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