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.