Saturday, April 16, 2011

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,




  1. Incredibly well put, Linda. However, it is hard to be the 'teacher' as well as the caregiver and the parent. I absolutely agree that if we could somehow work all together, we might be able to get it across to the American public what dealing with PTSD is really like. I understand where the comment about 'the government taking care of the troops' comes from. It is a total misconception, driven in part, by the media attention on things such as the recent Joining Forces campaign. The focus is on what is done, NOT on what is not done.
    The caregivers who are in the worst shape have little time to share what is going on in their lives. What else can we do to support them so that they can breathe and share their story?

  2. Hi I run Living With PTSD and TBI blog;

    I came across this as someone posted on FB and boy can I agree. Some days are mostly just tolerable. Others are like a living hell..and its just over and over again. I have fought back turning our situation into something positive, but there are days where I would like to sling those "positives" out the window! Haha! I saw where Ocean posted about the joining forces campaign and wonder if this is going to help the troops after they come home? Or is it all for show like some of the other programs out there? I think often times we are caught not knowing which role to take...mother, caregiver, evil dictator, or wife. Doesn't seem to fall in the wife category anymore. However, I married my husband through sickness and in health. I don't want him to become another statistic in a VA file somewhere. Thanks for posting this and please do feel free to check me out as well. Best wishes to a sister of post war~ USM

  3. i want to spin this a little for those reading that don't actually know the direction some vets go. this is a bit of my story in response to each situation which i've lived in similar circumstance. for all of you doing the caregiving i hold you in high esteem and wish you the best of love. i think that may be the greatest factor that sees people through.
    ***i can't believe i yelled at him/her. it's not their fault. they didn't sign up for this, i did. i need help... i promise i'm not being quiet to punish you or anyone. it's just that i can't tell you what is in my mind. i know you don't deserve this. please divorce me. and he does, after he has the affair that creates his son while i'm in treatment for depression. i need help... years go by, BVA, endless paperwork to prove what i need. denied. offer more evidence within 30 days or your case will be closed. denied. take what you can get. maybe it's me, maybe i'm wrong, maybe i'm not worth help. that must be it. i did everything they asked. was i too clean? am i too smart? why don't they listen to me? and why am i so stupid that i keep asking? i am still a soldier. i am lost... children don't deserve to be brought into this kind of life. when i tell my family i will not be having children, they cry. they tell me i can when i know it's no good. i spare a life and yet i am reminded that because i am a woman it is different. now not only is my mind wrong, so is my body. there is silence here. the shades are drawn so they don't know out there that i never leave unless i absolutely have to. i am shameful. i am a waste. the only sound comes from a white noise machine designed to block out the others to alleviate some fear. even my phone on vibrate scares me straight through. i used to think the cracks in this heart were God's way of letting in more light. now the pieces, so brittle, so many, scatter like ash to the wind where the light used to come in. i am a female veteran. like you, i am forgotten because the silence wins.

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  5. Gratitude

    There were beautiful flowers with gorgeous buds, but I missed them totally
    as I concentrated on the thorns.

    There were incredible rainbows, but it was as if I were blind because I
    couldn’t see them as I frowned about the rain.

    There was a roof over my head and food on the table, but instead of
    appreciation I just worried about paying the bills.

    There were people in need and I didn’t notice them, instead I worried about
    petty, minor details of life.

    There was a time that I was quite healthy, but I missed it’s importance as
    I stayed caught up in the rat race of life.

    I have experienced love, kindness and joy, but I never stopped to be
    thankful for them, I instead took them for granted.

    I have experienced parenthood, with all its ups and downs, but I never
    stopped to fully realize these were gifts not given to everyone.

    I have experienced occasional intense physical pain, but I never considered
    the people that live with pain every moment of their lives.

    There are people dying at this moment that would trade places with my
    abilities and my health in a split second.

    Maybe I am finally learning that life does get hard, but when it does you
    just put one foot in front of the other and go on anyway.

    And today I will notice the flowers, the rainbows, the children, my
    painlessness, my home and food, and be sure not to complain about my health.

    by: Debbie Wilson/ Debbie Wilson’s Brain Injury Blog