Stressed out caregiver

Wounded Times
Kathie Costos
October 3, 3023

If you are a caregiver, you deserve a superhero cape! In my case, the witch hat is more appropriate considering that is the way I feel most of the day.

I had to learn that taking care of my husband and 6-month-old puppy during most of the day has to include time for me to take care of myself. If I don't include myself on the to-do list then I won't be much good to those depending on me to do what they can't do for themselves. Top that off if, I'm cranky doing it, that won't help their mood or mine.

Choosing to put limits on what we do, and when we do it, is hard when we don't want to admit we're human and doing the best we can when they want it all! Our lives are on hold and that can be frustrating on top of everything else we have going on. 

For us, we're supposed to be enjoying retirement, or that's what I thought it was supposed to be like. What we were supposed to be and what we are are two totally different things. Figuring it out is a struggle.

The best advice I can give is to do what you can, when you can, as much as you can. Learn to let go of what you can't do. Make peace with it. Take time to do something you enjoy instead of trying to spend 24-7 taking care of everyone else. Breathe and, yes let out the grunt you're trying to hold in. If you can be sarcastic, that works for me too. (Okay, that works magic on my mood when I laugh at how impossible becomes possible.) It's also a lot better to spend the day without being a witch about all of it.

UPDATE

The post I put up proved that I am totally stressed out! I fixed it but what I regret most of all was leaving out one more thing that is vital to all caregivers. ASK FOR HELP WHEN YOU NEED IT! If we don't think we should need it, because we're the ones helping, remember everyone needs help. Even you!

2020 class of Dole Caregiver Fellows, advocates for caregivers of wounded veterans.

Father Caring For Wounded Veteran Daughter Earns National Honor

Patch.com
By D'Ann Lawrence White, Patch Staff
May 17, 2020

Joseph Narvaez has been named to the 2020 class of Dole Caregiver Fellows, advocates for caregivers of wounded veterans.

Joseph Narvaez became the primary caregiver for his wounded veteran daughter, Laura.

(Dole Caregivers Fellow)

CLEARWATER, FL — After his daughter suffered injuries while serving in the Air Force, including a traumatic brain injury from an improvised explosive device, Clearwater resident Joseph Narvaez stepped up to become her primary caregiver.

Now Narvaez is being honored for his commitment by being asked to join the 2020 class of Dole Caregiver Fellows.

The Fellows are 30 military and veteran caregivers who have been carefully selected from across the country to represent Americans caring for a wounded, ill or injured service members or veterans at home.

The role of these Fellows has never been more important as caregivers are under unprecedented stress due to the threat of the coronavirus, said Steve Schwab, CEO of the Elizabeth Dole Foundation based in Washington, D.C.

As a Dole Caregiver Fellow, Narvaez will serve as a leader, community organizer and advocate for the nation's 5.5 million military caregivers – the spouses, parents, family members and friends who provide more than $14 billion in voluntary care annually to someone who served.
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Older caregivers waited longer to matter...will wait even long according to GAO

VA’s $900 Million Caregiver Program Bogged Down by Bad Data, IT Issues, GAO Finds

Military.com
By Patricia Kime
17 Sep 2019

The VA missed a progress deadline on building the needed system on Oct. 1, 2018, and the department will not be able to certify the system by Oct. 1, 2019, as required by Congress. This means that caregivers of veterans from the Vietnam War and earlier will not be able to apply as expected starting Oct. 1.

In this March 31, 2015, file photo, the U.S. Department of Veterans Affairs Medical Center is shown in Portland, Oregon. (AP Photo/Don Ryan)

Inaccurate data kept by the Department of Veterans Affairs on its staff for the Family Caregiver Program and delays in the technology infrastructure needed to expand the program are hampering an effort to include the caregivers of injured veterans from World War II through Vietnam, a government watchdog agency has found.

The Government Accountability Office released a report Monday noting that the number of staff supporting the Family Caregiver Program at VA medical centers does not match the data kept by the program office -- an inaccuracy that prevents the VA from fully understanding the number of personnel that will be needed as the program grows.

The GAO also found that delays in implementing a new information technology system needed to support the program mean the expansion, mandated by Congress, is not expected for at least a year.

"The initial replacement for the Caregiver Application Tracker is not expected until late October 2019. Further, despite this initial deployment and additional releases expected through the summer of 2020, the department has not yet fully committed to a date by which it will certify that the new IT system fully supports the program," GAO analysts noted in the report.
read it here

Veteran lost caregiver because "no progress" made....he's a triple amputee

Veterans Urge Changes Before Expansion Of VA Caregivers Program

KSTX
By QUIL LAWRENCE
AUG 8, 2019

"I got a letter saying that I was out of the program because the veteran hasn't shown any progress since 2011," said Alicia. "I asked them, 'What do you mean by progress?' "

Matt shakes hands with members of the Warrior Games community after his race. "I got a letter saying that I was out of the [caregivers] program because the veteran hasn't shown any progress since 2011," Alicia said. "I asked them, 'What do you mean by progress?' " EVE EDELHEIT FOR NPR

There are times when retired Staff Sgt. Matt Lammers doesn't look like he needs anyone's help — like when he was competing, and winning, races at the Department of Defense Warrior Games in Tampa, Fla., this summer.

"We don't like to say the word 'can't' in our family," says Matt, who lost both his legs above the knee and his left arm to an explosion during his second deployment to Iraq in 2007.

Matt won medals at the games in Tampa for sitting volleyball, swimming and indoor rowing. At the end of the games, the U.S. Army gave him the "heart of the team" award. But he and his wife almost didn't attend, because they were short on cash to make the trip after Alicia was cut from the Department of Veterans Affairs' caregiver program last December because Matt had not "consistently engaged in treatment," according to a letter from the VA. Alicia had been Matt's official caregiver for most of eight years.

"It felt like a stab in the back, like what I do is not worth it in their opinion, like I'm not part of their team like I thought I was," she says.
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Veteran Affairs Medical Foster Home Program provides welcomed home

Indiana Family of 8 Takes In 3 Disabled War Veterans and Treats Them Like Family

Epoch Times
BY CHIARA CUI
April 26, 2019

Each veteran receives round-the-clock care and regular visits from licensed medical practitioners, including occupational therapists, doctors, and psychologists. The foster caregivers receive a stipend of $2,400 a month to take care of each veteran.

(L: Facebook | Sarah Rufing, R: YouTube Screenshot | CBS This Morning)

It takes a lot of patience to raise a family, and more so for a larger one. But for Sarah and Troy Rufing, who have six young kids, taking on three more people wasn’t a big deal. Except that the three people they fostered weren’t kids but elderly veterans with special needs.

The Rufings are among the 700 participants of The United States Department of Veteran Affairs Medical Foster Home Program, which “provides housing and care for more than 1,000 veterans in 42 states and Puerto Rico, serving as an alternative to nursing home care for those who cannot live safely on their own,” according to Military.com.

At their home in Greenville, Indiana, the Rufings’ family of eight members has expanded to 11 with the addition of Army Sgt. William Sutton, 53, Sgt. Charles Hughes, 87, and Army Cpl. Robert Schellenberg, 89. The three war heroes live in a three-bedroom wing attached to the main home.
read more here

Veterans Affairs Caregiver Selective "Support"

VA’s caregiver program losing top official at a critical moment

Military Times
By: Leo Shane III
March 20, 2019

The Veterans Affairs Caregiver Support Program is about to lose its top official as concerns mount about delays to a planned expansion of the benefit later this year.

Ida Malone checks on her husband, Navy Chief Petty Officer Averill Malone, before a training camp for the 2015 DoD Warrior Games at Ventura County Naval Station Port Hueneme in Oxnard, Calif. June 3, 2015. (EJ Hersom/Defense Department)

Department officials confirmed Tuesday that Meg Kabat, director of the program, will leave that post on April 3 “to pursue private-sector employment opportunities.” The move leaves another key leadership void at the department, although VA staff downplayed those concerns.

“The National Caregiver Support Program Office is staffed by dedicated and knowledgeable employees who will ensure the efforts Meg led continue without interruption,” Veterans Health Administration Chief of Staff Larry Connell said in a statement. “VA plans to name Meg’s replacement in the near future.”

The expansion could grant monthly stipends to more than 41,000 veteran families in coming years, more than doubling the current number of stipend recipients. Under legislation passed last summer, the department is scheduled to phase in the payouts over two years after the IT certification takes place.

Veterans groups have expressed alarm over current program operations, noting that staffing and support levels for the workload today aren’t enough.
read more here

Pre-9 11 disabled veteran families will have to keep waiting for Caregiver benefits?

Senators urge VA not to fumble expansion of caregiver benefits | Military update

Pensacola News Journal
Tom Philpott, Military Update
March 9, 2019

“At this point they have not responded to any of our inquiries,” said Murray in our interview. “They are not answering our questions. They are not telling us what they have in mind. So, we are doing everything we can to make this visible so they, if we have to, are embarrassed into it.”

Sen. Patty Murray (D-Wash.) says she is grateful to VA Secretary Robert Wilkie on behalf of thousands of caregivers of veterans who suffered severe physical or mental injuries while in service since the terrorist attacks of 9/11.

At Murray’s request, Wilkie last December ordered suspension of further downgrades or stoppage of caregiver benefits to current recipients until VA can attest that its health care facilities nationwide are running and resourcing the caregiver program consistently and as Congress intended.

On the other hand, Murray says, she and Democratic colleagues in the Senate are alarmed by other VA actions related to expansion of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) to older generations of severely injured veterans as Congress directed under last year’s VA Mission Act.

“VA continues to miss deadlines and not get it right,” Murray said in a phone interview Wednesday. “And we have got to make them step up to the plate and make this work.”

In a Feb. 28 letter to Wilkie, Murray and nine other Senate Democrats, including ranking members on veterans affairs and armed services, contend VA already is months behind in needed upgrades to information technology to begin to extend caregiver benefits to qualified veterans of the Vietnam and Korean War eras by Oct. 1, 2019, as Congress directed.

The letter also charges VA officials with a lack of transparency as they draft regulations to implement caregiver expansion, and criticizes some steps VA has said it wants to take to hold down future program costs, for example, by tightening access to caregiver benefits and changing methods for calculating caregiver stipends. The letter warns Wilkie that VA lacks authority to make some of the changes eyed without getting Congress to change in law.
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Looks like our generation will have to keep waiting.....

It is not OK for the VA to behave this way!

Veteran caregiver program cut by 80 percent this year in Tennessee

Nashville Tennessean
Yihyun Jeong
Dec. 21, 2018

The cuts are happening at VA medical centers across the country at a time when the program is supposed to be growing. Congress approved a major expansion with the Mission Act in May. But the VA missed its deadline in October to implement new technology.

The VA cut Master Sergeant Timothy Goad and his wife, Sarah Goad, from its caregiver program this year, citing that she was doing her "spousal duty." (Photo: Goad Family)

Master Sgt. Timothy Goad was on patrol in Iraq in an armored vehicle when it was struck by an IED blast in 2005.

The incident left him with a traumatic brain injury, 60 percent hearing loss and a vision disorder that makes his eyes unable to align properly.

Then just two months later, while on another patrol — 27 hours in — the Humvee in front of him was blown up by another improvised explosive device.

When Goad ran up to help, he found one soldier with a hand nearly taken off and another with a gaping wound to the abdomen.

There was a giant hole where the door had been and nothing else.

Goad went back to base where he had to tell the soldier’s twin brother he had died.

"He has survivor's guilt," his wife Sarah Goad said in an interview with USA TODAY NETWORK - Tennessee. "This is something major that he's had to deal with, wondering why he's still here."
read more here

And yet, on the same day this was reported by Military.com

VA Suspends All Discharges from Caregiver Program

Military.com
By Patricia Kime
21 Dec 2018

A VA Office of Inspector General investigation into the program uncovered poor management oversight that resulted in the Veterans Health Administration paying $4.8 million to caregivers of veterans who weren't eligible for the program.

The Department of Veterans Affairs on Friday announced it would temporarily stop discharging veterans from a program that provides compensation and benefits to family members who take care of them.

In a release announcing the suspension of discharges from the Comprehensive Assistance for Family Caregivers program, the VA said it was halting dismissals because of "continued concerns expressed by veterans, caregivers and advocates about inconsistent application of eligibility requirements by VA medical centers" of the program.
read more here

Veterans kept their promise when they served their time with their lives on the line. Why would the VA think it was OK to behave this way because the veteran ended up disabled in the process of serving their end of the deal?

Share Your Thoughts On New Caregiver Act

Department of Veterans Affairs wants to know what we think about the new Caregiver Act

Request for Information

Through this notice, we are soliciting information on certain changes made to PCAFC by the MISSION Act. We ask respondents to address the following questions, where possible, in the context of the discussion in this document. Commenters do not need to address every question and should focus on those that relate to their expertise or perspectives. To the extent possible, please clearly indicate which question(s) you address in your response. As previously mentioned, responses to this request will inform our updates to PCAFC.

Accordingly, we request comments on the following:

1. How should VA define “a need for regular or extensive instruction or supervision” in the new 38 U.S.C. 1720G(a)(2)(C)(iii)?

a. Should this be based upon frequency of intervention needed by the veteran or level of complexity of intervention? Should this be based upon the impact to the veteran if such instruction or supervision is not provided? If so, how should this be measured?

b. What constitutes “regular” instruction or supervision?

c. What constitutes “extensive” instruction or supervision?

2. How does “a need for regular or extensive instruction or supervision without which the ability of the veteran to function in daily life would be seriously impaired” differ from “a need for supervision or protection based on symptoms of residuals of neurological or other impairment or injury?”

a. How should VA define and assess “a need for supervision or protection based on symptoms of residuals of neurological or other impairment or injury”?

b. Are there established standards VA should model?

3. How should VA assess whether the ability of the veteran to function in daily life would be seriously impaired without regular or extensive instruction or supervision?

a. Are there existing tools or assessments that could be used?

b. How should “seriously impaired” be defined?

i. For example, should there be a standard of time in which a veteran is expected to be able to function without the need for a caregiver, and once that period of time is exceeded, a need for a caregiver is required due to the impairment of the veteran? Is there a minimum period of time lapse that a veteran should be expected to be able to function and upon exceeding that time, might meet this eligibility criterion?

ii. Are there standards that should or could be used to determine when a veteran's ability to function in daily life is considered seriously impaired without regular or extensive instruction or supervision?

iii. How should “ability to function in daily life” be defined?

4. What specific financial planning services relating to the needs of injured veterans and their caregivers should be made available to primary family caregivers under the new 38 U.S.C. 1720G(a)(3)(A)(ii)(VI)(aa)?

a. Should entities provide these services for free?

b. Are there specific financial planning services that should be excluded?

c. How should these services be made available and/or delivered? Should these be provided in person, online, and/or via telephone?

d. Should there be a limit as to how many times a primary family caregiver has access to these services? If yes, should it be an annual limit or lifetime limit? Should it be limited by some other measure?

e. What types of private organizations provide these services?Start Printed Page 60968

i. What services do they provide?

ii. How are the services provided?

iii. Do these organizations provide these services for free?

iv. Do these organizations contract with other entities to provide these services? Do these organizations receive grants to provide these services?

f. What other Federal/state/local agencies offer these services?

i. What services do they provide?

ii. How are the services provided?

iii. Do these agencies provide these services for free?

iv. Do these agencies contract with other entities to provide these services? Do these agencies receive grants to provide these services?

5. What specific legal services relating to the needs of injured veterans and their caregivers should be made available to primary family caregivers under the new 38 U.S.C. 1720G(a)(3)(A)(ii)(VI)(bb)?

a. Should entities provide these services for free?

b. Are there specific legal services that should be excluded?

c. How should these services be made available? Should these be provided in person, online, and/or via telephone?

d. Should there be a limit as to how many times a primary family caregiver has access to these services? If yes, should it be an annual limit or lifetime limit? Should it be limited by some other measure?

e. What types of private organizations provide these services?

i. What services do they provide?

ii. How are the services provided?

iii. Do these organizations provide these services for free?

iv. Do these organizations contract with other entities to provide these services? Do these organizations receive grants to provide these services?

f. What other Federal/state/local agencies offer these services?

i. What services do they provide?

ii. How are the services provided?

iii. Do these agencies provide these services for free?

iv. Do these agencies contract with other entities to provide these services? Do these organizations receive grants to provide these services?

Paperwork Reduction Act

This request for information constitutes a general solicitation of public comments as stated in the implementing regulations of the Paperwork Reduction Act of 1995 at 5 CFR 1320.3(h)(4). Therefore, this request for information does not impose information collection requirements (i.e., reporting, record keeping or third-party disclosure requirements). Consequently, there is no need for review by the Office of Management and Budget under the authority of the Paperwork Reduction Act of 1995 (44 U.S.C. 3501 et seq.).

Signing Authority

The Secretary of Veterans Affairs approved this document and authorized the undersigned to sign and submit the document to the Office of the Federal Register for publication electronically as an official document of the Department of Veterans Affairs. Robert L. Wilkie, Secretary, Department of Veterans Affairs, approved this document on November 19, 2018, for publication.

Dated: November 19, 2018.

Jeffrey M. Martin,

Assistant Director, Office of Regulation Policy and Management, Office of the Secretary, Department of Veterans Affairs.

[FR Doc. 2018-25763 Filed 11-26-18; 8:45 am]

Do you think Congress should have figured all this out ahead of time?

Caring for triple amputee "part of spousal duty" to VA?

Nashville VA reinstates triple amputee veteran's full-time caregiver services after Tennessean report

Nashville Tennessean
Yihyun Jeong
Nov. 21, 2018

A triple amputee veteran will have his full-time caregiver services reinstated after the Tennessean reported Wednesday that the Nashville VA initially decided to deny the level of his caregiver's benefits.

Staff Sergeant J.D. Williams lost his right arm and both legs while deployed with the 101st Airborne Division in Afghanistan in 2010.

He was discharged and sent home, where his wife, Ashlee Williams, was assigned and paid by the VA to be his caregiver.

But after six years, she wrote on Facebook on Nov. 17, the VA decided to lower her husband to the lowest tier of the program, determining that he no longer needs a full-time caregiver.

She claimed that the VA assumed that the care she provided her husband, including helping her husband with applying prosthetics and lifting him into a wheelchair about 10 times a day, was part of her "spousal duty."

"...should have been included on the marriage certificate according to the VA," Ashlee Williams wrote in a post that was shared more than 25,000 times on Facebook by Wednesday morning.
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Soldiers on the Water trip included caregivers

It's about me
North West Florida Daily News
By Kaylin Parker
Posted Sep 15, 2018

“One of the reasons that made me do it that very first time I did it, someone said, ‘it’s about me,’ and I get that all the time,” Morgan said. “It wasn’t a show. It wasn’t a pity party. It was about me, and that means something.”

Members of the Emerald Coast Association of Realtors team bring fish to the weigh scales during the 6th Annual Soldiers on the Water deep sea fishing event. Michael Snyder Daily News

DESTIN — Combat wounded troops, caregivers, service dogs and active-duty military were among the large crowd on hand Saturday for the 6th Annual Soldiers on the Water event hosted by the Emerald Coast Association of Realtors.

Natalie Sayles, who lives in Atlanta, has been coming for three years. She served as an Army combat medic for 17 years and was medically discharged in 2012 after breaking both her legs during training.

Sayles said she enjoys the “camaraderie” among the veterans.

“I’ve been fortunate enough to take care of myself medically, so I like to try to extend that favor ... through conversation, through talking,” Sayles said.

Soldiers on the Water features a free fishing trip for veterans or active-duty troops who have combat-related injuries.
read more here

When will Vietnam veterans stop being worth less?

On a personal note, Donna and Denny belong to the same Chapter of the DAV as we do, Chapter 16 Orlando. 

They are part of the generation who ended up being told we are worth less than the newer generations. The other problem is, it also means that Gulf War, Korean War and remaining WWII generations are also worth less.

Donna and Denny, along with the DAV, fight for all generations of disabled veterans and that is the way it should be. If you want to know where almost everything known on PTSD came from, that was also the DAV when they commissioned the research on The Forgotten Warrior Project! Ironic that we are still forgotten!


Why Are Vietnam Vets, Families Still Waiting for VA Caregiver Benefits?
Military.com
By Richard Sisk
8 Jul 2018

"Just look at the Vietnam veterans, the way they were treated. There's a lot of guilt there," said Meyer, who lost his right leg above the knee and the thumb, index finger and middle finger of his right hand to an improvised explosive device in Afghanistan.

Disabled Vietnam War veteran Bill Czyzewski joins about 150 other disabled veterans in a 2016 cycling event at Gettysburg, Pa. Although Congress passed a bill to provide benefits for caregivers of such veterans, about $55 billion in funding must be found. (DoD photo/EJ Hersom).

"I just think it's very unfair, the inequity of it all. You give up so much," Donna Joyner said of the wall put up by Congress at the Department of Veterans Affairs that has separated one generation of family caregivers to disabled veterans from another.

Joyner, the wife and caregiver to her husband, triple amputee Vietnam veteran Dennis Joyner, has been among the thousands who are ineligible for training and modest stipends under the VA Comprehensive Assistance for Family Caregivers program that was limited to post-9/11 veterans by a law passed in 2010.

On June 6, President Donald Trump signed the VA Maintaining Systems and Strengthening Integrated Outside Networks Act, or VA Mission Act, which was primarily aimed at expanding private health care options through the VA.

As part of the Mission Act, the caregivers program was expanded to eliminate the 9/11 limitation in stages and eventually extend the benefit to veterans of all eras.

The first expansion would go to caregivers of veterans who suffered severe, service-connected wounds or injuries before May 1975, when the Vietnam War ended for the U.S.
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PTSD Veteran sexual abuse made worse under Caregiver program

Sexually abused veteran raises new questions about VA caregiver program
WJHL News
By: Nate Morabito
Updated: May 25, 2018

JOHNSON CITY, TN (WJHL) - A Johnson City woman's experience with Mountain Home VA raises more questions about a Veterans Affairs program already under scrutiny.

The VA's caregiver program pays family members to care for post-9/11 veterans with catastrophic injuries. Kim Coble is one of those veterans. She is a victim of military sexual trauma, according to medical records.

As a result, her husband is paid by the VA to take care of the Army veteran, but both say her mental illness only worsened once they entered the program at Mountain Home last year.

"I was really devastated emotionally," Coble said when we interviewed her on March 9. "I just wanted to end my life."

Those words would haunt her in the coming months.

Lawmakers created the VA caregiver program years ago without clear guidelines in Congressman Phil Roe's view. The House Veterans Affairs Committee Chairman (R), TN-District 1, said Congress gave each VA facility too much leeway initially.

"It's being looked at," Rep. Roe said of the increased oversight the program is now receiving. "We need to paint the white lines on the road for it, so this is how you do this."

"It makes us feel like we can't make a difference," Martin said. "Nobody's going to listen. Nobody cares." 

"That makes me feel very hopeless and helpless," Coble said. 

In the days after that meeting, the veteran said she attempted suicide. 

"I just went very numb and I tried to kill myself," she said. "I took almost a whole bottle of pills." 

Doctors have since treated and released Coble following her suicide attempt.

read more here

Senate Finally Does Something For Pre-9-11 Families?

Senate panel advances $3.4 billion plan to dramatically expand benefits for veterans' caregivers

The Washington Post

Emily Wx-Thibodeaux

December 1, 2017

"That means his wife would get the latest training on how to help her husband, paid time off to take a break and a stipend to make up for all of her years of lost income."

For 20 years, Yvonne Riley has cared for her husband, Dave, a medically retired Coast Guard rescue swimmer who became a quadruple amputee after a bacterial infection turned into sepsis two decades ago.

David W. Riley, a medically retired Coast Guard rescue swimmer, is a quadruple amputee. He says expansion of the Caregivers Act would help his wife care for him and allow them to pay for training and breaks. (Photo courtesy of the Riley family)

With three young children at home, Yvonne quit a good job to bathe him, get him in and out of his wheelchair, feed him, help him when he fell out of bed and eventually help him put on and remove his prosthetic limbs.

“To this day, she puts me together in the morning. She takes me apart at night,” Riley said in a telephone interview from their family home in Semmes, Ala. “It’s a full-time job. But she’s never gotten paid or training.”

That’s because the Department of Veterans Affairs only offers stipends, training, paid breaks and other benefits to the caregivers of post-9/11 veterans through a program passed in 2010. But the Riley family and thousands of others say they are hopeful that soon will change.

A proposed $3.4 billion in federal funding over the next five years would extend caregivers’ benefits to family and friends performing full-time care for veterans of all eras.

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Linked from The Gazette