VA Says He’s 100% Disabled Because of PTSD, Yet Expects Him To Manage His Life Without Supports

(8-9-21)

Dear Pete,

I am the spouse of a person with an untreated SMI who is eligible to receive treatment and who wants to get well but can’t because of his illness and roadblocks in his way because of our medical and legal system. He remains untreated, paranoid and delusional, vulnerable to the suggestions of voices real and imagined, and on a path that I fear will end up with him entangled in the criminal system or dead. I am helpless to save him.

My husband is a veteran, who served over 40 years in the military and three wars, and yet he is MIA from his own life because PTSD keeps his mind reliving a war that the rest of us can only imagine.  The experts in PTSD at the Miami Veterans Administration agreed to treat his PTSD for the rest of his life. They promised to help him. Yet, they let him walk out the front door after 90 days with a treatment plan that they knew he could not keep because he still was sick.

Ironically, they gave him a party before he left.

Early Signs Of Serious Mental Illness

My husband was a medic and chaplain, both caregiving occupations – unlike combat vets who often become aggressive with PTSD. When the military forced him to retire at 60 that signs of his illness emerged.

Thankfully the VA was there…..until it wasn’t.

My husband joined the military in the 1970s at the age of 19, a time when the brain is known to be particularly sensitive to trauma. We were high school sweethearts who got engaged when I was 15 years old.  If it was hard on me living at home as he was shipped out to Germany and I can only imagine the stress on him. I know his bunk mates teased  him, claiming the day he signed the papers to join was the day he gave up his fiancé (suggesting that I was already cheating on him.) As a new medic, they also hazed him by sending him out alone on his first mission to retrieve a pilot who’d been killed after he ejected explosively into his jet’s closed canopy.

Everyone knows incidents of PTSD (overall and military related) are up and likely to increase as we bring the last troops back from Afghanistan. They can also lead to Serious Mental Illnesses. In its simplest form, PTSD is the activating of the ‘fight or flight’ system we all have and my husband was not a military trained fighter so he tended to more flight/retreat and defend.

Make no mistake, PTSD is a medical condition. It is actually a collection and continuum of other mental illnesses all of which have their basis in brain differences. Some are caused by an actual physical event- say an explosion impacting the head – causing Traumatic Brain Injury (TBI) – but other neurological changes occur in response to the trauma itself and, if someone has a genetic predisposition to schizophrenia , bipolar disorder, Alzheimer’s disease or others the likelihood of sever change is greater. My husbands deep wounds are called moral injury. He spent decades being the fun guy who distracted people from the horror around them and the bedside comforter for those injured and dying. While he is a strong Christian, as a Chaplain it was his job to serve all faiths therefore affirming the beliefs of others when they needed it most regardless of his deep belief to the contrary.  He was good at his job as a comforter but it created additional wounds that we can not see.

Illness Impacts Me Too: Panic Attacks

After he retired, my husband began behaving erratically and often raging out of control for no reason I could detect, I began having panic attacks. At the beginning of any sign of conflict (or even when I think of stressful things that have happened these past few years), my heart races and muscles tense. I lose my peripheral vision and most sounds seem muffled. At first, I thought I was having a heart attack and it escalated further as I thought I might die, but once I learned it was panic attacks, I can tell myself to stop and bring my body back to normal in a few minutes—- but my brain is still changed –  I can literally feel the adrenaline coursing through my body. I could take anti-anxiety medicines if needed because it is a medical condition. I recognize that this is a problem and am able to ask for help and will get well.

That isn’t the case with my husband and the medical and legal professions have made matters worse.

While my husband was in the residential PTSD program run by the Miami Veterans Administration, they adjusted his medications and for the first two weeks he had to take his medications from his pill box in front of a nurse while he stated what each pill did and what it’s side effects were. He was taught to keep track in a medical log – the idea being both compliance and documentation that can help doctors determine if medications need to be adjusted.

Like any other illness, the patient is given more responsibility for his own care as his overall health improves until the point where he is in the least restrictive environment possible for him. Of course, like most illnesses the patient needs other occupational, physical or psychological therapy to support management of the condition and recovery of possible. The PTSD residential program was initially very structured and, in my opinion, provided the needed structure that had been missing since he was retired from the military. The program was voluntary, but I observed two things that motivated my husband (and likely others) to enter and remain in the program: (1) being with his family and seeing the pain his behavior was causing loved ones – he wanted to be well for the sake of these relationships and (2) the “carrot” of increasing a veterans disability rating and therefore compensation.

As the program continued, he was provided less and less support, and it soon became obvious to me that he was slipping. He was not taking his medications regularly as evidenced by his escalating paranoia and rage. Nor was he being properly monitored. He called me one Friday afternoon to explain that he would be late coming home on his weekend pass because the nurse was requiring him to fabricate three weeks of med logs he had failed to submit. While in treatment, he gained over 50 lbs, becoming clinically obese while supposedly on a low fat, low sodium prescribed diet. No one checked or they’d learned he was using nightly gym passes to go out for fast food. When I tried to discuss my concerns with his doctors and nurses, they cited HIPAA and said we needed to see a marriage counselor. When I said ‘No, this issue has to do with his compliance with treatment,” they suggested in front of my husband that I was not interested in improving our marriage – triggering paranoia that I was planning on divorcing him.

Passing the Buck To Another Program

Despite his noncompliance, he was “graduated” from the PTSD residential program along with – get this –  a verbal apology from his team for his treatment NOT having been successful. They recommended he enroll in a residential Psychosocial Program because he was still ill but added that a bed would not be available for about three weeks. They documented he was still sick. His psychiatrist noted in her discharge support plan that my husband was now fully disabled and unable to maintain his employment or “maintain relationships.” After writing this, she stated that his wife, children and sister would be involved in supporting him after discharge. Huh, she wrote this at the same time she was writing that could not maintain relationships.

His doctor either didn’t know or care that the other members of his new support team were all under 21 and three of the five lived out-of-state in court ordered sole custody of their mother. The two minors living at home were uncomfortable with his erratic, raging and abusive behavior by this point and did not want to be around him, never mind take care of him. This left only me and after he left the hospital, I was deliberately and repeatedly excluded from talking to his doctor because they hid behind HIPAA, saying they could only discuss his case with him.

My husband was sent home in far worse condition than when he went in.

Treating The Brain Differently

If my husband’s brain were damaged in a part that made him a quadriplegic, the VA doctors would not released him until he was stable and then they would have arranged for him to enter a physical therapy facility for addition treatment. He would have received a treatment plan specific to his needs and if at any point that program wasn’t working or there were complications, his doctors would have worked together to make adjustments. If there was a crises, the quadriplegic would have been taken back to the hospital. The family members would have been included in his discharge discussions and been educated on what to expect when he eventually was sent home. Ramps and other adjustments would have been arranged at the home. A spouse would be provided support as clearly the marital relationship would change even if all the physical needs of the patient were being provided by nurses, and even more so if they were not. Once home, the quadriplegic’s doctor would provide access to ongoing treatment and would monitor his condition.

No one would have prescribed a motorized wheel chair for him and said it was on the 10th floor of a building with no elevator because they would know that a quadriplegic doesn’t have the ability to walk up ten flights of stairs.

Now compare that to what was done for my husband and our family. Where was our support?

The psychiatrist noted that he is 100% disabled. She said he was incapable of doing his job – taking care of others – yet expected him to take of himself. Clearly, my husband’s psychological disabilities were great. No one questioned that. Yet, I was given the role of being his caregiver without support.  I was cast in a parental role. But no one can be a parent and a spouse at the same time. As soon as he returned home, his psychiatrist moved on, spending less and less time with him each month. I  truly believe that if his psychiatrist had called him after discharge and said, “We noticed you didn’t show up for that program you signed up for, how about you come on in on August 15 at 8 am” and gave a couple followup calls to remind him – he’d show up and as long as they monitored him, he’d comply just like he did for every other directive the military gave him for 40 years!  I lived with him, I knew what was happening in real life, not simply what he was telling her, yet my input was seen as interference.

In short, the VA did not put any supports in place that would have helped him get to the 10th floor.

During all of this, I was dumbfounded by the ridiculousness of our situation. The psychiatrist acknowledged that he could not maintain relationships. This meant he could not accept help from a voluntary VA caregiver because that requires him maintaining a relationship. When I, as his spouse, raised these issues, I was told, inaccurately, that privacy laws kept them from answering my questions. Again, this would never happen to a quadriplegic. Leaving a quadriplegic in his bed without assistance and telling a spouse that her concerns couldn’t be addressed would be morally wrong and malpractice. Yet my husband was cut loose untreated, paranoid and delusional, without him having the mental clarity to care for himself.

Given Money But No Guidance

Because his psychiatrist acknowledged that my husband was still ill, he was awarded a 100% disability rating. That resulted in 100% paid medical coverage for the rest of his life and disability payments that brought his income far above what he had ever earned, now totaling (with Social Security, disability, and pension) over $11,000 per month. How could he manage those benefits if he were sick? (Note that my husband does not walk on the streets but drives around and is victimized as “friends” are more than happy to affiliate with him if he is buying.)

Back to my quadriplegic example. The medical profession makes it incredible difficult for someone who is a quadriplegic to not follow their treatment plan. Yet, they make it incredibly easy when it comes to psychiatry. I did everything I could to educate myself about his known PTSD, but there was absolutely nothing I read that could have prepared me for is happening to him and our family.  When he became filled with rage over something he didn’t understand, I didn’t know if my husband would be assaulting me or my son. My husband has signed contracts to buy houses, cars, iPhones, remove money from accounts that aren’t his/his alone, attempt to adopt 21 year old pregnant women and so on with the assistance of salespersons or eager reward recipients, yet he has no ability to follow through on an agreement that he alone wants.  He could be upset with me for wanting to spend time “too much” time with him and also be upset that I was giving too much attention to my children or my job as a teacher.

Let me be clear, my husband was of sound enough mind in the beginning to know that he needed help. He wanted to get well so went to the prescribed PTSD residential program because he trusted the VA doctors. He did not object to the program. He did not object to taking the pills. But with no follow up our life is now like his pill box. It was ordered and structured and made sense when given to him – until he was put in charge of it.  Now the pill box is a mess and so is his thinking and paranoia.

Where is the medical system in all this?

The medical system now is hiding behind our legal system. When I called the outpatient psychiatrist, his primary care physician and social worker to let them know my husband was not compliant with his meds or keeping treatment appointments, I was told that HIPAA prevented them from telling me anything (I never wanted to know anything, I knew what was happening and I had called to tell them what was going on! Did they listen?)

They were adamant that they could not call him at home to see how he was doing and ask him to come in because that would violate his privacy. If he needed help, he would need to contact them because he is an adult.  I later learned they actually did call him each time I complained to tell him that I had called, which resulted in escalating his paranoia. “Why do you keep calling the VA asking for my medical records, are you going to divorce me?” I learned other things much later, like that one professional, while documenting my call, made sure to state that she was careful not to disclose to me that he had an appointment later that day – as though I was meddling with a patient’s business who was disorganized in his thinking. There is no subsequent documentation of him ever attending an appointment later that day. Had I known, I could have gotten him there.

I did not give up on him. I called the VA Caregiver Support line. Months of calling the local number and then the 800 number finally resulted in me being told that the VA would not call me back because when they contacted my husband, he told them, “I am confused as to why my wife would call asking for caregiver support, we don’t need that.”

My husband has had extensive run ins with the local police, judicial and financial entities and it has been further traumatizing for us both. We have been through the Baker Act (involuntary commitment) here in Florida, an emergency Guardianship hearing and Protective Custody Order hearings. Each has only made him more paranoid and confused. During one hearing, I was again explaining that my husband is a kind person whom I respect for giving his life to protect our country, but he tends to rage uncontrollably because he is not complying with his meds and treatment.

My husband stated to the judge with tears in his eyes “I don’t understand how she can say I am the kindest person she knows and say she is afraid of me.” We have been in front of the same judge many times and I empathize with him because his hands are tied by the law. But he is NOT a psychiatrist and these things can’t be sorted out in a courtroom – they are medical issues.

Walking On The Same Path Over and Over Again

We are stuck on the same path until he is treated. This cycle could be broken if  VA psychiatrists acted like the medical doctors they actually are and not use HIPAA and other laws to avoid treating him.  They KNEW he could not comply once discharged yet offered no supports. During the past three years, he’s gotten progressively worse and now says he doesn’t want treatment. He has paranoid delusions about being captured and not being able to protect his loved ones.  He no longer has any insight into his illness. My husband is on a path to tragedy for himself, our family and perhaps some one else who happens to be in the wrong place at the wrong times.

He is my husband, he is a father, he fought for our country for over 40 years taking care of other warriors mental and physical health, he should not be denied the care he needs because of our legal system. His doctors are medical professionals who took an oath to do no harm and they need to stop harming their patients by standing behind legal barriers that don’t even seem to be real. They begin to act like every other medical specialty that doesn’t involve a psychiatric illness. They need to provide care for someone who doesn’t believe he is sick.

Please VA, go find your MIA patient and aid him in accessing the treatment you prescribed over three years ago – just because his disability prevents him from complying it doesn’t mean that he wants to be suffering from PTSD for the rest of his life and he definitely doesn’t want to hurt anyone and enter the criminal system.

My husband deserves better and so does our family!

Respectfully,

C. B.