Wednesday, October 9, 2013

Our Story: What Would You Do?

My husband is an OIF vet who was injured in Iraq in 2005-2006. He suffered from multiple traumas to the head in nine different IED explosions, and lost consciousness at least two times during them. He was never properly treated for his injuries while in Iraq and none of his medical records from any of his deployments are in his medical files. He is currently rated 100% permanent and total with traumatic brain injury, severe PTSD, non-epileptic seizures, chronic headaches, and hearing loss.

I am my husband’s full time caregiver under the new Post 9/11 Caregiver Act. I get paid for 40 hours of care per week (tier 3, highest possible tier) provided to my husband.  When I was accepted into this program we did not have any confirmation for his symptoms/disabilities outside of PTSD rated at 50%, yet qualified for the stipend at the highest tier. He now has new ratings on top of the original PTSD (100% P &T, traumatic brain injury, severe PTSD, non-epileptic seizures, chronic headaches, and hearing loss).  Last week my husband was informed by a certified letter that my tier will drop to tier 2 (25 hours of care per week), with no explanation regarding the change.

My husband has tremors, and balance problems which means he requires assistance at times not just reminding him to take a shower, but really hands on help to get in and out of the shower and wash. Our caregiver coordinator offered homecare service to assist me with this, and also to get assistance established for respite care. I asked the PCM to request a consult and he didn’t feel it was necessary.  The CSC also advised me to ask for Life Alert so when my husband would be safe, for example, if he wants to be outside by himself and has a seizure he can press it and call for help afterwards. I have found him several times outside on the ground o on the floor in the past. The doctor also denied this with the statement that he will become dependent on it.

It is difficult to get him to our VA facility in general as it is a 2.5 hour drive and many times he has seizures before or on the way to the hospital. I have asked for referrals to a local therapist, as he can’t have productive therapy or concentrate after those episodes.  The requests have been turned down.

At home he has seizures at least every other day without any additional stress.  We are in the process of changing his medications to see if he can get some relief.  At this point we hope to get him back down to one to two seizures a week.  His records report grand-mal seizures, which we were told verbally cannot be ruled out even though they were not caught on an EEG study. His PCM states that he needs to be supervised at all-times due to his seizures, and we have seen a civilian doctor who feels he needs 24 hour supervision as well, because he could seriously hurt himself when he goes down during a seizure.

He had a long term EEG study at the Houston VA.  The treating neurology team prescribed a wheel chair for him because they witnessed how bad his tremors and his weakness can get. He can be very unstable when walking and is prone to frequent falls. He uses a cane for support due to balance issues.

The PCM requested a grant through the VA to get certain accommodations in our house for his safety. I cannot even find a contractor in our area who is willing to comply with the VA rules and regulations, or who is willing to try to work with them. The stair railings are falling apart and are unsafe due to my husband grabbing them to brace his falls. He ripped out several of the spindles.  Concrete needs to be poured next to the carport to allow wheelchair access.  A ramp is needed to make the access to the house easier. Inside, I have to assist him getting upstairs to the bedroom and bathrooms. He rarely sleeps in our bedroom because it is a hassle to get upstairs.  He usually sleeps on the couch.  The home health nurse who was in our home for my caregiver home visit also told me about the grant and said she will put in a request for a stair lift. 

One doctor is in the process of getting an electric wheelchair due to injuries he sustained during a fall. He has a partially torn ligament in his shoulder which requires surgery to repair.  A cyst will be removed at the same time. 

My husband has constant diarrhea, which causes him to soil himself during a seizure. I usually have to sponge bathe him downstairs until it is ‘fit’ enough to get him upstairs to shower or bathe. Without constant care he could have a seizure and lay in his own filth until he is able to function normally again.  Most of the time he sleeps for days on end, only getting up when I prepare food and force him to eat while trying to keep him awake and not fall asleep over the plate.  I have to wake him to take medications and use the bathroom.

He had a gastroenterology appointment and was diagnosed with GERDS and a constricted esophagus (causes swallowing problems).  They stretched his esophagus and he now has medicine to slow down his metabolism so he has fewer bowel movements. He has already gained some weight back.

On the other side we have days and weeks where he does not sleep at all, staying up for 72 hours on end with 10 to 30 minute naps in between. On those days he wanders around checking things in our home and working himself up to a major paranoia about people wanting to harm him or us, and believes that everyone is against him. He is in super vigilant mode. Sometimes he sees people who passed away (friends he lost, or people he killed). He is playing out scenarios from the past while really believing he is in combat.  I am the one who talks him out of it and keeps him safe, from himself and others.

He has major depression spells where he cries constantly and feels hopeless.  He had been seeing a social worker in the OIF clinic, but she was unable to connect with him. She is no longer seeing him as she did not feel he was making progress.  After confronting him he told me that at every appointment she asked what he had done since his last appointment, he responded nothing, so the discussion stalled.  Due to his mental state and severe PTSD we don’t go on outings.  He feels safe at home, and I cannot force him to go to a baseball game, etc. The highlight of our life consists of a local gas station, and the dollar store which is never crowded.  Occasionally we go to a small local restaurant at a slow time of day where they allow us to sit in the back corner.  He brings his service dog for support. 

He is afraid of the VA, to an extent, and is hesitant to tell his doctors what is really going on. After his last suicide attempt in 2009, he ended up in the mental health ward and not one doctor saw him for three days, until I demanded answers. When I entered the facility I was shocked at the hygiene level. He doesn’t want to end up in there again, and I don’t blame him. He feels hopeless because everywhere we go to get answers gives us a bogus diagnosis or does not have an explanation for his physical problems. It frustrates me that after all this time and having seen numerous doctors within VA we still don’t have answers or understanding.  We’ve been told that everyone with severe PTSD/mTBI should recover.  We are not statistics. I see my husband getting worse and worse.  Yet it can take three to four months just to get an appointment and still we come home without any real help.  When he is really struggling we don’t have months to wait.

He has a diagnosis from a neurologist at the movement disorder clinic in Houston for Tourette syndrome, which should explain those tremors and the swallowing problem.  This neurologist stated he believes that my husband’s onset of Tourette’s is caused by his TBI, and also told us there are no studies supporting his theory.   He also stated that he had diagnosed several veterans with this. I spoke with someone at the Tourette Syndrome Association regarding concerns I am having with this theory. Tourette syndrome usually starts before the age of 21. Nowhere in my husband’s active duty medical files is there any indication he was ever diagnosed or suspected of having any tremors, tics, or Tourette’s. The Tourette Syndrome Association confirmed my suspicions and asked for the location of the diagnosing doctor.

A neurologist has reported vision field deficiency, more pronounced on the right, as well as muscular weakness on both sides (also pronounced on the right).  He has started a new seizure medication.  He had a new sleep study done and the results show that he doesn’t go into REM state during sleep. 

The other neurologist he sees can hardly communicate in English and she has a hard time understanding us.  She seems convinced that certain tests he cannot perform are caused by alcohol abuse, which is not the case. It is a really frustrating situation. Would you want doctors such as these providing your care?

I struggle with all his paperwork 24/7. It took us forever to get his major diagnoses through the system, now it is time to start addressing secondary issues. I manage paperwork for the VA, SSDI, medical files, military files, HRC, and our insurances.  At times I spend hours on the phone waiting for assistance.  I pay our bills, take care of our child, do the shopping, cook, do home repair, take care of the lawn, clean, and wash clothes.  On top of that, I remind him and assist him with all his ADLs such as reminding him to take medication, reminding him to shower and brush his teeth.  I also shave his head (so he doesn’t need to comb it), shave his beard (because he shakes too much), and lay out clothes for him and help him get dressed.  He uses special cups to drink so he won’t spill due to tremors. I provide hands-on assistance with showers and baths, going up and down stairs, pushing the wheelchair, taking care of the service dog, taking him to and from appointments, taking notes, and encouraging him to have a relationship with his son.  I am there to calm him down and make sure he doesn’t harm himself. 

There is never a dull moment in this house, where I can find some rest.  I am always on alert.  When I have to leave the house for longer than an hour, I make sure that someone will check in on him or stays with him, depending on how he is that day. I frequently have to cancel important appointments for my son or myself due to his state of mind and his physical challenges. 

I gave up my well-paid position in the civilian world where I made a good salary and had a regular schedule.  Now I work around the clock with no normal routine, no regular sleep, and no end in sight.  If he is up all night, so am I.  He might be able to sleep the following day, but I still have commitments and a child to look after.  If I returned to work my biggest fears would be him committing suicide, harming someone else, or hurting himself during a seizure or fall.

I was diagnosed with Alopecia due to stress—there are bald spots on both sides of my head.  I recently had shingles, also caused by a high stress level.  However, as a caregiver I don’t have time to be sick or fully recover. 

I have now been informed by my Caregiver Support Coordinator that my tier will be reduced from tier 3 (40 hours per week) to tier 2 (25 hours per week).  I ask you, would you be willing to take my place for that?  I love my husband and no matter what is decided I will try my very best to take care of him and make sure he will be safe!

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