!! :)

Thursday, May 20, 2010

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,

Friday, May 14, 2010

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!

Wednesday, May 12, 2010

Something Different, Indulge me

Ok so this time I am using this forum for personal gain. I hope :-)

As a full time caregiver I have to work around my obstacles. The one I find the hardest is the inability to just get up and go when I want to. In many ways I understand Hubby's anxiety about not being able to drive any longer and feeling as though his freedom has been taken away. Even though he has been assured that I would be happy to take him anywhere he wanted, it has not alleviated the desire to still drive and the loss that goes with it.

I, even though I can still drive, feel confined by the circumstances of Lewy.
As a stay at home mother for 3 children and home maker for many years the "taxi service" was always ready to pull out. Somehow we managed to attend school functions and meetings and practices and concerts. Groceries were shopped for and errands were run. Dr's appointments were attended friends were transported and church functions were rarly missed. GO GO GO!!

Now the kids are all grown, married and moved away with children of their own, 2 of them anyway.
When our first grandson was born I remember Hubby and I planning the days we would visit grands and attend school functions. We would be present for birthday parties and special occasions. We would go on vacations and take the babies. We would have them for a time during the summer. We were going to be THOSE grandparents.

Lewy, had other plans.
Lewy doesn't like to go. He likes to stay home and sleep. Lewy gets confused about where he is and what's going on at times. Lewy takes a good 2 hrs to get ready to go anywhere and has been known to make a last minute decision to cancel our plans, no matter what they were.

My ability to leave the home for anything depends on Lewy and his desire to go (Insert sarcastic laugh here)
The presence of Hubby's aide to stay while I scoot off to run errands. Another lesson learned in this area is DO NOT count on the time schedule to be followed. She has been know to be dispatched to us
Earlier. Result; me not ready to leave yet.
Or Later. Result; any plans I had made for as certain time had to be canceled or I was too late to show.
Or if the aide was unavailable, no one at all if a fill in could not be found. Result; going nowhere fast.

We have missed baby births, birthday parties, special occasions and "I just want to see you"s.

I can hear you now, "This sounds depressing, what does any of this have to do with a personal gain?"
I found a contest sponsored by OrangeOnions.com. They are giving away a Banzai Inflatable Obstacle Course Bouncer (link here) or in other words a Bounce House for children and I want to win it.
Of course feel free to enter yourselves :)

One of the entries was to write about it in a blog. SO here it is.
Ohh If I won that for the kids to play on while visiting us we wouldn't be remembered as the Grandparents house with the sick Grandpa. Our cool factor would go straight up!! 

So Thank you for letting me indulge a little.
I now return you to regular programming :)


I'm not a regular, as in daily, blogger.
Mostly because I don't think what I have to say is really that important.
Some days things here are quite uneventful so why share that?

I try to save up for the big things or at least interesting to me things.

Caregivers go about their lives doing what needs to be done daily with little to no self acknowledgment that what they do is actually worth talking about. That is until we reach a certain point and it's usually a snapping one. We have the deep desire and need to vent. Much like a lidded boiling pot.
Venting is good for our emotional well being.

I use blogging as my place to "verbalize" my feelings and thoughts. It helps me keep them sorted and re reading them at times opens my eyes to some negative thinking paths I wish not to take. My feelings and thoughts are honest and I hope most of them are of benefit to others struggling to cope and questioning their aloneness. You are not alone.

So today I think about caregivers while Hubby sleeps.

Because I am limited to what I can and can not do or when I can and can not go, social interaction with others is rare. My Online Support Spousal Group is my life line to in coping in the Lewy body world.

I've also come across other caregivers at various blogs that I have wrapped my heart around. Those caring for family members themselves, parents, grandparents, extended family.
Or family members of someone receiving care, sons, daughters, siblings, extended family.

I love how they make me laugh and think, educate and encourage me and at times I cry for and with them. Virtual strangers with a common thread of caregiving. These are precious people.

I am astounded by all the hard work they put into caregiving. Their dedication and steadfastness. Their heart and soul.
Some, many, most I would like to wrap up in my arms and say, You are not alone. I see and or feel your pain, frustration, loneliness. You are doing the best you can and doing a great job. You are important.
So a virtual hug and prayers will have to suffice. It's good to be acknowledged for our efforts.

Saturday, May 8, 2010

Things that made me smile

Looks like we see light at the end of our financial tunnel. Now we can get back to "our normal" whatever it is.
I purchased a file folder to keep accounting records of Hubby's finances. Something I am now required to do by law since being appointed as his guardian. No biggy.

Income FINALLY did just that, came in, YAY!! Normally grocery shopping is considered a HUGE headache for me. This time I welcomed the opportunity to do it. The biggest challenge was keeping separated what I would consider as my food and his food. Milk was easy as we drink 2 different kinds. I think I shall save myself the future headache though and shop 2 different days. A HIS day and a HER day LOL!!

One of the core features of Lewy Body is hallucinations/delusions. Those things are becoming more and more common place in our our life now. Where they were once dismissed or hidden by Hubby they are now just becoming a fact of our life.
One incident in particular that got me tickled was the other evening, while watching TV in bed, Hubby shuffled/stumbled into the kitchen to get a cola. (He makes me nervous walking around) On his return he was passing in front of the television. An episode of "House" was on and in this particular scene the "Drs" were pushing a gurney down a hall, they turned and headed straight for the cameras.

Hubby was startled by this and he jumped back as if attempting to move out of the way.
(I was surprised he didn't lose balance and fall!)
The "Drs" turned another corner and Hubby looked at me and said with agitation in his voice "Did you see that?! They almost hit me!"

All I could reply was "Good thing you moved out of the way" I was laughing on the inside though and it still makes me smile when I think of it.

That sounds bad on my part but the delusions are part of Hubby's reality. No amount of convincing is going to change his mind as to what he see's or hears anymore.
There are times he can still sort it out. Normally I would not reinforce the hallucinations. I try to state matter of fact what is or isn't. Mostly isn't. I have been glared at sometimes by Hubby's distrust of my accounts. At this particular time I chose to side with Hubby. It had no real relevance. I was sure he wouldn't even remember the next day. He didn't or if he did, he never said anything about it. It served my purpose better to be sympathetic to Hubby's "near mishap". He crawled into bed and snuggled up.

Last night we had a cold front whip through with the winds. Hubby and I were settling in for the night and he said "It's gonna be cold"
I agreed
Hubby got up from the bed and retrieved his housecoat. He spread it out across the bottom of the bed for his feet. When he finished doing that , he went to the closet and retrieved his other housecoat. He shuffled/stumbled to my side of the bed and spread it out for my feet.
I considered it a precious and priceless moment.
I think what made it stand out the most was, the Parkinson Type symptoms associated with Lewy Bodies make his movement stiff and slower.
Hubby shuffles when he walks and since his movements are not fluid it takes a longer time for Hubby to do anything.
He carefully spread out the housecoat across my feet and looked so pleased that he was taking care of me.

I was just as pleased.

It's these moments that erase ALL the bad ones.

Thursday, May 6, 2010

I mow, I mow, Because the grass does grow...

I mowed the yard yesterday.
I have mentioned that I have a love hate relationship with mowing.

Yesterday Hubby had a fairly confusing day. Lewy started it off that way. After a night of constant sleep interruptions I decided to rise and hope he would decide to lay back down and sleep. I drank my morning pot of coffee. Took care of my Facebook obligations (games);-) threw the bathroom rugs in the washer and dryer and cooked Hubby some biscuits and gravy with sausage (his new obsession) tended to a few household chores, OK a very few household chores, FINE I rinsed a dish sheesh!! Give a girl a break ;-)

As I dressed and was preparing to go out and tackle the yard I told him of my yard plans and asked him if he wanted anything before I went out. He looked at me with a confused expression and said, "Now? It's time for bed."
I had to explain what time it was and show him the sun shining brightly. He shuffled over to the clock and stared at it for a bit and said "hmm" someone told me it was..." And that was the end of that conversation.

Hubby decided to lay down anyway so I took the chance to scoot out while he was still. I come in every little bit to check on Hubby and make sure he is OK and see if the phone rang while I was out. It also keeps me from being in the sun too long at one time and hydrated and snacked :)

Hubby's condition has taken a down turn. Actually, just a consistent of what already was occasionally. We are now fully dependent on incontinence aids. YAY! Not yay in a, glad we are there, way but yay in, I am glad he made the decision avoiding the many mishaps that have occurred and the extra laundry.

The delusions/hallucinations have always been there, mostly at night, but Hubby has kept them to himself most of the time because he wasn't sure if they were real or not so he chose to think they were not or waited until they were verified in some way.
But as of late, they are mentioned more these days as well as nights. Mostly in the "Somebody told me", "Who was here?", "I keep thinking a lot of people are talking to me". Somewhere Hubby still has the ability to sort them out enough to ask me now if what is perceived is the truth and accepts that it isn't possible when I tell him it did not happen. I consider it a blessing that he is never upset by those thoughts and voices or people. I might even like them myself if they would just help around the house ;-) But they don't so the work is left up to me alone. sigh

As we were laying in bed last night I was watching some television while Hubby was laying close with his arm across me. He looked up at me and asked me if I ever got my TV's hooked up.

Trying not to be confused by his question I asked what TV's was he talking about?

He said "Those ones..."
Then he looked around and said "Oh that can't be right, they told me..."

I questioned him further about they.

He said "Those people were talking to me about..."

I said there was nobody here to talk to him but me.

He looked at me and said "I have a lot of people that talk to me. Is it part of my brain problem?"

How clear and complete was that?
I told him that it must be very confusing to have so many people talking to him.

He agreed.

Then he looked at me for a long time and said
"You know, I kinda remember who you are."

I smiled and said that was a good thing.

He told me "I should have helped me mow the yard."

I asked him "Like we used to? That would be nice."

Then I thought about how we used to mow our 2 acres when he did help me. 2 riding mowers side by side and us holding hands until we had to turn then rejoined.

Life seems simple then.

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.

Thursday, April 29, 2010


Everything I say must be repeated.

Lewy has taken Hubby into the world of garbled language. He doesn't always hear what I say. I don't know if it's my tone he can't hear or if his brain can not process the words correctly. The latter is actually my guess. This has been going on for some time but is increasingly worse.

I admit I am tired of constantly repeating myself to "Huh?".

Being more aware that Hubby had this hearing difficulty I try to speak up when I'm talking. I have even tried saying his name and getting his attention on me before I speak. I don't always remember to do that but I do try. I try and remember to speak slower, something that has always been a difficult thing for me as I grew up in the North and transplanted myself to the South. Some habits are difficult to completely break.
The main thing is I still try to converse with Hubby.

Conversation is becoming increasingly difficult though. For one I have never been much of a conversationalist. I steered away from politics as Hubby, who loved politics, had enough opinion for both of us and mine wasn't necessary. That's fine. News headlines don't make there way into the home by way of TV as I have found that Hubby gets more anxious when he watches the news. When state or world news became part of his own personal reality I took the easy way out of avoiding distress by avoiding the news or any other program that evokes thoughts of insecurity or danger.

Since we are basically home bound we don't get out and see people. So our social conversations are lacking. And those we do see on the rare occasion get as confused as Hubby when he tries to converse with them. They look at me and I just shrug, smile and divert the topic.

Mail or pamphlets that Hubby tries to read frustrate him. He was looking over a piece of mail we received and told me he couldn't read it. I asked him why and he said he couldn't see it or understand it.

We don't converse about TV programs either. As time went by Hubby's ability to keep up with a show plot diminished also. It's no wonder he can't keep up with a conversation. Even a short one.

I do get tickled at some of our conversations we try to have. I also get annoyed at having to repeat everything I say. Mostly I get tickled.

For instance,

Setting: End of a tiresome day. Hubby has been awake and needy all day and I have had to repeat myself to Hubby's "Huh?" the vast majority of the day.

We have had a few chilly nights lately. Hubby complains about being cold ALL the time so this cold snap has been a little extra chilly for him. As we were calling it a night I asked Hubby if he wanted another blanket on the bed for his feet.

Hubby said "Huh?" (Seriously, again?!grr)

Louder, I say "Do you want another blanket on the bed for your feet?"

Hubby gets a confused look on his face and says, "Do I want a bucket?"

I get a annoyed look on my face and glare at him. With agitation in my voice said "NO! Now why on earth would I put a bucket on the bed?"

Hubby's answer. "I don't know, you said it."

Dumbfounded I just stared at him and fell out laughing.

And thus is how many of our conversations go :)

So much better than comedy TV!

Friday, April 23, 2010

Hate/Love Relationship

I hate mowing.
I love mowing.

I hate mowing because it's usually hot and if it isn't I know it will be.
It's dusty and dirty and a job that has to be done often and it takes a long time. I usually have to dedicate a couple of days for it.
Gas can be expensive and mowers require maintenance I am learning to give. Our inability to just get up and go pinches me when I need stuff to repair flat tires or change oil or replenish gas etc etc.
One of my big fears is that while I am taking care the yard, Hubby will be in the house and fall down. I will not hear him if he does. That fear keeps me coming back into the house every little bit to check on Hubby and continually watching the doors in case he attempts to come outside to find me. I've nearly run into a tree straining to see the back door once. Call me George ;-) LOL

I love mowing because it is a solitude away from the phone and the monitor. It is a time I pray and reflect and have some 'quiet time' enjoying the beauty of the earth around me and the sky and the sheer awesomeness of God's handiwork. It's when I mostly appreciate the trees and the shade they offer when I'm hot and need to find rest under one for a short time until I continue with my chore. The sound of the mower drowns out the passing cars and other noises. I once made a comment that I enjoy praying while I mow because I know God can hear me even over the noise of the mower, Heart sounds are louder.

So God and I mowed yesterday and I talked and listened to a great many things.

The update on our bank fiasco has good news. Our income was returned to the sending institutions and placed in suspended status. We now have them un-suspended and should receive an income again in 10 days. YAY! Did I happen to say YAY?!

Our sleeping situation has not improved but I was woke only a couple of times last night. I tried to go to bed early and catch up on a few zzz's. I feel less brain dead today.

Hubby has had a few tough physical days. We took a pleasurable opportunity to have lunch with our baby girl and her hubby. It's strange when your children fight with you over who is going to pay. I offered but conceded her insistence as I know they are aware of our situation and want nothing more than to help in any way.
Hubby was barely able to make it into the restaurant but didn't want to use the wheel chair. We asked to be seated at a closer table than they originally gave us.
Daughter and Son in law gathered up the drinks and utensils and brought them to our new table. After our meal Hubby needed to find the men's room and I was able to get him there. As he went inside I scooted out to the vehicle and retrieved the wheel chair. He did not fuss about the ride out.

He barely walks around the house the last few days due to this difficulty. I try and encourage him to use his walker but I truly believe he doesn't know how to use it properly. No matter how many times I try to explain and demonstrate he wants to "push' the walker. I fear he will topple over and tangle himself up in the walker. That would surely be a site. He uses the walker as a place to put his housecoat. At least it isn't on the floor for him to trip on.

Last night in an attempt to get to the bathroom he spilled a glass of milk and didn't make it in time. A more frequent problem. He went in to clean up and change and upon his entrance he announced there was a big bug in the bathroom.
Normally I would jump up, collect the necessary killing tools and go concur the beast but instead I asked him if he killed it. Hubby happily answered "Yes!"
To which I responded like a damsel in distress, "MY HERO". Hubby smiled and laughed and said "Yep!"

Those are the moments I want to and hope I focus on in the midst of all the confusion and tiredness. I want them to be beacons in the storms of this Lewy Life.
it hasn't been easy this past month to find the light so I am learning (not there just yet, may be a long process) to be calm and listen to the small gentle voice of God. He can show me what I'm missing and more often than not asks me if I'm finished throwing a tantrum so HE can show me.

Thursday, April 22, 2010

Night time feedings, security blankets, needyness and loss of sleep

Sounds like a new parent and baby doesn't it?

Nope, it's not. It's me and Hubby :)

Hubby sleeps so much. Even though he takes a night time sleeping aide he STILL has nighttime house wandering. He can even be in a wake pattern for a couple of days in a row and have the need to completely crash yet still have the night wandering. I am blessed that he never tries to leave the house. One thing in our favor may be that we live in the country so to speak so it's pretty dark and difficult to see at night. That compounded with his poor eyesight anyway may make him feel safer in the house, even if he isn't sure if it is his house or not.

Hubby likes to eat at night also. With no sense of time he has announced to me in the middle of the night that he wants me to make him some Malt O meal.
Umm... NO.
He raids the refrigerator for anything he can find. I am happy he still likes to eat but his lack of movement and limited intake of fluids due to the excess sleeping cause him constipation problems. I can not make him understand that.

I have realized that when Hubby is awake he is very needy. From the moment he wakes until he lays back down he needs me to do this or do that. He never asks, he never has come to think of it, but tells me what he needs or wants.

I need something to eat.
I need this junk fixed (remote) so i can watch that (TV).
My feet are cold. Turn up that thing (heater)
The toilet is stopped up.
I need this blister fixed.
Hey Honey?... (complete silence and conversation never started or if it is, never finished)

Of course I jump and run and tend and do and fix and turn and find and suggest and wait.

At night when I get to sleep he will poke and prod and spat and touch me all night. Making sure I am there. Like a security blanket. And he won't stop until I acknowledge I am awake. Then he starts again when I fall asleep.

My mind and body need continuous hours of sleep. Straight, in a row hours. Not divided up in segments. This broken sleep pattern causes me to have brain fog and irritability problems. I nap during the day but it just isn't what my body needs.

I remember when our children were babies I did the same thing when they first got here. In my head I remember reading it wouldn't last long. I remember some family telling me the same thing even though it felt like forever until they grew out of it. When the next child came the same cycle of crazy sleep occurred and I remembered it wouldn't last long.

I don't have that same feeling now. I don't know how long Lewy will keep my sleep disrupted. I am tired and stagnant. That sounds pretty pitiful but truthful :-0

On a good note...
I'll have to think on that one right now and get back with you ;-)

Sunday, April 18, 2010

How can I be angry at him?

Yet I find it happens so I try to change the focus of what I am angry at.

I have learned, for the most part, not to make plans for anything and NEVER promise anyone we will attend, meet, go. I have been disappointed too many times and do the best I can to avoid the emotion.

We make plans to do things. We talk about them and plan out our schedule for accomplishing them only to lay them aside in the end. The emotional effort that goes into planning a trip just to the store is pretty big around here.

Today though, I find myself once again in the throws of disappointment and yes anger. Anger I am trying not to displace.
Last night we made all the plans to follow through with a trip to our grandson's 4th Birthday Party.
I have told all of our children do NOT count on us to be able to join you in anything. I don't want them to be disappointed if I say we will and then turns out we can't.
Hubby carried on a very clear and concise conversation about it. We planned the attire and timing for the 3 hr trip and it was set that we would go. I went to sleep excited at the prospect of not only getting to see our grandchildren, and daughter, but seeing the surprise on our daughters face when we arrived. I knew we would be greeted by all sorts of hugs and kisses and maybe a few happy tears. Now all of that is dashed into the ground this morning.

But I have to keep asking myself. How can I be angry at Hubby?

If I woke up or found myself in a strange place with people I really do not remember how would I feel?
If someone told me something I was supposed to have done and I didn't remember it, how would I feel?
If a stranger I was told I was married to announced we made plans and started telling me I needed to get ready to go but I didn't remember, how would I feel?

How would I feel if every day I was lost in partially familiar territory not knowing how to find my way out and only being comforted by the few things I did remember. If I couldn't distinguish between my dreams and my reality. "Did I dream that or did it really happen?" If I thought I had conversations with people that seem real to me. If my mind told me I could do something and my body disagreed.
How would I feel?

So I MUST daily remind myself of those things for Hubby's sake.

I am however, mad as hell (sorry) about Lewy bodies.
It steals so much and the harder I try to fight it the harder it fights back.
Mocking me that it will win in the end. I just want to give it a run for the money. It just really beats me up some days.

There is only so much one person can deal with and some days I think I may be at the end of my rope.
Hubby's Home Health Contract expired and he was booted out of the system until the V.A. catches up with the authorization for renewal. This means no aide for him and no quick errands to town for necessaries. (Thank the Lord for family willing to make a milk run) Why it may take more than 2 weeks to renew is beyond me. Especially since I was on the phone with them as they put in the request. But This person has to OK it and That person has to double OK it. (rolling eyes).
Of course I have every capability to tend to Hubby's personal care and I do. I think the aide is more for me than Hubby :)

We are also on 3 weeks since the horrible bank incident.
Still no funds available for us and although I was able to scrape up enough money to get the bills paid, next month's crop of bills are coming in with no resources available to take care of them. **This is not a cry for help. This information is strictly for an update on the situation. I truly believe things will be taken care of in due time.**

Today I still have some rope left to cling to.
I don't know who reads this thing but I do know it is a pretty good therapy for me.
Just getting the words out of my head helps.

It's a beautiful Sunday. Cool and crisp.
Hubby sleeps quietly and peacefully as opposed to thrashing and talking.
Grandson will have a wonderful time with his friends, brothers and parents. They will know I am thinking of them.
I have a roof over me and food in the house.
My internet is connected (very important) ;-)
I am loved and prayed for.

In everything give thanks.

Saturday, April 10, 2010

A few hurdles jumped

You would think with as much hurdle jumping as I seem to do in this Lewy life I would lose weight.
No, not me. I have to sit down and eat as I contemplate my next move in overcoming the obstacle in my way. Feed my stress. I wish my stress liked raw carrots instead of carrot cake with cream cheese icing.

When I last left you Hubby was successful in closing our account and cutting off our income. I sent the judge a request for a temporary emergency guardianship but since Hubby's life was not in eminent danger the judge wouldn't grant it. I suppose it's Ok if we have no utilities as long as Hubby is in no danger.

God ALWAYS provides a way. I was successful in convincing Hubby to cash the final funds check and was able to pay all the outstanding bills for the month. We may be eating tuna and cereal for a while but protein is good :) Of course our prayer warriors and family and friends have offered whatever help we need until we get this situation straightened out. The Judge I serve can out rule anyone.

Hubby had an 8AM appointment with his Neurologist the other day. We have a 70 mile trip to the "BIG CITY" YIKES!! 8AM!! Besides morning rush hour traffic to consider we need a 2 hour window to get ready and out the door. I suppose I prayed enough about it and should be grateful that Hubby is a night wanderer so he was up anyway by the time we needed to start getting ready. As a matter of fact we left early enough to get there with enough time to beat the traffic and have breakfast in the cafeteria.

Getting ready presented it's own set of problems as Hubby was having an extremely terrible physical AND mental day. Much help was needed in getting him dressed and  out the door but we did it.

A few days earlier Hubby had a list of things he had said he wanted to talk to that Dr about. One was his insistence that he should be able to drive. I promised I would write it down so Hubby could ask about it. While waiting for our (Hubby's) appointment Hubby decided he needed to use the rest room. He was insistent on walking by himself but the room was quite a ways off. Determined to go on his own he only got a few feet before someone offered to assist him and Hubby took him up on the offer. I took that as my que to approach with the wheelchair and transport him the rest of the way. Hubby was happy for the ride.

When he shuffled into the men's room he seemed to be in there quite a long time. I was glad it was a busy restroom as a nice man that emerged asked me if I was with an older, confused man. I said I was and he reported that Hubby seemed confused and was moving slow. I thanked him for the info. Hubby still didn't appear so I asked a random stranger if he would walk into the men's room and check on Hubby. He agreed. I described Hubby and told him Hubby's name.
 When the kind gentleman walked in he loudly said, "Hey, Bobby" at which point I heard Hubby happily and excitedly say "Hey, I haven't seen you in a long time." The kind gentleman laughed and said "Yep" I took the chance to yell through the open door that they had called us for our appointment and Hubby emerged happy that he had run into an "old friend" Hubby's day was made :)

We scooted into the exam room and our kind, compassionate, caring and thorough Neurologist addressed Hubby asking him many questions about life at home and how he was able to do things. Many of the answers were that I assisted or did almost everything for Hubby save feed him. He still has that ability just modified for his convenience.

Dr asked Hubby if he was driving and Hubby looked right at Dr and said. Well, I think I took myself off that list.
WHAT?!!!! Dr should have been at my house for the last few weeks!!
I sat there not sure whether to let out a disgusted breath, laugh or say WHAT?!! I chose to remain silent and appreciate that Hubby has decided to give up his driving voluntarily. (rolling eyes)
Dr agreed that driving was not a good idea any longer and that Hubby made a wise decision.

Dr told Hubby he was going to test his memory. Hubby failed SO miserably that I wanted to cry. Just from the last time we saw Dr 5 months ago there has been a dramatic decline in Hubby. I suppose when I am in it every day I don't REALLY notice the huge decline. We adjust and it becomes our normal and we move on.
Dr asked Hubby a few more questions and told Hubby that his memory had really worsened. He then asked Hubby , since I was the one taking care of everything what did he think about me being Hubby's guardian. Hubby scooted in his chair, looked right at Dr and said. "I guess that would be all right"
Again, WHAT?!! When did Hubby change his mind? I am just grateful he did and Dr filled out our legal paperwork for me to take to the Judge. Looks like it's just a matter of waiting and formality now.

As we were leaving the V.A. We have to pass through pharmacy area.  Hubby started looking for his "old friend" when we went through. I told Hubby I thought he would already be gone. Hubby said "Probably."
Hubby was happy the rest of the day though. For that, I am thankful.

While there we took care of some other medical things such as the Home Health Care renewal. The V.A. drags it's heels so I have learned that it may take up to 2 weeks to get Hubby back into the Home Health Care system as his contract expired and the system kicks him out once it does. Paperwork, paperwork!!I WAS however able to get my needs met for the Home Health Care time. Same hours per week, less days just more hours in the day. Time to actually DO something. BIG SIGH OF RELIEF! Now just to get it kicked in again. I'm back to having to depend on family members once more. I am blessed to have willing and supportive members :)

So while I figure out this hurdle, I think I shall have some ice cream ;-)

Monday, April 5, 2010

So much for that

Apparently when a check is issued to two people using the word AND they BOTH must be present to cash said check.

Sufficient Day

"I messed things up, didn't I?"

I had to agree with hubby's statement. We were in a fix.
The next statement made me laugh,

"You didn't have to agree with me."

I had to laugh and hugged him tightly. He then said "I know I can get hateful sometimes." his way of apologizing.
I said that I understood that it isn't always him and he can't help it, for the most part. I hugged him again and reminded him I loved him. He said he loved me too.

I have this very deep faith. I follow the leader of my heart. Even with this faith, many times I see a road that looks easier to take and attempt to travel it only to find myself in a mess for sure. I run back to the leader and find Him waiting for my return and happy to see me. I follow and the way looks steep, narrow and scary. I cover my eyes and ask "Are You sure, are you sure?" but I keep walking. I wonder if He sighs as we pass another pretty path and I point to it with anticipation to go that way. Forging ahead there are times I find myself mired down in the day to day monotony so I sit on a stump and just sit and sit. Absorbed in myself  and my situation until I get knocked off by some strong event. Again I follow for fear of being swallowed up in fear, depression, anger and bitterness. Not that I'm not chewed on by them, I just don't want to be swallowed.

One day I know I will come out on the other side until then I take one day at a time. I try and do the best I can for the day and let tomorrow worry about itself.

Truthfully I wasn't sure how we would get out of our fix. I just knew that I would do what I could for the day. Blessed beyond words by the most understanding people, prayer warriors and family. Our youngest daughter and our blessing of a son in law took it upon themselves to pay one of our bills. My heart rejoices that they want to take care of us, at the same time my heart hurts that they felt it necessary. All of our children and family and friends have rallied to offer help in whatever way. I believed it would all work out some way and to some degree it has.

Hubby had the bank check from the account he closed. He never signed it for me to use as it is in both of our names. He even hid it from me by putting it under a drawer. He later revealed it's location to me after we had the mess conversation. He finally signed it and I shall carry it to the bank and open an account in my name and pay our due bills. Of course it will only go so far and when it's gone it's gone but at the very least the bills will be paid this month. God is always an on time God :-)

The next obstacle is his monthly checks. When will they arrive and how will we be able to use them if he hides them also? But that's a problem for tomorrow.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Wednesday, March 31, 2010

March Lambs? One can only hope

After our horrible day yesterday the evening wore on like drudgery.

Uncertainty loomed everywhere. How was I going to fix this before the guardianship hearing? That was still a month away and bills would need to be paid, groceries bought etc etc. I had to contact the people that I had written checks to informing them that there was no account any longer. Checks would not be valid. How embarrassing.

After making several calls and canceling automatic payments I retreated into game mode when we got home.Hubby made me cry last night though. He wanted to talk to me about his dementia. He said he just didn't understand it. He doesn't think there is anything wrong with him and everybody is acting like there is. He wanted to know what his Lewy bodies would do to him. We talked for a while and he retreated to his room. Later he came and asked me where the bank check was. I had no idea and told him so. He looked at me with suspicion. Later with bank check in hand he told me he wanted me to take it and to open an account in my name.  He never signed the back of it and walked away with it so we will see if he remembers today.

Returning he sat on the step and told me he just wished he could die. I burst into tears. I held him tightly for a long time. He said it wasn't fair for me the way things were. I tried hard to assure him that I was trying to do everything for his best interests safety and comfort. I wanted us to have a really good rest of our lives and do the things we talked about doing. He then informed me he was hungry so I cooked him something to eat.

I truly believe that Lewy is the meanest form of dementia. My husband is still in there. He just can't get out.  Lately, for the most part, he has had some fairly good physical days. He has even had some good cognitive ones. That doesn't mean the cognitive ones have been easy. They just add to Hubby's delusions of his health issues. Evenings are the most difficult. One minute he can be carrying on a perfectly fine conversation and the next he's talking to me like he isn't sure who I am.

It must feel like living a nightmare every day and it breaks my heart to know, that somewhere in his deepest part of his heart, he knows.

The Roaring of March's Lions

The month of March certainly came to our household like a lion and at this point doesn't look like it's going out like a lamb. The lion reigns.

Behavioral issues have worsened. With the approval of the Dr we increased one of Hubby's meds to help alleviate some increasing anxiety and  anger issues. A quick fix they are not so we deal with things as they come fast and frequent.

As a result of his recent behaviors I felt it necessary to take measures to ensure not only his well being but ours and the well being of others. I applied for a guardianship. He has been aware that I did that.I have not done anything behind his back. Of course he was none too happy about it and I wouldn't be either if it were me. It's one of those necessary hurtful things. Hubby only sees it as a means of control. I suppose on some level it is but with his best interest at heart. There is no cure for dementia of any kind. All we can do is the best we can to keep our loved ones safe and comfortable. We have tried different meds to improve walking and cognition. I rejoice at the good days. I am not deluded into thinking they will last and go away. A dying brain is just that, a dying brain. I wrestle in my own head for ways to make it better. To keep him cognitive and on his feet. I'm a fixer and I can't fix Lewy bodies :-(

Again, our biggest issue is his insistence on driving.
Trying to separate myself from the emotional aspect of this marriage is a difficult job but one I feel I must try hard to accomplish at times. Hubby is in complete disagreement with me and his Drs about driving and I am standing my ground.

The weekend was filled with uneasiness. Friday Hubby was in an arguing mood about driving. He said if he couldn't drive he would take a hammer to all the glass in my car. I actually feared he would do that. Later that evening he was asking about how long I had lived here. He said he was going to move away and live alone. sigh

On Saturday Hubby woke he got dressed. I was sitting at my computer (I had farmville farming to do) He then came and asked me if I wanted something to eat. Thinking he was going to try and drive off I said no. He looked disappointed. I asked if he wanted something and he answered "Well, that's why I have my cap on." Thinking I had 2+2 added up I jumped up grabbed my purse and keys and headed toward the door. Just then the phone rang and it was my sister. I chatted long enough to throw on some very quick, "you don't look too scary" makeup and run a comb through my hair. I decided straight hair was in for the day ;-) I hung up and walked outside with Hubby and he got into my car on the passenger side. whew. We had a nice leisurely "old people supper" and returned home quietly. My 2+2 added up quite nicely that moment.

The next day, Sunday, Hubby slept most of the day. When he did wake he couldn't walk. He stumbled around, lost his balance and we avoided a complete fall. I helped him to the bed so he could lie down. He attempted to sit up but even then he kept falling backwards. He said it felt like someone was pulling him. I checked him for fever, none, blood pressure, normal, pulse, good. The last fall he has was a few days earlier with no bumps to his head. We had to get the bedside toilet for his use as he couldn't get up and walk to the bathroom. I was able to manage him from the bed, pants down and on the toilet and back to bed. I asked if he wanted to go to the hospital but he refused.

Monday came and all was well with the walking and sitting when Hubby woke. He woke with a determination to drive so he got into and started his car. I walked out to talk with him and attempt to get him out of the vehicle. He sat there staring at me as I explained that the he would not be able to drive it if for no other reasons than he himself did not have a valid drivers license, the cars tag didn't have the new sticker on it, the car had no insurance in a very matter of fact manner.

Hubby sat there a long time while I stood close by. He turned the car off and shuffled into the house. I offered him some supper which he refused. He found his vehicle registration with the yearly sticker attached.

Side note: He has been trying to have the car tag renewed as his drivers license but each time he goes into the revenue office he shows them the registration, says he wants to renew the license and they tell him that the car license is still valid. Watching him struggle through this has been exceptionally hard and one time we were there a woman customer said I should help him. It was apparent he was confused and struggling. I had to sympathetically tell her my reasons why I wouldn't help. It was a comfort that she understood my reasoning. Hubby left satisfied that the license was valid. He just didn't understand which license.

I watched as Hubby shuffled back to his car and attempted to put the small sticker on the license plate. While I stood in the window and watched him for close to 15 mins. I made the call to our county police, explained our situation and asked an officer to come and talk to him. They sent someone to confirm to Hubby that he was not able to drive without valid license or insurance on the car.He also looked at the car and made the comment that it would be considered "sub standard" by law and illegal to drive without the hood. (Remember, tire man drove away and the hood flew off) Hubby disagreed with the officer but he never got hostile in word or manner. The officer told Hubby that if he needed to go anywhere he was sure I would take him and that I could because I had a valid license. Hubby got snippy and said "How do you know she does, you didn't even ask her for hers" The officer told hubby he checked us in the computer before he ever showed up in the driveway. Hubby was glaring at this point and told the officer "I wouldn't even have her drive me to a dog's funeral." I wanted to laugh out loud and I'm very sure the officer did too but we both just looked at each other and stayed the course. The officer told Hubby that driving was not an option for him so he made Hubby hand over the car keys then the officer handed them to me. They are safely stashed now. Hubby retreated to his room safely stashed.

The officer was very nice and gentle towards Hubby. I am grateful that Hubby didn't get irate. I kept my cool and calm. The night was tense but Hubby eventually agreed to have some supper. He later came in to talk to me. He wanted to know when I bought the house we live in. I stated that we bought the property and built the home 15 yrs ago. Hubby disagreed with me. He asked me who did the remodeling to it (we turned the garage into a living room) I said that I did and told him about the work and how he had helped me by holding a door so I could get it in plumb.  He said he didn't remember me doing it and went to his room.
I went to bed and Hubby snuggled up all nice and cozy against me. I hope my emotional switch doesn't short circuit.

I found a private process server to serve Hubby his guardianship notice. I opted for a private non uniformed one to lessen the blow and not cause uniform anxiety. Again, trying to make it easy when it really isn't. I had agreed to meet her in town with the paperwork shortly after the aide was to be here yesterday. Hubby had risen bright and early. He was understandably stressed about me meeting the process server. When the aide arrived Hubby I started to leave and Hubby insisted he was going too. If this had been a normal day I would have just waited until after the aide left so she would at least get credited for the time but Hubby said he was not staying. His aide called the office and left. Hubby went outside to the car. I know if I had tried to leave without him he would have attempted to stop me causing himself injury in some way so I agreed to take him knowing I could get him served right then and there.

As we passed the bank he told me to pull over. I reminded him I was supposed to meet the server at a set time. Hubby became irate and grabbed my steering wheel and keys from my ignition. Fortunately we were right in front of the meeting place when he did and I was able to go inside. Shaking and frustrated and scared for driving safety and probably any other emotion you can imagine, I was that basket.

I was able to legally have him served his notice. He started to walk off but only got to the end of the parking lot before getting in the car. He asked me to take him to a friends shop. I obliged but friend was not there. We started for home and as we passed the bank Hubby again told me to go there. I refused and he became irate. Once again fighting me for the keys and the gear shift while I was driving on the highway. I had to try and pull over safely, turned on my flashers and called 911. Hubby gave me my keys before the officer arrived but not before getting out of the car and standing in the grass.

The officer asked about the situation and Hubby said all he wanted to do was go to the bank. As we were just across the street the officer requested I go ahead and take him there. It was drive him or he would try and cross the highway on his own. Either way he was going so I did as the Police Officer requested. And sure enough Hubby did exactly as he said he would do. He closed the account and withdrew the money. I explained the situation to the bank and even showed them the paperwork of what I was doing but their lawyers said he could close it and he did. The best they would do was issue a check for the balance in both our names and both would need to sign. I walked out and went to the car. He returned with check in hand.

What a mess!