Monday, December 19, 2011
Tuesday, December 13, 2011
Thursday, December 8, 2011
Friday, November 11, 2011
Friday, November 4, 2011
Here is the promised CBS News video of our treasured friend and her daughter:
Please spread the word so that Caregivers' needs and challenges are better understood!
Wednesday, October 26, 2011
We send you a rallying call today: keep sharing the vital role of Caregivers in the Continuum of Care!
We never use those words glibly: Continuum of Care. Caregivers know it is by their actions and commitment that compassionate care supports our brave injured, ill, or wounded troops. We know that you are the essential backbone of that care, and that your crucial role is often overlooked.
Thursday, October 13, 2011
Yesterday I had the opportunity to talk to an influential group about the value of peer networks for suicide prevention. It's readily apparent that the integrity of any support program is demonstrated with building trust in every interaction. It was a relief to share your thoughts (provided to me over time) and perceptions of the official tools and processes in place. My hope is that there was greater understanding following the meeting.
It's sometimes possible to feel alienated from leadership because of well-meaning gatekeepers. Provided the opportunity to share directly with leadership was refreshing -- and daunting. We are not clinicians, but we DO care and support. And, you've proven time and time again, that helping others helps you. I know it does for me. We now have more tools in place, and also an agreement with the Veterans Crisis Line to provide a "warm transfer" should you wish help in placing that call on your own. We're with you!
Regarding my blog post of last week about a caregiver outreach piece, the piece has been delayed and I will have it for you next week. Once I receive a copy, you will have it first thereafter!
Make it a good week, and When In Doubt, Reach Out!
Wednesday, October 5, 2011
This posting is very brief, but I wanted to highlight a quality that we have seen exemplified on VeteranCaregiver over and over again: Courage.
- Courage is the integrity to continue your caregiving mission though it often seems no one cares or notices.
- Courage means putting one foot in front of the other even when you question whether you have the strength.
- Courage is picking up the phone to leave yet another message, though you're unsure it will be acknowledged or returned.
- Courage is pressing past the bureaucracy or pettiness of perceived power.
- Courage is researching, questioning, seeking the best possible care for your veteran or warrior.
- Courage is fighting through the brain fog to think and reason.
- Courage is reaching out and asking for help. For support. For solace.
- Courage is knowing that you and your veteran matter -- and that others know your heart.
We are honored to be among Caregivers, Veterans, and Wounded Warriors who exemplify Courage.
Hold tight to your Courage, because on Friday, you will have a voice through one of our Caregivers on a national scale. We think you'll be very proud of your fellow Caregiver, and the opportunity to be heard. The veil of invisibility will lift, and your cause will be known.
Stay tuned, and blessings to the men and women of Courage!
Monday, September 19, 2011
Through all the summer turmoil of torrid heat, tornadoes, floods, earthquakes, and a hurricane, and personal crises too numerous to mention individually, we now arrive in September, or Suicide Prevention Month. What does this really mean?
All too well, we know that Suicide Prevention is a constant and active choice. It happens hour by hour, day by day, by those who care. So many studies now affirm that caring peers and friends can help others to choose life over the very final decision to take their own lives. Nearly all in this VCG Community can attest to the day a VCG Hug arrived at a crucial moment, someone took the time to reach out when silence was noted, and a call or email was sent or received that lifted spirits and made you feel cared for and about. With crisis, depression, or fear -- a caring word or thought can change an otherwise desperate outcome.
There are many, many official tools in place: suicide hotlines, crisis helplines, online chat, and service branch programs. Valuable tools with the emphasis on the person in crisis taking that first step. Other programs permit friends and families to identify and encourage obtaining help. Yet, what about the simple act of situational awareness and realizing that you haven't seen or heard a word from "Jane" online/offline in a few days? The gentle proactive outreach that says "I noticed you've been quiet; are you alright?" There are countless occasions that accomplished the miraculous - this online community cares, and it shows.
Bob Delaney's new book, "Surviving the Shadows" speaks of peer support as the most powerful tool available following trauma or crisis. We agree wholeheartedly. So, as this September enlightens many to greater awareness of noticing or identifying anguish, depression, and suicidal thoughts, please know and appreciate how YOU hold each other up, lift spirits, and give hope to those that feel or felt hopeless.
Let's keep on caring, and reaching out to each other - you might matter to someone else more than you'll ever know... We care and it shows!
When in doubt - reach out!
Blessings and thanks,
Sunday, September 18, 2011
Many who have made a complaint have been retaliated against. They have received even less care, have been told they are lying or that they are causing the problem. Entries are made in medical records which is difficult if not impossible to have removed. All of this allows the VA to put the blame on the patient or the caregiver and frees them from the necessity of dealing with the problem.
On the other hand, if we do not make a genuine complaint, we are left dealing with the fall-out of the lack of care. As usual, it is often the caregiver who deals with fall-out, which adds another layer of burden to a person who is already burdened beyond belief.
No matter how politely we make our complaint, no matter how much we follow protocol, no matter who we talk with and no matter how many people promise things will change, they rarely do for the better. The VA and the level of care appears to be in a downward spiral. As the current deployments come to an end, and our troops return, the pressure on the VA facilities will increase. In my opinion the level of care will decrease with the increase in patient load.
I have no answer for the issue of complaints, as it is a double edged sword. Every family must make a decision based on their circumstances and knowledge. No one should be penalized for complaining about lack of appropriate care, no one should be treated with disrespect because they do not fit the on-size-fits-all that the VA protocols are written for. What I do know is that this is an extremely unfair burden to place on both Veterans and those that care for them.
Thursday, August 18, 2011
If actions speak louder than words, it appears the road ahead is rocky indeed. However, there IS hope if we persist in idea exchange and candid communication.
In this context, The Shrug is the non-verbal equivalent of "whatever". Every example below comes directly from VCG families. Do you recognize any of the following examples of The Shrug as you've traveled the Care Continuum?
You're a caregiver for an active duty service member (DoD side) and after a year, you don't have a stable Triad, you are chastised for missing appointments you didn't know about, and you work to dress your soldier with severe pain and depression for morning formation, and when you ask why? Shrug.
As the Caregiver, you're moving into the rehabilitation phase of the service member's injury. You have no Comprehensive Care Plan, your daily load is very heavy, and you're living at the hospital/medical center with your spouse, adult child, sibling. You may be a single service member and you lack a Caregiver to advocate for you and your visible and invisible injuries. Both of you ask for help or resources that don't function as the brochure, website, or briefing said they would. Shrug.
As the Caregiver, you're trying to make ends meet, you've lost your job (by email), the household bills don't stop, and you're full-time caregiving while living away from the home you're trying to keep, children who need to start school in a week, and you ask for assistance. Very little exists unless you fit a particular set of circumstances for a specific NPO. Shrug. If you are in the DC area, also get ready to move with your service member to a new facility where you begin anew and now need to carry a map along with the new staff. Shrug.
As the Caregiver, you're finally home and in the VA system, your Vet has serious medical and emotional conditions and you know you cannot work, nor are you finding it smoother to communicate with the new medical professionals at the VA Medical Center. You're still requesting a Comprehensive Care Plan... You are now an expert at leaving voicemail and writing succinct emails. Shrug. The bills continue to mount, the ratings and funds are greatly delayed, your family wonders why you put up with your spouse or child's now-unfiltered behavior (PTSD/TBI), and your neighbors forgot you after the welcome home cookout. Shrug.
As the Caregiver, you're home after a serious suicide attempt by your Vet, you have sheltered your children or other family, but now those invisible wounds of war are exposed -- and you're really very scared and scarred yourself. Your calls to various coordinators are not returned for many days and when they are, they are either unable to assist or cannot until/unless you fill out more or duplicative paperwork. HIPAA is used as a barrier when you hold the medical and general POA's for your Vet. The helplines you call refer you to your local facilities, but you've already been down that road, or why would you call them? Shrug.
Continuing on, your Veteran is angry and depressed at the caregiving toll on you. Or, the Vet could also be angry with you for not making their world what it once was. (BTW, no one could ever fit in those tight shoes...) Personal counseling is impossible to schedule with your caregiving responsibilities, though you now feel as though you have secondary PTSD/anxiety/depression. Your world is closing in on you and you're merely coping, numb, or ready to quit. You have enlisted a good VSO, your state Dept. of VA, and your U.S. Senator and Congressman, and the machinations still go in a circle. You are adrift, feel overwhelmed, a wee bit furious, and very, very exhausted. Shrugs aplenty.
You're a single Veteran and you have done your level best to find a way to quietly obtain information, care, and resume your life to the best of your ability. You advocate for yourself and you feel isolated and forgotten. You may have experienced MST, homelessness, loss of your buddies, your ability to return to work or school, and you aren't sure who you really are anymore. Unreturned calls, ignored pleas for help, and a shrunken world only reinforce your perception of being "disposable". Shrug?
Most of life's successes result from great communication. So too the worst failures.
Let's replace The Shrug with respectful, two-way communication and understanding, shall we? With open minds, logic, and compassionate care, this change is very possible. Here's working toward that change together!
Friday, August 5, 2011
I'd like to draw your attention to the upcoming move of the medical facilities from Walter Reed to the new Bethesda and Ft. Belvoir facilities later this month. This week we met with a number of families who are dealing with grueling recoveries, financial situations, emotional upheaval, and now have a difficult relocation to manage.
While new improved quarters are looked forward to, the preparations and the communication over the move has been challenging for these families. As many of you will remember from the early days of wounded recovery, your focus was on your service member. So too is theirs. Please keep these Caregivers (or NMA's, Non-Medical Attendants) in your thoughts and prayers while this is experience is still raw and fresh in their minds. While change is inevitable in this case, it is also frightening and disconcerting to the injured service member - and an added burden to the Caregiver.
Thankfully, Caregivers continue to support Caregivers, and if communication and education is accomplished on the DoD side of the continuum of care, entering the huge VA system of care is somewhat smoother. We are working hard to provide help to Wounded Warrior families at Walter Reed, and you've probably noticed that VCG is attracting active duty families to our ranks as well as veterans. Our goal is to divide VCG into a sister entity called WarriorCare to address these two major phases of care in the near future. Thank you for welcoming all in our midst, for our goal is to educate, advocate, coordinate, and navigate the various phases of the continuum of care with you.
Tuesday, August 2, 2011
A very special member of our VeteranCareGiver community has just launched a personal blog about caregiving for those with TBI. It does not matter whether you are a spouse, parent, friend, or other family member, chances are good that you will identify with many of Annette's observations. You may find the blog at www.spouseoftbiveteran.blogspot.com. Annette also has a very poignant video on the homepage of VCG and we applaud her efforts to support and spread awareness of the challenges of caregiving for the invisible injuries of TBI and PTSD.
Thursday, July 28, 2011
"A temperature of 103.5? Well, ride it out at home! "
" What if it goes to 105?"
"Ride it out at home"
"What about 107?"
"You would be dead"
"I am the only PIK line person for 7 floors and the outpatients. I have already worked 11 hours with no overtime pay. I still have patients to see…"
"You need to move nearer the VAMC"
"Sorry we can't get a line in. Come back next Tuesday.."
"Yes, this is the crisis line. I am going to give you another number to call"
You will need to drive 180 miles, six days per week for your pain medication.
"The ambulance is just an expensive cab ride. Put her in the car…"
"We cannot give you Morphine, you might become addicted" (This patient was 87!)
"Blood pressure 68/48 Oh that’s a great BP. You must be an athlete. Oh you are feeling dizzy…?"
No I am not making these things up! These are actual statements by medical 'professionals'. Over the past years I have made a collection of these. To any sane or normal person, they are garbage. I wonder how long the VA can go on allowing their staff to spew out this junk. This makes absolutely no sense, and trying to find any logic in this is totally futile.
Is this part of a plan to make us all so crazy that we go away? Is this some covert operation to rid themselves of those Veterans who need help? Do they deliberately make it as difficult as possible for us to hang on to our sanity by a small thread? Or are they all in an alternate universe and trying to drag us there too?
To be truthful I don't think this is part of an underhanded plan. Why? Because I don't think they have enough organizational skills to make such a plan. To care for the vast number of wounded heroes that these recent wars have produced takes careful planning. It needs common sense, good judgment and many different approaches. To be able to integrate all these things into one unified whole takes organization. That they do not have. The whole VA system is like a huge bloated slug. Can barely move under its own weight and leave a trail of slime wherever it touches.
In the past I have tried very hard, as most of us have, to work within the system. Now it is becoming more and more obvious that working in their system is impossible. With statements like these above, they are in another universe. One where I am not prepared to go.
Wednesday, July 20, 2011
Saturday, July 16, 2011
Tuesday, July 12, 2011
So much going on lately that is baffling, and I'm now thinking in riddles. Choose your own words, but here is how I believe we support one another here in our VCG Community:
C = Care and caring, considerate, communicating, coordination, collaboration
==> Compassionate Care Connection
A = Advocate, articulate, abundant, authentic, augment, awareness, amazing
==> Authentic Advocacy
R = Real, rewarding, renewal, renovate, review, rally, refresh, reemerge
==> Realistic Renewal
E = Educate, emerge, energize, embrace, effect, epitome, escape, enjoy
==> Effective Energy
We may not have control over much, but we are able to live supporting one another and choosing the positive words over the discouraging ones. You are all amazing in your compassion for others. Wishing you a good day today!
Friday, July 8, 2011
Well, dealing with the VA is very much like tackling an assault course. The main difference is that while on an actual assault course, you have a crowd of buddies cheering you on, and you can actually see the end of the course, no matter how unlikely it feels that you will get there. You know that with skill, training, perseverance and the support of your buddies, you can make it to the end.
When dealing with the VA none of this happens. No one is cheering you on. No one shows you the end of the course. If, by some miracle, you actually climb the final wall, they quickly place another array of objects which have to be scrambled over or under or through before you get to the end. In the very unlikely event that you do actually make it to the end, you will find someone standing with a stop-watch, telling you that you were not fast enough at the second stage and you will have to do it all again.
This all comes down to the simple fact that they do not want us to succeed. Veterans and their caregivers must never be allowed to think for one moment that they have arrived. There must be no suggestion that the last hurdle has been overcome or the last problem dealt with.
If I had to chose between dealing with the VA either in person or via the telephone or running through an assault course, just give me the assault course every time. I would haul my aching bones to the end, one way or another because I know that at the very least, no one is going to move the last wall and when I have climbed it, I have arrived!
Friday, June 24, 2011
This will be short, because the message is clear: only through direct communication, follow-up, and proactive connection will you be able to gain information you need to forward your Veteran's recovery or your Caregiving challenges.
Know how to succinctly state what you need before calling the helplines and organizations. If you aren't satisfied, ask for a supervisor. Some matters may require time to research before a response. Yet, many issues aren't understood due to confusion or semantics, so be clear and fair in what you're requesting.
Finally, if you call resources and do not receive a callback in a timely fashion, please write them to document the issue. Let's face it, when you're at your wits end, waiting for days just doesn't work. Try telling your Vet that the call they expected didn't come yet, and many Caregivers will say that they are now the verbal target. Let us know if you need support and we'll advocate for/with you.
Change will only come through education, perseverance, clarity, and follow-through. We care about making the system work for YOU.
Tuesday, June 21, 2011
Well, I guess the answer is when it is the VA!
So to add to Linda’s previous and excellent Blog about how to deal with the VA and your Congressman or Woman, I wanted to add the following.
Back last March I contacted our VA over an issue on behalf of the disabled Veteran that I care for. I also forwarded the same information to our Congressman who has been very helpful in the past. I like to keep him in the loop!
As of June first I still had not received any response from the VA, although I did get a response from our Congressman in May, who also sent a copy of the letter that he received from the VA.
I figured that if the Congressman could find the time to answer my communication, then the VA should be able to do the same, so I sent off yet another fax which I followed up with hard copy via mail.
That elicited a phone response from the VAMC, from a man who identified himself as ‘from the executive office’, but he was not, as he was quick to inform me, the actual person who was responsible for dealing with this issue, he was merely a stand-in for him! I felt like responding that the VA’s staffing problems were not my main concern, but I restrained myself with admirable calm.
I did not feel quite so calm when I heard his explanation of why I received no acknowledgement of my communication. He told me that when the VA are contacted by a Veteran and also by a Congressman on any issue, they respond to the Congressman and let him or her respond to the Veteran!!!
In other words, the VA obviously do not feel that the Veteran is deserving of any kind of response or acknowledgement. Aside from any moral aspect of disrespect for the Veteran, this goes against all forms of good business practice, which dictates that if someone take the trouble to contact your business or organization for any reason, the very least they should be able to expect is the courtesy of a response.
The VA are also using the Congressman to do their work for them, namely expecting him or her to act as their secretary and deal with their mail. As our Congressmen are elected by their constituents and are supported by our tax dollars, I find this quite incredible.
Therefore, please be aware that if you should need to contact your VA for any reason, either by letter or fax, you probably also need to send the same information to your Congressman so that at some point in the future, you can expect some kind of third party response.
Thursday, June 16, 2011
As you know, a part of what VeteranCaregiver does is to contact Congressmen and Senator staff liaisons for Veterans Issues on your behalf, or to start the conversation for a specific issue. As a constituent (a voting member of your district or state), your state's Congressman or Senator will open a case file and try to assist with the challenge you've identified to them. There are many kinds of inquiries, but I will just outline the simplest measures to follow in this blog because they've come up recently and we want you to be most effective with your limited time.
Here are some facts that you should know that will help you:
- Identify your legislators by using the Tell My Politician feature on VCG; obtain the phone number
- CALL the Washington, DC Office first and state your need
- FAX a follow-up letter to the office and also email a response to summarize your request
- Do not mail letters, as the security precautions for snail mail will delay your inquiry by up to 6 weeks
- If asked to sign releases, ask what the release is for? In most cases, you do NOT need to release your medical records in order to have them assist you. Be prudent, but make the best decision possible to obtain what you need.
- If you do not hear back within a reasonable time, CALL again; you must remain persistent
Know that if you send inquiries to legislators OUTSIDE of your state, that by "professional courtesy", that office will simply send on your inquiry to the Committee staffer for YOUR state area, and you will likely NOT receive a response. Just this morning, I spoke with a high-ranking member's office about a non-response to one of our Vets/Caregivers, and was told that "we can't respond to all the emails". As you can imagine, most people receive high volume email, so when you don't hear from them, place a CALL; it will be answered and your issue temporarily moved to the top of the pile. You will then hear what they have done on your behalf.
This sounds a great deal like working with the agencies, I know, but please know that these folks are elected and sworn to serve YOU, the constituent. If you can make the time to call, document, and follow-up, chances are very good that you will receive help. Make friends with the Veterans Liaison staffer; it's well worth the effort.
Finally, know that we will continue to advocate for you when the load is just too much - this is a case of multiple contacts, persistence, warmth, caring and follow-up. Hope this helps some of you just a little bit! Washington is a world of its own.