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.

Unbelievable

[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.

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