What Does It Take?

In September of 2012, Andrew suffered a right side temporal/occipital ischemic stroke. Short one day of a month later, I once again I started the arduous task of gathering records and “evidence” to submit a new compensation claim to the Buffalo, New York VARO (Veterans Administration Regional Office). Apparently it’s been approved because  a small monetary amount suddenly appeared in his bank account from the VA and  a new letter arrived telling us he might be eligible for life insurance. He has not yet recieved the “Big Brown Envelope” explaining the rationale in rating or exactly what that rating is yet, however.

I knew going in that the only good reason to submit it was that a stroke is life threatening and that I needed to be able to get him emergency care quickly if it should happen again and since his high blood pressure is service connected, so should a stroke caused by that high blood pressure be service connected. The nearest VA Medical Center is 70 miles away. The nearest hospital is 5 blocks away.

Andrew is already service connected at 100% schedular permament and total. The only financial benefit that could have occurred if the claim was rated as I believe it should have been would be to grant him Special Monthly Compensation (SMC) for being housebound (I am not positive and would have to check, but I believe that amount to be around $300.00 extra a month). I know that he is basically housebound now. When the VA granted his PTSD claim and his Hypertension claim, they denied his hearing loss claim.  Andrew is completely deaf in one ear and only has about 30% of normal hearing in the other ear. The stroke caused him to lose the top left quarter of his vision in both eyes. It also caused him to have a continuous headache, hypersomnolence (he now sleeps 12 to 16 hours a day), balance issues that create a fall danger, and periods of intense confusion.

Knowing what I do about Andrew’s “brand” of PTSD, I know that before his stroke, the worst thing a person could do was walk up behind him and say something, or worse yet, touch him. PTSD makes a person startle easily and triggers the whole range of fight or flight reactions. Now, add partial blindness to the equation and consider what that might do to an already hyper-aroused PTSD veteran. Add confusion to the equation and tell me who would survive the repercussions of such a situation. Andrew knew that he could be a danger to others before the stroke and he was isolating himself to keep himself out of situations that could lead to an “incident”. Not only is he isolating himself now, it is no longer safe for him to be out of the house without supervision. I can’t even suggest that he go somewhere by himself anymore and I’m not as afraid of him getting involved in an unnecessary altercation as I am of his becoming confused and not being able to find his way home or remember his phone number. Honestly, I am afraid if he wanders to the cellar or the garage by himself. Who knows what he might do when he’s around power tools. I’ve seen what he can do in a kitchen and it isn’t pretty and it is sometimes rather frightening.

I do not wish to portray myself as some kind of martyr. I’m not. I don’t want to feel like I have another child to raise. I hate that I sold my business to watch him. I hate that he needs to be watched in the same way that my grandchildren need to be watched. I hate that he has to be told that an event is going to happen over and over again only to find out that when the event is underway, I have to explain it to him again. I hate that I have to “nag” him to check his blood pressure and remind him to take his medications, then sneak around behind his back to count pills only to have to tell him to take his meds again. I hate having him read something to me out loud, then having to correct him because he left out words or simply mis-reads words that are there enough to completely change the meaning of what he reads (this one is especially problematic to me because knowing that he often responds to my feelings with anger, in the past, I’ve written out my feelings and let him read them when he’s alone.) I hate that he has to be demasculated in this way.

I’ve said it before and will repeat it now and will probably repeat it until I can no longer speak or type. I would take a vow of complete poverty if I could have my husband whole again. I don’t want VA money. Having my husband whole is not possible now. My heart aches for him.

I have told countless numbers of his doctors as well as psychotherapists that he doesn’t leave the house except to go to the VA appointments and to see his 92 year old mother. Andrew has told his doctors the same thing. I read and re-read all his doctors notes and only rarely does one write down that “he isolates”.  Never has one written down that he doesn’t leave the house or can’t leave the house.  In 4 months, Andrew and I will have been married for 42 years. Do doctors that see him for maybe 20 minutes honestly believe that what they see in that 20 minutes in a controlled environment is really what goes on for the other 23 hours and 40 minutes of each day. I did lose it with one of his doctors recently and while on the verge of tears said “You take him home with you. Keep him with you for 24 hours  then tell me he’s doing well”.  It’s simply not true that he is doing well.

And so, my question: What does it take?

 

 

Don’t Hate Me

Last night ( and into the early morning hours) I had company on my front porch. We watched fireworks celebrating this country’s independence from a mile’s distance and drank several bottles of wine while Andrew hid himself inside, with the windows and doors closed against the sound of the fireworks and the discomfort of my having visitors. The women who visited were a varied age grouping ranging from 71, 3 years older than Andrew, one 57, a year younger than me, and her daughter and her daughter’s partner, just 21 years old. I so seldom have visitors and even less often have alcohol and while I know I will regret it when I wake up, I enjoyed the company and the break from my own vigilance that usually accompanies Andrew’s discomfort with the sounds and sights of the fourth of July. It was welcome, even if not planned. I needed these neighbors and friends to be with me and to provide me with some normalcy.

As is usual when I do have a few drinks and am finally alone, I get thinking about where my life has taken me and how I got here. Tonight, I am thinking about the things I hear and see, mostly on Facebook and Veteran’s message boards, about hippies and how much resentment and even hatred some veterans have for those who would have been called hippies during the Vietnam War. I was a hippie. I am a hippie. I married a Vietnam Veteran. I love a Vietnam Veteran. I have loved a Vietnam Veteran for 44 years now. I am still a hippie.

I protested a war that I believed, and still believe, to have been wrongful. I believe that any war, any unnecessary death or harm to a human being is wrongful. This does not mean that I think that those that fight these wars are wrong, or bad, or evil. It does mean that I do not  feel that  a life, any life, including the lives of those that do not see the “ideal world” as I or as my country sees it and that those lives who are fighting for the way that I, or my country sees that “ideal world” is worth losing. In my younger days hippies as a group, as a generality, were often viewed as the ones who spit on returning veterans or called them baby killers. I was and am a hippie. I love all life. I love our veterans. I never spit on a veteran or called one a baby killer. I simply felt sadness and compassion  for what a veteran had seen and been through. It is a government or a group that creates a war or more exactly, governments or groups that create a war. The decision makers. Those decision makers seldom take part  or even see first hand the results of their wars. They just give the orders and the orders are carried out.

In the end, the Vietnam Veteran and he hippie did not live happily ever after. More than lives are stolen by war. Joy is stolen by war. Peaceful sleep is stolen by war. Souls are stolen by war.

My husband is still a Veteran soldier. He still fights a war in his sleep and hides from the sounds and sights that remind of that war. I am still a hippie. I love my veteran as I try to love all people. I fight the theft of their lives, joy, peaceful sleep, and souls in my sleep. The sounds and sights that remind me of a war I protested are bittersweet.

 

I Learned Something One Should Never Do To A PTSD Vet

Andrew has a profound hearing loss. After years of his getting aggravated because he had to say “huh?” all the time, he finally caved in and went to the VA for a hearing aid (he’s completely deaf in one ear, hence just one hearing aid).  After a couple of failed attempts, they finally hit on a solution that we both thought would work for him. It was an in the ear aid, but had a FM transmitter with it. The idea was that I could wear the transmitter around my neck and be able to speak to him in a normal voice even if I was some distance away or had my back turned so that he couldn’t see my lips.

When it worked, let’s just say I was so excited that I cried. As we left the Audiology department I lagged behind a bit. With Andrew a good 10 feet ahead of me, I said “can you hear me now?” in a voice that was just above a whisper.  He heard me! All the way out of the VA, I repeated this exercise.  To a few passersby that looked at me strangely, I happily said “he can hear me!” Andrew did well through this and even smiled a few times himself.

He wore the hearing aid all the way home. I could talk to him in the car even if I had my head turned to look out the window. After all this time it was the most amazing experience, but it turned out to be shortlived.

When we arrived home I was still wearing the transmitter. Andrew came in and went upstairs to use the bathroom. I started to take the transmitter off and then one of those ideas hit me. You know the type…the ones that you don’t think through but sound so marvelously funny at the time that you just do them. I waited until I didn’t hear footsteps above me and said “do you hear me now?”

Well, there was a lot of noise upstairs. When he came down, he was smiling but it was definitely a strained smile accompanied by a sort of a growl. The one thing you never do to a PTSD vet is take him by surprise.  Let’s just say, the transmitter is now on the TV stand and used only for hearing the TV. I’m going to wait awhile then try to suggest that he use it to hear me again.