My love/hate with the V.A continues

I have a love-hate relationship with the V.A.  Most of the time, it's more hate than love.  Then, occasionally, you have a LOVE moment......A recent example would be Hubby's last C&P where the doctor was phenomenal and actually got it.

Today, it's more hate than love.  For well over two years, I have been my husband's caregiver through the V.A Caregiver Support Program.  Basically, we get a small stipend for all the things I do for him. To get this, we had to apply, have doctors assess us, and have a home visit from a nurse.  To maintain it, we still have a nurse come quarterly to visit with Hubby.

For the last few months, Hubs has just really spiraled downwards.  It's bad....I mean, bad.  The poor guy has anxiety attacks when I'm at work and relies heavily on me to do a lot of stuff needed for him to receive care.  I broached the topic of a rate increase almost a month and a half ago to the Caregiver Support Coordinator.   He explained that the need would have to be long term and started telling me, "you know, think of if your husband had an operation.  He'd need additional care for awhile but not long term so we wouldn't increase it for that".

That comment annoyed me.  My husband has PTSD.   It's not going away......ever.  

Anyway, I said I understood and he also said that it's hard to have doctors go back and reassess.  Well, I get that.....Except his original assessment was done in North Chicago and he hasn't seen those doctors in quite awhile.  More so, he was very good at hiding how bad it was for him.  Since then, he has opened up to his doctors and the totality and severity of his disability is now evident.

For all those reasons, I pushed to open it back up and reassess.  Who knows, maybe we won't qualify for the higher tier, but won't know unless we try. 

The irritating part is that this guy, the Coordinator, has been taking his sweet time getting back to me.  When I called him in December to as him about this and also to ask for help for me, he said he'd be right on it.  I was desperate for counseling of my own.  After all, this was the Caregiver SUPPORT program and I needed support.  Well......It took him a month to get back to me.  When he finally did call me, he apologized and told me I was sounding much better.    Well......okay......but no thanks to him and his "support".   

I've called and emailed him again several times about this reassessment.  Supposedly all he has to do is send it back to Hubby's providers.   Hubs meets weekly with them, and they haven't heard squat.

It's frustrating for sure to have someone who on one hand, says he is "There for you" and tells you that "you can call me anytime for anything" just to have him fall way short of that.  Please don't make promises you can't keep.  Especially to worn out, stressed caregivers and their stressed out spouses.

Permanent and Total

Permanent.     Total.

Permanent and Total.


These words, spoken today by the psychologist at Hubby's C&P exam were bittersweet words to hear. On the one hand, it's what we wanted.  It's what Hubs deserves to get.  However, at the same time, to hear that your loved one's condition is permanent is somewhat hard to hear.

Hubby has been receiving benefits from the VA and social security for quite awhile now.  However, he was not considered permanent and total.  Hubs has spent the last 5 years since his medical retirement afraid that if he got better, they would take all this benefits away.  He finally decided to put in for his Permanent and Total based on my urging and the urging of his psychologist and psychiatrist.  We submitted the paperwork and then, the VA decided to do a C&P, which is an exam to judge you, for lack of a better word, to see if you really deserve it.

Hubs has been stressed to the max about this exam.  I went with him today to the exam for support and to answer questions the doctor might have.  Turns out, the doc was awesome.  We sat down and we could tell right away that she had already read up on his files and she said that it was really a formality that we were there.  That right away eased my mind.  She was very approachable and somehow, I'm not sure how, she got Hubs to open up.

Hubs cried, I teared up, and at the end of the exam, the psychologist told us that Hubs would NEVER have to come in for another of these again.  She said she was going to write whatever she needs to to ensure that he gets his Permanent and Total.

Again…..Bittersweet.

I'm thrilled that Hubby can now feel secure knowing that it won't be taken away.  At the same time, it enforces what I already knew; Hubby is irreversibly broken.   There is no cure for PTSD.  I know that, Hubs knows that.  But to hear Permanent and Total…..still kind of hits you.

However, this is good news.  Hubby can and will continue to work on his traumas and coping skills.  He will learn even better how to get through the dark times when his anxiety and depression take over, without the threat of having benefits taken away if he shows improvement dangling over his head.
Yes, he will continue to fight the fight, and I will be right there beside him all the way.

Tomorrow's the Big Day!

Hubby has been 100% retired for years now.  However, he was not permanent and total.  After having talked to his doctors and therapists, he finally decided to try for it.  Fear was stopping him from applying for it before.  He was terrified that if he went to try and get permanent and total, that perhaps the reviewer would decide that he was better than he had been when first diagnosed and that his benefits would be reduced.  He can't work so the fear of losing what financial contribution he has terrified him.

How sad that he worries so much that by even showing a little improvement, he is worried that his benefits would be cut or reduced. 

It's like his therapist told him:   You will always have PTSD, there unfortunately is no cure.  That being said, you can make progress.  It doesn't mean you're cured.

Anyway, tomorrow is the big exam where he goes in and they review his information and ask him questions.  I'm going with him to help keep him calm and answer questions that he won't be able to articulate the answers to. 

Prayers appreciated for a good exam and good results and prayers that Hubs will get some sleep tonight because I know he'll be hyped up worrying about it!

New Psychiatrist

I don't really love the VA....I mean, come on.....They haven't exactly been super helpful in our fight against PTSD.  We've met some good doctors, one or two outstanding therapists...and that's about it.  One exception is the PTSD program that is at the Lovell Federal health Care Center in North Chicago.  This program is rated, I think, like number 1 or number 2 in the country.  Hubs has spent 3 six week long stints in their inpatient PTSD unit.  Each time he's gotten more out of it, with this last time showing the best results.

The staff is great there.  They actually care about the patients and they are there to work for you, not against you.  Seriously, if your vet needs a place to go,  I highly recommend it.  Hubs was so enthralled by the level of care he received there, that he drove there weekly instead of going to our local VA facility.  In fact, he's in the middle of switching ALL his care from our local VA to the N. Chicago location.

One of his problems is that he's been on the same psychiatric medications since 2008.  Hello, hasn't anyone heard of tolerance?  Well, he's built it up against some of the drugs he's on.  His awesome social worker at N. Chicago recommended he switch to the psychiatrist down there and have a whole new makeup.  Last Thursday was the day of his appointment with his new psychiatrist down there.

As we walked into the hospital, I suddenly became nervous and full of anticipation.  Would this doc really be all that he was supposedly cracked up to be?  We'd been to so many doctors over the years.  Would this guy really help us?   Since he came so recommended, I had high hopes and I was just afraid that the bar had been set too high.

I was pleasantly surprised.  Hubs had been told by some of the other fellas in his group that we wouldn't actually spend that much time with the doctor.  Instead, we'd be with his nurse most of the time.  I was surprised when his name was called and there was no nurse, it was the actual doctor.  He led us down this long maze of yellow institutional-like hallways.  I remember thinking that they should really put some art on the walls or something to liven it up.  Anyway, we went back to his office and got down to business.

The psychiatrist was thorough......he actually took the time to go through the meds he'd been on and ask what was going on in his life, what symptoms he was going through.  I chimed in when Hubs wouldn't fully give out how bad it was for him.  I don't know about your veteran, but mine always tries to make it sound less bad than it really is.  The doc listened, interrupting when appropriate to ask a question or two, and he listened.  That was nice.....there was no psycho-babble going on.

Turns out the psychiatrist at our VA locally had him on not one, but TWO Benzodiazepines.    The doc whipped out some handbook that listed them as HARMFUL in the treatment of PTSD.  What the hell? That really got to me and Hubs.  Harmful??? and he was on two????  Unbelievable.   Hubs is now off those stupid benzos and only on one new drug.  The guy said it might make him sleepy at night, which would have been a good thing since he's up all night.  However, so far the darn things don't seem to make him sleepy.  However, yesterday was his first full day on them and he reported that he felt "happy".  

Tonight he is sacked out on the couch so maybe the drugs are starting to work.  I have to believe that not having as many drugs in him is a good thing.  He goes back in 4 weeks so that's promising too.....that we're going to receive follow up care.  Hubs only saw his psychiatrist at our local VA once every three months, which I always thought was dumb.

So, for now, I hold my breathe and wait and see.  THat's the nature of this, I guess.   You hurry up and wait for a new prescription, a new therapy group, a new EMDR session and you wait and see if it helps.  The psychiatrist made a good point Thursday:  medicine is not a cure.  You're going to get more out of your therapy groups and individual sessions to process the traumas.  The medicine is a bandaid to help you along the way.  Well, our bandaid had been holding on by a thread, a dirty, torn barely-there thread.  Hopfully this new bandaid will help hold him together a bit better.