Stripping the Caregiver Title Does Not Strip Me of My Caregiving Responsibilities

This is the first time I’ve ever talked about my caregiving journey from start to finish because it’s a long, complicated and emotional one. I became a caregiver to my husband, Jason, 10 years ago. I need to be with him 24/7 and am basically his human service dog. Jason served in the army in the Intelligence/communications section from 03’ to 09’ and during his time served multiple tours in Germany and Baghdad. Jason was never in combat but his base got bombed and he was missing for hours. I’ll never know exactly what happens because he doesn’t talk about it but the trauma he endured when he was there and after he came home left an unshakeable imprint on him. Jason has more diagnoses and struggles than I can even list, but to name a few he struggles with: TBI, PTSD, depression, anxiety, hallucinations, compartment syndrome in both of his legs and several stressed organs; all due to the military. From my first hand experience, 99.9% of his ailments are due to the fact that Jason was seen as a number, not a human.

I officially became a caregiver in 2020 but then lost it in 2021 because the VA reorganized the caregiver system causing many caregivers to get dropped. The renewal of your spot in the caregiver program is reviewed yearly. Although I lost the title and stipend associated with being a caregiver, I still have the responsibilities of being a military caregiver 24/7. Daily, I still have to take care of his meds, food, driving, money, budgeting, appointments, solo mommying. Simple tasks can’t be done, it took months to find a baby monitor Jason “trusted.” I have to tell him if he's hallucinating, advocate for him at every moment, keep him out of his episodes. I translate the world to him through a language he understands and am basically everything but his body. Because I no longer have the official title, I am considered a simple civilian and won’t be able to be buried with my husband, I can’t be a part of his medical calls, we have to write the will differently. I have my MBA and can’t use it because I need to be a full-time caregiver and solo mommy to keep my family together.

Jason and I met in 2011; he was in Maryland finishing up his service and I was in Connecticut going to college. Jason was visiting his hometown of New London, Connecticut when he got into a pretty bad car accident and decided to stay around family and friends. He went into auto mechanics for a year but it didn’t click so ended up attending my school where we met in a class. The class we met in was a drug/alcohol class where I was a volunteer note taker and the only reason he was in it was because Veterans don’t get dismissed credits in the state of Connecticut. At the time, I was dating an abusive boyfriend and therefore didn’t have boys on my radar but platonically talked with Jason, whose name I could never remember so dubbed him army boy. I had no idea that the class was going to change my entire life.

In the class, students had to give presentations. Jason talked about his experience with alcoholism in Germany, which is how I knew he was a vet because for the first 8 years, he never spoke of it. He wanted nothing to do with the army or VA and looking back I can tell he spent the majority of his energy masking. We didn’t have a love at first sight, it was more of this feeling of knowing I had to be in his life one way or another. Over the summer, I broke up with my abusive boyfriend and army boy was at the forefront of my brain. Our school was very cliquey and unless you had classes together, you did not see each other again. But during welcome week in 2011, I was walking to my dorm and I saw him, I still remember the exact spot. I’m not sure what happened that summer but his demeanor was different. Come to find out he became a math tutor; his heart and love is in math. We got talking and ended up missing the welcome back dinner so I bit my tongue and offered to have him over to my place and after that night, we were inseparable.

Jason’s PTSD came and went; we knew it was there but he worked really hard against it. I was a flawed person as well and we decided that if we kept working on ourselves. we would stick together. We are opposites no one gets how we click but somehow we just do. We got engaged in 2012 and married in 2013 and when we moved in together, I immediately recognized his trauma tendencies. His PTSD was fighting against a good thing because his brain convinced him he didn’t deserve anything good, even verbally wishing a train would hit him. I got the worst version of my husband at home because he was decompressing and I knew it was an imminent need to get him help. I thought being his wife would allow me to get him help, but unfortunately I was sorely mistaken.

I learned that Texas was one of the best states for vet services dealing with mental health issues so within a month, we sold all of our belongings and moved to Texas with only savings. Even though we were struggling, we slowly began figuring it out. If I hadn't done my own work advocating for my husband, he would not be here with me today; and neither would my son. Over the past three years, Jason has been out of our house 90% of the time going through 6-7 inpatient treatments and seemingly never ending relapse cycles. In 2017, the inpatient program Jason was in had graduated him and sent him on a plane home. Without notifying me, or him, that same program called CPS and 5 minutes later I get a knock on the door. The problem is that the after treatment for these programs is non-existent. I get told to “talk to your VA team and listen to Jason” but Jason went from every moment of his life being structured in the program to 24/7 freedom and that’s a lot for a person who deals with what Jason deals with. And people forget, I am a human and I was dealing with my own personal/familial traumas. Unbeknownst to me, when he got back Jason was plotting his death and he self admitted to the VA. All they did was keep him for 6 hours until he cooled down.

Then, during Veterans Day week in November of 2020, the worst week of our lives happened. Every time Jason went to treatment plans it was because of mental health issues, he sensed when an episode was about to happen. I didn't screw with it because I was his caregiver and in order to keep my family together, I have to keep him safe. We didn't know why, but he was having all his fits in one sitting, one after another, disassociating, throwing up, hallucinating. I followed my crisis safety plan, got Theo into daycare and called the crisis line who connected us to the VA. I needed a “referral” note but they didn’t give me one and said if it was bad go to urgent care in the morning. We had to drive two hours to the VA and because of COVID, I couldn't go in with him. They didn't tell me anything, Jason still mentally not all there and has a really hard time advocating for himself medically. Since we called the crisis line before and then went to the ER, CPS had to be called. Both the ER and crisis lines put in referrals but nothing was getting done. Theo was with the daycare woman for a week, I wasn’t able to contact him, and CPS called saying if I didn't have a safety call in place already he was going to be put in the system. Finally, Jason’s doctor answered and was shocked CPS was called and that Jason wasn't in inpatient. I was told by CPS that Jason must go into long patient care in order to keep Theo and the VA told Jason “just get a lawyer you’ll be fine you’ll do outpatient.” We have and had so few options but I had my social worker call Jason’s and say a program needs to materialize or Jason will lose his kid. The VA didn't want to do this program because it was a private program that was three months and cost more than my six years of education. If he makes it until January 2022, it’s the longest he’s been home and If he makes it until July, it's the longest he’s been a father.

I can’t thank the VA for much of anything.When I lost caregivership, I went through a deep mourning. To plan for losing the stipend, I am working at Starbucks located across the street part-time when the boys sleep so I can save up some money. Right now, it feels as though I am going against everything I have been trying to build for my family: a safe environment, a plan for the future, and getting our finances in order. I can’t really thank the VA for anything. They weren’t there for us. I did all my own research and advocating and eventually found non-profits who truly cared about our well being. I had to fight for years for his total impairment. How can we stick together when the systems that are supposed to protect us don't care about us? How can you support your vets when you're not even listening to them?

The ramifications of losing caregivership are rampant. My first priority is my boys. Hard choices have to be made and my boys come first, without question, which ultimately means I sacrifice my own health. I’ve had to skip surgeries, appointments, and job opportunities because my boys needed something. I have to make compromises and impossible decisions in order to keep my family together. I try everything to get extra money, but it is really hard. I have an MBA in project management and I can't use it because I have to assume I will have to abruptly drop things to take care of Theo and Jason. Theo can't even do daycare because of his experience the last time CPS was called and he also needs a $1,000 EEG. We were advised to go on a payment plan but I am still trying to cut my education and medical debt. The caregiver stipend covered rent so I was able to afford my loans and still take care of my boys, not comfortably but it was enough. The cost of caregivership is so much more than people realize: family, mental health, passions, work, autonomy. I have no choice, I had to let it all go in order to keep my family together. I started working at the Starbucks across the street to save money while the boys are sleeping.

Mentally Jason was never home, I can see signs of his PTSD but that means I have to see him 24/7. The cost of me being a caregiver and standing by my husband has cost me nearly everything, including my son. There is a very blatant lack of resources and communication across the VA and it has detrimental effects. My husband is not just a number, I am not just a military spouse and my son is not going to end up in the foster care system because the VA doesn't care about us; I will care about us enough to make up for that every single day.

Learn more

Elizabeth Dole Foundation: https://www.elizabethdolefoundation.org/hidden-heroes.

Hidden Heroes: https://hiddenheroes.org.

Rosalynn Carter Institute for Caregivers: https://www.rosalynncarter.org.

VA Caregiver Support Program: https://www.caregiver.va.gov.