Tuesday, April 26, 2011

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.

Friday, April 22, 2011

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!

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,