December 28, 2011

What is going on?!?!?!??

Taylor & I went to see Daron on Monday December 26 for Christmas with him & my in-laws. We had a great day while opening gifts & spending time together. Taylor was so excited with the gifts he got from his grandparents & Daron seemed to enjoy having his family there for a few hours. Taylor & I left 2 hours after we got there (the longest that we have stayed) & headed back home. I called Daron about an hour after we got home to let him know that we made it ok & that's when something odd happened.........

Daron started to talk about wanting to leave the VA. Now I have had this conversation with him many times before & can usually change the subject easily. This time was different. I couldn't understand some of the things that he said & he didn't like that he had to repeat himself. But then he said that he was going to  sign himself out. I asked Daron where he was going to go & he said that he was going to move in with his parents. (Please keep in mind that both of his parents on in their 60's, his Dad has MS as well as a bad back & shoulder & his Mom works a few days a week. Considering all of that information & the fact that Daron needs 24-7 care, that would not be a good place for him to go. I mean, if I can't take care of him myself at 30 years old, how can his parents - no offense to them at all!)

I tried to talk Daron down from his thinking pattern & his agitation, but it didn't work this time. When he began yelling at me I had to hang up the phone. Unfortunately that is the only way to end a conversation when he is that agitated. He did call back & tell me that he was going to fill out the paperwork & I had to let him do so.

After ending the call with Daron I immediately contacted his parents & let them know. Then I called the psychologist who sees Daron & the charge nurse that night & alerted both of them. The nurse made it seem like it wasn't a big deal & I haven't heard from the psychologist yet. I called today & spoke with the charge nurse to get an update on Daron - I haven't heard anything from him since our conversation Monday night. She said that he is doing fine & hasn't mentioned anything to her about wanting to sign himself out.

My biggest concern is that this whole situation is going to start up again tomorrow - since that will be day 3 since he talked about doing this. With his dementia he probably doesn't understand that he needs to fill out the paperwork first & then the 3 days begins. I am concerned for his safety & the safety of the staff & the safety of his parents above everything else. I am worried that if he is told that he can't sign himself out he will just leave the building, try to come home or go to his parents & get lost along the way. I am worried that we are entering a really difficult phase of his dementia & that this topic is going to come up a lot more often.

I am just worried about my husband & best friend. I don't like seeing him like this. I know that it is the disease that is making him act this way, but I don't like it & I don't have to like it either. I don't have to like the fact that MS & dementia are slowly taking away the only man that I have ever loved. I don't have to like the fact that MS & dementia are taking away my son's father. I don't have to like that fact that one day my husband will look at me & not know who I am. I don't have to like any of it. But I have to trust in GOD that He knows exactly what He is doing in this situation. I have to trust that God alone will get me through this. I have to trust that God will give me the strength that I need to get through everyday. I have to trust that God will give me the peace that passes all understanding. I don't have to like what is going on, but I have to trust the One who already knows how this will play out.......the One who knows the outcome.......the One who will not give me more then I can bear......the One who is always beside me through every step........the One who will carry me when I can't go on anymore.......My Father, Savior, Deliverer, Creator, Beloved!!! He alone will get me through this. He alone will get my family & extended family through this. He alone will never leave or forsake me!!!

December 21, 2011

I wonder........

Here we are 4 days before Christmas & I am starting to wonder a few things.....

--Have I absolutely done all that I possibly could for the best of my family??
      **Yes I have! I have put my son & my husband ahead of my own needs each & every time. Even though being apart from my husband is the hardest thing in the world, I know that I have done all that I possibly could for the best of my family.

--Is there more that I could have done in order to make sure that I did my best for my family??
      **I don't think so. I do all that I can & give everything that I can each day that the Lord gives me on this earth. There are times that I look through the rear view mirror & wonder if I handled things properly, but I never regretted anything that I've done over the last few years.

--Why does God put tough situations in our paths while we take this journey called life??
       **I really think that God put tough situations in our path in order to make us stronger & remind us that we need to rely on Him for everything. That has been the biggest thing that I have learned through all of this. If I didn't have God's strength to get me through every day I know that I would not have made it through any of it.

--How tough is this Christmas going to be on Taylor & I now that Daron is an hour away??
       **That is a tough one to call right now. We are going to see Daron on the 26th to celebrate Christmas with him then. But other then that it really is to tough to say how tough Christmas will be. I'll just have to wait & see how things go.

--How can I feel so lonely when I am surrounded by wonderful friends, family & the best son ever??
        **I miss my husband - the man that I married 9 years ago. The man who was apart of my life just 3 years ago. I miss the companionship of that wonderful man. I miss having someone to bounce ideas off of. I miss having another parent to help me deal with Taylor. Taylor & I have gotten closer over the last few months & we are learning how to get on as just the two of us. Taylor has even said himself that he is lonely & misses his Dad from 3 years ago. We both know that Daron is in Battle Creek, but that isn't the Daron that we remember & miss. I'm so thankful that Taylor remembers the good times with his Dad & is starting to forget the bad times.My prayer is that the bad times will disappear from his mind forever. 

--Did I do what was absolutely in Daron's best interest by putting him in the Battle Creek VA??
       **Yes I absolutely did & no one will ever tell me otherwise!! I know that there are people out there who think that I just dumped my husband so I wouldn't have to deal with him anymore or because I don't love him anymore. That Is Not True!!! Daron is in the Battle Creek VA in order to get the care that he needs. I have taken care of him for 2.5 years, but in a way I was not taking care of him. He needed better care then I was giving him. Now he is getting that care. He may not think that he needs to be there, others my not think that he needs to be there, but he does! He needs 24-7 medical care & he is getting the care he needs now. So to those who think that I am a bad wife for placing him in the Battle Creek VA........Please stop trying to make me feel like I'm a horrible wife!

--Is there a way that I could take care of Daron at home on my own safely??
       **No! Daron needs around the clock care & I cannot provide that type of care....ever. The only way for him to get around the clock care is to be in a nursing facility. At the Battle Creek VA he has a life & he has acclimated -- he has a job, he has PT 3 days a week, he has people to hang out with, he has regular activities that he goes to, the take him on outings.....life is better for him at the Battle Creek VA. As hard as that is for me to admit as his wife......I Cannot Take Care Of Him On My Own Anymore!

So that is what I've been wondering these last few days. Now to finish off 2011 on a good note with my Lord. I know & trust that He will have many adventures for me to face along this journey as I enter 2012, but I also know that He will get me through each & every one of them. There will be times that He will have to carry me along the journey, but that's OK. I need to be carried sometimes in order to get through some thing is one piece. If I try to get through some thing on my own I will get myself into trouble & make things worse. God knows exactly what He is doing each & every time!! Thank You Lord for always being there for me!

December 12, 2011

Back were we started.......now what?

After a conversation with Daron the other day, I realized that we are back were we started. :-(   I know that because we had the same exact conversation that we had a few months ago. Apparently this is normal in people with dementia since they can't keep track of things like a "normal" person does. Basically I am reminded of the movie "Groundhog Day" where he repeats the same day over & over & over & over again. That's the best way to describe a relationship with someone who has dementia - you have to repeat conversations over numerous times. You can repeat them over the course of a day, a few days, a week, a month.....you never know how long you will have to have the same exact conversation with someone.

On top of all that, when you have the same conversation, you have to remember that the person with dementia will never remember that you have had the conversation each time. So in a way you can control the conversation - how long it will last, where it will lead, etc. But the biggest thing to remember is that you can't take over full control. If you do that, then the person with dementia can possibly freak out if they wanted to talk about certain things. It is kind of crazy how many things there are to remember when you talk to someone with dementia.

Then there is the emotional side to caring for someone with dementia. It is crazy emotionally draining. If the person with dementia says something rude & hurtful, you can't really call them on it because they have no don't realize what they are saying when they say it. A person with dementia looses their ability to filter what they say & when as they progress in the dementia. That is quite possibly the hardest things to remind yourself when you are in the moment. I have to admit that personally, for me, it is really hard for me to not react when Daron says something that is absolutely uncalled for, hurtful, rude, inappropriate or just downright mean. Best way to describe it - imagine getting punched full force in the gut over & over by someone who love more then anything in the world, then looking at that person & saying "Thanks honey", then letting it go & ignoring the intense pain that you are in. That's probably a rough comparison to hear, but that's the way it feels to me at times.

With all that said, please don't think that I don't love my husband. I am absolutely head over heels still in love with my husband. I want the best for him each & every day. I want him to get the best possible care. There are just a lot of days when I don't want to answer the phone when he calls because I know that we will have the same conversation that we had the day before (or the same conversation we have had for a week straight). That sounds bogus, but it's true. I never thought I would get to the point when I would dread hearing my phone call & seeing Daron's name on the screen. I never thought I would want to turn my phone off for an entire month just so I wouldn't have to repeat a conversation. But that is my reality right now. That's the journey that I am on right now & I have to take this path for the time being. I know that the Lord will get me through this time in life. I just honestly wasn't expecting to get to square one again this soon. Now that I am having to start over, I have to remind myself that this will pass soon & I just need to fully rely on God to get through this time.

December 7, 2011

Dec 7, 1941 -- 70 years later

It's hard to think that Daron & I were standing on the USS Arizona Memorial in February of this year. That was an amazing experience in itself. Just to stand in complete silence & watch the "black tears" bubble to the surface......to smell the fuel lingering in the air......to see the sheen of the oil on the surface of the water.....to see the many names of those who gave the ultimate sacrifice......to see the battleship itself under the water...........

Thinking back, I pray that God continues to grant peace to the family members of those who lost their lives 70 years ago today.

Here are some of the pictures that I took while we visited that powerful memorial......
View of the Memorial as we arrived

USS Arizona bell


USS Nevada marker - marks where the Nevada was at 70 years ago.

Tree of life etched into the Memorial

USS Arizona marker

USS Arizona marker & gun turret

Approaching the Memorial - the gun turret, marker & Memorial

The gun turret - you can see a sheen on the water from the oil seeping up

Closeup of the USS Arizona marker

View of the USS Arizona from inside the Memorial

Wall of the names of those who lost their lives

Names of the survivors who have had their ashes interred with the Arizona after their passing

View of the Battleship

Old Glory waving proudly over the Memorial

Entrance to the Memorial

USS Missouri on the left & the USS Arizona Memorial on the right

Tree of Life sculpture - it's also on the memorial

Model of how the memorial is sitting over the USS Arizona

Another view of the memorial model

The anchor from the USS Arizona

One of the plaques by the anchor

The other plaque by the anchor - it was cast in Chester, Pennsylvania in 1911. It weighs 19, 585 pounds

Struggles

I have been struggling to.... ....get out of bed in the morning. ....be a good mom. ....take care of my house. ....take care of myself. ...