It’s Just Not Worth Arguing About

One of the more unpleasant results of Andrew’s having several strokes and often intensely high blood pressure, is that he gets confused. He doesn’t know he’s confused, but he is. The problem is that if you try to tell him he’s not understanding, he becomes indignant and belligerent. Now, over the years, I’ve learned when not to argue with him, but lately, the line “not to cross” has become twisty, turny, and really seriously fuzzy.

I pretty much handle his healthcare issues, from talking to doctors, being present in the room when he’s examined, to ordering his medicine on time and checking his medical records for discrepancies. Today, he showed up in my home office doorway telling me he was almost out of Carbamazepine, his seizure medication. I know I sort of frowned because I just checked yesterday to see that everything that had to be ordered from the VA was ordered. I told him that. He got a little testy, just a little, but enough that to head any further fight off, I said that I would check again. While I was pulling up the web site that gives me his VA medical information, he said something about his Neurologist saying that she would give him extra Carbamazepine so that he wouldn’t run out. I was there, I remember it, but I know that she was talking about giving him a 60 or 90 day supply instead of a 30 day. It really makes no difference in the number of pills he gets in the end, they just don’t send them as often. I asked him if how many days of pills he had left. Now it was my turn to be confused because he told me he had enough “for awhile”.

Apparently, what he took away from his last neurology appointment was that the doctor was going to give him extra “bottles” of Carbamazepine. Since he only has ONE bottle left, he felt that he should have received another one in the mail already. In reality, the bottle he has left is the bottle he had just received in the mail a few days before his last appointment. Instantly, the fact that he didn’t have another bottle already delivered became my fault. He was yelling. So with him in my office, I looked at the online ordering system and told him his expected “fill date”. Still yelling, it became my fault AND the VA’s fault.

I started an attempt to explain what was going on, then thought better of it, completely forgetting that agreeing with him usually ticks him off too.

He’s upstairs and I’m downstairs now. I hope that the next time we’re both on the same floor, the storm will have passed. It’s just not worth arguing about.

Some days I just can’t win.

So Tired

So here I am again after another long disappearance.  I’d explain, but then I wouldn’t publish the post.

I am so, so tired of everything. Andrew has had multiple strokes since that fateful day in 2012 and so many things have changed and intensified. It’s complicated and it’s exhausting. It’s double jeopardy in that I can no longer tell what is PTSD, what is stroke, and what is some weird sum total of both.

Andrew’s episodes of extreme stress and agitation no longer follow his old (and somewhat easy to recognize and hold on tight to survive through) calendar of Vietnam anniversaries. He has the added issues of confusion, frustration, and anger that arose when areas of his brain were damaged by the continual assaults by rampaging bleeds.

He is defensive. I am not perfect, I make mistakes, but I do not lie to him.  I do not “make it up” when he thinks he said something but the words that came out meant something entirely different. When he misunderstands what I say, I do not change my words. I repeat, verbatim, the words that I said the first time. But, he is indignant and anger is fueled by his inability to believe that there is something wrong with his still beautiful, yet damaged, mind. If I am wrong, I admit it readily, but still he is defensive. I must have deliberately screwed with him or I must be the damaged one.

I am damaged. I have lost my best friend. It seems a perverted dance now. I am never sure what I can safely say. What was once a conversation opener is now deemed a condemnation. He lies in wait, ready to pounce, a warrior, ready to verbally fight until, piece by piece, I die.



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?