Category Archives: PTSD

23 Lives a Day

22 veterans +1 active duty service member take their lives every day. 23 lives a day, by their own hands.

One veteran takes his or her own life *EVERY 65 MINUTES* in this country. In the time it takes you to watch a television show or eat a meal, one veteran takes his or her own life.

It’s important to note that this statistic, while shocking, includes data from only 21 states and from veterans who are receiving VA care.  It does not include National Guard and  Reserve populations ( the majority of those deployed  to Iraq and Afghanistan were NG/R).  It does not include homeless veterans or suicides that may appear to be accidents (drunk driving accidents or overdoses). The actual statistic could realistically be 44 or 66 a day.

Tonight, my heart is heavy with the knowledge of one such veteran and the family of four he left behind. His wife is a dear friend of mine. We’ve had the opportunity to meet on more than one occasion–to hug, laugh, and cry together. This family has selflessly fought for and assisted numerous  veterans while simultaneously navigating and battling frustrating systems for themselves.

You can make a difference in many ways. Say “thank you” to the veterans you know, or those you meet. Learn about issues affecting our nation’s veterans. Find out how you can get involved locally by contacting veterans organizations (VFW, American Legion, Disabled American Veterans), churches, VA hospitals, or nursing homes. Visit http://www.familyofavet.com or http://www.facebook.com/lifeaftercombat to learn more about those who serve our country and the families that stand beside them. Share this information and help us raise awareness. Veterans make up approximately 1% of the US population–we can’t get this information out without your help.

If you would like to help this family by making a donation (100% of your tax-deductible donation will go directly to the family) please use the link below.

http://tinyurl.com/FOV-TN-Family

Need help? Contact the Veterans Crisis Line 1-800-273-8255 and Press 1, or send a text message to 838255. http://www.veteranscrisisline.net/

Friends and family members can call 888-823-7458 to get help assisting the veteran. http://www.mirecc.va.gov/coaching/


Hidden Heroes

The blisters have nearly healed. It’s been almost three weeks since I traveled DC with a marvelous group of nearly 60 men and women who are part of the Elizabeth Dole Foundation’s Caregiver Fellows Program.  During this trip I reconnected with old friends and met new friends I’ve only known online.  We spent time sharing our stories and experiences with one another and forging a special bond that can only be felt by those who have been through similar experiences.  And we walked for miles on the endless marble and concrete that is Capitol Hill.

We spent Thursday on Capitol Hill meeting individually with our congressional leaders to present the findings of the newly released RAND study Hidden Heroes:  America’s Military Caregivers and to explain why this study matters, why these statistics are more than numbers on a page, and to give a face to the 5.5 million military and veteran caregivers in our nation.

That morning Senator Patty Murray introduced S.2243 – Military and Veteran Caregiver Services Improvement Act of 2014. A related bill was previously introduced in the House by Representative Elizabeth Etsy. H.R.3383 – Caregivers Expansion and Improvement Act of 2013. You can watch Senator Murry introduce her bill here Murray Introduces Major Military and Veteran Caregiver Bill.

On Friday we attended a Joining Forces event at the White House where First Lady Michelle Obama and Dr. Jill Biden, along with former First Lady Rosalynn Carter and Senator Dole, announced programs and initiatives designed to support caregivers of the nation’s veterans and active duty service members. You can watch these announcements at this link Support for Military and Veterans’ Caregivers.

While being invited to the White House (and sitting in the front row!) was immensely exciting, the event had a larger impact as I looked around the White House reception and realized that everywhere I looked was the familiar face of a caregiver.  For the first time ever we had a collective voice on a national level, a voice that reached far beyond the walls of the White House into the homes of other caregivers who, like us, have been fighting for years to be heard.

Empowering.  To be part of a group gathered with common concerns and goals working to make changes in our own lives, and the lives of others.  To reflect on the past eight years and recall how utterly alone I felt when this journey started.  To realize, at last, it was time to address the needs of the caregivers.  We will not be still.

Learn more about the Elizabeth Dole Foundation and Hidden Heroes:  The National Coalition for Military Caregivers at www.elizabethdolefoundation.org.

You can read the entire RAND report entitled  Hidden Heroes:  America’s Military Caregivers at this link http://www.rand.org/pubs/research_reports/RR499.html.

#DoleFellows #hiddenheroes

Cherry Blossoms in full bloom

Cherry Blossoms in full bloom

Dole Fellows with Congresswoman Susan Davis, Senator Elizabeth Dole, and Congresswoman Nancy Pelosi

Dole Fellows with Congresswoman Susan Davis, Senator Elizabeth Dole, and Congresswoman Nancy Pelosi

White House

The White House

Front and nearly center in the East Room

Front and nearly center in the East Room


I’m melting!

I’m tired, therefore, this post isn’t up to par.  I’m including it simply to satisfy my compulsive need to tell the complete story in chronological order.

Ohhh! You cursed brat! Look what you've done! I'm melting! Melting! Oh, what a world! What a world!

Ohhh! You cursed brat! Look what you’ve done! I’m melting! Melting! Oh, what a world! What a world!!

After nearly seven years (long, incredibly frustrating years), Sean officially retired from the US Army Reserve on February 11, 2014. Hallelujah!

A process that consumed our lives for many years…a bittersweet ending for a soldier who dedicated his life to serving his country…a relief for his wife who has grown weary of fighting systems that should be designed to help.

So, while the Oz saga from Ft. Riley has played itself out and the Wicked Witch has met her demise (if you’ve been following our blog, this makes sense, I swear), it was not without getting in a final jab. I was required to become Sean’s legal guardian in order for him to “obtain any and all retirement benefits during his lifetime” due to an incompetency ruling.

Recap:

March 2007- ineligible for medical board due to “unexplained physical symptoms” (undiagnosed PTSD and TBI)

July 2007 – PTSD diagnosed

December 2007 –  TBI screening

March 2008 – TBI diagnosed, medical evaluation board (MEB) initiated

April 2008 to January 2010- nooooooothing……

January 2010 – testified before House Committee on Veterans Affairs regarding “Seamless Transition” between DoD and VA systems

February to May 2010 – multiple appointments

June to November 2010 – multiple complaints to get MEB paperwork completed

2011 – mostly nothing……

<insert intermission>

January 2012 – OOPS, case was terminated in June 2011 (Ft. Riley claimed we missed a deadline that we were not informed of, we were not notified that the case had been terminated)

June 2012 – records sent to Ft. McCoy to start new MEB under IDES

<insert theme from “Jeopardy”>

February 2013 – records arrived in Ft. Carson

March to May 2013 – repeat all examinations, tests, and paperwork from 2010 as it was all expired

June 2013 – MEB NARSUM sent to Physical Evaluation Board (PEB)

December 2013 – PEB rated 100% vision loss due to TBI, and 70% PTSD

January 2014 – notified that due to incompetency statement in NARSUM a legal guardian would need to be appointed, POA was not sufficient for payment/benefit purposes

February 2014 – officially medically retired

Bout damn time.


Tough Pill to Swallow

IMG_6933

 

Look at that mess of pills.  Some are shiny or brightly colored, the white ones come in different sizes.  They all go into Sean’s stomach every day.  That’s right, this is *1* day’s worth of medication.  You would think that with all these pills he’d be feeling pretty darn good every day.  I’ve seen first hand how each pill affects him, and the adverse effects when he does not take them.  I believe that (at least to some degree) they are helping him, and his doctors agree that he’s been more stable than not in the past two years.  Sean himself doesn’t want to make major changes to his medication regimen because he remembers how he felt and acted pre-medications.

2013 was a long year.  Sean had more pain than normal, experienced more periods of depression, contracted a nasty unidentified illness while in Mexico (he didn’t even drink the water) that took months of recovery, was diagnosed with gastroparesis (stomach is too slow to empty), and had more trouble generally accomplishing his goals.  We scaled way back, while still trying to participate in a few events to get ourselves engaged.  The past two months his migraines have been out of control and his pain levels over all have consistently increased.  The pain meds don’t seem to be helping the way they should.  I feel very helpless.  Tomorrow he will be seeing his doctor and I have been reviewing his daily health notes.  It’s sad to see the marked decline since October.  And scary.

I have accepted that we will have good days followed by bad days and that the cycle will continue.  I no longer panic every time he has a difficult day or a new symptom or weird behavior.  But when I see a consistent march downward, it frightens me.  Not because I fear the immediate future, but because no one knows what his health will be a year from now, or five years, or ten.  Is this a sign of what’s to come?

Last night was a particularly bad night.  Incredible pain.  Pain meds were no help.  He was up and down all night long, unsteady on his feet and needing help getting around.  He finally went to sleep around 7 AM this morning.  His poor dog was up all night, too, worrying over him and trying to let me know that his dad wasn’t feeling well.  I am praying they both sleep well tonight.


Media Links

Fort Hood Sentinel

Army takes 9 medals in cycling at DoD Warrior Games

http://www.forthoodsentinel.com/story.php?id=16081

DVIDS–Defense Video & Imagery Distribution System

Army cyclists roll their way to the podium

https://www.dvidshub.net/news/167733/army-cyclists-roll-their-way-podium#.VZWZxPlViko

Video: Cycling – U.S. Army Veteran Sean Johnson – 2015 Warrior Games

https://www.dvidshub.net/video/409423/cycling-us-army-veteran-sean-johnson-2015-warrior-games#.VZVAyPlViko

Video: 2015 Department of Defense Warrior Games WTC Version

https://www.dvidshub.net/video/409422/2015-department-defense-warrior-games-wtc-version#.VZWT6flViko

NPR

Connecticut Woman Creates Non-Profit to Help Military Caregivers

http://wnpr.org/post/connecticut-woman-creates-non-profit-help-military-caregivers#stream/0

Washington Times

Wounded Warrior Caregiving Hero: Meet Melissa Johnson

http://www.washingtontimes.com/news/2015/jun/8/wounded-warrior-caregiving-hero-meet-melissa-johns/

Warrior Care Com

2014 Warrior Games–Cycling Competition

https://m.youtube.com/watch?feature=youtu.be&v=FuLefPFkdBc

DOD News

Competing at the Warrior Games

https://www.youtube.com/watch?v=CoZLGqTWfKE

Argus Leader

Warrior Games keep blind vet in touch with Army

http://www.argusleader.com/story/news/2014/09/30/games-keep-blind-vet-touch-army/16465753/

Aberdeen American News

Aberdeen man riding into history

http://www.aberdeennews.com/sports/column-aberdeen-man-riding-into-history/article_793d3b7e-2abb-5f5f-9232-b894181314e7.html

Warrior Games possible in Aberdeen veteran’s future

http://m.aberdeennews.com/news/local/warrior-games-possible-in-aberdeen-veteran-s-future/article_a36ed51a-a459-5a69-8e3c-ace5b47e3777.html?mode=jqm

Local veteran to compete in Warrior Games this fall

http://m.aberdeennews.com/news/local/local-veteran-to-compete-in-warrior-games-this-fall/article_0b08cf47-338c-513c-a734-4faf1f935137.html?mode=jqm

DVIDS–Defense Video & Imagery Distribution System

Staff Sgt. Sean Johnson – 2014 Warrior Games

http://www.dvidshub.net/video/363748/staff-sgt-sean-johnson-2014-warrior-games#.VCw52_ldWSo

‘You may be Wounded, Ill or Injured but You’re not Defeated,’ tandem cyclist says at US Army Warrior Trials
http://www.dvidshub.net/news/133430/you-may-wounded-ill-injured-but-youre-not-defeated-tandem-cyclist-says-us-army-warrior-trials#.U-qb4vldWSr

Vision impairment won’t stop wounded veteran at Warrior Games Trials
http://www.dvidshub.net/news/133094/vision-impairment-wont-stop-wounded-veteran-warrior-games-trials#.U-qbbfldWSr

Rapid City Journal

Injury gives snowboarder new purpose

http://rapidcityjournal.com/news/local/injury-gives-snowboarder-new-purpose/article_365ea25a-8777-5e94-aa2f-325bfd93641b.html

JOHNSON: Recognizing Military and Veterans Caregiver Month

http://rapidcityjournal.com/news/local/communities/sturgis/johnson-recognizing-military-and-veterans-caregiver-month/article_5470745f-95c8-5b82-bb65-79706c4cee6b.html

The Daily Plainsman

Spirit of Dakota announces nominees

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=24185&page=75

Finding help at home: Melissa came home, to help Sean come back home

http://www.plainsman.com/v2_news_articles.php?heading=0&page=72&story_id=22598

Aberdeen American News

Aberdeen woman selected for Elizabeth Dole Fellows program

http://www.aberdeennews.com/news/local/aberdeen-woman-selected-for-elizabeth-dole-fellows-program/article_a83bd1db-ad68-570a-92fc-94fec5be9aee.html?_dc=650225048884.7494

Local veterans protest moving county services

http://m.aberdeennews.com/news/local/veterans-protest-moving-county-services/article_383bab94-9353-516e-8ac4-1063a85f1ac3.html?mode=jqm

KDLT News

Purple Heart Recipient Has Home Remodeled

http://www.kdlt.com/index.php?option=com_content&task=view&id=29146&Itemid=57

Soldiers Magazine

The Depths of Love:  Chronicling the Journey from Army Spouse to Caregiver

Story by:  Elizabeth M. Collins, Soldiers Live

http://soldiers.dodlive.mil/2013/11/the-depths-of-love-chronicling-the-journey-from-army-spouse-to-caregiver/

Bonus Blog by Brannan Vines:  What I Wish I’d Known When I Started Life as a Caregiver

http://soldiers.dodlive.mil/2013/11/what-i-wish-id-known-when-i-started-life-as-a-caregiver/

To The Point

The Soldiers Who Are Making it Home

with host Warren Olney on  KCRW Radio

On Memorial Day, Americans honor those who have died serving their country, but what about those who’ve survived? The wars in Iraq and Afghanistan have the lowest casualty rates of all American conflicts. More than 95% of the wounded are coming home. Many have survived injuries that were deadly in previous wars, but they’ve been left with life-long conditions requiring high-tech medical care. Can the Veterans’ Administration cope with unexpected numbers and very high costs? What about loved ones who’ve become caregivers full time?

http://www.kcrw.com/news/programs/tp/tp130527the_soldiers_who_are

CBS News

Story by: Michelle Miller

Caregivers of US Veterans Bear Scars of War

http://www.cbsnews.com/news/caregivers-of-us-veterans-bear-scars-of-war/

Treating Family Members Suffering from PTSD

http://www.cbsnews.com/videos/treating-family-members-suffering-from-ptsd/

Military.com

Story by: Heather Sweeney and Ward Carroll

Challenges Remain in Warrior Transition Units

http://www.military.com/daily-news/2012/10/24/challenges-remain-in-warrior-transition-units.html

Aberdeen American News

Group working to modify disabled vet’s home in Aberdeen

http://articles.aberdeennews.com/2012-09-26/news/34087491_1_aberdeen-fire-and-rescue-452nd-ordnance-jdh-construction

Six years after injury, Aberdeen soldier awarded Purple Heart

http://articles.aberdeennews.com/2012-02-11/news/31053672_1_aberdeen-soldier-mortar-purple-heart-medal

The Daily Plainsman

Local family joins nationwide campaign:  Love letters tell stories of life after combat

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=14711&

Nextgov.com

Poorly Networked Systems Leave Vets on Their Own When Seeking Care

Story by:  Bob Brewin

http://www.nextgov.com/health/2010/01/poorly-networked-systems-leave-vets-on-their-own-when-seeking-care/45778


Western Blind Rehabilitation Center

Sean was accepted into the Comprehensive Neurological Vision Rehabilitation (CNVR) program at the Western Blind RehabCenter (WBRC) in Menlo Park, CA.  On February 21st we flew to California to get him admitted into the program.  Through the VA’s Caregiver Program, I was able to spend the first week and a half at the blind center with Sean to help him adjust and to observe the program. 
The staff and program at WBRC were impressive! We both felt at ease and Sean settled into his routine.  His day included:  Manual Skills where he learned woodworking, ceramics, leatherwork, and gardening; Orientation and Mobility which offered a refresher on his mobility and cane skills along with training on the TrekkerBreeze; Living Skills focused on cooking, cleaning, and using devices such as the Milestone to better organize his day; Visual Skills emphasized using the Victor Reader Stream for his audio books as well as using proper lighting and scanning techniques; CNVR training instructed him in use of the iPad and his computer, and introduced him to Interactive Metronome (IM).  IM uses rhythm to help reset the brain’s timing and to improve a variety of functions including memory, concentration, and focus.  Sean will be continuing IM therapy at home.
Before I returned home we took the Caltrain into San Francisco for the day.  We went to Pier 39 and took a boat tour of the bay around Alcatraz and under the Golden Gate Bridge.
I returned for the family training portion of the program on May 9th.  We met with the neurologist and with Dr. Cockerham and discussed the results of the MRI.  The high-resolution MRI did detect areas of brain damage on the right side in the frontal lobe, temporal lobe, and deep white matter.  While there is not visible damage in the occipital lobe (visual center of the brain) vision travels throughout the brain and all parts of the brain play a role in what the brain sees.  Sean’s damage is on the right side, and his weak eye is his left since vision crosses the brain while it travels to the back of the brain.  Testing indicates that Sean receives very little visual information through his left eye.  When presented with a light bar approximately four feet long with flashing lights, Sean’s eyes responded automatically to lights on the right side, but did not respond or “jump” to any stimuli from the center of his body to the left.  While there is no clear “x marks the spot” answer, I respect that there are things medical science cannot explain and that the doctors were up front and honest.  The instructors who worked with Sean every day did not find any indication of conversion disorder.  At this time continued vision rehab, such as the CNVR program, is recommended for possible improvement over time.  Sean will likely return to the WBRC in 8-12 months.

Overall, we were thrilled with the program and found the staff, training, and accommodations to be top notch!  HUGE thanks to John and Dan of the CNVR program, as well as to Nikki, Anita, Paula, Matt, Tony, Nicole, and all the nursing staff (and anyone I forgot)!


Western Blind Rehab Center, Menlo Park, CA
Playing Black Jack
Pier 39
Sea Lions at Pier 39
Golden Gate Bridge
Sean made dinner in Living Skills
Watering his garden
Working in the shop with Tony
Graduation with Program Manager John Kingston
Technology Class with Dan



Time Off?

I am more than a little insulted by the comment I’ve heard more than once in the past two months, “Are you enjoying your time off?”  Seriously?  Is that what you think I am doing?

I’m a full-time caregiver.  I resigned my position at school because my husband needed my support at home.   We were fortunate that he could come to work with me and offer his services as a volunteer so that I could keep an eye on him and not leave him home alone.  It was a quick fix, and while he still volunteers when he is able, taking him to work with me was not a long term solution.

Yes, I’m at home.  But guess what?  I am working.  Not only am I providing 24 hour support for my husband, I am the Volunteer Coordinator for Family Of a Vet, an AMAZING non-profit organization that is working tirelessly for veterans and familes.  FOV currently has almost 250 Grassroots Volunteers.  Through our website, facebook page, and social media we reach tens of thousands of people each month!  I am on call around the clock to provide support and resources for our members. The past two months have been filled with late FOV nights, and busy days.  Here is a run-down of what I do:

  • advocate for veterans and families
  • locate and provide resources
  • research
  • moderate group rooms online
  • offer ongoing support to our members online and through email and phone calls
  • manage the “virtual” volunteer database
  • coordinate and host the weekly Caregiver’s Edition of our Life After Combat Blog Talk Radio Show
  • coordinate with staff on projects including our blogs, fundraising, website, networking
  • use social media to raise awareness of veterans issues

I may not be working in the conventional sense, but I’m making a difference in the lives of veterans and families.  I am providing the support I wish I’d had six years ago when we started this crazy roller coaster life of uncertainty.

You may think I’m just goofing off, but actually facebook is my office. Family Of a Vet is a non-profit run by veterans and family members who *GET IT* and are trying to reach out to others who are struggling like us to help and offer support and education.

Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.
 
If you know a veteran or loved one that we can help, please encourage them to visit us:
 
On the web – www.familyofavet.com 
On Blog Talk Radio – www.blogtalkradio.com/familyofavet