Anyone that's familiar with my blog knows that my husband, an active duty Army Soldier, has health issues. The issue is progressive Dementia. Let me add that Dementia is a symptom of a disease such as; Alzheimer's, Frontotemporal, Lewy Body, Vascular, Huntington's disease, etc. It is not about misplacing keys or forgetting things. Yes, those things happen often enough but it's much more. Unless you live and care for someone that has dementia there is no way to comprehend the realities of it. I lost both my maternal and paternal grandmothers to Alzheimer's disease. I had absolutely no idea what it must have been like for those closest to them at the time. Every person with dementia presents in a unique manner. Each type of this disease is different. One thing I'm grateful for is that with my husband there are still many good moments, especially late morning and early afternoons.
There is no way to determine the cause of Dementia until an autopsy is performed. Doctors have to make their diagnosis based on the data obtained by tests that provide empirical proof of the actual brain damage. The first neurologist that we saw is 80% sure that it is Lewy Body Dementia. I want to note here that for reasons that he didn't share with us he wouldn't provide that information directly to my husband's Command. That same doctor gave a prognosis that is normal for progressive Dementia of 2-7 years mortality. Taking that information we have decided together to plan for the worst and hope for the best. When dealing with a terminal illness that approach seems to makes sense to us.
My husband started having problems two years ago. His perfect military record became marred with missed formations and having alcohol in his system. Before things got really bad my husband went to see the company PA and told him he thought he thought something was wrong with his brain. The PA ordered some blood work and sent him on his way. My husband was having anxiety attacks and one morning he actually had a hallucination on his way to work that upset him so much he had to pull off to the side of the road and pace around until he felt normal again. He began to self medicate more. Of course that brought on a whole new set of issues. Mainly, once you are deemed to be a substance abuser then that defines your medical and health issues completely. Any other issues you may have no longer matter. All other problems are attributed to alcohol.
Initially he was diagnosed with alcohol abuse and adjustment disorder. That was BS (sorry for the colorful language but in this case it's appropriate.) From my viewpoint it seemed more of a label so the unit wouldn't have to take responsibility.
Then came PTSD. On the heels of the PTSD diagnosis came Major Depressive Disorder and Generalized Anxiety Disorder but the alcohol abuse diagnosis was still front and center and was the only concern addressed by his Command. During this time my husband's company changed Commanders 4 times. That might not seem like a big deal but here is why that is a problem; first impressions.
The Commander he served under in Iraq that knew his work ethic and abilities was gone. This is when his symptoms first started becoming noticeable. The incoming Commander had no personal experience with my husband and just saw someone that was flaky and spacey and perhaps lacking in motivation. That Commander was removed from his position and another one took over for a very short time. Then another one came in. This newest one kicked people out left and right but then seemed disposed to let others slide. There didn't seem to be any rhyme or reason in his methods.
This was also when I learned that the majority of the NCO's there really didn't care about their Soldiers as much as they should have. What was stressed upon them was doing what the Commander mandated in order to stay in his good graces. Soldiers suffered as a result.
To continue with the timeline of events after my husband's initial visit when he knew something was wrong it took six more months to even discover the existence of the R&R center. That is where Soldiers with mental health issues go. Once we learned of the place it still took another month to get an appointment. It was also about this time that I started to realize that perhaps my husband was right and this wasn't just mental illness. I just didn't know what could be wrong.
We began to request a referral to neurology. Those requests would be ignored or dismissed for over a year. We also requested a transfer into the Warrior Transition Unit (WTU). That took a year to accomplish also, finally in July 2013 he was transferred. At this point my husband's only goal was to make a full recovery and deploy again. After multiple attempts and numerous counseling sessions he wasn't showing any signs of improvement. In fact he was getting worse. October 2013 his psychiatrist put him on a permanent profile and because of this a Medical Evaluation Board was instigated. It was also during this time that I started voicing my concern to others. I thought my husband had Dementia.
Before he ever saw the neurologist the MEB found him unfit for duty. His mission at WTU is to focus on his health and attend medical appointments. At least that was my understanding.
Even when we finally got a neurology appointment in January 2014 that doctor didn't think it would be Dementia. First there was more blood work. This was to rule out alcohol related (and also treatable) Dementia along with some other forms of treatable Dementias. Then there was an EEG to check for seizure activity. Then the MRI. Of course the blood work was fine. Then there was the phone call a few days after the MRI. I let the Dr speak because even though I knew he had dementia, it was much harder hearing it from a Doctor. I was rendered speechless and in tears. "Your husband's MRI did show something. I won't go into details over the phone but your suspicions were correct. I want you to know this is not alcohol related." The only words I could get out were, "I know." He continued by saying that of course because of my daily proximity to my husband I would have known before anyone else.
After the sit down appointment we were told that he has progressive Dementia. Specifically left hippocampal atrophy. It is progressive, fatal, and incurable. There is no treatment beyond medication intended to slow memory loss and ease tremors. Let me add that there is no way to tell if the medication to slow memory loss actually works.
We took this information back to my husbands Chain of Command. The Platoon Sergeant immediately made the comment "I lose my keys all the time, it's nothing." This rendered me fairly irate, but I didn't say anything. I calmed down and thought about it. I realized that yes, most people would think that Dementia simply means that you fumble around and forget things. Believe me when I say that is not what Dementia is. It is so much more. It involves a complete change in both personality and behavior. There is also sleep disruption. In my husbands case it means physically acting out all his dreams, good or bad. There are holes in the wall the exact size and shape of his head because he dreamed that he was running. There is just too much to cover here but all the facts are available to anyone interested in having them.
I met with the nurse case manager and told her I was concerned about the lack of understanding for what was going on with my husband and asked for her help with awareness because to all appearances the Company Commander refuses to acknowledge progressive Dementia. He continues to focus his attention on the history of alcohol misuse. Obviously, alcohol does not help but to continue to push an agenda based on a theory that has been proven false multiple times by medical professionals is ludicrous. It is also a waste of time and energy. Theirs and ours.
Now leading up to the events that happened March 17, 2014 are as follows:
Husband is on a program to reduce alcohol usage. Quit date March 22, 2014
Platoon Sergeant and 1st Sergeant are aware of this reduction program.
Sees a Doctor at the Army Substance Abuse program to get Naltrexone to reduce cravings.
Sees his Primary care doctor, is put on Inderal to help with heart rate and withdrawal symptoms.
I request leeway with morning formation. This makes someone upset. I do not know who at this point. Request is denied.
They now decide to make an issue about his alcohol reduction program led by physicians. His program included utilizing the SMART Recovery program, Dr. T from ASAP, Dr. C from Thomas Moore Clinic, and Ms P (LCSW), also from ASAP. **Feels like retaliation**
*Important to note: Alcohol use is never allowed in WTU because of medication interactions. But it was not a secret and never was. His 1SG and PLT SGT were both aware and gave every evidence of being supportive toward his efforts to attain complete abstinence.
On the advice of Ms P from ASAP and with the encouragement of his Command he voluntarily entered an inpatient facility for 1 week in order to complete the final stage of his abstinence program in a controlled environment with experienced supervision for safety purposes. *Detox can be fatal.*
Upon discharge from the facility after successfully completing the detox program my husband requested a prescription for Antabuse which will prevent any alcohol use. The final tool.
He detoxed within 2 days but honored his week-long commitment and continued in the counseling and therapy program until his official discharge. At this time he was anticipating his first requested leave in his military career Monday March 17th. In fact, he has never in his entire life requested so much as even a 3 day pass.
He was discharged from the facility on Monday, 17 March as that was the maximum number of days paid for by the Army Substance Abuse program. He then in-processed back into Fort Hood and the unit by reporting to ASAP, R and R and the Company. At 1530 hours the Commander informed my husband that he was revoking the only leave he had ever requested. The Commander told my husband this when I was not present and as always my husband simply said "Yes Sir", saluted, and left the office quietly devastated but maintaining strict military decorum, something he places a high value on.
In addition to revoking leave the Commander now wants IOP (Intensive outpatient), PHP (prehospitalization program) , and EMMO which is picking up one days worth of medicine 7 days a week for educational purposes. He was also put on High Risk status which means formations 7 days a week with no respite. These are ways to punish and humiliate Soldiers and I have to wonder why these actions would be taken against a Soldier that has shown more integrity and determination than the average Service Member.
Here is why none of this makes sense: My husband is in individual therapy with an ASAP counselor and an ASAP doctor, attends SMART Recovery, has two additional counselors, another psychiatrist, neurologist, primary care physician and a nurse case manager. (I think he has the whole counseling thing covered.)
It is well documented that he does not monitor his own medications. I'm the one that handles this issue and I do it from the time the original prescription is given to the refills of said prescription and I give the correct dosage of the prescribed medication at the appropriate time. As of now this is a thrice daily multiple meds routine that changes fairly often.
If EMMO is supposed to be put in place each time a Soldier is prescribed a new medication then we should seriously look into why he wasn't compelled to follow the EMMO protocol for any of the other new medications he's been given. Even if it were strictly for educational purposes I feel compelled to reference documentation from the neurologist that says "Progressive Dementia, not able to learn or retain any new information."
I stand here today confused as to why a Soldier who is strenuously trying to do the right thing gets punished for his efforts. I also struggle to understand why a college educated and apparently well experienced United States Army Officer in Command of a unit that is designed to assist Soldiers with medical and psychological challenges will not acknowledge his illness for what it is. I'm not being facetious when I say that I am totally at a loss as to where the disconnect occured.
I've been through the proper channels with my concerns. I followed the Chain of Command. All I seemed to accomplish was to make a bunch of people upset and generate a multitude of misunderstandings. Doctors that apparently have obligations I am unaware of won't speak up to the Command and contradict themselves within minutes, knowingly telling two different tales. That may sound like paranoia or hyperbole but trust me, it becomes much more understandable if you were to listen to the recordings I've made with my phone in my pocket. Making recordings may seem extreme or unsavory but when you're constantly told one thing in the privacy of someone's office and then that person vacillates or outright falsifies later when dealing with Command then it makes perfect sense to record everything. I now have the luxury of proof instead of wondering which version of any given story is going to be taken for the truth.
It appears that there is an agenda here that is at odds with US Army standards but we are unwilling to subvert our ethics or standards just to make our lives easier or more comfortable. My husband has suffered because of his strong belief in loyalty and duty. This loyalty has not been reciprocated. Unfortunately he will continue to suffer because he will never compromise. Almost daily, even when I'm pleading with him to request a transfer or to file a complaint, the only response I get is the same one I've gotten for years. "I will be loyal to those with whom I serve. End of discussion"
On March 20, 2014 a new Doctor finally entered into my husbands medical profile (what the command bases decisions on) the Lewy Body diagnosis with a PUHLES of 111114 and "Soldier has a form of dementia that will progressively worsen within a relatively short time as he steadily loses control of brain function. He can appear to have normal mental status when he is not experiencing any stress, but this can change at any time, with "good days" and "bad days" (similar to what is seen in Alzheimers). He will become lost if trying to drive himself somewhere, and should not drive alone. If involved in Ride to Recovery, SM should be accompanied by another rider at all times. He has unpredictable lapses in awareness of surroundings, alertness, memory, and ability to maintain socially appropriate behavior. He is prone to lapses in impulse control that may result in excessive eating, drinking (including alcoholic beverages) and spending. When he dreams, his REM sleep disorder causes him to get up and perform the activity he is dreaming about, which can include eating and drinking (including alcohol), or vigorous physical activity,with no memory of the activity when he awakens the next day. He is frequently not able to wake up after a night of active dreaming activity, and must be allowed to sleep until he wakes up of his own accord. No possession or consumption of alcohol. No functional firearms, weapons, sharps, ammunition/other munitions, explosives, or range. Soldier must have 8 hours of rest per 24 hours."
The Commander is out until Monday and does not have to accept what the Doctor has written. I will update when I know more.
**UPDATE** 3-22-14 From my Facebook post: Last nights little unannounced search and seizure by Cadre at the Fort Hood Warrior Transition Brigade made me wake up with a start. I jumped out of bed and opened my spice cabinet. It's full of alcohol! Both store bought and homemade. It didn't even occur to me that I had all of this alcohol. Then I wonder why he didn't grab the wine coolers (that I had also forgotten about) that are in the fridge. I think there is a bottle of dark ale too. All these things in locations that were searched. Oh wait, there's the cold medicine too that's in the fridge!
My stomach is queasy knowing that I missed all these things when they could cause him to be terribly ill. It just simply did not occur to me.
I'm no less mad about the behavior of his leadership. They need to get a grip. We have one. Mikey has one. Getting a grip means having a plan that makes sense. What the Cadre are doing makes no sense other than they have to make us look bad so they look good. However, we have been open and honest. Can't say the same for their sneaking and conniving.
I can't help but wonder what they are hiding....and why. Perhaps it's that they are to get rid of soldiers at all costs?
**UPDATE** 3-23-14 From my Facebook post: Cadre at Fort Hood Warrior Transition Brigade coming again this morning to search the house. Does anyone else notice this pattern of harassment? Bring it on, we have nothing to hide. For the well-being of Mikey...yes, I'm absolutely positive that is why they are doing this. hmmph
**UPDATE** 3-25-14: The Fort Hood Warrior Transition Brigade Surgeon rejected and expired the profile that was written for Mikey. It explained in detail the issues that he has as well as a diagnosis. Their excuse was they want to wait on neuropsychological testing to see if it's a different diagnosis.
WHAT? Neuropsychological testing is sometimes used in the evaluation of Alzheimer's disease to learn more about the nature and level of a person's impairment.
IT IS NOT USED TO MAKE A DIAGNOSIS!!!
I believe their reasons for rejecting the profile are that of reprisal. If there is no profile they do not have to accept that his behavioral issues are caused from his illness.
This Doctor was amazing. He was completely understanding and even expressed shock that no one had put in a diagnosis. We did NOT ASK HIM TO!!! We did not ask him to write this profile. We did not ask for anything. He read the records. He looked at everything.
Someone got to him. Someone got him to back down.
Make sure to pay attention to this video from 1:16 to 2:30. Nothing suggests that he has alcohol related dementia but it suggests as to why he has had such an issue with it.