Veteran & Caregiver Personal Statements on Caregiver Program

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There is no doubt that the Expanded Caregiver's Program for older seriously disabled veterans and their devoted Caregivers, often spouses, turned out to be a cruel hoax of rejection. I have three 100% service-connected total and permanent disabilities plus several others and cannot even walk to take care of myself.

I’m very concerned that veterans severely wounded in combat are being dropped from the caregiver program. I think the VA has made changes to the program that are leaving many veterans without caregivers that desperately need them. This is going to cause more stress for caregivers and veterans. Please also think of our amputees with TBIs and no family. 

My husband, retired Sergeant First Class Joseph Swoboda is a three time combat veteran of Operation Iraqi Freedom. He was deployed during the initial invasion in 2003, again in 2005, and again in 2007. Each time, the deployments were longer and longer.   During the initial invasion and again in 2005, he sustained injuries from 2 explosions in which he lost consciousness; however, because of the intensity of the fighting, there was no time to be checked by medics, so he shook it off, and remained in the battle.   When Joseph was still an active duty soldier, I knew he was struggling, he was home, but he had never really come back from Iraq. A fellow soldier, and trusted friend also saw his struggle, and thankfully, insisted that he seek help from the overwhelming symptoms he was experiencing as a result of his Traumatic Brain Injuries and Post Traumatic Stress. The invisibility of his wounds has never helped with recognition.   Once these symptoms began to affect his work, Joseph was medically retired from the Army and during his out processing, a worker at Ft. Benning handed me an application for the VA Caregiver Program, but I was not really sure what I was applying for. When he was still active duty, I was his caregiver, but I never recognized it. I was managing his medications, I was raising the kids, I was managing finances, I was helping him remember things that he could no longer remember.  After Joseph medically retired to his home state, we began to go through the process of approval for the VA’s caregiver program. From the beginning, the program was extremely stressful. The caregiver support coordinator called me and asked me why I had applied because it was unlikely I would qualify. I responded that I had applied because my husband’s medical board officers asked me to, insisting I would qualify. Her attitude made me feel as if I was asking for something totally undeserved and unwarranted. By the end of the call I was in tears, and shortly after called the National Caregiver hotline to help me sort out my confusion and insecurity after this disheartening and insulting phone call.   Next in the caregiver approval process, the VA assessed his mental health. Rather than look at the thousands of pages of medical records compiled after almost 20 years in the active Army as well as extensive medical evaluations given in the year long medical board process, the caregiver program decided to ask the VA mental health provider he had seen only once during his intake at the local VA clinic set up to start his care. When asked if she thought Joseph needed a caregiver, her response was, “he seems fine to me”. When I asked her how she had made this determination, she admitted to me that she had no knowledge of the caregiver program and was therefore unsure how to determine eligibility.   Next they interviewed his new primary care provider who thankfully recognized that Joseph had many physical and mental disabilities including psychogenic nonepileptic seizures. These seizures are brought on by stress. He has a service dog seizure trained to help reduce stress and alerts to indicate potential seizure activity. I was called and notified in August of 2013 that I did in fact qualify for the caregiver support program at a tier 2 level.   As we progressed in the program, one of our first nurse assessors performing a wellness contact let us know that “we shouldn’t get used to this money because it was only budgeted for 5 years.” I found this statement distressful so I began to consider getting involved in caregiver advocacy. Also, at this time, caregivers across the nation were being dropped from the program at alarming rates with no clear explanation. This led me to apply and be chosen for a Dole fellowship within the Elizabeth Dole Foundation. Under this assignment, in June of 2017, Joseph and I were called to testify in front of the Senate committee chaired by Senator Susan Collins to hear testimony for the passing of the Mission Act. As the child of a Vietnam veteran, I felt it my duty to advocate for the inclusion of caregivers from pre-9/11 eras.   Unfortunately, though our mission was successful, post 9/11 caregivers are now facing an unprecedented and unjustified culling from the program. Joseph and I would never have testified in support of the Mission Act if we had known VA representatives would unlawfully misinterpret caregiver eligibility requirements within the law to eliminate most if not all so-called “legacy” caregivers from the program. Joseph and I were recently removed despite his providers’ full support for continuation within the program as well as successfully making gains in mental and physical health for the past 8 years. Through my work with the Elizabeth Dole Foundation as well as my husband’s two decade Army career, I know hundreds of military and veteran caregivers across the nation. None that I know defined as legacy caregivers have remained in the program. None.   Joseph may seem fine, but he has invisible injuries that are mitigated by a caregiver. If the caregiver is not in place, this support will undoubtedly cause the injuries to have a much more profound effect. All the work that he and I have done together to ease the pain, moral injury, and true consequences of war will be lost. Getting dropped from the caregiver program means that I must go to work full time which will cause stress within the household to grow exponentially. Please conduct a careful and thorough review of the The Department of Veteran Affairs Caregiver Support Program. Those of us who care for those who have borne the battle deserve it.  

I am a special education teacher by trade but have not been able to be in the classroom since my husband passed out April 2012. I have to be ready to drive him to doctor appointments, physical/occupational/speech therapies, MRIs, CT scans, PET Scans when he needs me. I took a job on Fort Bliss in 2015 part time, since my husband was being retired from the military. The position mandated a master’s degree and paid $14 an hour, something I had not seen since 2001 as a teacher in a public school. I did not receive any sick leave at this position, but they allowed me the flexibility to take care of my husband within reason.  I had to quit my job May 25th, 2017, due to an extreme safety concern for my husband. I received a call May 25th, 2017 from my husband. It was a 90+ degree day. He said our dog got lost. I was so confused because we have extended the height of our backyard walls to seven feet. I asked how he got out of the yard and he replied that he was in the desert, walking the dogs. Again, I was so confused because my husband had never drove off on his own before. I asked if he had water, and he responded no. He is on medication that causes dehydration. I looked at his phone tracker to find him in the desert, grabbed water, and left work. By the time I got there, he had found our dog, or to hear him say it, the dog found him. Both were not in the best of shape, but he refused to go to the emergency room. I cooled them down slowly, hydrated them and that weekend drafted my resignation letter effective immediately to care for my husband full-time. To this day he still does not understand what he did wrong.  We were accepted into the VA Caregiver Program in September 2017. We conduct all quarterly assessments with the program. I schedule all of my husband’s appointments, email and communicate with his doctors to keep them updated on his health, concerns/issues, memory loss, falls, need for referrals, and medication refills. I fill his medication pill containers and hand them to him to take (he cannot keep what day or time it is straight). I am the one that decides when a trip to the emergency room is necessary, and monitor all stays in the hospital since he pulls his own IVs out and leaves the hospital. This has been especially key in his care since the pandemic hit in February 2020, and in-person care has ceased.  I have now installed cameras at all our entrances, exits, and backyard because he might wander off or fall. I just got cameras for our vehicles connected with my phone, because I’m concerned about a “silver alert” situation. This way I am notified electronically if any person is detected in any situation. I also purchased him an Apple Watch. If he were to fall, and I cannot hear him, the watch detects a fall and notifies me.   I have had the bathroom on the main floor made handicap accessible. The Jacuzzi tub was removed because my husband could not step into it without losing his balance. I had a walk-in shower put in its place so a seat can be there. There are also grab bars to assist with balance. The VA even saw the need for the walk in shower and paid for this portion of the renovation. I utilized our money to finish the renovation, having a handicapped toilet installed, the vanity was also replaced with the tallest I could find so he doesn’t lose his balance while brushing his teeth or washing his face. Our bathroom door was so narrow, you had to turn to get in the room, so we paid for the door to be widened for wheelchair/walker access. I knew that time would come.   The monthly stipend I receive for caring for my husband is necessary for us to make ends meet financially. The $1600 is not much for an entire month worth of work caring for my husband, but every little bit assists us. Losing it due to the lack of our doctor's clinicians’ notes for what I do for my husband, is a hardship our Veterans and families and most cannot survive without it.  Please advise me on how you would like me to care for and document my husband 24 hours a day, 7 days a week. As a special education teacher, I am trained to be diligent with notetaking.  Activities of Daily Living (ADLs) that I complete for my husband. Shaving him or trimming his beard. Cleaning up if there was a toileting accident. Keeping track of his glasses and hearing aids. Combing his hair. Being there when he showers for when he loses his balance. Assisting his with socks and shoes. Putting his back brace on/off. Assisting with his walker, or wheelchair.  Instrumental Activities of Daily Living (I-ADLs) that I complete for my husband. Driving. Communication Management. Medication Management. All Financial Management. Care of Pets. Monitor Emotional Triggers. Monitor Migraine Triggers. Monitor Exhaustion and get him to a nap before he loses his balance and falls over. Schedule All Appointments. All Shopping. Plans, Preps, and Serves all Meals. Maintains the House. Monitor Behavior Struggles. Monitor Spatial Awareness. All Laundry.   Importance of knowing. Caregiving is ever-changing, it is not linear due to my husband’s polytraumas. His 10 TBI’s, PTSD, Intracranial Hypertension, plus the 50 other host of injuries leave me in survival mode to attempt to keep our daily routine as consistent as possible. It is my job to extinguish the “roadblocks” in and outside of our home. I have had to learn to recognize, predict, anticipate when Pete is frustrated, confused, exhausted, needs quiet, or needs to be seen by a doctor or go to the emergency room. This is not anything I would wish on anyone and very few people understand what we go through minute by minute. For CEAT to state my husband can be home independently 100% of the time, is an injustice to him and his 27 years of service.   If the way our Post 9/11 Veterans are being treated, or I should say NEGLECTED, “21 A Day” will be a small number compared to after the thousands being discharged from the program. Veterans will be becoming a statistic by accident by burning down the house or taking pills wrong. Or they will take their own lives because they are a burden on their family because the country, they fought for is not providing proper care for them. Not all wounds are visible.   My husband is one of the invisible wounded. He is NOT being provided proper care by discontinuing his ability to have a stipend for a caregiver. And having us jump through hoops is also not the way to treat our Wounded Warriors.  To quote the VA Secretary Robert Wilkie, “We expect this first phase of expansion will let us enroll twice as many eligible Veterans and caregivers.” There were close to 20,000 Veterans post 9/11 that were enrolled in the caregiver program on September 30, 2020. Let us see how many of them are left by the time all of the reassessments and appeals have occurred. The CEAT is neglecting any needs of Veteran’s with a “need for supervision, protection, or instruction” on a daily basis.  Please look into why Veteran’s that need supervision, protection, or instruction on a daily basis are not being considered for the Caregiver Program. Thank you again for listening.  

My Wife and I have been a part of the Caregiver Program for five years. I am 100 % disabled. My Wife is unable to work full time as she has to help me with daily activities of living such as bathing, dressing, grooming etc. She also also manages all my medications and drives me to all medical appointments as I am unable to drive due to my medical conditions. We have just been discharged and will be losing a significant amount of income. My Wife needs to be home with me as I am at risk of being in danger alone. Due to my TBI, I forget things very easily and can not be trusted to cook my own meals and remember to shut off the stove . It is unsafe for me to climb stairs on my own. Personally for us, being discharged is not only going to put us in a financial burden but more importantly it will be putting myself in a dangerous situation. I ask that you please revoke the decision to take away the Caregiver Program from Veterans who desperately need the help.

My husband was discharged from the program after 9 years due to "not needing 6 months of continuous care." My husband has a TBI, mood disorder, PTSD, and mental health issues. He was viewed by the VA as incapable of handling his own financial affairs and of being able to own a firearm due to impulse control and rationale. He needs a stable environment to keep his moods in check. He has major short term memory issues. He lacks judgement and rationale thought, My husband needs constant supervision to ensure he is safe and isn't taken advantage of. It has taken us years to create a routine that works to keep him happy, safe, and functional. His records show that he is doing well because I am here to make sure he is doing well. By being discharged from the program, I am going to have to leave him for the majority of the day and will not be here to ensure that he eats, take his medication or not over take his medication, grooms, gets dressed, gets out of bed, that his mood is stabilized, that he doesn't make an irrational decision that can hurt him or even kill him. The new VA regulations make it impossible for the vets that are more likely to die by suicide, accident, or homicide to qualify for the program after years of being helped by it. 

 My veteran was an ICU, army nurse in Iraq. She was medically retired after 18.5 years of active duty, having held both enlisted and officer ranks with deployments to Somalia, Bosnia and Iraq. She was medically retired in August 2009, after 2 medical boards due to PTSD, depression and orthopedics problems.
Veteran awarded ratings (2009): 100% P&T with Housebound

Since her retirement in 2009, her mental and physical conditions have gotten worst. She has chronic pain due to many orthopedics conditions, newest diagnosis of fibromyalgia (2020), and atonic neurogenic bladder (2022), having to go to the bathroom every 2-3 hours to empty her bladder. Her pain is truly incapacitating, rendering her unable to perform ADLs by herself.
Her PTSD symptoms are constant, daily reminders of what she went thru as an ICU nurse in Iraq 2003-2004. She has nightly nightmares, daily flashbacks, daily delusions, daily depression, anxiety, aggression, impulsivity, suicide ideations. She describes it has if her thoughts were bees in her mind, getting stung every second of every hour. Her symptoms are so hunting that she has tried to end her life 4-5 times since she came back from Iraq 2004.
 

She is compliance with her treatment, but nothing has worked so far. She has done every therapy available for PTSD and depression, to include 2 sets of prolonged exposure, and even ECT. Nothing has worked. Her mental anguish is consuming her; she has no friends, no close family relationship, no emotional support but me, her wife and caregiver. Having a caregiver is what has kept her from committing suicide all these years. The constant supervision, protection and instructions from her caregivers is what have kept her alive. She needs a caregiver to be able to sustain in the community.
 

During our re-evaluation done by <redacted>  Signed: 01/21/2022 08:29, at the Caribbean VA in Puerto Rico, this nurse, did NOT assess frequency of personal care services provided by the caregiver, but documented it as such, She twisted everything we said, documented inaccurate information and was very condescending when telling my veteran, that her suicide thoughts and feelings were selfish.
 

We have tried to reach our Resident Commissioner of Puerto Rico, United States House of Representatives, Jennifer Gonzalez Colon, but have not have any luck yet. 

I am the wife and legacy caregiver of a medically retired OIF USMC post 9/11 veteran, and we have been discharged from the VA Caregiver Program (PCAFC). I’ve given up a rewarding career in higher education to dedicate to my husband’s safety and wellbeing. Despite a severe cut in pay as a Level 1 caregiver under the old rules, it was a sacrifice I was willing to make. I knew that the money and accolades I worked hard for would be meaningless if he was not around to enjoy it with.
 

He served in Iraq in 2007 and was in the military for three years as an infantry rifleman. Awarded the Marine Corps Good Conduct Medal, Sea Service Deployment Ribbon, Iraq Campaign Medal (w/ 1 Bronze Service Star), Global War on Terrorism Service Medal, National Defense Service Medal, and Rifle Qualification Badge (Expert). For the sake of country and freedom he served, and unfortunately is suffering great injury and illness as a result. His most devastating injury is traumatic brain injury which is rated at 100% severe, permanent, and total. He also suffers from chronic and severe PTSD and a host of other debilitating mental health illnesses and physical ailments. The trauma of war affects him every day as he struggles to find the will to live.
 

Severe and chronic depression, anxiety, insomnia, hallucinations, severe impairments in – working memory, attention and concentration, asthma, chronic back pain, and headaches is just the short list of his ailments. Each day I fear for his well-being and do everything in my power to help him cope with the mental and physical anguish caused by the war. I provide consistent daily behavioral support and use grounding strategies to center him back into reality. I use physical intervention to keep him safe from injury as he battles through relentless ailments of the mind. I provide daily physical support as his body continues to fail him from the chronic physical pain which affects his activities of daily living; the most impacted being in the areas of mobility, dressing and bathing. I manage all medications, transport him to all his medical appointments and coordinate care with his PACT team as he has difficulty managing these tasks independently without constant assistance due to the severity of his impairments and mental health illnesses. I keep tasks structured, keep daily routines simple, minimize distractions, and change activities frequently as he gets easily agitated and frustrated. I do all this and much more to help him function within his new normal and to prevent him from detaching further from the world around him.
 

For the past 10 years I’ve worked with his VA medical providers to help improve his daily life, promote resiliency and independence. Although he has had little improvement over the years, I never give up hope for recovery. I remind him each day through my actions that he is never alone, and that I will be here for him through his darkest hours. For the last 3 years, since our approval in 2018, I was able to get additional assistance from the PCAFC to aid in his recovery efforts. This type of support was separate to what was available to me from his PACT team. The program provided me with additional resources, financial assistance, education, and training that would help me move the goalposts closer to his advantage. Unfortunately, this help was short lived after the legacy reassessment process and I was notified of our discharge this February of 2022. My veteran and I have and continue to meet all the PCAFC eligibility requirements substantiated by his medical records. The ultimate decision handed down from the CEAT to discharge us from the program was a blanket denial; unjustified based upon his medical history, notes and statements made by members of his PACT Team.
 

This decision of our discharge is solely based on the restrictiveness caused by the new regulation, the VA's harmful interpretation of clinical guidelines and by the method of how the veteran functional assessment is conducted. The veteran functional assessment is riddled with leading questions that solicit a particular response in favor of my husband not needing aid for a particular task or activity. Questions relevant to safety, protection, and instruction as it relates to veterans like my husband who suffer from TBI, PTSD and mental health illnesses were omitted. Notes cherry picked from his medical record which pertain to abilities he displays on his best day were included; aiding in the goal to find validity for my husband’s discharge from the program. This incomplete evidence entered into the functional assessment utterly ignores a significant portion of related medical evidence that supports his fundamental need for continued enrollment for the PCAFC. What is truly disappointing is the blatant errors and omissions in the functional assessment notes which were stated verbally and noted during the initial veteran assessment. These tactics used to discharge us and thousands of other veterans and caregivers from the PCAFC are unconscionable and egregious.
 

The new program restrictions and improper functional assessments are especially detrimental to veterans with invisible injuries. According to the Caregiver Support Program at the VA, 43% of denials are based on an “inability to perform an activity of daily living or a need for supervision, protection, or instruction” for a minimum of six months. This new rule disproportionately impacts caregivers like myself who care for veterans with severe mental health diagnoses and was strongly opposed by over 20 veteran service organizations. Completed reassessment data shows a discharge rate of 88-90% and this trend will undoubtedly rise as more legacy caregivers are reassessed within the coming months. The VA's egregious interpretation and implementation of these changes result in veterans and their caregivers being arbitrarily discharged, denied, or downgraded from the program without an extensive and unbiased review of their mental health records. Nationwide, there are 5.5 million Americans providing more than $14 billion of unpaid care for our wounded, ill, and injured warriors every year, an incredible cost that would otherwise be borne by the nation. Due to this, two-thirds of caregivers either cut back on their work or stop working altogether. The monthly stipend that is included with PCAFC enrollment helps caregiving families make ends meet and allow the caregiver to stay in the home with their veteran.
 

Caregivers are on the frontline of home health care every day. We enhance the veteran's ability to live safely at home with the dignity and respect they deserve. As a legacy caregiver, I ask my representatives and Congress to help by utilizing congressional oversight powers as Congress previously rejected any attempts to restrict eligibility into the VA Caregiver Program. I ask that regulation amendments be made and for the Secretary to right the wrongs for those who have been unjustifiably discharged, denied or downgraded during the application and reassessment process. I ask for my husband’s sake, my sake and for the sake of all military veterans and their families who are and who would continue to be affected by these injustices.