Category Archives: caregiver

A Busy Month

February 2015 was filled with travel.

I had one day between each trip to unpack, wash laundry, and repack before catching the next flight out.

We started the month with an Operation Heal Our Patriots reunion at the Billy Graham Training Center at The Cove in Asheville, NC. We reconnected with our friends from Week 7 along with OHOP staff members (thanks, Jean Claude for the delicious meals!) and attended sessions on marriage, TBI, and PTSD.

Read more about Operation Heal Our Patriots:

Video Reuniting Veterans

Military Couples Encouraged, Challenged During Reunion

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Week 7

The following week I flew to DC to participate in the Hidden Heroes Impact Forum for the Elizabeth Dole Foundation along with several other caregivers. The forum brought together members from public, private, and nonprofit organizations to address gaps in services for caregivers, identify the problems, and draft real solutions.

The interest shown by all participants was validating and reassuring. We shared our personal stories and led the discussions regarding our needs and pitfalls in current programs. We worked within our groups to develop viable strategies to start making solid improvements for the caregiver community.

Learn more about the Impact Forums here:

Time to Give Hidden Military Heroes Their Due

Leading Experts and Advocates to Collaborate on Critical Caregiving Issues Through Elizabeth Dole Foundation Impact Councils

Senator Elizabeth Dole Convenes Leading Experts and Advocates Around Critical Caregiving Issues

Hidden Heroes: America’s Military Caregivers

Elizabeth Dole Foundation

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Dole Fellows L to R Melissa Johnson, Jennifer MackInday, Blair Hughes, Shannon Tuimaleali’fano, Virginia Peacock, Jessica Allen, Senator Elizabeth Dole, Melissa Comeau, Emery Popoloski

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Panel Members L to R Melissa Johnson, Betty Easley, Blair Hughes, Virginia Peacock, and moderator Lynda Davis

Sean and I rounded out the month by attending Challenge Aspen Military Opportunities Couples Retreat in Snowmass, CO. Sean had the opportunity to ski with his friend and guide Jeff, and we met several new couples. Cole and I hung out around the lodge and caught up on some reading, writing, and napping. We always love our time in the Snowmass area!

Read more about Challenge Aspen and CAMO:

http://challengeaspen.org/military/

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Sean, Jeff, and Cole

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Sean and Jeff headed out for the afternoon

 


Searching for…me

Our society largely defines us by our professions. Children are often asked, “What do you want to be when you grow up?” High school students take interest inventories and aptitude tests to help channel their ambitions toward strengths and passions. People want to know which college they have selected, which major course of study. Adults ask one another, “What do you do?” or “Where do you work?” upon introduction.

We are what we do. How, then, do we deal with losing that identity when our lives take a sudden turn?

My aspirations as a child included: nurse, cowgirl, clown, waitress, and teacher. After high school I pursued my BS in Elementary Education and Special Education. I was a young mother with an infant and a toddler at home, attending school during the day and studying into the wee hours of the night once the babies were in bed. I worked hard for that degree and completing it filled me with pride.

I spent several years working in an aide position and supplementing my hours and income by also substitute teaching, tutoring, and waiting tables as I worked my way into a full-time salaried teaching position in the district.

Eventually, I landed in a first grade classroom—which is where I had wanted to be from the start. I loved working with those little ones and watching their light bulbs come on throughout the school year. I enjoyed decorating my classroom, studying the curriculum, and writing lesson plans. I thrived in a creative environment where there was always something new to learn, and where I could share my enthusiasm for learning with 25 little brains ready to soak it all up. Reading, writing, ‘rithmetic…helping them become readers and writers.

Indeed, I have always been a learner. I was the child ready for school to start again before late July. I loved my Big Chief tablets and No. 2 pencils. There is a special kind of excitement when you open a brand new box of crayons. While I participated in the obligatory back-to-school protests throughout August, I was secretly excited about having a new desk, freshly laminated nametags, lockers, schedules…and mandatory library visits!

So, when I resigned my position in 2010 to stay home and care for Sean, it was devastating.

We were sitting the emergency room in the dark waiting for the pain medications to calm Sean’s migraine. I had called and asked my principal to arrange a substitute for the afternoon after discovering Sean in bed, confused and in pain, during my lunch break. ER trips were becoming part of our routine, as was calling at the last minute and requesting a sub to cover my room so I could handle an emergency with Sean. As I sat listening to the ticking of the clock on the wall I was hit with my new reality: I could not continue down both these paths, something had to give.

I felt my life was falling down around me and I was helpless to stop it. We were all struggling to keep moving forward. Sean was calling me multiple times a day while I was teaching, or coming into the school with me when he needed more supervision. I could no longer keep my head above water by pretending I could manage it all.

Leaving was devastating. I tried to put on my happy teacher face and pretend it was all for the best (which it was, although I didn’t feel that way). Stepping down from something I had worked so hard to achieve and thoroughly enjoyed doing was a stab to my heart.

Sean was a valuable volunteer in the kindergarten classrooms and wanted to continue when he was feeling well enough. I supported that decision, but it felt like he was getting my job, my friends and coworkers, my space. When I would express my feelings about giving up my job, he would feel guilty and I would end up comforting him because I resigned instead of having my own loss validated and soothed.

This fall, back to school has left me grieving. I even cried in the school supply aisle the other day, right in front of the boxes of 24 crayons. I feel a deep and pervasive loss, a longing I cannot stop. I know that sounds silly. People have suggested all types of fill-ins from volunteering, to subbing, to tutoring…but those don’t “feel” right for me right now. I walked into my old building the other morning and heard the familiar morning greetings and saw the friendly faces. My heart fell to my feet. I can’t fill this void with half-hearted substitutes, and I’m not even sure any more that this is what I’m meant to do.

I don’t regret leaving my job. It was a necessary step to aid in Sean’s recovery and I am proud to be a vital part of that process.

I realize now that this loss I’m struggling with is Sean’s loss, too. He gave up his civilian and military careers after his injury. He wrestles with his identity and what his future might hold.

And I do realize that my life is more than my profession or my (self-imposed) definition. My identity is multifaceted and perhaps now I will be open to learning more about who I am and my true purpose in this life as I face the unknown path ahead.

Sidebar:  I wrote about back to school success for Family Of a Vet:  7 Tips for Back to School Success

Family Of a Vet has an incredible *free* packet for teachers and parents about PTSD and TBI:  Parent and Teacher Packet


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


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


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

In Honor of National Family Caregivers Month

Caregiver stress fact sheet from Womens Health
Caregiver stress is the emotional and physical strain of caregiving. It can take many forms. For     instance, you may feel:

  • Frustrated and angry taking care of someone with dementia who often wanders away or becomes easily upset
  • Guilty because you think that you should be able to provide better care, despite all the other things that you have to do
  • Lonely because all the time you spend caregiving has hurt your social life
  • Exhausted when you go to bed at night  

5 Ways to Bring Yourself Back from Burnout by Martha Beck from O, The Oprah Magazine

I believe my stage is “Hitting the Wall.”  I did learn that needing less activity and more sleep is normal in this stage–no more guilt!

Relationships and PTSD from the Department of Veterans Affairs

Post-Traumatic Stress and a Traumatic Brain Injury strain a marriage from Veterans Voices

So sad and so true.


Caregiving and TBI

Caregiving for Someone with a TBI: A Unique Experience
Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, talks with BrainLine about learning to be a caregiver for her son with TBI.

Sarah Wade: A Military Wife and Caregiver’s Story
Military wife, caregiver, and brain injury advocate Sarah Wade talks with BrainLine Military about her husband’s injuries sustained while combat in Iraq.

Excerpts from BrainLine’s webcast Caregiving and TBI: What You Need to Know. You can find other segments from the webcast here.