The Life You Save May Be Your Own

Greetings, friends,

       It has been such a tumultuous two weeks at VCG, which is no surprise given a full moon and a long holiday weekend/week of family, group gatherings and meal, and travels.  Amid the generally accepted positive that holidays may bring, also comes the specter of additional stress and self-analysis.  It has been an especially busy and breakthrough time for caregivers and vets.

      What you don't see online at VeteranCaregiver are the behind-the-scenes direct Caregiving with advocacy, education, and coordination to navigate the system.  These are the innumerable phone calls, the text messages, the emails, and the discussions with many in order to provide solace, support, resource coordination, or actions for veterans and caregivers alike.  The caring is very close to 24/7, and the needs growing. And, as a small sampling of what occurs in the background of VCG, the end of this week was marked by several positive outcomes for two veterans with NO caregivers; those who need to advocate for themselves.  This is a measurable group; can you imagine the load this group carries – often alone?

      The first is a Reserve soldier with a serious TBI who had not received attention for his TBI for four months due to the prioritization of more acute physical injuries. His concerns were great since he could no longer read or write and his intellect and strong vocabulary were working against him in the system.  With half a dozen phone calls, and inquiries, this vet who'd "fallen between the cracks" was now aided by the organizations he didn't know of or how to ask for help.  He needed an advocate, and an existing caregiver called to ask for help on his behalf.  It was readily provided.  Remember, just because organizations exist to help, doesn't mean that there is proactive outreach to do so.  Personal contact and Advocacy made the difference. 

     With permission, below is a personal blog by a soldier who uses the VCG site as her Caregiver, and her site Friends as her safety net.  She is courageous, extremely private, and extraordinarily generous with her thoughts on the need for dynamic support from people who care.  In her own words, here is an excerpt of her thoughts on the challenges each day and the daily choices to fight to live:

       some of the injuries veterans face today are different than wars past.  traumatic brain injury is complicated, may have nary a symptom one day and the next day the same person can not function safely alone.  PTSD is being revisited to this country in a way that hasn't been felt since Vietnam.  loss of limbs and motor function is seen daily from soldiers coming home.  somehow we imagine in the civilian world that 'they' are being looked after.  

       surely we learned something from the 60's.  surely our soldiers now have it different.  yes, there has been some change but the truth is there is yet another population that nobody imagines to think of because the rationalization is that the government is looking after vets and their care.  i can assure you from personal experience that simply is not the case. even that world is give and take, appointments and paperwork, communication and organization.  if you don't possess the faculties or a home address to receive and review, the decisions will be made without examinations to determine the current health of the veteran and  the paperwork simply stops right alongside the 'care'.  

        they assume the last address on file is where you may be reached and if they don't get you there, they don't look. there is a reservoir of patience necessary to deal with this worn out and worn down, overloaded system.  the people who take care with vets and soldiers have to constantly be on guard to file all the right paperwork, keep track of medicines, appointments, reviews, emergencies, and review records to be sure everything gets from point A to B and on down the line to the many places that may be needed for care.  computerizing these systems have actually made it more difficult in my opinion rather than less.  if you don't know WHO to talk to it's a rough road. 

     our world is intricately connected by what we do and what we choose not to do.  every person matters.  caring matters.  love matters.  holding hands matters.  doing something today matters.  if it were you all alone, crying in the night, holding onto the old photo of what used to be, knowing it will never be the same again, what would you do?  how long do you think right now reading this that you could hold up in that pressure no matter your love for the person being cared for?  the difference any of us make is up to us.   the life you save may someday be your own.

"Those who can not remember the past are condemned to repeat it."  George Santayana

~aho mitakuye oyasin~

we are all one

     This week, please consider those seen and unseen on VeteranCaregiver and in the various medical centers and communities who do not know where to go for help, or don't have an advocate to assist them.  We ALL matter in the continuum of care.  Please proactively reach out; extraordinary lives depend upon it!

     Wishing only good ahead for each of you,

Linda

How Many Masks Do YOU Wear?

We are not having a good week.  On Easter Sunday, I was paralyzed from the sermon which spoke of rolling the stone away… and I just broke down and left to hide in the bathroom because even if the stone is rolled away from my “cave”, I’m still imprisoned.  The mask I wore Sunday was one of Despair:  no matter what I do, no matter what I choose, I disappoint someone.  My other two masks that day were Wife and Mom.

On Monday, because we just cannot get calls back from the VA after many voicemails and help from this site, now I was the full-on target of my husband’s frustration, anger, paranoia, and irrational behavior because he was “going to make things happen today!” It was 7:30am the Monday after the holiday.  I asked if we could discuss this after I took the children to school, and was told that the “children need to know how life really is”!  Oh really, do they?  NO, they do NOT!  My mask to the children was the It’s-All-Right one, and to my husband, the Don’t-Make-Me-Choose one.  In choices like these, someone will be hurt.

And, now today (Tuesday), he wants the contact numbers for anyone I’ve ever called about his case because clearly I cannot do my caregiving to his exacting standards.  I wrote them all down for him, because this is the very common distrustfulness of PTSD and I have called many people for him.  Of course, I then had to alert several people that they might receive calls, and that added to the stress.  Today’s mask was Resignation.

You know, if things were improving each day, or even each week, I could stand it. A simple callback from the VA?  It should not be too much to ask.  As caregivers, we give up everything.  We have serious financial strains, no medical care for me or our family, I gave up my full-time job, and our children see too much and are forced to understand behavior that is erratic and harmful.  Who do I fail?  Myself?  My children?  My husband?  Did you know that the life expectancy for a caregiver is shorter than someone who isn’t?  My mask right now is Exhaustion.

Rolling the stone away was so painful in my mind on Sunday.

Today my mask is Blank.  I cannot leave the cave.

I am Caregiver, Hear Me ROAR!

I am Caregiver, Hear me ROAR! I have come to the conclusion that I need to adopt a fight song!  Something that will keep me charging on, as my batteries wear down while performing my Caregiver duties here at Walter Reed Army Medical Center, Washington, DC.

What brought me to this conclusion was a comment made to me today, as I stood positioned next to my injured soldier as she worked out at the Walter Reed Military Army Advanced Training Center (MAT-C). For those of you not familiar, MAT-C is the center of activity for our Wounded Warriors who have broken or lost limbs and also suffered traumatic brain injuries (TBI).

For the past nine months, I have accompanied my daughter; a soldier injured in Afghanistan, to appointments for her multiple injuries. Accompanied is not the best word to describe what I have done as a Caregiver, that is a subject for another time.

A gentleman came up to me and told me how great my daughter looked and that her recovery was remarkable. He said, “This place [MAT-C] does amazing things.” I looked back at him stunned, as I was performing my Caregiver duties…catching my daughter as she proceeded to fall off the exercise machine. 

Tired and desperately needing a break from the stress of Caregiving, I said to him firmly and loudly, “It’s because of me, my hard work and being her Caregiver, that is why she is progressing as well as she is.” He was taken back by my immediate response, as was I. Oh well, I was just having a bad day…tired, exhausted and obviously not wearing my Army Mom hat which is a clue to avoid me at all costs.

My point is…I’m tired of being INVISIBLE and not getting the credit - really, recognition - for helping in her recovery. I have been by her side 24/7 for nine months. She would not have made it to any appointments without my help. And her recovery? Well because her Caregiver believes in holistic approaches that are not part of her treatment plan, she is now progressing very well. By the way, there is no comprehensive treatment plan—I am still awaiting one.

So now when I start to get tired or feel that my work is INVISIBLE, I have adopted a tune that plays over and over in my head. Thanks to Helen Reddy and Ray Burton for the inspiration from I Am Woman.  Insert Caregiver for Woman in the song, and you'll see what I mean. Maybe you would like to think about adopting the song as well, or perhaps we create one on our own. Whatever works to make it through the day, right?  Let me know your thoughts!

Caregiving Reality: Living with PTSD & Spreading the Word

Hello friends,

It’s raining here in the DC area today, and my thoughts keep circling to the conversations and events of this week -- round and round and round.  I finally decided that the most important thing I learned this week is that in addition to Caregivers often being invisible, is that the general public simply does not understand what it means to live with someone with PTSD.  (TBI brings its own set off issues that will be the subject of another blog posting.)

Do any of the following sound familiar to you:

-      With little warning or perhaps a small trigger, suddenly the person who is your adult son/daughter or spouse begins yelling at you, blaming you for every wrong thing in their lives; your heart cracks while your head tells you to be patient and kind.  It’s the condition, not you.

-      In a moment, suddenly you, the caregiver, is the enemy:  you neglected to do something, you didn’t do it right, your attention to them wavered for 23 seconds and now you clearly don’t care, the callbacks from VA or the local non-profit wasn’t returned, so you must not have asked them for help correctly. That crack in your heart widens, and your head begins to wrestle with the unfairness of the verbal attack, or punishing silence.

-      You are seeking help, online or on the phone.  The questions come pelting at you:  “Who are you talking to?  Why are you on Facebook, are you having an affair?  Tell those @#%$% that we need the help they promised!  Give me the phone – I’ll tell them what it’s really like! Are you really on Hold, or are you waiting for me to leave the room?  Get off the phone/computer, I don’t know why you’re wasting your time and mine – they don’t care! I don’t like when you talk about me to others….”.  Additional cracks appear on your heart, and now your head is stuck trying to analyze the data.  Reach out desperately for help, or stop reaching because it makes the day/night so much worse in the short run?

-      If you have children, when the yelling began, so did the stomping around, and the demeanor of your husband or adult child changed to someone you nor they know.  Your children begin crying, cringing, hiding, and the fear in their eyes takes over. Each time this occurs, the children retreat and cope in their own way. Your heart cracks even more, and your head says “How much longer can I do this?”

-      Your household might be filled with dark, angry music, the sounds of video war games, the clink of beer bottles, the whoosh of flame to light a cigarette, or the rattle of medication in a plastic bottle.  The blinds may be drawn on the windows all day, every day, or there might be a specific routine that MUST be followed, or there’s hell to pay.  Your heart is sore, and your head aches with trying to find solutions to avoiding scenes like these or living this way.

-      And, finally, unless you are able to see progress through counseling, medication, treatment plans, support and respite, and also have a support group to lean on (online, in person, or on the phone), your world has become smaller, your cracked heart has withered, and your exhaustion is near total.  You must take care of yourselves, your children, and your vet.

Helpless must not devolve into hopeless.  YOU MATTER!

Unfortunately, all those stories are real, and this list is only the tip of the iceberg.  I DO want to also emphasize that many vets are receiving help for their PTSD, and some Caregivers too.  Secondary PTSD is real.  PTSD does not have to mean a lifetime of living with a cracked, sore heart and impossible choices to go or stay.  The really hard part is to persist in gaining help, surrounding yourself with whatever support works for you, and knowing that people help more when they understand. 

So, in whatever way is possible for you, perhaps we can work together to help the rest of the world to understand.  Many of you have told me that your own family does not understand the invisible PTSD behaviors that can undo a family celebration.  If your own family is baffled, what can we do?  Well, let’s see if together we can create greater awareness, share a single day in your life by writing it down (yes, I know, there’s no spare time), or recording it on your phone when a thought comes to you.  The Caregiving Reality of PTSD needs to be shared and openly discussed.  Eyes and hearts will open, but it may take time.  We will launch a new initiative to help this in the next two weeks.

The invisible injuries are so very, very hard to live with and the general public would be better equipped to support you if the word got out more.  Unfortunately, the stories that make the papers the most are about the suicides from dealing with PTSD.  We need to prevent that outcome with every tool we have!  If so few are fighting our wars for our freedom, then it’s going to take a village to help them and their families when they return.

I was speaking to a faith-based group recently to spread awareness of Caregivers’ experiences in living with a vet with PTSD and to seek volunteers.  At one point, someone stopped me and said:  “That’s not true what you’re saying.  The government takes care of our troops, and they are getting care”.  …  They did not want to believe the very real stories I was telling them.  However, when the discussion really began and I could relate additional stories and real solutions, the group was greatly transformed.  The point was made to become involved, to be aware, and to proactively reach out to veterans’ families.  And, since my goal was to give them an idea of a Day in the Life of a Caregiver, there is now renewed awareness to assist families in this one community.  It’s a small start.

I’d mentioned that I was at Mologne House at Walter Reed on Tuesday.  In addition to being with some extraordinary Caregivers I know, there was also a special visitor that day.  Gary Sinise was in Washington for several events, but took the better part of that day to visit not only with veterans and families at Walter Reed Hospital, but also at Mologne House.  And, of the line calmly waiting in queue to meet Gary, I’m so glad to say that the Caregivers mattered!  Gary gave each of the Caregivers words of encouragement after he’d heard a small synopsis of who they were caring for every day.  It was a glimmer into how much better things would be for our service families if everyone cared this much. 

Most of us are not celebrities able to bring your days of caregiving to the public, but please know that we are working very hard to change your days of isolation, to help you find the path to the best treatment options in your local area, and to every day make Caregivers less invisible.  No matter if you’re caregiving for PTSD, TBI, Alzheimer’s, amputation, disease, or illness – together we will spread the word.

Caregivers are the heartbeat of the family, and the strongest, most remarkable people I know.  Please keep the faith, and let’s spread awareness as best we can, each and every day.  You matter, and you are not invisible here!

Wishing only good things ahead for you,

Linda

  

Wounded Warrior Care Summit

Greetings!
          Yesterday was a fascinating day.  With two very special caregivers from Mologne House at Walter Reed Army Medical Center, I attended the DoD/Warrior Transition Care Summit in Leesburg, Virginia after being asked to accompany them and to provide transportation. 
          You all know that I am humbled and truly respect all caregivers for their unrelenting optimism and perseverance, but rarely have I seen such grace and strength when these women presented their stories.  There were five remarkable caregivers on the panel, but I will share my thoughts about the two I accompanied.
          One is the sister of a seriously injured Marine and his fulltime caregiver, and at 24 years of age, has poise and presence beyond her years.  The other is the mother of a seriously injured female soldier, formerly a successful marketing professional and now fulltime caregiver - articulate and succinct in her thoughts regarding improvement.  They were marvelous representatives to share the genuine Caregiving Reality in this setting. And, they both want to be change agents in improving the combat recovery caregiving experience. 
          Caregivers are so often invisible. Not yesterday, however! The experienced participant group at the Summit listened attentively to the details these two caregivers shared regarding gaps in communication, education, medical care, 'customer service', and specific situations they would not have otherwise known. This information resonated with the group who were gathered to consider and recommend "best practices" to the DoD.  The takeaway message:  There is simply no One-Size-Fits-All caregiving solution, and change requires care, compassion, and an innovative view to modify the status quo.
          You amazing caregivers are all such critical elements in the recovery and rehabilitation of our wounded, ill, or injured troops.  Consider speaking on panels, sharing your experiences, and taking a good look at the lessons learned and the alternatives you would suggest if given the opportunity. We may not all have public forums like yesterday's, but you do have the ability to speak out here and to share your thoughts safely and without judgement.  Our nation is woefully unaware of the family/friend assistance required for the continuum of care. Please consider sharing it whenever you can.
          We talked on the way home that each time a caregiver speaks about their daily lives, it changes the preconceived notions of those listening.  My belief is that those present yesterday will not view Caregivers with a singular label or visual in the future, but instead see real people who need compassionate, well-informed people to help alter the way things have always been done.  
          Brava to both women for their candid and compassionate rhetoric on behalf of their vets!  Now the focus shifts to the participant group to take those challenges to heart and create momentum and action for improvement. 
          We all hope the timing is very soon!
All my best,
Linda

The Dreadful Power of Words

I cannot help but see the pain and suffering written about on the forum, and which is caused by words.
I noted particularly two instances. One woman who wrote about her husband being told that, ‘he did not deserve his disability rating,’ if I remember that correctly. The other was a woman who was told she was ‘drug seeking’ when she was in pain.
It is hard enough to deal with this kind of thoughtless, rude and spiteful behavior when we are feeling good and able to cope with life. For someone who is already dealing with overwhelming problems, words like this can send them perilously close to the edge. What our loved ones suffer, we suffer with them and for them.
I sat wondering why people have to be so cruel, angry or mean spirited as to have to inflict this kind of pain on others. These are obviously not ignorant or poorly educated people. If they were, their words would not carry as much weight. These are people who are intelligent enough to hold down a job, have got some kind of formal education, and are in a position to inflict hurt. Why do they? What do they get out of this? I can only assume that it is some kind of power trip. They get their thrill on having power over others. Sadly it is the same kind of power trip that abusers use to keep abusing their wives or children or their animals. These people are weak inside. They have no power over self, so they use what they have to power over others.
It is a tragedy that they are in positions to cause so much pain to those who least deserve it. I wonder how many suicides have been caused by spiteful and twisted remarks to people who have no ability to see these words for what they are – painful evidence of a soul in torment because it cannot deal with its own junk.
It takes the power of many strong and supportive words to help undo the damage caused by one malicious word. We caregivers spend our days offering kind, gentle and supportive words to our Vets and our families, yet many still have time to offer support to others. It is only by this that we survive.
Our words are important and certainly they are not the least of all the other important things we do.

How true is this?

The following lyrics are to a current popular song. It played over and over in my head last night. Unfortunately in my mind it was playing because I truly felt that his song could be directly  used not as a song from a  man to a woman but by how our Vets felt/still fell about the United States and how they are treated by the VA once they are done sucking the life out of them. Please excuse some language but I copied the lyrics directly.

Easy come Easy go
That's just how you live oh
Take take take it all
But you never give,
Should of known you were trouble
From the first kiss had your eyes wide open, ( When they enlisted)
Why were they open?
Gave you all I had
And you tossed it in the trash,
You tossed it in the trash, you did.

To give me all your love is all I ever asked cause what you don't understand, is id catch a grenade for ya.
Throw my hand on the blade for ya,
Id jump in front of a train for ya.
You know I'd do anything for ya.
See I would go through all this pain take a bullet straight through my brain.
Yes I would die for ya baby, but you won't do the same.  ( Can’t even get the help they need)

Black, black, black and blue beat me till I'm am numb tell the devil I said hey when you get back to where you're from.
Bad women bad women   (substitute policies and red tape here)
That's just what you are yeah
You smile in my face than rip the breaks out my car. (offer help but don’t deliver)
Gave you all I had and you tossed it in the trash, you tossed it in the trash yes you did. To give me all your fucking love is all I ever asked but what you don't understand is id catch a grenade for ya.

Throw my hand on the blade for ya, Id jump in front of a train for ya. You know I'd do anything for ya. Listen babe I would go through all this pain take a bullet straight through my brain. Yes I would die for ya baby. But you won't do the same. If my body was on fire ooh you would watch me burn down in flames. You said you loved me you're a liar cause you never ever ever did baby...

I saw a group of about a dozen young boys standing outside the recruiters office yesterday and I am ashamed to say that all I wanted to do was beg them to run away and not enlist for this life.

Sad but how true is this?