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.

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!

Friday, March 26, 2010

Close call

Since my last post our days have been fraught with Lewy's anger, agitation, annoyance, and those are just the A's. Each day or 2 followed by a day of solid sleep of 20 or more hrs, rising only to use the bathroom or my waking him to make sure he ate at least once for the day.

For Hubby and me, this ride has certainly been a bumpy one filled with much emotion. I think the hardest part is the emotional switching Lewy does and I must follow it's lead.  Easy for Lewy, difficult for me but I am learning. I sometimes wonder if this is a good thing or bad thing.

Our one and only problem is the driving issue. Because Hubby as had some wonderful physical days, some fairly good cognitive ones also ( gotta love Lew Body fluctuations) he is of the opinion that there is nothing wrong with him. Hubby thinks he has every capability of driving his car.

Recently Hubby and I finally made that trip to town. Hubby had gathered the collectible coins he was saving for the grandchildren and wanted to put them in the banks lock box. Sounded like a good idea to me although I was still uncertain about his other "things" he wanted to do. I was the chauffeur along for the ride. As I said we have had some very difficult days and they all start and end with the driving issue.

The tires that Hubby had ordered arrived for his car. The person that ordered those tires KNOWS hubby well and KNOWS our situation. I can only guess why that person would go ahead and order those tires and I had my say about the situation. Tire person , as promised to hubby, came to our home and retrieved the car from the yard to take it into town and put new tires on it.

So what happens to you when you purposely sell tires to a man you KNOW has dementia AND you KNOW should not be driving? For starters, once you drive away with the vehicle you quickly realize that the man with dementia forgot to fasten the hood of the car so the hood flies up and off the vehicle while you are driving it. Resulting in you walking back with it in your hands. 2) Then your notice that the car wobbles all over the place because the man with dementia filled a tire full of fix a flat but never rotated the tire for equal distribution making the tire way off balance due to the accumulation of fix a flat in one spot. You drive this hoodless wobbler the 6 miles to town and 3) have our local police dept pull you over for swerving all over the road. The police man alerts you that 4) the man with dementia has forgotten to affix the yearly tag renewal sticker and 5) the man with dementia dropped the insurance on said vehicle many months ago. Finally when you get the vehicle to the shop you realize that 6) the tires don't fit because the man with dementia gave you the wrong size to order.
But hey, You got your $240 so why worry now.
I suppose it would be very smug of me to say that I like how well God can handle situations, and make points so much better than I can.

Yet our driving issue didn't end there. We still deal daily/ hourly off and on with anger issues from Lewy.

We made the trip to town and carried the coins to the bank. Once inside Hubby became confused as to what he wanted to do with the coins.

We live in a small town so our banking people know us by name and face. We were greeted with a friendly hello and offer of assistance. Hubby told the lady  he wanted to cash the coins in. I questioned his comment and asked if that was really what he wanted. I reminded him they were the coins he was collecting and the original idea was to put them in the lock box. Hubby just stared/glared at me. Then he told the bank woman to remove me from the bank accounts. I was stunned. Had I just been duped into this horrific scenario?

Knowing our situation the bank woman asked him if he was sure he wanted to do that. She explained that she would be happy to help him do what ever he wanted but he needed to realize that if he chose to have me removed then I would no longer be able to take care of the bills and buy groceries and supplies.
I sat there praying as she spoke kind gentle fumbling words.
Hubby told her he didn't know how I was getting all his money and he wanted it stopped.
She explained that he set it up that way so I could pay the bills.
She again asked if he was sure that was what he wanted. I asked to speak to him privately and we went into a conference room. With some calm gentle fast talking I was able to talk him out of doing anything and got him to put the coins in the lock box and leave. WHEW! What a scary situation. Needless to say we are NOT making more trips to the bank.

Once we returned home Hubby got undressed and went to bed. Later that evening I woke Hubby for supper. After he ate he came to me and motioned for me to follow him. He said wanted to ask me something. When we entered the bedroom he asked me
"What do you notice different about this trailer? (We do not nor have we ever lived in a trailer)
I wasn't sure what he was referring to so I said so. He pointed out the wall we built for the duct work.
I happily recalled to him our building it many years ago to accommodate the duct work for our house and he agreed and appeared satisfied and pleased.
Later he came to me and asked me how many children I had. I just smiled and told him that he and I had 3.
He said, "Well I just didn't know"
I asked him how many children he had and he answered "Somewhere around 6 or 10" (He has 6)
I laughed and said that was a lot. He agreed, laughed and walked off.

The next day I contacted his Drs about these behavioral issues. I had been advocating for less meds to try and give Hubby a better quality of life but my fear is that all I have succeeded in doing is to make him agitated and more delusional. The Drs and I  are in agreement to increase the depakote he is taking for his anger management. A medicine he has taken for years anyway due to his PTSD.

My decision to cut back on meds was based on how docile and apathetic Hubby had become. So now I must weigh the long run. Subject Hubby to less meds keeping him in an agitated angry delusional state of mind that will put not only him but others in danger should he insist on driving and attempting to. He has made it VERY clear to me that when the car is returned he is leaving and getting divorced. Something else he is angry about because he doesn't remember us even getting married.
or is increasing his meds the best option to make Hubby the most comfortable and safe. I choose the latter and his Drs and our family are in agreement.

I believe the God I serve and put my faith and trust in can take Lewy away if he chooses. Until then difficult decisions must be made so please pray for a steadfast heart, clear mind, and a calm spirit as we deal with each day ahead.

Tuesday, March 16, 2010


[Opening narration (season 1)]
Narrator: There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call the Twilight Zone.

Daylight savings time messes me up for a while. Just as I'm about to get used to it, it changes again. :-/

Since Hubby has no concept of time any longer he really doesn't seem bothered by the time change. Getting up when he wishes and eating when he wishes. No matter to what time it is. Time is just a word.

For me, it still has some meaning. Because Hubby has an aide that comes I need to make sure I have been up for a while and had some coffee in my system before she arrives on the early days. Since I have limited "going" I do much ordering on line for various items so I make sure I'm up and dressed before I get caught in my jammies when deliveries come. I actually found an online site, alice.com, that has many of the products I use on a regular basis for right at and sometimes below, sometimes higher, than what I would normally pay so I order those on line now and they are delivered free. YAY!!  Mondays are trash days so I must rise early enough to drink a cup of coffee before I must dress and trek the trash to the end of the long driveway before the trash man runs. Time and days still have some meaning for me.

Yesterday was Monday, trash day, but Hubby had already gotten up before I did. He was actually the one that woke me with his rattling around. And NO he did not think to take out the trash.

Hubby had things on his mind he wanted to take care of. I wasn't too happy with his "things" as I feared they had much to do with the driving aspect we have gone round and round about. Hubby was not clear on what he wanted to accomplish.

He decided we were to go into town and off he went to get ready. He shaved (electric) got completely dressed and waited as I finished up. Talk about oddity. He hasn't been able to accomplish that in what feels like forever. I was happy he could though.

As we were headed to the door I couldn't find my house keys. I searched and searched. I tried to backtrack every step I had made since the last time I saw them on Friday. Hubby waited patiently on the steps while I looked. I searched my purse, removing everything in it more than once. I searched the car more than once. I looked in every cubby and pocket. Between the seats under the mats. The only thing I found in the car, besides the regular junk, was a half empty coke bottle, a nasty lip gloss, half melted mint, empty tic tac container and a penny. Penny for your thoughts ;-)

I searched my home. I took everything apart emptied every drawer, cabinet, went through the freezer, fridge, looked in the hamper and washing machine. Raked the burn pile and the leaves closest to the house. I went from confused to frustrated to annoyed.

I called the Post office, all 3 stores I went to, the big time weekly newspaper, I even went so far as to call the police station. Yes, I was desperate to find them. I don't know why. They were just house keys after all but it was the sheer fact that I could not remember where I may have lost them. I wondered if this is how Hubby feels much of the time.

I finally graduated to obsessed about it!! So much so that even hubby was laughing at me. I felt like it was making me nuts. Perhaps it was me with the problem and not Hubby. nahh lol!

This day had not started out very well and as time marched on it was too late for us to go anywhere and be back before the aide arrived so the trip to town was cancelled . I was actually relieved.

Hubby's aide was ill so he had a sub aide. While she was here Hubby brought her to the room with the digital picture frame in it.

Hubby and I had been blessed to be on the recipient side of a gift of a scanner which has been put to LOTS of hard work scanning pics of old and transferring to the frame. Hubby has really enjoyed sitting and looking at the pictures of when he was young and younger. Old family photos of loved ones already gone and photos of what we now call simpler times.

Still in key hunt mode I heard Hubby talking to the aide and it made me stop in my tracks. He was telling the aide about every picture in the frame. He was giving her names and locations. Details about things in the picture backgrounds. He talked about my family and how they were related to me. He even remembered my mother. He hasn't been able to associate her to me in a while.
He named all of the kids, his and ours along with the grandchildren. He named his parents and all of his siblings and their children giving a brief description of their relationship.
I stood in the kitchen in disbelief of the things I was hearing. I wanted to shout with joy! I wanted to cry happy tears! Mostly I didn't want the aide to leave so I could listen longer. 

For a while Hubby was back. At that while I would have said completely. I believe he could have done anything he set his mind to.

I want/ed to believe he can but reality holds me back. I know this won't last but I still want to enjoy and appreciate it. The sad thing is that this moment of clarity makes it even harder for Hubby to accept he has a problem.

Today has a different tone. Hubby just came to me very upset that his drivers license has expired. He knew they would. He saw the reminder and we talked about it. I posted it on the bulletin board but never reminded him when the time came to renew. (I know, bad me) Today I'm the bad guy. Guess we play it by ear.

Why must Lewy Body be so mean as to dangle the chocolate carrot in front of you only to pull it back and take a bite from it?

Oh and FYI, keys were located. I called the Post Office back and since one of the keys was a PO key they just put them in my box. YAY!!

Some days it truly feels like living in The Twilight Zone.

Friday, March 12, 2010

Red Light, Green Light

When I was a young girl we played this game called Red Light, Green Light.

One person was 'It" while the rest of the kids lined up in a horizontal line a ways off but withing hearing distance and as "It" turned their back on the line and shouted "Green Light!", the line would move as fast as possible toward "It".
"It' would shout "Red Light!" and the entire line would have to freeze in their tracks.
If upon turning around "It" spotted someone still moving that person was out.
So the succession of moving forward very quickly and sudden halts continued until someone reached and tagged "It" and was declared a winner.
I learned the hard way that running wasn't the best option as it was harder to come to a complete stop when necessary and I didn't like being "out".

These days  I feel like I'm playing Red Light Green Light with my emotions and Lewy is "It"

The last few days have been fraught with Hubby's anxiety about driving. His wanting too and my insistence he shouldn't. Needless to say the tension in the house has been very taut at times.

There are times when it seems finding a way to drive is all Hubby thinks about. He dwells on it, talks about it plans for it. My refusal to help him accomplish that goal is met with anger and frustration. The anger and frustration are then matched by my own.

What I find the oddest about it is that I have handled (or seem to handle) any other issue with Hubby fairly well.
I don't make issue of other things but perhaps those other things don't feel like they are a danger to the well being of Hubby. I seek solutions to make Hubby's life more convenient and comfortable. Hubby hasn't always wanted to concede to them but in the long run did with little to no objection and was happy he did.

 But not driving? Being carried around by his wife everywhere? He will not hear of it.
If you listen to him I have made his life harder. I am keeping him under my thumb and won't let him do anything. I don't do anything for him anyway and he is quite capable of taking care of himself.

Lewy Yells

"Green Light!": Tempers and feelings begin to boil charging full steam ahead. I have really prayed to be able to keep my focus at times like that especially. Like the game I have learned that full blown yelling and verbal tantrums do nothing but leave me still in motion when Lewy yells...

"Red Light!":  it is then that neutral corners are taken and Hubby wanders away. I, still frozen after my emotional upheaval waiting for the next green light only to be approached by Hubby to assist him with something he can't do. His child like approach for the chore causes my emotions to have to switch just like a switch. Hubby will stay in this red light phase for a while then reapproach me about my continuous control of him.

"Green Light!" Once again defenses go up and emotions take the quickened pace forward.

"Red Light!": Hubby once again retreats leaving me screeching in my tracks.
Hubby stays gone a while this time. I sit and stew leaving Hubby confused as to why I am upset. Hubby decides he needs to tell me something he found amusing about the cats or the dogs. Once again emotional switch.

The cycle continues.

Sadly Lewy has taught Hubby the rules of the game on how to "freeze".  (forget)
I on the other hand keep watching as Lewy steps farther and farther away making it impossible to be able to catch up and tag him. All I can do is be as still as possible and continue to pray for the strength to get through this time.

I wish this verse would pop in my head a little quicker at those times.
"Be still and know that I am God". Psalm 46:10

Wednesday, March 10, 2010

Stinky Fruit

Galatians 5:22-23 But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.

 I think fruit baskets are so pretty. Big, roomy, beautiful, intricately hand woven baskets. I imagine that inside them contain edible goodies of
 Apples, red, green and yellow, with deep colors. Some sweet, others tart, Some crisp some a little softer to chew.
 Peaches plump and tender with that fuzzy baby soft feel to them. Once bitten into a syrupy sweet juice rolls down the side of your mouth.
 Bananas safely swaddled in their yellow cocoon protecting their delicate sweetness.
 Pears smooth yet soft to the touch.
 Strawberries bright red capped with their star burst leaves.
 Oranges round with their bumpy outer layer encasing the sweet goodness of those small juice filled capsules.
 A tangy lemon that can leave you with a sour looking "lemon face" but beckons you back for more.
 Lest we forget the raspberries or cherries or blueberries or the plethora of others fruits each with their own delicious flavor and appealing looks.

As I envision this beautiful basket my mouth waters and desires to have some of this goodness and upon seeing such a basket I'm sure some of you would even be tempted in wanting to partake of  it's bounty.

 As a child of God and believer in Jesus I consider my body a vessel or basket if you will allow me, for the Spirit to reside in. This does not make me perfect by any means. My basket although intricately woven is pretty bent and lopsided. The fruit inside that I desire to have is not always fresh. Many times my fruit begins to turn. The fruits bare spots of brown. Many times I overfill my basket with sourness and bitterness. Some fruits of the not so appealing kind I have a tendency to throw. Other fruits I completely ignore leaving them to become molded and rotting. As such my basket begins lo leak and ooze leaving a messy trail. Sounds gross, feels gross, smells gross.

Stinky Fruit!

Lewy Body is certainly a strange  and complicated disease. Not only to and for the person that it has been afflicted but also to those who love them.
As a spouse and a full time caregiver I try so hard to be loving and supportive. I have Hubby's best interests at heart and I advocate for a better quality of life for him.
I love Hubby. He is the other half of my life. During the time of our 17 month separation I realized that I had not many adult memories that didn't include him in one form or another. I couldn't find much that didn't involve him.

I was joyful he returned even though he was soon diagnosed with Lewy. I still am. I make it a point to look for something daily to find joy in. With Lewy some days are easier than others.

I try and keep an inner peace for both of us. Hubby has a difficult time processing lots of information. We tend to always eat at the same place for the familiarity. The crowd of people, although he is familiar with many of their faces, and their conversations has a tendency to confuse Hubby and he will usually sleep a few days afterward whenever he is overstimulated. We try and remain a drama free zone.

I am fairly patient person. I learned NEVER pray for patience as it's just asking for trouble. Tribulation worketh patience. My lessons learned! Why don't people realize that? LOL! So, it takes at LEAST 2 hrs for us to get ready to go anywhere. So, I can wait 30 or more minutes for Hubby to finish a meal before we leave a restaurant. Yes, it takes Hubby an extremely long time to answer a question or say a sentence. We won't even mention the time it takes to walk from the bedroom to the bathroom. I have nothing else of great importance to do, and if I did, I would have made different arrangements to accomplish my task.

I make an effort to treat everyone with kindness. Hubby is no exception. Kindness goes a long way, even with Lewy.

I seek to do good for Hubby in ways that will make him more comfortable and his life more convenient and less stressful.

I remain faithful in advocating the best care for Hubby. I promised better, worse, richer, poorer, sickness and health until parted by death. I meant it, I mean it. I will do my best to keep Hubby home for care. I do know the day might come that placement in a care facility may be the best thing for him. Should that day ever have to come I will know in my heart that I did everything in my power to afford him a quality of good life and placement does not mean giving up and forgetting.

It is my desire to handle Hubby with gentleness not only in touch but in word.  I let Hubby do the clinging to me if he needs support for walking, standing or whatever. His muscle tone is so weak and skin so delicate that a tight grip can leave a bruise or a mark. I try to speak in gentle tones as not to startle Hubby. Often though he is startled by me whenever I say something to him. Sometimes he even makes me jump.

There are times when Hubby can do or say things that can leave me annoyed or frustrated or angry. Much of the time I have to treat things like water off a ducks back. Sometimes I can remember that becoming immediately upset only leads to frustrations for both of us. SO I take a split moment to ask myself, how much self control shall I apply? The usual answer is a ton!

Now the BAD news. I finds that there are times I get sucked into the rotting fruit category.I don't check the basket for signs of decay and place heavier items on the tops of delicates leaving them squished a unrecognizable by the time I choose to dig them out and engage in a food fight. Sometimes I throw the entire basket. Sometimes I completely trip and scatter my fruit unable to find it. Much of the time because I chose not to really look that hard for it.

There is GOOD news. Human as I am with emotions and feelings of the stinky oozing nature I still covet to have good fruits. So instead of beating myself up over and over about the things I did in a food war I can ask for the loving Grace and forgiveness of my heavenly Father. He, the master gardener and healer purges the bad fruits from my basket. Making it whole once again and replaces it. He plucks the thorns and rocks I have collected. Sometimes it hurts when He does. Sometimes he shows me that the things I have placed in my basket weren't really fruits at all and I hope that I have learned to distinguish them from the real thing the next time I see them. He balances the sweet with the sour and arranges them once again in my lopsided basket.

If I learn something from Lewy I hope it is how to polish those fruits and share them with others. My desire is that others WILL want to partake in the bounty of goodness.

I also hope the Hubby is the recipient of many of those good fruits, just not by having them thrown at him

I serve a loving God who knows how to take care of stinky fruit.

Saturday, March 6, 2010


I have worked closely with Hubby's Dr's to wean him from some meds I felt were not contributing to Hubbys physical and mental wellness. For the last few weeks Hubby has had no incidents of falling and he seems to be steadier on his feet and has a little more ability.
I fear that in my quest for Hubby's physical  gains the mental fluctuations have left me feeling like I am dealing with a double edged sword by the blade.

At a recent Dr visit with a mental health professional to discuss Hubby's feelings about his loss of independence, Hubby decided that I am the reason everyone is convinced there is something wrong with him. He is quite capable of taking care of himself and I have turned everyone against him. He then told his Dr that he was going to fix his car and divorce me.

Not a good day.

In Hubby's long silence between words and few word phrases to the Social Worker, Hubby announced, "I just found out about a house I didn't know we had".
The Social worker questioned Hubby about said house and I sat with a confused look on my face.
Asked where this house was Hubby couldn't answer so I asked him, "Do you mean the house we are living in now?"
Hubby answered "Yes"
I then asked "You mean the house we built 15 yrs ago that we are living in right now?"
Hubby looked confused and said "No"
I asked Hubby where said house was.
I gave him separate choices for deciding and each time he answered "No"
I asked what the address of said house was.
Hubby started giving the address but was having a difficult time recalling the numbers except for a couple I recognized so I asked him if they were thus and such and he, enlightened, said "Yes."
I looked at the Social Worker and he looked at me and asked me where that was.
I answered "That's our house we live at now.
Hubby insisted "No it wasn't"

Capgras delusional beliefs that people, places or objects have been replaced  with duplicates. 

After we left the Dr's office we stopped and had lunch and as I often ask whenever we have the opportunity to be out Hubby wanted to stop off at a friends place of business. Allowing Hubby to visit without my presence I sat in the car and waited for Hubby's return. Upon his return the friend told Hubby the tires he just ordered would be in Monday.
Stunned by this revelation and no legal authority to do anything about it, I simmered in my PMS.

Beating myself up for not shadowing Hubby. Refusing to make a stop and just bringing him home.
Then I would be beating myself up for keeping him captive. I feared that more than anything. I never want Hubby to feel like he is a prisoner. Sadly that is how he feels though.

So the double edge sword.
Hubby continued on the meds, stayed unstable sleepy and out of it not knowing who I am.
Not fearful or upset about his situation.
Hubby cuts back on the meds helping him become more mobile and more alert to some things, yet still with a mental decline incapable of making decisions. Anxious and upset about his situation. Feeling trapped and controlled.

Now it gets interesting.

Lewy (Hubby) decides he wants to talk to me about leaving and driving but can't decide what he wants to say.

PMS (me) says that between Lewy's confusion and her confusion she needs to try and sort things out.

Lewy doesn't agree and says there is nothing wrong with him and PMS is trying to convince everyone that there is something wrong.

Gloves On. DING DING

PMS throws a verbal left and then a right jab telling Lewy she doesn't have to convince anyone of anything as Lewy does a good job on his own.  Case and point, house comment at appointment today.

Lewy counters with a series of paused 3 and 4 word incomplete sentences.

PMS continues the verbal assault with another right and a bash with a left and a heavy thud right into Lewy's insistence on how Lewy intends to care for himself .

Lewy leans left to avoid the verbal jab proclaiming he could care for himself like he used to.

In a succession of beautifully placed verbal punches PMS gets nasty and reminds Lewy he can't even care for himself at home, then lists the dirty list of problems Lewy has.

Lewy with his gloves up insists that there is nothing wrong with him and he has every ability to care for himself.

PMS circles the ring asking Lewy why he doesn't do anything on his own then.

Lewy jabs with short stuttered incomplete sentences asking what PMS does for him.

PMS, taking a stunned shot to the head launches a tirade of all the things she does for Lewy from personal care to home improvement for Lewy's safety and comfort.

Lewy stumbles backward into silence for as while then takes a wild shot at PMS
keeping him under thumb, never wanting him to go anywhere or do anything.

PMS  deflects Lewy's hit by reminding Lewy he chooses to stay home and never wants to do anything but stay in bed.

PMS launches an uppercut at Lewy by informing him that he is the one that chose to give up and just die.

Lewy then swings in with a confused glancing blow that leaves PMS herself reeling in confusion as Lewy once again takes off about the capgras house.

PMS is confused and realizes this is a no win battle she grabs her crying towel and both she and Lewy complain with headaches and go to neutral corners.

I am not sure who got the TKO as neither seemed victorious.
PMS surely doesn't feel like a winner.
In Lewy World everybody looses.
And I feel like the biggest loser of all.

Tuesday, March 2, 2010

Super Heroes

 Hubby has no concept of time.

Time passed, time passing or time to come. Days, weeks, months ago could be a few mins ago to Hubby. An hour ago could be last week.
With no time concept Hubby is liable to do or want to do anything at any time.

The other night while we were lying in bed he decided he needed to shave. I am always happy to oblige this request as he hasn't the ability to do it on his own anymore, but 11:30 at night is a little late for me so I didn't offer. Hubby rose from the bed and walked into our bathroom then returned a short while later with a towel wrapped around his shoulders. Hubby made an announcement "I'm ready to take off"

Of course I laughed and asked where he was taking off too. He told me he had on his Superman Cape and clutched the towel. We both laughed and I got up to assist him with his shaving. After all, Who could say no to helping Superman? ;-)

Then there are occasions when he will get up at extremely early hours like yesterday.

Hubby had gotten up and ready for the day way before I ever got up and had any morning coffee. (never a good thing)

I found him sitting at the dining table going through the pictures I had laid out for scanning. I think I scanned about 100 new ones and added them to the digital picture frame. Hubby was very pleased with them and he and I sat and admired and talked about our lives that were flashing before our eyes.

I can not even begin to say how grateful I am for this awesome gift. A gift that reaches much farther than just a piece of technology. A gift that reached into the mind and heart of Hubby. Returning happy times and precious memories.

He then decided he needed to go outside and do some work on his car. He has his old car sitting outside on flat tires so I don't fear he will try to drive away. Nor do I believe he has the ability to fix the tires. He picked up a battery that was dead and carried it to the porch. He then connected the charger to it after filling the water levels in the battery. Then things got fuzzy. He wasn't sure how to turn the charger on so he came to me and asked for my help. 

I was surprised he was able to lift the battery and carry it. He hasn't done anything remotely strenuous in a very very long time. Because he sleeps so much and never does anything, his muscles have all atrophied. These days any activity on his part causes him discomfort from sore muscles. He stays in chronic pain, I believe, mostly as a result of no daily physical activity. I will not go as far as to say that is the only reason.

Hubby piddled around with his car for a while then came inside. I had been checking on him and at one point he was leaned over in his trunk. Feet on the ground, knees still locked so I knew he was ok but I thought to myself , "His back will be killing him for sure." And sure enough just a matter of moments upon his entrance to the house he requested a BC Headache powder for his aching back.

A couple of hours later he requested another but I told him it was way too early for another as he had just taken one. He wasn't happy with this answer and quizzed me about the time. Hubby stayed up the rest of the day but never did go back outside for anything. Later in the evening he was still complaining about his back hurting so I offered him another BC. He looked at me a little annoyed and said. "You just told me I couldn't have one, it was too soon". I told him that it was a few hours earlier I had said that and enough time had lapsed for him to have another. Suspicious, he accepted my offer to get him a dose.

As a result of Hubby's movement he was able to have another movement ;-)

Because Hubby doesn't move enough and continues to have a good appetite when he is awake or raiding the refrigerator at night while he wanders, he suffers with constipation. I keep harping to him that he needs to drink more fluids and move more but my words just float away. If he is going to sleep all the time I almost wish he wouldn't eat so much. If he's going to stay awake I wish he would be more active.

I guess I'll just keep wishing and every 3rd day or so arm myself with the bathroom weapon of mass destruction as I assist "Superman", as his sidekick "Plunger Girl".

Monday, March 1, 2010

Don't forget to smile 2/15- 2/28

Feb 15: Got sucked into a TV show marathon so as Hubby slept by me I let time slip away. Finally realizing how late it was getting I scooted off to the kitchen and threw together some random food items for supper. Put it all on a platter with 2 forks. Spread a tablecloth across our bed and Hubby and I had a picnic. Our first :)

Feb 16: Hubby and I were eating fudgesicles in bed and I asked him to throw away my wrapper. He leaned too far over and nearly fell off the bed. He has a grab bar to help him get out of bed so he grabbed it. I asked, "You want me to help and grab the back of your pants?" Quickly sitting up at that offer he said "No". I didn't know he could sit up so quickly ;-)

Feb 17: Hubby tried to sneak up on me and scare me. Silly man. When I popped his balloon about it he decided to put a cold cola can on my skin !! BRRR!!! I didn't know I could move that quickly ;-)

Feb 18: Cruisin along in our automobile with no particular place to go. How I enjoy times we can just get up and go. It can certainly be an adventure. ;-)

Feb 19: Paid the price by having a busy day the day before. Bobby was so exhausted he slept all day

Feb 20: Hubby and I spent a while looking at and talking about the pics on the digital picture frame. He really enjoys it. I need to get a scanner so I can scan old pics and add them to it for him. :)

Feb 21: A day of sleep

Feb 22: Hubby walked outside by his own choice. A rarity for him. He was wearing his red housecoat so he put on his Razorback cap (He made a choice). He looked so cute. :)

Feb 23: Watched a show in which 2 guys spent the night in a lodge, one said, "Nothing personal" and then he passed a loud body function to which he said, "Scares off the bears" I laughed out loud and asked Hubby "Is that what you do honey, keep the bears away?" Hubby chuckled and said "Yep" to which I replied with a side ways glance, "Yeah, me too" We both just busted out laughing!! We are bear free ROFLOL!

Feb 24:
Feb 25:

Feb 26: After a couple of very quiet and at times difficult days, today all I shall say is even though my plans for hubby and I to go somewhere got killed, I appreciate that Hubby didn't want me to miss out and told me I could go alone. (Thanks to our daughter for helping me find a smile)

Feb 27: With no concept of time Hubby decided he needed to shave at 11PM. An ability he no longer has but went into the bathroom to accomplish. He walked out into the bedroom a short while later unshaven with a towel wrapped around his shoulders and announced he was ready to take off. He said he had on his "Superman cape" Who could say no to helping Superman shave? Not me :) UP UP AND AWAY!