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  • Alzheimer Caregiver

     

    Holidays can be meaningful, enriching times for both the person with Alzheimer’s disease and his or her family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with Alzheimer’s, this link with a familiar past is reassuring.

    However, when celebrations, special events, or holidays include many people, this can cause confusion and anxiety for a person with Alzheimer’s. He or she may find some situations easier and more pleasurable than others. The tips below can help you and the person with Alzheimer’s visit and reconnect with family, friends, and neighbors during holidays.

    Finding the Right Balance

    Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy.

    Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of the person with Alzheimer’s disease:

    • Celebrate holidays that are important to you. Include the person with Alzheimer’s as much as possible.
    • Set your own limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
    • Involve the person with Alzheimer’s in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.
    • Consider simplifying your holidays around the home. For example, rather than cooking an elaborate dinner, invite family and friends for a potluck. Instead of elaborate decorations, consider choosing a few select items.
    • Encourage friends and family to visit even if it’s difficult. Limit the number of visitors at any one time, or have a few people visit quietly with the person in a separate room. Plan visits when the person usually is at his or her best.
    • Prepare quiet distractions to use, such as a family photo album, if the person with Alzheimer’s becomes upset or overstimulated.
    • Make sure there is a space where the person can rest when he or she goes to larger gatherings.
    • Try to avoid situations that may confuse or frustrate the person with Alzheimer’s, such as crowds, changes in routine, and strange places. Also try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol).
    • Find time for holiday activities you like to do. If you receive invitations to celebrations that the person with Alzheimer’s cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.

    Preparing Guests

    Explain to guests that the person with Alzheimer’s disease does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontinence, eating food with fingers, wandering, or hallucinations.

    If this is the first visit since the person with Alzheimer’s became severely impaired, tell guests that the visit may be painful. The memory-impaired person may not remember guests’ names or relationships but can still enjoy their company.

    • Explain that memory loss is the result of the disease and is not intentional.
    • Stress that the meaningfulness of the moment together matters more than what the person remembers.

    Preparing the Person with Alzheimer’s

    Here are some tips to help the person with Alzheimer’s disease get ready for visitors:

    • Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.
    • Arrange a phone call for the person with Alzheimer’s and the visitor. The call gives the visitor an idea of what to expect and gives the person with Alzheimer’s an opportunity to become familiar with the visitor.
    • Keep the memory-impaired person’s routine as close to normal as possible.
    • During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest.

    For More Information About Holidays and Alzheimer's

     

    NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center

    1-800-438-4380 (toll-free)

    This email address is being protected from spambots. You need JavaScript enabled to view it.

    www.nia.nih.gov/alzheimers

    The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

    Source

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  • Afghan Vet

     

    As a caregiver of a catastrophically disabled Veteran, I'm in a lifelong battle to support my husband. Too often, the VA forces me into battle alone.

    Eight years ago, my husband stepped on an improvised explosive device in Afghanistan. He lost his left leg and much of his left arm, and barely survived.

    Mike's war was over. But mine would be fought on the home front. I was going to have to battle for him.

    Sometimes that battle takes place in the hospital, as I help my husband through another surgery — 119 and counting. Sometimes it's in our home, as I try to juggle three young kids, a plumbing issue and a health care bill, all while trying not to burn dinner.

    Caregivers like me are supporting catastrophically wounded Veterans all over the country. All too often, we're carrying out that mission alone, with insufficient help from the very government that sent our husbands, wives, sons and daughters off to war. My husband proudly volunteered to serve and wanted to go to the front lines. Never did we think that the greatest fight would occur once he came home.

    An army of caregivers on the home front

    Our nation — federal officials and civilians alike — must take more concrete action to care for Veterans and their families.

    As many as 5.5 million caregivers struggle to care for disabled Veterans like my husband. These wounded warriors, especially the catastrophically disabled, need round-the-clock assistance because they have a hard time completing the tasks associated with daily living — such as going to the bathroom or getting out of bed.

    In our case, my husband needs assistance to complete all his daily tasks, from dressing, to getting cleaned and ready, to planning the day. Every day, I am constantly thinking for two people.

    Catastrophically wounded Vets also require lots of medical care. In addition to his surgeries, my husband has gone through years of speech, visual, physical and occupational therapy.

    The Department of Veterans Affairs offers caregivers support for coordinating these services as well as a stipend. Caregivers could receive $7,800 to $30,000 in any given year. To calculate caregiver stipends, the VA looks at a typical home health aide's hourly wage in a Veteran's geographic location, as well as the number of hours of care that Veteran needs. The VA caps the hours of care at 40 per week.

    That's almost insulting. I am a caregiver every second of every day. One-fifth of caregivers report caring for their Veterans 80 hours a week.

    Securing caregiver status can be a nightmare. VA guidelines dictate that the maximum wait for approval should be 45 days. But according to a recent investigation from the Office of Inspector General at the VA, more than half of Veteran caregivers wait three to six months. One West Virginia couple waited almost three years for approval.

    The VA has also been known to drop caregivers from support programs without explanation. Between 2014 and 2017, the Seattle and South Texas VAs cut the number of caregivers they recognized by almost 50 percent. Portland, Oregon, made a 66 percent cut. The VA in Charleston, South Carolina, reduced the number of caregivers supported by 94 percent — from about 200 to 11.

    VA's caregiver red tape needs reform

    Fortunately, federal officials are beginning to take action. As part of the recently passed VA MISSION Act, Congress will expand caregiver support to all Veterans — not just those injured after 9/11.

    But there's more to be done. The VA must approve applications for official caregiver status more quickly and better tailor its resources to the neediest families, especially those of catastrophically disabled Vets.

    One concrete thing the VA can do is give family members of catastrophically wounded Veterans a permanent caregiver designation. Today, in order to maintain caregiver status, I am re-evaluated every single year to make sure that Mike still has his injuries and still requires a caregiver — as though amputated limbs could somehow grow back.

    Further, every three months, in the midst of an already hectic life, I have to speak to my caregiver coordinator to check in and comply or risk being dropped from the program.

    Any casual observer can see that my battle is lifelong. The VA shouldn't need periodic check-ins to make sure of that.

    There's a role for the average civilian, too. My advice? Don't ask how you can help — just do it. Help with transport for Veterans, bring over a home-cooked meal, or drop off basic essentials — caregivers are in survival mode and receiving help without having to ask for it is the biggest gift. Search for nonprofits in your area that can help you connect with local Veterans and caregivers.

    My husband paid a huge price in service of his country. It is the honor of my lifetime to take care of him. But the caregivers now waging the war at home must be remembered, too.

    Source

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  • JD Williams

     

    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.

    Williams wrote in a separate post that while she still has caregiver designation, being dropped to the lowest tier in the program has been a "pattern" she has seen in other VA caregiver cases.

    "I'm just a minuscule part of this MUCH Larger problem," she wrote.

    Nashville VA is part of the Tennessee Valley Healthcare System. When asked by the Tennessean to comment on the case, the VA said they will reverse their action Wednesday.

    "In this case, the reassessment process was handled incorrectly, and VA is taking steps today to reinstate Mr. Williams’ caregiver benefits to their original level," said Chris Vadnais, a TVHS spokesman.

    He said Williams' occupational therapy assessment responses were not fully considered by the team assessing his benefits, leading to an "improper reduction."

    "The goal of all VA health care programs is to help Veterans achieve their highest level of health, quality of life and independence," said Vadnais.

    The Williams did not respond to requests for comment.

    Caregiver details the VA's process

    According to Ashlee Williams, when a caregiver is dropped to the lowest tier, they're given an opportunity to appeal. But the appeal is reviewed by the same clinical eligibility team that made the decision to change caregivers' status, and the appeals are most often denied.

    Then the caregiver is removed.

    The practice of dropping the caregiver's to a lower tier before the appeal and dismissal helps ensure the VA pays the cheapest rate, Williams said.

    "The VA now only has to pay them the 3 months at the lower tier. It is a SIGNIFICANT difference," she wrote. "THIS is why I'm speaking out. No-one deserves this. I will appeal my decision to be lowered and fight for every other caregiver going through this too."

    Williams noted that she had made six attempts to reach the VA Caregiver Support Coordinator on Friday before posting, but ultimately went public due to the VA’s inaction.

    An OB-GYN at the VA hospital made the decision, according to her post.

    Vadnais said the provider was a primary care physician who works in a women's clinic, not an OB-GYN.

    VA to establish clearer assessment

    The VA MISSION Act gives the VA the ability to make these changes to participants of the Program of Comprehensive Assistance for Family Caregivers, while expanding the program to those who care for Veterans.

    The VA, Vadnais said, periodically reassesses participants to ensure that Veterans and caregivers have everything they need to continue progressing toward improved health and wellness.

    "Eligibility for VA’s caregivers program is complex, and determinations are often made by multidisciplinary teams, including primary care doctors, rehab professionals and mental health clinicians," he said.

    The VA, he said, is working to establish clearer, more objective eligibility criteria for consistency in these determinations.

    "In the meantime, VA is ensuring that all facilities understand better how to differentiate Veterans undergoing positive changes in their needs and capabilities from those who require a consistent or greater level of care," he said.

    'A hundred ways I could have died'

    J.D. Williams was on his second tour in Afghanistan when he led a small six-person team into a village "that had a great deal of resistance," he wrote in a blog post for Retiring Your Boots.

    As they approached, an IED detonated directly beneath him.

    "My whole life started flashing through my head and I could feel an ice-cold tingling sensation all over my body," he wrote.

    When he checked himself for injuries, he saw that his right arm and legs were gone.

    "I (laid) back down and started thinking about life. Chaos going on all around me, I’m laid there thinking I may never see my family, friends, or Montana ever again," he wrote.

    Williams said his team risked their own lives to get him to safety and get him a medical evacuation within 20 minutes, all while exchanging gunfire with the Taliban.

    "As soldiers, we faced the horrors of war and never backed down... I take pride in our country and the brave men and women who defend it. I can honestly say that I would do it all again. I can think of a hundred ways I could have died the day I stepped on that IED but I’m here and I’m extremely thankful for that," he wrote.

    Source

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  • Natl Family Caregiver Month

     

    The U.S. Department of Veterans Affairs (VA) is commemorating National Family Caregivers Month this November by honoring the service of 5.5 million family members and friends who have dedicated their lives to providing much-needed care for chronically ill, injured or disabled Veterans.

    “Caregivers make tremendous sacrifices to address the daily needs of Veterans who served our nation,” said VA Secretary Robert Wilkie. “These mothers, wives, fathers, husbands and other loved ones deserve our recognition and support for all they do to care for Veterans.”

    Caregivers provide a valuable service to Veterans by assisting them beyond the walls of VA medical facilities with much-needed support, such as accessing the health care system, providing emotional and physical support and enabling many injured Veterans to stay in their homes, rather than living their lives in an institutional setting.

    The recent passage of the VA MISSION Act of 2018 will expand eligibility for VA’s Program of Comprehensive Assistance for Family Caregivers to Veterans of all eras of service — fulfilling President Trump’s commitment to help Veterans and their families live healthy and fulfilling lives.

    The expansion will occur in two phases, starting with eligible Veterans who incurred or aggravated a serious injury in the line of duty on or before May 7, 1975, with further expansion to follow.

    Currently, VA is developing an implementation plan for the MISSION Act and encourages all caregivers and Veterans to learn about the Program of Comprehensive Assistance for Family Caregivers, as well as the many additional resources already available to all caregivers by visiting www.caregiver.va.gov or by calling the Caregiver Support Line toll free at 855-260-3274.

    Source

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  • Comment

     

    Today the U.S. Department of Veterans Affairs (VA) announced it is seeking public comments on how it can further strengthen and improve caregiver support through the Program of Comprehensive Assistance for Family Caregivers (PCAFC).

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