Greetings!
Yesterday was a fascinating day. With two very special caregivers from Mologne House at Walter Reed Army Medical Center, I attended the DoD/Warrior Transition Care Summit in Leesburg, Virginia after being asked to accompany them and to provide transportation.
You all know that I am humbled and truly respect all caregivers for their unrelenting optimism and perseverance, but rarely have I seen such grace and strength when these women presented their stories. There were five remarkable caregivers on the panel, but I will share my thoughts about the two I accompanied.
One is the sister of a seriously injured Marine and his fulltime caregiver, and at 24 years of age, has poise and presence beyond her years. The other is the mother of a seriously injured female soldier, formerly a successful marketing professional and now fulltime caregiver - articulate and succinct in her thoughts regarding improvement. They were marvelous representatives to share the genuine Caregiving Reality in this setting. And, they both want to be change agents in improving the combat recovery caregiving experience.
Caregivers are so often invisible. Not yesterday, however! The experienced participant group at the Summit listened attentively to the details these two caregivers shared regarding gaps in communication, education, medical care, 'customer service', and specific situations they would not have otherwise known. This information resonated with the group who were gathered to consider and recommend "best practices" to the DoD. The takeaway message: There is simply no One-Size-Fits-All caregiving solution, and change requires care, compassion, and an innovative view to modify the status quo.
You amazing caregivers are all such critical elements in the recovery and rehabilitation of our wounded, ill, or injured troops. Consider speaking on panels, sharing your experiences, and taking a good look at the lessons learned and the alternatives you would suggest if given the opportunity. We may not all have public forums like yesterday's, but you do have the ability to speak out here and to share your thoughts safely and without judgement. Our nation is woefully unaware of the family/friend assistance required for the continuum of care. Please consider sharing it whenever you can.
We talked on the way home that each time a caregiver speaks about their daily lives, it changes the preconceived notions of those listening. My belief is that those present yesterday will not view Caregivers with a singular label or visual in the future, but instead see real people who need compassionate, well-informed people to help alter the way things have always been done.
Brava to both women for their candid and compassionate rhetoric on behalf of their vets! Now the focus shifts to the participant group to take those challenges to heart and create momentum and action for improvement.
We all hope the timing is very soon!
All my best,
Linda
Thursday, March 31, 2011
Sunday, March 13, 2011
The Dreadful Power of Words
I cannot help but see the pain and suffering written about on the forum, and which is caused by words.
I noted particularly two instances. One woman who wrote about her husband being told that, ‘he did not deserve his disability rating,’ if I remember that correctly. The other was a woman who was told she was ‘drug seeking’ when she was in pain.
It is hard enough to deal with this kind of thoughtless, rude and spiteful behavior when we are feeling good and able to cope with life. For someone who is already dealing with overwhelming problems, words like this can send them perilously close to the edge. What our loved ones suffer, we suffer with them and for them.
I sat wondering why people have to be so cruel, angry or mean spirited as to have to inflict this kind of pain on others. These are obviously not ignorant or poorly educated people. If they were, their words would not carry as much weight. These are people who are intelligent enough to hold down a job, have got some kind of formal education, and are in a position to inflict hurt. Why do they? What do they get out of this? I can only assume that it is some kind of power trip. They get their thrill on having power over others. Sadly it is the same kind of power trip that abusers use to keep abusing their wives or children or their animals. These people are weak inside. They have no power over self, so they use what they have to power over others.
It is a tragedy that they are in positions to cause so much pain to those who least deserve it. I wonder how many suicides have been caused by spiteful and twisted remarks to people who have no ability to see these words for what they are – painful evidence of a soul in torment because it cannot deal with its own junk.
It takes the power of many strong and supportive words to help undo the damage caused by one malicious word. We caregivers spend our days offering kind, gentle and supportive words to our Vets and our families, yet many still have time to offer support to others. It is only by this that we survive.
Our words are important and certainly they are not the least of all the other important things we do.
I noted particularly two instances. One woman who wrote about her husband being told that, ‘he did not deserve his disability rating,’ if I remember that correctly. The other was a woman who was told she was ‘drug seeking’ when she was in pain.
It is hard enough to deal with this kind of thoughtless, rude and spiteful behavior when we are feeling good and able to cope with life. For someone who is already dealing with overwhelming problems, words like this can send them perilously close to the edge. What our loved ones suffer, we suffer with them and for them.
I sat wondering why people have to be so cruel, angry or mean spirited as to have to inflict this kind of pain on others. These are obviously not ignorant or poorly educated people. If they were, their words would not carry as much weight. These are people who are intelligent enough to hold down a job, have got some kind of formal education, and are in a position to inflict hurt. Why do they? What do they get out of this? I can only assume that it is some kind of power trip. They get their thrill on having power over others. Sadly it is the same kind of power trip that abusers use to keep abusing their wives or children or their animals. These people are weak inside. They have no power over self, so they use what they have to power over others.
It is a tragedy that they are in positions to cause so much pain to those who least deserve it. I wonder how many suicides have been caused by spiteful and twisted remarks to people who have no ability to see these words for what they are – painful evidence of a soul in torment because it cannot deal with its own junk.
It takes the power of many strong and supportive words to help undo the damage caused by one malicious word. We caregivers spend our days offering kind, gentle and supportive words to our Vets and our families, yet many still have time to offer support to others. It is only by this that we survive.
Our words are important and certainly they are not the least of all the other important things we do.
Sunday, March 6, 2011
How true is this?
The following lyrics are to a current popular song. It played over and over in my head last night. Unfortunately in my mind it was playing because I truly felt that his song could be directly used not as a song from a man to a woman but by how our Vets felt/still fell about the United States and how they are treated by the VA once they are done sucking the life out of them. Please excuse some language but I copied the lyrics directly.
Easy come Easy go
That's just how you live oh
Take take take it all
But you never give,
Should of known you were trouble
From the first kiss had your eyes wide open, ( When they enlisted)
Why were they open?
Gave you all I had
And you tossed it in the trash,
You tossed it in the trash, you did.
To give me all your love is all I ever asked cause what you don't understand, is id catch a grenade for ya.
Throw my hand on the blade for ya,
Id jump in front of a train for ya.
You know I'd do anything for ya.
See I would go through all this pain take a bullet straight through my brain.
Yes I would die for ya baby, but you won't do the same. ( Can’t even get the help they need)
Black, black, black and blue beat me till I'm am numb tell the devil I said hey when you get back to where you're from.
Bad women bad women (substitute policies and red tape here)
That's just what you are yeah
You smile in my face than rip the breaks out my car. (offer help but don’t deliver)
Gave you all I had and you tossed it in the trash, you tossed it in the trash yes you did. To give me all your fucking love is all I ever asked but what you don't understand is id catch a grenade for ya.
Throw my hand on the blade for ya, Id jump in front of a train for ya. You know I'd do anything for ya. Listen babe I would go through all this pain take a bullet straight through my brain. Yes I would die for ya baby. But you won't do the same. If my body was on fire ooh you would watch me burn down in flames. You said you loved me you're a liar cause you never ever ever did baby...
That's just how you live oh
Take take take it all
But you never give,
Should of known you were trouble
From the first kiss had your eyes wide open, ( When they enlisted)
Why were they open?
Gave you all I had
And you tossed it in the trash,
You tossed it in the trash, you did.
To give me all your love is all I ever asked cause what you don't understand, is id catch a grenade for ya.
Throw my hand on the blade for ya,
Id jump in front of a train for ya.
You know I'd do anything for ya.
See I would go through all this pain take a bullet straight through my brain.
Yes I would die for ya baby, but you won't do the same. ( Can’t even get the help they need)
Black, black, black and blue beat me till I'm am numb tell the devil I said hey when you get back to where you're from.
Bad women bad women (substitute policies and red tape here)
That's just what you are yeah
You smile in my face than rip the breaks out my car. (offer help but don’t deliver)
Gave you all I had and you tossed it in the trash, you tossed it in the trash yes you did. To give me all your fucking love is all I ever asked but what you don't understand is id catch a grenade for ya.
Throw my hand on the blade for ya, Id jump in front of a train for ya. You know I'd do anything for ya. Listen babe I would go through all this pain take a bullet straight through my brain. Yes I would die for ya baby. But you won't do the same. If my body was on fire ooh you would watch me burn down in flames. You said you loved me you're a liar cause you never ever ever did baby...
I saw a group of about a dozen young boys standing outside the recruiters office yesterday and I am ashamed to say that all I wanted to do was beg them to run away and not enlist for this life.
Sad but how true is this?
Sunday, February 20, 2011
How Can I Give My Children Their Childhood Back?
At the end of the day the things that I really wish I could just make better are the things that should be a given. I want to give my children their childhood back. How do I go back and make things normal for them?
Nobody dreams growing up that their happy ever after of a picket fence and kids will really be struggle after struggle. The things we took for granted growing up are so out of reach for my children. Dad waving as your up to bat. Cheering you on as you serve that volleyball over the net. Standing there applauding as you deliver your lines on the school play. Tucking you in at night and reading you a bed time story.
The reality is Dad is overwhelmed with despair. He feels like he is no longer a man because he can't staunch the flow of tears. He has such high expectations of them because his life has shown him that even when you do it right life is unfair. He can't give them hope because he himself has NONE!!!
I want my children to have the memories of family vacations and they do have some but they are with their friends families or my parents. The memories of ours consist of packing the car and then not leaving because Dad just can't face the world. He loves them and they know it. But they also know we don't make any loud sudden noises to include laughing. That is so NOT what I dreamt of for my children!
How do you explain to them when they ask but Daddy was in the Army why don't they fix him? Out of the mouths of babes right? The battle that is waged on a daily basis in our home is so time consuming that not only do they have little input or support from their father but their mother is exhausted and short tempered as well.
Life is so unfair. I know we are not alone and while that gives a sick sense of comfort mostly it just makes me feel sick. This generation of our children will grow up and have their children. What kind of long term cycle is this creating? What lingering issues will this cause? What kind of havoc will this cause for my children and their self esteem in the years to come.
The upside is that their father is alive but at this rate and the constant fight for resolution for him I don't even know how long that will be a reality and then what new issues will that bring? At least they know their father loves them and of that they have no doubt.
Nobody dreams growing up that their happy ever after of a picket fence and kids will really be struggle after struggle. The things we took for granted growing up are so out of reach for my children. Dad waving as your up to bat. Cheering you on as you serve that volleyball over the net. Standing there applauding as you deliver your lines on the school play. Tucking you in at night and reading you a bed time story.
The reality is Dad is overwhelmed with despair. He feels like he is no longer a man because he can't staunch the flow of tears. He has such high expectations of them because his life has shown him that even when you do it right life is unfair. He can't give them hope because he himself has NONE!!!
I want my children to have the memories of family vacations and they do have some but they are with their friends families or my parents. The memories of ours consist of packing the car and then not leaving because Dad just can't face the world. He loves them and they know it. But they also know we don't make any loud sudden noises to include laughing. That is so NOT what I dreamt of for my children!
How do you explain to them when they ask but Daddy was in the Army why don't they fix him? Out of the mouths of babes right? The battle that is waged on a daily basis in our home is so time consuming that not only do they have little input or support from their father but their mother is exhausted and short tempered as well.
Life is so unfair. I know we are not alone and while that gives a sick sense of comfort mostly it just makes me feel sick. This generation of our children will grow up and have their children. What kind of long term cycle is this creating? What lingering issues will this cause? What kind of havoc will this cause for my children and their self esteem in the years to come.
The upside is that their father is alive but at this rate and the constant fight for resolution for him I don't even know how long that will be a reality and then what new issues will that bring? At least they know their father loves them and of that they have no doubt.
Winter and/or Full Moon?
Dear Caregivers & Friends,
Maybe it's the winter months of grey, cold, and damp, or maybe it's the recent full moon, but the majority of us appear to be struggling right now more than usual. Our blog authors have been especially overwhelmed in recent weeks and we want you to know we wish days and nights were easier for all of you. If only we could open a Rest/Recharge Spa next to each VAMC to provide some respite during the often long hours at the centers, but you are needed for the appointments, so that's just not possible on so many levels.
Many of you have said how difficult it has been to read recent public announcements of great support to come, which led to hopes raised, then lowered in the space of two weeks. But rest assured, that support will definitely come and there will be good programs in the near future.
But, for now -- what to do? If you can find the time, will you take a moment and write the key things that would help you the most? Have someone run errands for you? Someone to really listen to you? For things to be good enough at home to return to your schooling or career? Find or create a portable job you could do flexibly given your caregiving? Gain medical care for you and your children? Participate in a sleep or caregiver stress study? Obtain a service dog? Say what would help you and think bigger than an uninterrupted cup of coffee - you matter and let's see if there's anything we can practically DO while we wait.
Hugs and blessings to you all,
Linda
Tuesday, February 1, 2011
VA Caregiver Hotline
I am not sure how many of you are aware of this, but the VA just launched It's caregiver hotline. Now you may wonder, is this just one more person that won't give a crap and will say they do? You may also think, WHAT? another person to keep up with? I decided to call the hotline and see what the heck it is all about and whether or not the people were competent. I have to say that the phone call was somewhere in the middle for me. The person seemed like she had a clue what she was talking about, but she also seemed like she was just someone at a call center taking information and was rather disconnected from everything I was saying. Do I expect them to get it? No! BUT it would be nice if they showed some empathy for what we go through every day. I also had to laugh when I saw the new website, because once again they are trying to give us all of these "helpful tips" but seriously they are not practical when there are obstacles to every one of them. Until they figure out a way to help address these issues and the obstacles people will remain "burnt out".
So what does the site provide? They have a video that represents a broad spectrum of caregiver's. A few questions to help you determine if you are a caregiver (though I think we all have that one figured out! lol..) They also have some statistics that were provided by the National Alliance of Caregiving. They recently did a study on caregiver's of Veterans. While I think they are trying, they still are so far from the mark in my opinion. I was told that this caregiver website is one of the first steps in the caregiver bill. When I pressed in on more important questions I was basically told that things are still being worked on and that they didn't have answers for me. I guess the stipend is a major issue and question among caregiver's and rightfully so, however yet again they seem unable to figure out what the eligibility will be for the stipend and how they will implement it. I think they are really trying for some CYA so that they don't piss us all off if only a select number get it. I also got the impression that the lady knew more than she would let on, and that she was reading from a script or something.
I was so not impressed and plan on calling back tomorrow to talk to a supervisor. It sounds like there will be a public online forum as part of the process of the bill where we will be able to provide some feedback on various things, so do call and get your email on the list so that you will be aware of the progress of the caregiver bill and the chance to give your feedback.
You can find the VA caregiver website here
http://www.caregiver.va.gov/
and the phone hotline number is
855-260-3274 M-Fri 8am-11pm EST
and on Sat from 10:30 am -6 pm EST
So what are your thoughts? Do you think we will see this bill implemented anytime soon? Do you plan on calling the hotline and connecting with your local caregiver coordinator to let them know what you are thinking and feeling? I would love to know how you are all doing and what your thoughts are.
So what does the site provide? They have a video that represents a broad spectrum of caregiver's. A few questions to help you determine if you are a caregiver (though I think we all have that one figured out! lol..) They also have some statistics that were provided by the National Alliance of Caregiving. They recently did a study on caregiver's of Veterans. While I think they are trying, they still are so far from the mark in my opinion. I was told that this caregiver website is one of the first steps in the caregiver bill. When I pressed in on more important questions I was basically told that things are still being worked on and that they didn't have answers for me. I guess the stipend is a major issue and question among caregiver's and rightfully so, however yet again they seem unable to figure out what the eligibility will be for the stipend and how they will implement it. I think they are really trying for some CYA so that they don't piss us all off if only a select number get it. I also got the impression that the lady knew more than she would let on, and that she was reading from a script or something.
I was so not impressed and plan on calling back tomorrow to talk to a supervisor. It sounds like there will be a public online forum as part of the process of the bill where we will be able to provide some feedback on various things, so do call and get your email on the list so that you will be aware of the progress of the caregiver bill and the chance to give your feedback.
You can find the VA caregiver website here
http://www.caregiver.va.gov/
and the phone hotline number is
855-260-3274 M-Fri 8am-11pm EST
and on Sat from 10:30 am -6 pm EST
So what are your thoughts? Do you think we will see this bill implemented anytime soon? Do you plan on calling the hotline and connecting with your local caregiver coordinator to let them know what you are thinking and feeling? I would love to know how you are all doing and what your thoughts are.
Thursday, January 27, 2011
Good New or Bad News in Disguise?
I usually read all the postings on here and I have noticed something recently which is in a way rather disturbing. I mean the small snippets of good news that some people have posted about.
No, I have not lost my mind, because what I am realizing is that it is actually newsworthy to have any kind of good outcome from the dealings with the VA. All those who post regularly and those who have recently joined this network, have dealt with so much junk from the VA, ranging from rudeness and ignorance to downright dangerous medical practices. We are starting to take this a normal. That is scary!
It should be newsworthy if someone is treated badly; if they have been insulted by a VA practitioner; if they have had to wait months for an appointment or told their situation is not an emergency or is the fault of their caregiver. These are the things that should be unusual, but sadly they are the norm.
I do think it is about time that someone at the head of the VA should begin by reading what is written here, and considering what needs to be done, and done quickly, to help our incredible Veterans and their families.
No, I have not lost my mind, because what I am realizing is that it is actually newsworthy to have any kind of good outcome from the dealings with the VA. All those who post regularly and those who have recently joined this network, have dealt with so much junk from the VA, ranging from rudeness and ignorance to downright dangerous medical practices. We are starting to take this a normal. That is scary!
It should be newsworthy if someone is treated badly; if they have been insulted by a VA practitioner; if they have had to wait months for an appointment or told their situation is not an emergency or is the fault of their caregiver. These are the things that should be unusual, but sadly they are the norm.
I do think it is about time that someone at the head of the VA should begin by reading what is written here, and considering what needs to be done, and done quickly, to help our incredible Veterans and their families.
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