Saturday, November 29, 2014

#DearVA Good Morning.

#DearVA,
Good morning. I'd like to tell you about my experience with respite care that is supposedly available to me through the caregiver program. September and October are notoriously bad months for C (my finance'/veteran). I can and do anticipate the onslaught of random mood swings, highly impulsive actions, nastiness, refusal of meds, sleepless nights, suicide watches... I know better than anyone that it happens and even though I'm still learning how to compensate for it, I do pretty good. This September was different. This year, C was also going through a med change and I was at my wits end. I was 2 days (sometimes shorter, like 2 seconds) away from calling it quits and ending the relationship. I didn't want to, but at the time there was (and even with 20/20 hindsight) nothing I could do differently and that was the only viable answer to keep my sanity. I stayed, because his MH doctor and our couples counselor both encouraged me to 'ride it out'. I felt trapped. I felt bitter, towards everyone involved even though I could see past that to the bigger picture and understood the 'whys'. I'll admit I certainly didn't have some of my best caregiver moments. I was completely burnt out. So what did i do? Nothing. I shut down. It took C calling my CSC and asking for respite care. What we were told was that she didn't know what was available for our situation. She said that usually respite care was used when a spouse's family member was ill or passed and they needed to travel. #VA, my CSC never did get back to us about what options there were. A week passed after not hearing anything and C ended up inpatient due to a rather bad flashback and major anxiety attack. I don't know if inpatient could have been avoided-it's possible if we had gotten a break sooner that he might have been able to focus on some of the coping tools he's learned-, but I got a teeny tiny bit of relief because I had a little space away from him and he was somewhere safe and then presented with a whole lot of new caregiver problems- trying to get correct information on a holiday weekend is damn near impossible. I digress though, the inpatient escapade is an altogether different letter. Still no word on respite care. C and I are both just lucky I'm resilient and ridiculously stubborn. 
With yesterday's Meet and Greet that I missed, and another opportunity to have time for myself with other caregiver friends that will likely be missed, I am once again feeling left out (I don't know if left out is the correct wording, maybe overwhelmed, saddened, disappointed, lonely...) You see, there are opportunities available for caregivers that would allow me to explore self care so I don't have a mental break, but the respite care (of which we are supposed to be able to get up to 30 day per year of through the Caregiver Program) has something to be desired. I hate thinking that if I ever get so overwhelmed again that I shut down that a trip to the ER is our only option. For who? I don't have the 'luxury' of going to the ER and checking in for a few days myself. I have a family, C, 2 children, things that **I** have to take care of because they can't. I would hate to see that disaster. So it would have to be C, he would need a safe place to be with people who would look out for him. It looks like a never ending circle with very few viable options, no matter how much planning I do.
#NewVA, I hope you're listening and taking to heart our stories. Not just my story, but others. Families and caregivers, which have yet to be included in your roadmap for a "new VA" . Please include us, we selflessly offer so much to our veterans often with no breaks and no time for self care. I don't believe it is asking too much to be included in your plans so situations like this can be avoided in the future.
DNE

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#‎DearVA‬ - Dear World out there, Family and Friends,

This will be a difficult one but it needs to get out of me. I've been writing these letters for about a week, hoping you would hear. I know many things I write about are hard and can be disturbing. I am trying to just let my anger and frustration out but am mostly trying to bring awareness to all that is going wrong, has been going wrong for way to many years and explain how difficult it is as a caregiver who has walked in them boots for all them years too.These letters and the complaining is not about a "hand out" at all. I have seen many over the years, who only are looking for that but when I look back at the last 10 yrs, more times then not, we were just grateful for whatever you gave. We weren't sitting at your door each day looking for more. I can't tell you how many times he said he doesn't deserve more for the fact that he still has all his limps , can still walk, talk and still has his life as difficult as it may be to live with PTSD alongside a long list of other medical issues that are wrong with him. I am not complaining over the life we lead, with the ups and the downs as anyone else out there sees. I am grateful for each day I get to be with him since I could have lost him so many times over - too.I chose the life of an Army Wife , never knowing what will come later in life, but when I signed the dotted line and said my "I do's" it wasn't about you. It was love and that is true. I love him more each day and made the commitment of a lifetime to him.People tell me why do you punish yourself and your kids, divorce is so easy ,why would someone live like this ? Yes, divorces are made easy and many can't live the life of a caregiver, the life of a Veterans wife, many can't face the day to day hardship we see - but true love is stronger , don't you see ? I was on the merge on given up often and wish I could just get a "break" to sort my own mind and build the strength in me again to face another day of this life. I am not writing to you to bitch and complain , just want a little help , a "break" so to speak. You could give me the help, the support that I need with all the right tools in place at the ‪#‎NewVA‬ . I'm just tired of fighting a war with you and tired of the lies , the rocks you lay along our way.

I could tell you stories of things that happened over the last 10 years, painful memories that stay with me but all it would do put the wrong portrait of him on here. He isn't a monster,you see, but a man who cares for his country and family.He is loving and caring with a heart made of gold but he fights a war within him, a never ending war.I will stand beside him, be here for him, I will protect him, fight for him and advocate for him because if I don't do it, no one else will.

For all of those out there, who get upset at me for writing these letters, please remember that only about 3 % of the popularity will stand and fight for this country,for your freedom and know exactly what it means when they sign the dotted line, that includes to give their life. Their service means more to them than you can ever imagine. It isn't about the GI Bill, the money they might get at the end of their service. It is about honor and love for country and family. Please stop saying things such "it was their choice and now they have to deal with whatever has happened to them, is given to them" , please stop to call them names, call them monsters and murderers and more horrible words.I haven't met a Veteran who doesn't carry a heart of gold,who cares for his fellow brothers and sisters, who wouldn't stand tall to protect and help as far as they can. Please stop judging us Caregivers when we bitch and we moan, we just want some support, some help that is all. Please don't tell us how easy it is to walk away or ask us why we punish ourselves by staying there. The reason is simple don't you understand - WE FEEL TRUE LOVE OUR HEROES!

This is my rant for today, I have nothing more to say. Just listen to us, and help us a long to make the lives of our Heroes a better one.

Wife of a Veteran - a Hero who is loved more then words could ever say. Mother of 3. ONE VOICE.

Friday, November 28, 2014

#DearVA It is Early On a Saturday...

Dear ‪#‎VA‬ ,
It is early on a Saturday as I sit here, have a cup of coffee and try to prepare myself for the day, the struggles I may have to face today. This morning I took the time and watched " 60 minutes " with Secretary Robert (Bob) McDonald. It was interesting to see what he had to say, he sounded sincere but my heart and mind are still torn in two. Is he just talking a good talk or will he walk a good walk. I want to have hope, trust and faith in this man but after years of disappointment its hard to get past the fear of more anguish,helplessness and more struggles.I watched him there on the screen, talking to Veteran's, Doctors etc. but what I really would love to see, is him sitting down with FOV ( FamilyOfaVet.com - PTSD, TBI, & Life After Combat ). Just to get another side to the story, listen to those who care for Veterans not just while they come to an office for treatment but those who are there 24 hours a day, 7 days a week , each month and each year. So here is my plea, Dear Mr. Secretary Robert (Bob) McDonald, while you travel the country, would you please stop for a visit at FOV?
This upcoming week , we will put our hopes on the line again when it comes to the VA.

I ran into a man, a Marine Veteran one day, we spoke briefly in the store when he told me please wait for me. So I waited outside, in the pouring rain, we stood together and talked - a complete stranger and me. He was the kindest man I have met in a while, he cared, he listened, he let me cry. He told me his story of years with the VA , different clinics, hospitals and the struggles he faced. He gave me phone numbers , directions and names , told me to reach out to this one clinic and explained that "they really do care!". We went out on a limp and gave them a call , we have nothing to loose at this point at all. An appointment is set for the next week and the lady on the phone was sweet as can be. We have to give it a try, no promises made, nothing to loose what do I fear ? 

Here is your chance VA, let me see that you can be better then the last 10 years.

A Veterans wife, a Mom of 3 , One Voice

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#DearVA,
I want to talk to you today about widows and children.
I don't know that most people are aware of what happens to someone when they wake up the morning after their hero dies.
I've already watched too many times families who not only wake up and must face that unbelievable grief and sadness... but also face almost instant financial ruin.
There are some things we could do to change that. To make sure that when our heroes say their final goodbyes, the families that have loved and cared for them aren't left in poverty.
Most families I know (even incredibly pro-active families who are the type to double and triple check every benefit and piece of paperwork) have at most a $10,000 life insurance policy (your S-DVI).
They don't know (to know, they would have to read far into the #VA website or in the tiny print of federal code) that many of them are eligible to increase that amount by another $25,000. Its one of those "hidden secrets".
VGLI would be a lifesaver... as it would provide an option for them to have an insurance policy of up to $400k (which most financial planners tell me is the minimum a family whose primary "breadwinner"... which is effectively what our heroes are... passes away should have). But that policy has a deadline (240 days after separation from the military). And even I know of less than 5 families who knew about the deadline in time to sign up.
Because of the injuries and illnesses our heroes have from serving their country, " commercial" insurance policies (from private companies) are not an option.
And then there's DIC (dependent indemnity compensation) - sort of a widow's benefit - which currently at the most is around $1400 per month.
The SBP (survivors benefit plan) that allows families to prepare by paying each month so that a widow or widower can receive a portion of their Hero's military retirement has so many catches (and offsets DIC) that it really isn't worth the monthly cost for many families.
Social Security doesn't help unless a family has children under the age of 16 at home or a spouse is older than 60 (well, except for the really helpful $300 one-time "death benefit" that is somehow supposed to help with final arrangements, but is hardly a drop in the bucket).
And, I know you are as aware as I am, that typically a caregiver (especially those who start caring for younger veterans) will have gone decades without any real job experience (and thus items for their resume) by the time they say goodbye to the hero they have stood by, cared for, fought for, and loved.
So, they wake up the next morning with a bank account that is empty, will receive (sometime... Often 3-6 months later) 1/4 of the income their family was living on... with (if they're lucky) a $10,000 life insurance policy (a good chunk of which they will likely use for final expenses), no job skills (and few prospects).
I've watched many of them lose their homes, go bankrupt, have vehicles repossessed, struggle to eat and keep their utilities on... All while grieving their hero.
We don't expect to be bank-rolled by the government for the rest of our lives (we are veteran and military spouses after all... we are proud and well acquainted with the idea of hard work). But there HAS to be some sort of viable safety net that allows families who have quite literally given their lives to care for a hero to then recover and get on their feet.
The following would make HUGE steps to making sure those grieving heroes don't go homeless and hungry:
Open enrollment season for VGLI - so that heroes and families actually have a responsible way to prepare for the future. We would gladly pay monthly premiums to have the option for a "safety net"... But you have to open that option up.
End DIC "offset" (where widows benefits from the VA are cancelled out by widows benefits from the DoD) - including YOUR support of HR 32 and S 734, companion bills in the House and Senate that would put an end to the offset
Raise the DIC rate - again YOUR support of HR 4741, a House resolution that would raise the DIC rate so that it was more inline with other federal survivor benefits (surely the widows of veterans deserve at least as much as others?)
Benefits for the Month a hero passes stay in place - it is cruel for benefits to be removed... For a Hero's final days to be effectively "pro-rated" which puts a family in further dire financial circumstances
DIC processing times - DIC payments should start the following month, so that there is no 3-6 month window where a grieving family has no income
I know the #NewVA has a lot to do... But this has to go on your list as well. We can't allow widows and children to loose their homes, to struggle for food and basic necessities... all while grieving the hero they have cared for, a hero who gave his or her life on behalf of our country. It's no way to honor the commitment and sacrifice of our brave.
Sincerely, Brannan Vines

Thursday, November 27, 2014

#DearVA I Was Suppose to Attend a Caregiver's Meet and Greet...

#DearVA,
I was supposed to attend a caregiver's meet and greet at the #VA today. It will be the first one our CSC and VA is facilitating and I was looking forward to attending, meeting other caregivers in the area (although we're an hours drive away), and being able to give some feedback. It's a 3 hour get together, great! The tricky part about that is, it specifically said not to bring the Veteran. Ok, I completely understand why. I get that it's so so important for us (caregivers) to be able to openly discuss our lives, struggles, successes, whatever without having to worry about filters in front of the guys we care for. Totally understand. Buuut, we live an hour away. An hour there, 3 hours in the meeting, an hour back. That's five hours (non-VA math) that I will be gone. I can't even make a fifteen minute trip to the grocery store alone most days! So while I'm super grateful for the opportunity, I need to pass if there's not something like a group or activity to keep him occupied at the same time. (Plus it wouldn't be a terrible idea for the guys to have a get together at the same time so they could find a local battle buddy or two)
I think moving forward, this is something the #NewVA should take in to account. Caregivers are here to support our Veterans. We want to do the best we can, but we need adequate support for ourselves such as having this meet and greet and being able to find connections and friends to build a support system who 'gets it' that takes into account some of our daily struggles instead of adding another.

Anonymous

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#DearVA

Today the local #VA is holding an event in honor of National Caregiver Month. I would soooo love to be there, but I'm not. I couldn't go because it fell on the same day at the same time as my four year olds weekly gymnastics class at a local cafe who has kids activities. Unlike families without a disabled veteran there was no bother option. My husband couldn't take her while I went to the event because he can't drive. I also couldn't drop them both off and go to the VA. For one, he did not sleep well, yet again. He is too exhausted to even walk up the stairs without the fear of falling. He's at home hoping to catch a nap which probably won't happen. This has been going on for months now (with his sleep issues going on for 9 YEARS and they are STILL UNDIAGNOSED! But that is an issue for another letter). Even if my husband could come with us today, I couldn't leave him here alone. There is a mom group who come to the cafe and they bring upwards of 20 women, not including their kids. It becomes you crowded and his anxiety and anger will shoot through the roof. He can't drive so he has no way to leave if that happens, no escape. So again that's by an option.

By now you might be thinking, "why doesn't her kid miss a class just this once?" Well I'll tell you why. Because of my husband's problems which include but are not limited to herniated discs, low back and sciatic nerve pain, migraines, sleep problems & daytime sleepiness, anxiety, and depression we don't get out much. This means our daughter has limited interaction with the outside world let alone kids her own age. Gymnastics and other outing to this cafe is the only time she gets to play with kids her own age and I refuse to take that away from her. She so desperately wants others to play with and today she gets that chance. She gets the chance to make friends, socialize, and use up all that energy a 4 year old has.  

I really wanted to meet some other caregivers in then area. I wanted to make in person friends. But I didn't want to do that at the expense of my daughter.

You see, not only are the caregivers of veterans affected by their injuries and illnesses, but so are their families; their children. So far the plans for the #NewVA leave us out. They leave out the caregivers. They leave out the families. They leave out the children. These injuries and illnesses out veterans experience do not occur in a vacuum. Those who love, live with, and care for a veteran are affected as well. Even the kids care for their veterans. My daughter will pick up my husband's cane when he drops it, snuggle him when he feels tired, and kisses his "owies" on bad pain days. It might not seem like much but she shows him that despite his disabilities he is loved and that does wonders for his mood and makes the pain he feels daily a little more bearable.

So please #NewVA, don't forget our little caregivers, our little families in your new plan.

H.G

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear #VA

Do people really... really not realize that unless their wives have good jobs, that many of our heros do without?
That many who came home injured can't work? And that even those that can often can't work to the capacity that they might have been able to? 

That even when they are enlisted that they qualify for food stamps? Do people REALLY think that we are taking care of our Veterans the way we should? 

Is the fact that our citizens aren't outraged just a misunderstanding?

K.B

Wednesday, November 26, 2014

#DearVA Everyday I write you about the Veteran Here...

Dear ‪#‎VA‬,

Every day I write you about the Veteran here but how about today, we talk about other Veterans that are near and dear. My father in law, my special Pop who was there to help raise me throughout the years also there is my Poppy who I love so dear. Those are just 3 and there are so many more.... My father in law, I hope God holds him close, passed away many years ago. He was a strong man from what I have been told, hard working and loving to all that have known. He served in Vietnam , a Veteran just like his son. Where were you for him over 40 years ago ? He is one of the many who were mistreated for years, spit on and thrown out to the curb. He had to find his way in the world with the hardship and struggles Vietnam left with him.
My special Pop, what can I say, another Vietnam Veteran who served but not just in Vietnam but all over the world...there are too many deployments to list , now a days he is falling apart. Agent Orange is sitting in his body, eating him slowly and all I can do is sit here and watch. Often I am afraid to answer the phone, afraid that it will be the one that ends it all.
Not to forget is my dear Poppy.Can you believe he is a WWII Vet ? He is the sweetest man, that you will ever know.He has seen so much in his 80+ years, he can tell you more about life then you can ever imagine. He has been through it all, he has seen wars come and go, has fought for your freedom and still is standing tall. I love to sit and listen to his wisdom, he has taught me more , has shown me the truth. I love you Poppy , you are my bestest! Would you listen to him and learn from him too, he has more knowledge then you will ever know.
Almost 40 years have passed since that war has ended, 40 years with struggles and fights and people left to die. For over 40 years the struggles been true , who says you will change now and not just let it go. Do you see those that live on the streets, hungry and lonely and no one near ? Don't you see that they can't do for themselves ? That no one is near to take a stand, to advocate, to support ? I want to tell you bluntly what you should do but it wouldn't be nice to curse you.
Now you have the chance, CHANGE THINGS AND LISTEN, not just us "young folk" but those who have been there for 40+ years too. As much knowledge we may have, we know they have more and they need as much help as all of us do too. ‪#‎NewVA‬, get your behind in gear and just make the changes and hear our plea. Let us be part because WE KNOW and can assist you and not let 40 years go by again without any changes that are long over due.
Wife of a Veteran, Daughter in Law to a Veteran who she never got to meet, Mom of 3 , One Voice.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#DearVA

Lets talk about fee basis.  In general, the #VA has been great to my husband when it comes to fee basis appointments.  That is, until he saw a sleep specialist at a hospital which often takes fee basis appointments from the VA.  We thought this would go smoothly.  My husband was given one appointment to see the sleep specialist.  It did not go well.  Part of this reason is that they did not have all the information they needed from the VA to properly diagnose or help my husband.  His sleep issues are still mostly speculation (with heavy evidence and a lot of research mind you) on our part.  The big issue was that the place we went, who had often worked with veterans via fee basis, had NO idea how to request more appointments from the VA.  My husband saw the specialist in February of 2014 and STILL has not gone to see someone because they didn’t know what they were doing.  My advice is to ensure that those doctors who receive fee basis appointments be properly trained in how to request more appointments from the VA.  Now, we are starting all over (which is not the first time, but that’s another issue).

I hope the #NewVA will address this issue and ensure that doctors who accept fee basis appointments fully understand every aspect of what they are required to do, whether that be asking for more appointments or billing (we’ve had issues there as well).

H.G

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Many resources out there for individuals with PTSD are limited to those who served after 9-11.
While I fully understand the difficulties those returning now face and the difficulties of those that have served in the recent past or are currently serving, are those who served before somehow less deserving of the same resources for the same injuries? PTSD doesn't discriminate. TBI doesn't become MORE severe based on the year it was incurred. 

This seems confusing an...d discriminatory to those who served in any other conflict. 

Why should a Vietnam era vet not also be able to apply for some of the programs out there? Or someone who served in Korea, Panama, Kosovo, Desert Storm or any other time?
I hope that part of the ‪#‎NewVA‬ will look at making resources available to all Veterans. I encourage all of you to let your representatives know if you'd like to see that happen as well.

K.B

Tuesday, November 25, 2014

#Dear VA Let's Talk...

#DearVA

Let's talk about about the #VA handles consults and how the #NewVA might be able to improve on these.  When a consult is out the veteran gets no notification on how it progresses.  This can be a problem if the consult is cancelled or denied.  The doctors often won’t follow it to the next stage on their own.  I know, cause I’ve had to hound VA staff and my husband’s primary care provider to get his sleep issues, which point toward narcolepsy, looked at.  First I asked his PCP for a consult to a neurologist/sleep specialist to go over the sleep study he had done at another VA.  The consult was put in, but it was cancelled because no one at the current VA could treat narcolepsy.  After that, nothing happened.  The doctor didn’t follow up.  It just died.  My husband was seeing someone else at the VA and I asked them at the end of the appointment if they could check up on the consult. It was only then we found out it was cancelled.  I contacted the PCP again and asked if we could be sent to the VA which originally did the sleep study.  Again, the consult was cancelled and died until I asked another random provider at the VA to check on its status.  AGAIN I had to ask the PCP to send out a consult, this time for a fee basis appointment.  Finally it was accepted.  

The problem here is that if a consult is cancelled and more steps can be taken, no one is informed and the doctors don’t follow up on it.  If the veteran or his/her caregiver does not ask around at the VA about the consult nothing is done and the veteran may go without the care he needs.  This is unacceptable.  This needs to change.  The veteran should be informed on the progress of a consult.  There is a lovely thing called secure messaging which would nice tool to use to inform the veteran on its progress.  In addition, the consult should not just drop dead.  At the very least, the person who put the consult in should follow up on it and take steps to ensure the veteran gets the care he needs.  As shown in our experience, there were several other options.  It would have gone a LOT faster if I didn’t have to check in on the consult whenever we happened to be at the VA seeing someone else.  Instead, it took MONTHS before he had an appointment with a sleep specialist.

Please consider changes to the way consults work.  Keep the veteran informed.  After all, he is a participant in his care too!

H.G


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


#DearVA, 
I'll write a nicer, longer letter later and explain why this isn't ok, but for now.... Thanks soooo much for the heads up about a change in primary doctors. It's always nice to find out you're getting a new doctor when you're calling for a follow up appointment. Is this part of the new and improved #NewVA? (#VA, that's sarcasm by the way.)
A very disgruntled caregiver, DNE

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear ‪#‎VA‬.

It has come to my attention that you have "lost" the information that shows we are married. 
Aside from the marriage certificate, the military records where I was listed as a dependent (going back 18 years), our two children and their birth certificates, our 18 years of marriage and all of the info that lists me as spouse, person to contact, power of attorney, health care proxy and beneficiary.... 
yeah, no... I can't see a thing that would imply we are married. ...
(Yes, that's sarcasm in case you didn't realize)
So now.. I need to resend you information that I know you have so that you can make sure that it's included in his records.
I also need to figure out exactly when you stopped including me as a dependent for payment purposes. Pretty sneaky to do so when you made a claims adjustment so it wouldn't be noticeable.. If my calculations are correct, he's been being underpaid for several years. 

How did this even happen #VA? Will the ‪#‎NewVA‬ be setting safeguards to keep things like this from happening?
I can only imagine how many hours of paperwork this is going to take, and how long I am going to have to spend on the phone.
K.B

Monday, November 24, 2014

#DearVA Why Must Getting Much Deserved Help Be So Difficult?

#DearVA,
Why must getting much deserved help be so difficult? And why must it be a billion times more difficult on a weekend/holiday? Our men and women who have fought so hard for you and your staff to have those days off (or to have those weekend/holiday jobs rather than no job at all) didn't take time off and say "we'll fight again on Monday". Their injuries, crises, worries and fears don't take a day off. So tell me, why is it so difficult to get real honest to goodness help, often times being turned away anyway all while begging for care?
If the #NewVA really wants to prove itself, HELP. Staff Emergency departments with capable staff who's first inclination when a warrior comes in begging to be safe, asking to be admitted for thier safety or the safety of others, is NOT 'the E.R. is closing soon for the night' or 'how quickly can we send this man home?' Staff it with doctors who READ (and dare I say, know how to pronounce) what medication the patient is on or if they have a history of self harm or what invisible injuries they have been diagnosed with-and without dismissing those invisible injuries as 'just anxiety' or 'needing to chill out'. (yes, #VA, I have heard one of your doctors say those exact words while a Veteran was asking for help after reliving a flashback) How about also making sure that when a patient comes in with a caregiver that he understands that we as caregivers know more about that Veteran than the attending doctor will probably ever know. Please make sure that they know that we would rather not see the ones we love and fight so hard for being told that the problems they're experiencing are minimal. We wouldn't be there if they were, we wouldn't be fighting so hard if they were .
#VA, it's time you honor your end of the bargain. They honored theirs, they served. It's time to live up to your promises to our Veterans, to care for them, to give them the dedication and services they so deserve. Show us, their families, them, that you can be a #NewVA.
Sincerely, DNE
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear ‪#‎VA‬.

Today I would like to ask you... What steps are being taken to ensure that going forward medical records will not include claims that Vet's have cancelled appointments, when in fact, they have been patiently waiting for those appointments?

Let me lay out a scenario....
A vet addresses a complaint with his PCP.
He requests an appointment with the department best able to handle this (neuro, urology, orth, etc) and is told the appointment will be made and the Vet... is to be notified.
Calls are made, no appt on calendar yet.
Vet goes back to see his PCP, and the complaint was mentioned.
Clinician says, and I quote.. "It doesn't appear to be that big a problem since you were a no show for these appointments."
No appointments were ever actually scheduled.
Vet was never notified to report.
How is this conducive to care? How is this being addressed ‪#‎NewVA‬ I look forward to the new changes that will hopefully resolve situations like I mention here.
Thanks!
K.B


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear ‪#‎VA‬,

I don't have much to you to say today, my head is still spinning when I think back of all the things I read. However, I need to make it clear to you, here and today - look at this photo that I found online, it tells the truth of so many in regards to the injuries they have sustained that you can't see. When I saw this it made me think of you and the 10 yrs that had to go by before you stood and wrote it down as PTSD. For 10 yrs you lied and said there is nothing wrong with him but I stood by and saw the tears, the struggles and the pain. I was the one who has been living with bruises all over me because he would lash out in his sleep and deal with the horrors that he has seen. For many of those years we had to sleep in separate rooms or beds just to get a little rest. I still heard him scream each and every night, picked him up of the floor more then ones but all you said is that "he is fine" because you never would listen to me.
Again I am asking you now and here with the ‪#‎NewVA‬, PLEASE LISTEN TO ME! 

Wife of a Veteran, Mom of 3 


Sunday, November 23, 2014

#DearVA I Hope You Had a Restful Good Nights Sleep

Dear ‪#‎VA‬ ,
I hope you had a restful night and got a good nights sleep. I hope you are ready to face the day today refreshed and with a plan. I hope your plan for the ‪#‎NewVA‬ , includes people just like me, those that don't get restful nights, those who battle someone else's war alongside them through the night. But its not just the nights that are restless and full of fear, its the days, the hours, sometimes minutes, a split second that can turn everything good into pure hell. Do you know what its like , are you here? Do you hear him scream at night , hear my children cry when they are ripped out of their dreams ? No you don't , you lay in your beds with blissful dreams, never had to face the terror I hear. So please VA , I am begging you, listen to me and to my plea. Be there to support those who fought for you, your freedom and your peaceful sleep and LISTEN to us Caregivers who see it all , who know the truth and see it all the time. No matter if its day or night, no matter what day a week, no matter if it is a holiday we always stand by their sides. Our Veterans deserve better care and we need to be included in their care!

Exhausted, tired wife of a Veteran and Mom to 3

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#DearVA

I recently saw that the #VA was making some changes, which I am excited for.  Things need to change.  However, the plan for the #NewVA does not include plans for caregivers or the families of veterans.  Caregivers are vital in the care of these veterans and should not be overlooked.  I say this as a Veteran’s Wife and Caregiver.  I have seen first hand how much one single veteran needs his caregiver.  If it weren’t for me advocating and fighting the VA for his care, he would go without and be worse off than he already is.  Let me paint you a picture of just one instance where I was vital to my veteran’s care.

A while back we had some difficulty with some staff in a PMRS clinic.  These providers were convinced that my veteran’s pain was because of his mental health issues, specifically his depression.  Even though his depression had improved throughout the year of treatment prior to this appointment they kept telling him to get his depression under control and the pain would decrease.  His pain had only increased while his depression increased.  We had to inform his mental health team of what these providers were saying, and they advocated for him.  Still, they did nothing different to help my veteran.  They discounted the new pain he was experiencing which was causing him a good deal of anxiety because he thought his back problems were getting worse.  

We were getting no where with this appointment.  They kept shooting us down.  my husband was getting anxious, felt like they didn’t want to help him, and was getting tired of fighting.  I felt the same way and also saw the pain, emotional pain caused by these people and his physical pain.  I started to cry.  at that point, my veteran gave up and stormed out of the room.  I remained, collected myself, and continued to try to get him the care he needed and in this case it was an MRI of his back to check to make sure nothing more was going on.  The last MRI was done a year ago at a previous VA in another state which the current VA did not have the images for.  I told these providers that if they wanted to decrease his anxiety and depression in order to decrease his pain giving him the MRI would help.  If he has one, it would ease his anxiety if nothing more was wrong.  If something else was wrong with would help them to help him.  AFter this meeting, a consult was put in for him to have an MRI.  

If it weren't for me, my veteran’s caregiver, he would not have had an MRI done.  He would have stormed out of the room where he felt defeated and unhelped and probably never come back to see them.  Unfortunately, this team did not end up helping him.  We never found out what the MRI result were until months later when we moved to a new city and a new VA hospital.  And the only reason they were read to us was because I, his caregiver, had remembered they had a newer MRI that they needed to check.  It turns out, his back was getting worse and he had developed arthritis in addition to his herniated and compressed spinal disks.

Its times like these where veterans NEED their caregivers.  They NEED someone who knows their case inside and out.  They NEED someone who knows what is best for them based on experience with the veteran and not a chart or medical records which are inaccurate (and there ARE inaccurate records out there).  They NEED a caregiver who will continue to fight for them when they can no longer fight for themselves because all too often the current VA will wear them down until they just go without care rather than deal with the VA.  When a veteran discontinues care, bad things can happen.  Conditions worsen, they may become homeless, or god forbid end their own lives because they do not have the will to fight with an organization to promised to take care of them.  

Caregivers SAVE lives, IMPROVE lives, and carry the burden for those they love when they can’t do it for themselves.


Don’t forget the caregivers.

H.G

Saturday, November 22, 2014

#DearVA Do You Think We Could Talk a Minute?

Dear ‪#‎VA‬ or even ‪#‎NewVA‬

Do you think we could talk for a minute? I mean, I think I've been pretty patient and fair through the years. I've never screamed at anyone despite my endless frustration or the days I've spent literally an entire workday on hold or being shuffled around from one department to another. 

I've only cried in your hospital 2 or 3 times and just once in the actual offices. 

It's been 18 years. That has to count for something. I hope I've got your attention. 

I want to talk about how in the new plans there is almost NO mention of the critical role that families and caregivers play in ensuring that our nations heroes receive the best possible care.

Without including the feedback, involvement and frankly the insight of those closest to, those who love and care for our vets on a daily basis these initiatives honestly are a huge concern to me. 

Invisible injuries such as PTSD and TBI, don't just impact our veterans, but the entire family as well. Let me say that again. PTSD is an issue for the WHOLE family. It is irrational to expect that progress will continue to be made without the inclusion of caregivers and family members.

If you are looking to ensure the best possible care , you need to make sure that VA staff and clinicians are trained and encouraged to seek the input of caregivers, this invaluable and often lifesaving information are puzzle pieces that our Vets often leave out of their history, not intentionally but because they don't see it, they don't remember it, they didn't realize the extent of it. I've had clinicians act like something was a minor incident until I explained what had happened with a clear head to them.... and then they sat there stunned and said "But that's not what it said in the chart"

The charts are incomplete, they are inaccurate and sometimes they are filled with fallacies. Sometimes those are because of overwork, under staffing or miscommunication, and sometimes they are the result of past laziness or incompetence on someone's part.

Those that live with this every day, those that have learned to function in the version of normal we call our lives must be heard if you want to be successful. 

The only mention of "families" in the Road to Veterans Day from Secretary McDonald is when the VA motto (and quote from President Lincoln) is used.

The "MyVA" work groups and input sessions that are celebrated as the way the new VA is being structured to better serve Veterans gives no mention of seeking insight from caregivers.

How is this going to help anyone? I can tell you that without the advocacy of their families and caregivers, many of our nations heros slip through the cracks. There is a reason the suicide rate is so high, there is a reason the homelessness rate is so high. 

When they can't advocate for themselves... who do you think does it?

Let's forge the new path together #VA. Let's make sure, as a partnership, that as the VA moves forward it plans to recognize that providing top quality care to those that have served us so honorably will only be possible if doctors, nurses, staff, all medical personnel are really aware of the key role that family members play in the care process.

Thanks. 

K.B