Still alive...

So the day of my last post was a day my life changed.  I noticed that evening that my husband was not talking much at all and I tried to get him talking to see if he was just choosing to be quieter than normal or if he really was having an issue.  Of course it was an issue.  We got an emergency neuro appt the next day and they started treating him with IV steroids and planning for a weeklong stay at a specialty unit in the Syracuse VA.

Long story short - I did get a part in the musical and I had to turn it down and bow out completely because that week my life changed significantly as I became full time caregiver to my husband whose MS had definitely gotten much worse.

I am now blogging at "www.marriedtothemonster.com" although not very regularly there either.

Going back to my roots - or going full circle?

Things have gotten to the point that I just feel trapped.  I feel betrayed, lonely and trapped. I'm not sure how to address this and I keep wanting to go back to my roots, back to the days when I went to church regularly, when I prayed prayers that were not just pleading for mercy, when I felt part of a community, and felt love from a group.  When I believed that God loved me and had a plan for my life. I sure can't think this was the plan and I'm sure that somewhere along the line I deviated from the plan and got sent off into this alternate reality.  I don't know I've gone round and round with this, fate versus destiny versus luck (or lack of luck) and I keep wanting to go back to the place that made me the girl I was 20+ years ago before I took this crazy path.

I guess I'm looking for someone to help me make the best of my current situation, to support me in the life I have now and to give me some hope.

So next Sunday I'll be setting foot in church, specifically the church I used to be a member of, where I taught Sunday School and directed the choir and sang solos on Sunday morning.  The church I left in 1995 when I chose that horrible guy that led me astray over the life I thought I was meant to live at the time.  Many additional choices past that one lead me to where I am today and yet I feel going back to this place, and these people may be the place to start healing some of this pain.

I know it won't change my situation - a husband with dementia who takes his frustration at the world out on me - but perhaps it can change the only thing that I control - my reaction to his abuse, my heart.

Still here, still hanging on...

Marriage counseling is brutal, not sure if it is going to help or if it is going to make me want to run.  The things that are coming out are horrible, bad feelings and arguments and it just doesn't feel productive.  The therapist is just an intern, she is working on her master's and she is young and never married.  Not sure she really has any insight for us but she does try to keep things on track and not let it get too ugly.

I probably need to get my own therapist but so far I'm making do with this one, he listens well, never contradicts me and will lick away my tears to hide the evidence.

I am also spending a lot of time becoming very domesticated.  No not cleaning although I need to spend more time doing that but I have canned peaches, made quarts and quarts of tomato sauce that I canned and finally made and canned applesauce.

I am quilting up a storm, sewing is relaxing and keeps my hands busy.

I scour pintrist for projects and for the most part am fairly successful at the things I try to do but I have never had a talent at decorating cakes.  Just doesn't work out for me and I follow the instructions to a T and still I have this:

Ah well this cake is for my friend Marcia's birthday - she will appreciate the deliciousness of it even though it looks like a sad excuse for what it was supposed to be.  

So I'm soldiering on, some days  are better than others.  

Not too optimistic today...

I got rid of the "other woman" she took my email warning her to back off to heart and she blocked my husband from her facebook page.  He also sent her a message saying he couldn't talk to her "as much" uh ya think?  But she is out of the picture.

Today we start with a therapist together.  His psychologist put in the referral.  I'm not really hopeful because he tells people things like "we are going to marriage counseling and if it works, okay and if not I'm going to Ohio."  Sounds like he has no plans to work on anything.  I imagine he expects the therapist to tell me what I need to do to be a better wife and he will get to sit back and agree.  I don't think he has any idea what will actually happen in there and how bad it can be because I plan to tell the truth, THE WHOLE TRUTH and nothing but THE TRUTH.  So it will be emotional, and he will NOT be looking like any kind of saint.

The person we are meeting with is the Psych Intern for the VA not a seasoned therapist.  I don't think she is ready for us, but I guess we'll see.  It is worth a shot.

Because you matter too...

One of my husband's healthcare providers (a social worker in one of his clinics) gave me a hug on Wednesday when I sorely needed one and told me that it was because I matter too.

It's nice to hear this once in awhile, she is a great person for always noticing me and what I'm feeling.  Down is what I was feeling Wed, very down.  Her attention helped.

His illness is all consuming.  It has taken over every part of our life, my life.  He wants people to see him for who he used to be and not who he has become so he lies.  He talks to old high school friends and he lies.  He has inappropriate conversations with other women and he lies.

I know I'm here day in and day out and he can't lie to me about his illness or it's severity so he seeks others who don't know and he tries to make himself feel like he used to because they don't know or understand that he is not at all who he used to be.

The latest instance was with a friend he had from high school, a woman of course.  Some chatting got way out of hand in my opinion.  I know and understand his illness and that impulse control is nearly zero for him.  What I want to know is why she went along with it?  She is supposedly in a relationship and happy and she KNOWS he is married, happy or not you don't go there with someone else's husband, not if you have any class that is.  Maybe it's just me being pissed off, but I have spent the last 4 days writing a letter to let her know she has been played, and that I have caught her out and that I am NOT amused and wish her to just drop off the face of the earth.

Somehow not finding the nerve to push send right now.  But I will, yep I am going to tell this woman to BACK OFF my husband, or maybe I'll offer to drop him and his dirty laundry and many problems off on her doorstep, that is if she really wants him so bad?

And the bad news is....

Despite a fairly long period of no major changes in my husband's disease state it has become apparent that his MS has begun progressing again.  He had been switched from a diagnosis of Relapsing/Remitting to Secondary Progressive.  This was not unexpected and in fact the lack of major relapses has been a blessing for approx 5 years.  However he has weakened considerably in the last few months and his last neurology consult showed that he has no feeling in his right leg, he cannot differentiate between hot and cold and feels nothing when pricked with a pin.  It's a good thing we got the hand controls on his truck several months back as that leg is not very strong on reflex either.

MRI's have been scheduled and follow up visits planned.  And a chain of worrying has started in my brain.

Exercise in Futility...

My husband is negative, always negative.  He will focus on the things that piss him off rather than the good times every time.

He just got back from 8 days all expenses paid in Aspen, CO where he got to ski and kayak and scuba dive and spend time with other veterans.  I have to drag out of him the fun things he did, but he will readily tell me about the other veteran on his team who pissed him off and what a bitch he thinks she is.

If you ask him about our cruise in 2011, he will not mention the great times, the swimming with dolphins, the money he won playing poker, the great shows we saw.  Nope he won't talk about those things at all.  He will tell you about the kids who ran in front of his chair without watching where they were going and the little girl who screamed in his ear at the buffet one night.

Today we went to see a friend for lunch.  Originally it was just me and the friend but I was feeling generous and took him along.  As soon as we got there he was complaining about all the slow drivers, then as we are trying to converse he's telling her about how my brother in law (that she doesn't even know) pissed him off last night over something really ridiculously stupid.

I SNAPPED - "STOP COMPLAINING" I said "All you ever do is complain, complain, complain, you are the most negative person I know and it's driving me CRAZY"

This was of course the WRONG thing to do but everyone has their breaking point and I had reached mine.  I wanted to spend time with my friend being positive and friendly and not bitching about people she doesn't even know.

He went nuts of course, stood up and stormed out after yelling loudly at me in the restaurant that we were headed for divorce.  I called his bluff and said - "FINE file the damn papers already" and he starts to leave but goes and gets a to go container to take his food, then comes back to pack it up and we talked him into staying.  I did apologize to my friend for snapping and starting the mess. She understands and certainly doesn't blame me.  In fact she has told me many times that she could not/would not do what I'm doing.

Ever since, I'm still a bit shook up by it.  Him? He's acting like nothing ever happened.  Isn't dementia fun?

Promises broken...

I know that his disease really does affect his thinking.  I know he has dementia and cannot always help the things he says and the things he does.

Part of me can forgive him over and over and over for the same offenses.

Part of me dies a little inside with each new lie, each promise broken.

Part of me wishes walking away were an option.

Part of me wishes that I could make him feel just a fraction of the pain he makes me feel.

But it's a disease.  And it isn't in me to do the things he does over and over just to get even.

And it isn't in me to leave.

Today I don't like him very much at all.

And despite it all I still love him.

Making less and having more...

5 years ago I had a very good paying job and so did my husband.  We were comfortably middle class and living well within our means.  We had a nice house and nice cars and we did pretty much what we wanted.  It was not a bad existence.

And then the bottom dropped out, his MS progressed, in Oct 2008 he quit working without a plan and I had to scramble to find a plan while continuing to work full time to pay the bills.  I filled out the VA application for him for service connected disability in April 2009 and then we waited.  Until June 2009 when I was suddenly let go with no warning.

Now no one is working and I'm bringing home $430 a week from Unemployment.  I know people who live on less than that BUT they did not have my mortgage or my two car payments, or my bills.  Panic set in briefly until I figured out that thanks to the VA Pension that my husband WOULD be granted he would continue to be paid for his entire life.  And his IRA's were probably NOT going to be as necessary in the future as they were right then and there.  So we cashed them in a bit at a time and we lived on this to supplement my unemployment until he started getting his VA pension in November of that year.

I started working part time at waiting tables, and we were making ends meet.  Not too terribly long after his VA pension came through we applied for Social Security for him and he was granted that as well.  All of a sudden our finances are a little less scary.

Then right as my COBRA is running out and I am taking a job just for health insurance his unemployability rating comes through and I am now qualified for dependent health care through a federal program called CHAMPVA.  I still took the job but minus the health care deductions that would have eaten up most of my pay.  Still I feel panic that we are just waiting for the other shoe to drop.

And I get laid off from that job too after just 9 months.  In time to enjoy my summer greatly. And I do, and my winter too collecting unemployment and starting to build my consulting business.  I got called back to the job but after just 3 months I quit as it just isn't working out for me and the VA travel is not working out for my husband.

His mother had recently passed away and money from her estate and a car from her estate allowed me to sell my car and take on a car with no payment this allowed me to quit that job.  And yet all the time I am worried that I made some grave error.

And yet when I did my taxes this year and realized just how much I am making from my consulting and from waiting tables it suddenly came to me - we are pretty secure.  I can stop worrying about this from day to day.  It seems someone has been watching out for us, things happen just when we need them and we are not just comfortable, for people in our situation we are pretty well off.

I'm almost afraid to breathe a sigh of relief, there are still things we need to do (life insurance for a start) but for right now I can stop waiting for that other shoe to fall.  For right now we are pretty secure and in this economy that is saying a heck of a lot.

Just very thankful to have one less thing to worry about right now.

Lead me...

Show me you're willing to fight,

that I'm still the love of your life...

I know we call this our home

But I still feel alone.

If only...

This song makes me sad - I am tired of having to be the strong one and yet that will never change for me. NEVER! :(

What if...

I have cried rivers of tears in the past year. I have wondered if anything would ever be right again. I have questioned my life, my choices, my faith, my God...

And I heard this song a few weeks ago, and it made the tears start rolling again but for a different reason. I have cried a river that I thought would drown me but somehow I have come out on the other side - stronger, happier, at peace.

And those prayers - they are being answered slowly but surely. And I think maybe a thousand sleepless nights is exactly what it took to change the only thing that I could ever really hope to change - me.

I hope the song moves you as it has moved me.

Blessings... Laura Story

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love us way too much to give us lesser things

‘Cause what if Your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your Word is not enough

All the while, You hear each desperate plea

And long that we'd have faith to believe

‘Cause what if Your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know the pain reminds this heart

That this is not, this is not our home,

It's not our home

‘Cause what if Your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise

I've been neglectful...

I have not written here in well over a month. For me this place is to pour out the things I cannot say elsewhere, to complain, to moan, to cry. Well lately things have been better. The spring is sort of here, it's still cold but the hours of daylight gets more each day and that helps me greatly. My husband has been making an effort and our relationship is on the mend. My job is picking up and while I still don't like the job it is a bit less soul sucking these days. So I haven't had much to say.

My husband planned a cruise for our anniversary in November. It's very exciting. :) We are taking a 7 day Bahama's Cruise on Norwegian Cruise Line out of NYC and will be on the boat for our 11th anniversary on 11/11/11.

In other news - not much is happening - looking forward to opening the pool and getting things moving along toward summer. Many things to do - spring cleaning - yard clean-up (a whole winter's worth of dog POO), flower bed clean-up. Before you know it I'll be mowing again and planting those flower beds.

Deal Breakers...

What do you consider a deal breaker?

• In a friendship?
• A romantic relationship?
• A marriage?
  

To me it all comes down to promises kept. If you promise to do something for someone you do it. If you promise you won't do something because you know you shouldn't and they asked you not to you don't do it.

Recently my husband made some promises to me in an effort to recover what we once had. He does not want to keep his end of the bargain now, says he didn't realize what he was promising. But to me not keeping these promises is a deal breaker and I'm ready to walk.

I feel like a bitch if I put it out there like that and yet this is how I feel. Do what you said you would, keep your promises or I will no longer feel bound to keep mine.

Why is it men are such babies about colds?

Why can they break bones and act like it's nothing and then turn into a whining, cranky child because of a cold?

2 weeks ago I had bronchitis, taking heavy duty antibiotics and narcotic cough syrups to survive day to day and I managed to still go to work most of the time and while I wasn't great company I wasn't grouchy and mean.

He has a cold - a bit of a cough, stuffy nose, and he's Mr. Crabby Pants! Seriously. I am still coughing from the bronchitis from the 1st week of January and I am dealing.

He is driving me crazy. GRRRR

Just wishing for life to be easier all around...

The job is a job, the weather is depressing, the status of my marriage is still in limbo land, we are trying but there is a lot to overcome and I feel like he's not trying as hard as he should. Overall I am just feeling blah.

Husband tells me to quit my job - we probably COULD afford it but where does that leave me if this relationship rescue goes south? With no income and totally dependent on him? I'm not ready for that.

Husband wants to go on a vacation - we definitely can afford it but I don't have any time at work. He wants me to ask for unpaid time and frankly while they would probably give it to me I have to wonder what makes me entitled when no one else is? I'm not asking for unpaid time to take care of a medical issue, or a child, I'd be asking for unpaid time to go on a cruise, or to the beach. I just don't know if I can ask for that, feels weird. :(

I want the husband to take me seriously, to really do what he said he would do and stop pushing limits. I want him to realize that this is our last chance and not think I'll cave and give in like I have a hundred times before if he blows it off this time.

I want to be happy, desperately happy, I want it more than anything and it feels so far out of my grasp.

Slow start to 2011

Still hopeful, still hanging in there, but expecting miracles end with disappointment. People don't change overnight and sometimes they don't change at all. We however are changing, very slowly, but the old hurts are still there and trust doesn't come back overnight.

We have a lot of people praying for us, that has to be helping.

And there's reason to believe maybe this year will be better than the last...

After a very long and hard few years filled with anger and resentment, filled with fear and rejection and growing further and further apart. With fears of losing my sanity, fears that perhaps the man I loved was really gone and the angry man in his place was who I was going to be stuck with forever - I now have hope.

The hot mess that was my life reached a crisis point on Thursday night. I just couldn't take much more and so I laid it all out there. I bared my soul to him, to the man I still love desperately despite all of these things that have been so bad. I told him that something had to change, that we were so far apart and both so miserable. I told him I thought "we" were worth fighting for and that I wanted to save our marriage, to fall in love with each other all over again, to work for it.

He is not here - he is 650 miles away from here and I sent this desperate and lonely plea out over the interwebz to him and then waited to see what he said. I figured at this point it was 50/50 whether he came back to me or we just said let's give this up before we both go insane.

Well he came back to me. We have talked, shared, opened up, bared souls. And today starting 2011 I can honestly say this is the first year in a long time that I really do believe that this year will be better than the last.

And since total honestly and open communication is what we are working for it's time I give my husband the URL to this blog. I don't know if he will read it, my online diary of love, fear and pain since 2008 but I have to tell him it's here and just let the chips fall where they may.

And Pete - I hope that when (if) you read some of the things here you will see me the real me and know that with some of the postings I was very hurt and yet through it all I have loved you.

The Big D...

No not getting one - not yet anyway. But my husband throws that word out expecting me to panic and back down and give him his way. I have told him that I don't believe in divorce and I won't do it -but when he's being a jerk and picking a fight and I'm not backing down or giving in he throws that word in there as a threat, to manipulate, to break my will.

It doesn't work anymore. He throws it in there and I start thinking of how my life could be if I didn't have to be a constant caregiver to someone who treats me with disrespect and disdain. I start to think about doing what I want and going where I want and only having myself to worry about.

I still don't plan to divorce him - but that word no longer has the power to reduce me to a quivering mess of tears. I won't plead. I won't cry. If he insisted and left today I would miss what we had long ago - but I already miss that.

Tired of holding it all together...

I fight to hold it all together, to keep things going the way I want them to go, and to keep all the balls in the air, the plates spinning, etc. And some days I just want to forget it all.

Yesterday my husband tells me he wants to move back to Ohio and suggests that perhaps if I don't want to go that we should go our separate ways. He throws out the D word when being obstinate but for the first time I actually said - maybe that would be best. He kind of shut up then.

And yet I think if he really pushes this I will plant my feet and refuse to budge. We moved here because he didn't want to be in Cincinnati anymore and when I suggested coming here he was fine with it. Now he doesn't like it but I have no plans to move again. I have my family here to support me as he continues to deteriorate and if I get to Ohio with his family and he decides to be a total jerk well then I don't have my support system and honestly we can't afford to move.

I feel like if he could show me that he could be the husband I used to have again, the one that was kind most of the time, the one that said thank you sometimes and I'm sorry sometimes, well maybe for that guy I would consider moving again. But for the guy that I live with day to day now? Nope I'm not going to go, and honestly I'm not sure I want to try and hold it all together anymore. If it falls apart - it does - and I can say I tried, I truly did, but I just can't keep it up. I'm tired.

In a Funk...

For several days now I've been in a funk. Part of the problem is a summer cold I managed to catch that has made me feel icky. Part of the problem is second guessing decisions and wondering if I'm really making major mistakes. The pool is in, but it's been raining and cold since so I can't swim in it. I worry that I shouldn't have spent the money on the pool after all but it's done now.

I applied for a job on Thursday and fully expect to be hired - BUT not sure I want it. It's no career, it's breakfast and lunch waitress at the Holiday Inn - not exactly something to be thrilled about. My schedule would be 7am to 2pm 3-4 days a week. No way of knowing how much I'll really make until I do it. Just got a bit depressed staring at my framed MBA diploma and thinking about being a waitress.

Today went to church in the AM and then to eat with some friends, my husband was having a bad day and made a bit of a scene in the restaurant which was embarrassing. To make matters worse the restaurant is owned by the sister of the woman who owns the restaurant where I work so I know word will get around. These are the days when I wish myself single in the worst possible way. And yet I really don't want that - I just want my old husband back - never going to happen though.

Just the other day I heard a song that I had considered singing at our wedding 10 years ago. I wanted to actually sing it to him at the wedding but decided I couldn't hold it together for that. This song made me sob big ole wracking sobs - and made me feel very guilty for not always keeping the promise I made. This in sickness stuff is so hard sometimes.

From this moment life has begun
From this moment you are the one
Right beside you is where I belong
From this moment on

From this moment I have been blessed
I live only for your happiness
And for your love I'd give my last breath
From this moment on

I give my hand to you with all my heart
Can't wait to live my life with you, can't wait to start
You and I will never be apart
My dreams came true because of you

From this moment as long as I live
I will love you, I promise you this
There is nothing I wouldn't give
From this moment on

You're the reason I believe in love
And you're the answer to my prayers from up above
All we need is just the two of us
My dreams came true because of you

From this moment as long as I live
I will love you, I promise you this
There is nothing I wouldn't give
From this moment
I will love you as long as I live
From this moment on