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

2022-01-04T11:32:51-05:00

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.

Hidden Heroes - The Elizabeth Dole Foundation

Campaign OverviewA major campaign of the Elizabeth Dole Foundation, Hidden Heroes is a multi-year, multi-faceted campaign that brings vital…

Response by PFC David Foster made Jan 4 at 2022 12:05 PM

2022-01-04T12:05:34-05:00

Thank you!

Response by PO2 Russell "Russ" Lincoln made Jan 4 at 2022 12:19 PM

2022-01-04T12:19:40-05:00

Kat Stigers You are a hero, keep the faith and good luck in your endevors.

Response by SGT David A. 'Cowboy' Groth made Jan 4 at 2022 12:39 PM

2022-01-04T12:39:35-05:00

Thank you sister Kat Stigers

Response by PO3 Cynthia Red Star made Jan 4 at 2022 11:38 PM

2022-01-04T23:38:28-05:00

Kat as you know, I feel your struggle and pain, being caregiver to a combat vet,, having to fight for everything,taking care of special needs kids and being a vet trying to take care of myself with nobody to help or that cares to help. Thanks for speaking up...

Response by MAJ Ken Landgren made Jan 8 at 2022 12:46 PM

2022-01-08T12:46:15-05:00

My wife does a lot for me. She protects me, warms me, and insulates me. :)

Response by SSgt Brian King made Jan 9 at 2022 10:09 PM

2022-01-09T22:09:36-05:00

Thank you for sharing. The VA is still a government entity, and doesn’t always have the veterans best interest. Everything is always a fight, the rules change, and the veteran loses benefits. I don’t have any experience with the “caregiver” program, but when you count on funds to help you and the veteran & family have a home to live in, and the rules change, there isn’t much choice left. Bureaucracy be dammed!

Response by MAJ Ken Landgren made Jan 9 at 2022 10:34 PM

2022-01-09T22:34:44-05:00

If the caregiver funds is part of the topic, the VA is changing the criteria which impacts the amount caregivers receive. I firmly believe this process will hurt the current caregivers as a whole. The flip side is the VA is now accepting all caregivers regardless of the era the veteran served. It would suck if I lost caregiver funds, but fairness makes it right.

Response by MAJ Ken Landgren made Jan 15 at 2022 7:23 PM

2022-01-15T19:23:09-05:00

Is he getting 100% from the VA? Is he getting SSDI? When was the last assessment for the VA Caregiver program?

Response by MAJ Ken Landgren made Jan 17 at 2022 10:15 PM

2022-01-17T22:15:01-05:00

I am trying to connect with a veterans' compensation group, but they need to accept me first.

Response by MAJ Ken Landgren made Jan 17 at 2022 11:14 PM

2022-01-17T23:14:19-05:00

Please PM what was said by you, your husband, and the VA rep. I promise not to stalk you. It requires too much time, dedication, and money.

Response by MAJ Ken Landgren made Jan 19 at 2022 5:43 PM

2022-01-19T17:43:05-05:00

The VA said got to this site. It will have the criteria for eligibility to caregiver program and the process to appeal. Has he gotten care from outside the VA? https://www.caregiver.va.gov/

VA.gov | Veterans Affairs

Apply for and manage the VA benefits and services you’ve earned as a Veteran, Servicemember, or family member—like health care, disability, education, and more.

Response by PFC Lawrence Pierce made Jan 20 at 2022 8:08 AM

2022-01-20T08:08:06-05:00

God bless you….my husband is the veteran and yes we will always do for them no matter what….I was turned down and appealed it and the decision was made and was told that part of being a caregiver has nothing to do with making sure he has all of his medication and taking when he is supposed to….I flipped a gasket when I was told that. Then we got a letter saying we could appeal that one….judge/judges will look at the decision and why we were denied the program. When I read your message I fully understand that the government really doesn’t give a crap….and yes we are not supposed to have a life either….God Bless you….my husband belongs to the group of Vietnam era guys and the saying stands..”Once a veteran hits the age 70” they are waiting for them to die and they are given the basic care….and if they didn’t have a wife/husband to do everything for them where would they be….I have had lengthy conversations with him and friends about you and how they are treating you….God Bless You…..have you given it a thought of taking this to Washington in front of congress? I am sure they are not aware of how broken the system is for the caregiver program. God Bless You…..and through all of this you had the best gift of all a child…..and they have the audacity to threaten to put him in the system….keep your faith and stay strong and know that what you are doing is what the Good Lord has put in front of you and he is with you all the way….God Bless You ….and by the way my name is not Lawrence it’s Dawn….

Response by PFC Lawrence Pierce made Jan 20 at 2022 10:32 AM

2022-01-20T10:32:57-05:00

Kat may I ask you where you live? We live in Gulfport, MS

Response by PFC Lawrence Pierce made Feb 2 at 2022 1:12 PM

2022-02-02T13:12:50-05:00

Hi Kat how are you doing? We all know the Veteran is as good as he can be but the caregivers fall silent and definitely and in the shadows.

Response by Melissa l Fry made Mar 3 at 2022 2:54 PM

2022-03-03T14:54:58-05:00

Wow ! I have cared for my mother for nearly 20 yrs. Nobody at the VA ever communicated that i could have been paid Serious lack of Communication