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?

Let it go...

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.

Do you believe in angels?

I definitely do but tonight I got to experience my guardian angel in action.  I think she came with my car.  :)  My car used to belong to my mother in law.  Very randomly and even when they are turned off my cars windshield wipers will just wave at me one time.  I always say "Hi Mom" when it happens.  I know it's a little crazy but it feels right.

Tonight I lost control of my car on a very slick hill and ran into an embankment and then bounced around doing a 180 and landing almost laying on my side in a ditch.

I unhooked my seat belt and fell into the passenger seat and then searched for my phone which had gone flying with all the impacts.  I called my husband and said "babe - I think I need a new car".

I had hit HARD and spun around and hit HARD again.  I was a little shook up but experiencing an adrenaline rush so I called Pete, called 911, then called roadside assistance for a tow truck.  I told the tow truck driver that he better bring a flat bed cause I didn't know if it was going to be able to tow on the road.

Then I sat and waited, and waited and waited.  45 minutes later the state police showed up.  He was super nice and did not give me a ticket for driving too fast for road conditions.  Several nice people had stopped to help right after it happened too, one a first responder wanted to take my vitals but I was fine.

Shocked really but I floated through that accident as if in a big bubble.  I didn't get banged up or whipped around at all.  I felt like I was wrapped in bubble wrap or packed in cotton and I know what that accident should have felt like as I've had similar ones before.

When they towed my car out of the ditch to my utter disbelief and complete AWE, the only visible damage was the front bumper loose on the edges and turned slightly down.  The entire passenger side of my vehicle had been down in a ditch up against an embankment and I hit HARD.  Not a scratch.

So far from needing a new car I might need a new bumper.  Or maybe that one just has to be put back in it's place?

I definitely believe a little more strongly in protection from angels tonight. And whether my guardian angel is my mother in law or just some poor random angel assigned to me I feel blessed.

Trying to save him from himself...

And it just gets me burned.  He resents me, yells at me, tells me to shut up.  Meanwhile he tells everyone far more than they need to know and sometimes more than they should know.  If I try to stop him to save whatever can be saved I get screamed at.

It's been a bad day.

Don't Fall in Love With A Dreamer...

Cause he'll break you every time.

Just when you think you've really changed him...

There is your biggest mistake - thinking you can really change anyone BUT yourself.

Filed under lessons learned the hard way.

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.

It's that time of year again - Walk MS

After taking a year off because I was on a cruise that weekend (hardship I know)  I am back at it this year and will be walking in Albany, NY at the Walk MS event.  I have done it every year since 2000 (except last year) in one location or another.  I am working on assembling a team this year and starting to seek donations.  So I'm throwing it out here on the interwebs.  I know some of you are reading even if not many are commenting and if anyone would like to help sponsor me in my walk I would be ever grateful.

You can view my site here: Tricia's Walk MS Page

Get Out of Hell Free Card....

My husband is not spiritual, nor is he religious and yet he claims himself to be catholic.  For a few years I went to mass with him and took part in the proceedings and became part of the community.  I sang in choirs and worked with youth.  I joined in and became a part of things.  And all the while he spent ever service bored to tears and either napping or distracting those who were trying to listen.  I figured I was there I should listen and try to learn  and I did.  But then we hit a crisis point and tried to talk to a priest.  It was mistake as the priest rather ignored our crisis and instead focused on things that the catholic's find important like getting first marriages annulled and calling my marriage invalid in the eyes of the church.  We both agreed we were done and haven't attended anywhere since.

Fast forward 2 years and remember my husband's illness is much more cognitive than physical these days.  He doesn't remember why exactly we left.  He wants to go back.  He doesn't bother to talk to me about that but rather starts calling priests and asking for explanations of why these things happened.  He told the priest that we stopped going because he insulted me and then when I came home from work today he thrusts the phone in my hands and says "tell Father M why you were mad at him" and I was mortified and annoyed and felt ambushed and super pissed off.

I was not mad at the priest and he did not insult me personally I just find it to be insulting that the church would dare to call my marriage invalid when I did not ask their opinion.

Fast forward he wants to start going to mass again. And of course he wants me to come.  I'm not catholic, was raised more evangelical and am now just protestant mostly.  I don't want to go back because my husband seems to view sitting in that pew once a week as some kind of get out of hell free card.  I told him this.  I will go but there is a condition, the first time he tries to play tic tac toe or whisper or distract me during the service, or if he is so rude as to pull out his phone and play a game or read his messages (he has done this) that I am DONE.  He will only get one strike here, he needs to listen and learn and be there for more than warming a seat or I'm not wasting my time.

He is the least religious and least spiritual person I know and I find the hypocrisy of  thinking that sitting in that seat was somehow enough when you treat your wife with disrespect on a daily basis just a bit much to take.

Stuck in a Rutt...

My house is a mess.

My office is a mess worthy of an episode of hoarders.

My kitchen counters are cluttered beyond belief.

I have customers waiting for me to do work for them.

I have potential customers I should contact.

I am sitting here in my winter slump, at 11am still in my nightgown and slippers with serious thoughts of going back to bed running through my head.

So I made a list - things I MUST accomplish today:

1. clean the kitchen counter
2. clean the table
3. make 1 customer call
4. go to my dentist appt
5. compile a mailing list for my new catalogs

This is not an unreasonable list.  Let's see if I can do it.

Starting in the kitchen.

Minor Humiliations...

This shouldn't humiliate me and yet to a minor degree I felt some humiliation.

Friday Night at the Restaurant - in walks a large group of 13 people that I do not know BUT wait I do know one of them.  One of them is a man who was a Brand Director for a company that I worked for 5+ years ago when I was a Brand Manager and he was my boss.  Back when I was someone important.  When I had a STAFF that reported to me.  Back when I worked 50+ hours a week and traveled on business and garnered respect as I climbed the corporate ladder.

He recognized me because he said hello to me by name.  But that was it.  He did not ask how I have been since I left there 5+ years ago.  He did not seem interested in why I was now taking his pasta order rather than managing a team of brand marketers somewhere.

I wanted to explain - when I left that job my husband was still relatively healthy, walking, working full time at his own career.  I wanted to say how far I went before realizing I could no longer be part of that corporate world and still fulfill the promises I made at the altar that day 13 years ago.  I wanted to tell him how my own private endeavors that I work at less than 20 hours a week are providing an income just shy of what I made when I worked for him.

I didn't want him to think I was just a waitress.

But he didn't ask so I just brought him his food and acted like I didn't care.  I did.

My most viewed post...

Oddly enough with all the posts I've made in the 5 or so years since I started this blog the one that still gets the most hits is this one from 2008

The official title was

Thirteen reasons why turning 38 doesn't totally suck balls...

Yeah I'm classy like that. 

And now that I'm facing down 43 - turning 38 doesn't seem so bad at all.  :) 

The Curse of the Caregiver

The problem with being the primary caregiver to someone you love who is ill either physically or mentally or both is that you are there, always there, you are the one that is the easiest to lash out at when things go wrong.

I swear everything is my fault somehow.  If the internet is not working I get my head bitten off for asking what is wrong.  If the dog's toys are in the hall and I ask if he's okay after tripping over a dog toy I get a tongue lashing about why they are there.

When it comes time for dinner the ritual is the same day in and day out - what do you want I ask?  Well what do we have he says.  I start listing off things, usually 4-5 choices. He will focus on one of them and tell me I don't want ______.  I say well what about the 4 other things I suggested and he says in a snide and condescending voice JUST MAKE SOMETHING.

No matter what I do for him, how I bend over backwards to help or be of assistance I am the bad guy, the fall guy, the scape goat.

From what I understand this is the curse of the caregiver.  It's not an easy life and yet it's mine.

Walk a Mile in My Shoes...