How can I be angry at him?

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

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

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

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

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

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

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

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

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

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

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

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

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

In everything give thanks.

Some days my heart and soul need to sing or cry

A few hurdles jumped

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

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

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

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

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

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

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

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

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

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

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

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

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

So much for that

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

Sufficient Day

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

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

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

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

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

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

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

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

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

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

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!