Caregiving is Not a Competition

Greetings, friends,

Caregiving is one tough job.  It’s not for sissies.  And, you go through so much that many others could not possibly understand unless they experienced it themselves.  There is one thing though, that we hope we might shed light on here, and that is your caregiving is your challenge, and it’s impossible to compare it to another family’s challenge. 

So many of you have spoken or written that “I don’t want to complain when so-and-so has it so much worse”.  Or, “if I have a good day, will it make others feel worse?”  What if you know someone else’s situation is so serious that they might not have a good day for a long time, if ever?  If you are caregiving, there’s a reason.  Please know that it’s natural to make a comparison of situations, but not one that makes you feel badly or restricted in what you say.  If that happens as an ongoing pattern, it might be a good idea to distance yourself from that person. 

We care about each of you going through your days, and we are grateful for the depth of compassion shared here.  It is natural to wish you had different lives.  There are always going to be those who “work the system”.  But the vast majority of Caregivers and veterans are simply trying to make it through their days seeking improvement in quality of life an hour at a time.  And, at the same time seeking peer support that inflates rather than deflates you.

Caregiving is not a competition and there will always be differences in doctors, hospitals, clinics, community resources and more.   We all learn and grow with the peer support you provide when sharing your lives with us and each other. Please don’t burden yourselves further by carrying the torch at the Guilt Olympics; we care and you matter.

Best always,

Linda

Missed Appointments & Records . . .

Good afternoon,

This is not a new topic, but two things have made up the bulk of calls this week from Caregivers:  (1) Appointments cancelled by VA, but not communicated to the Caregiver or Veteran, and (2) The written medical record account of the same incident. 

In our view, communication is nearly everything.  It is about logistics, use of resources, and most of all, respect for everyone's time.  When a veteran misses an appointment, it is often characterized as a serious problem and the record reflects notes such as "Veteran refused treatment", "No show", "Missed appointment".  Fair enough.  But, when families drive hours to a series of mental health appointments and arrive to discover that the physician is absent for any reason, it presents a bigger problem for all concerned.

Veterans in most cases are trying to become well.  Caregivers are working hard to manage appointments, travel, logistics, and most of all their veteran.  Surprises are not welcomed by those with PTSD.  And, to find the medical record later reflecting an inaccurate assessment - well, that isn't a good faith effort.  It comes as no surprise to us that many of the more desperate phone calls focus/obsess on the slap of an unfair record of a simple mistake. Let's face it, mistakes can be made and "oops" moments do occur. However, a simple apology and a confirmation text, email, or call would be welcomed.

The provider isn't perfect, but may we caution that the provider may need to step up their communication and customer service efforts?  And, Caregivers, a quick call to confirm before driving hours might well be advised.  Courtesy just might become contagious!

Linda

Leadership: Do They Know?

Good morning,

Here’s a question for you that we have been asked no less than 11 times in the last two weeks:  “Do you feel the leadership (DoD, VA, service branches, Caregiver Coordinators) truly understand what Caregivers experience?”

This is a volatile question, to which I give no answer, but listen for the occasion that elicited the comment.  There is great frustration by Caregivers that we hear often, and I think it boils down to this:  Leadership is shielded from the family caregiver experience.  We believe there are good leaders who care, but there are many surrounding them who keep controversy from their bosses.  Is this good?  In our opinion, no.  For without real observed examples, the leader is not leading with the right information.  And, can you fix something if you don’t know it is happening?  No.

Daily living essentials matter.  For a month recently, there was no hot water at one of the residence barracks at Walter Reed.  For a month.  Despite many mentions of this problem at group meetings, it wasn’t until the problem was quietly researched that progress was made.  The contractor, subcontractor, and sub-subcontractor were contacted to ensure the event was reported appropriately to maintenance and afterward, the resultant mixing valve issue was solved.  See, once they knew, proper process was followed and problem resolved. Hot water is pretty necessary for health and hygiene, wouldn’t you say?

Invisible Injuries are still invisible.  A caregiver at a recent VA appointment was asked “Why aren’t you looking for a job?  He’s doing so much better,”.  She then explained the severe lack of short term memory for her husband that nearly resulted in a home fire catastrophe the previous week.  Better yes, but good enough to leave unattended and take on a job?  No.  The doctor doesn’t live with your veteran 24/7 – you do.  See that the record reflects the reality of your experience.

We suggest this to you.  Respectfully note and bring real-life caregiving challenges to your appointments and town hall meetings.  Unless leadership know about them, they cannot research situations or make changes.  And, if they are not amenable, or there are repercussions, there is help.  We must collectively raise the visibility of caregiver experiences to bring about positive change.  Share your Caregiver challenges (and wins) in order to make it real.  Together, let’s help leadership to lead!

Linda 

White House Caregiver Event

Greetings!

On Monday, January 30^th, we were privileged to join the First Lady at the Department of Labor as she announced proposed extended benefits to Caregivers of the nation’s wounded, ill, or injured service members and veterans.  Many Caregivers and vets from VeteranCaregiver were present, as well as many of the Caregivers and service members we assist at Bethesda.  To have these amazing Caregivers in one room together was a rare opportunity for face to face camaraderie! 

Caregiving is not sexy. The role of Caregivers is very hard to define to the general public.  It is not a photo op with a service dog or a golf tournament.  It is instead, a quiet, relentless, worthy, and necessary adjunct to recovery for our service members and veterans.  It takes courage, passion, strength of purpose, and grit to navigate the complex medical system, and to advocate and coordinate efforts for their family member every single day.  The recovery continuum is unimaginable without Caregivers.

This event signified the importance and priority of Caregivers in a quiet, but powerful way by the attendee list, and joining the First Lady were: 

-      The Secretaries from the Departments of Defense, VA, and Labor

-      The Secretaries of the Army, Navy, and Air Force, and

-      The Chairman of the Joint Chiefs and all the members of the Joint Chiefs of Staff.

Specifically, the First Lady spoke of a proposed rule to extend the Family Medical Leave Act (FMLA) to qualifying family members of veterans dealing with a serious injury or illness for up to five years after leaving the service.  This is a change from supporting only family members of “currently serving” service members.  This proposed rule would also cover those in the regular armed forces instead of the current entitlement for only those in the Guard or Reserves.  And, addressing one of the most critical challenges facing Caregivers, Mrs. Obama also spoke of new programs to address critically high unemployment among Caregivers and veterans by announcing 14 hiring fairs with the Chamber of Commerce, including one to be held at Bethesda.

Caregiving defines love in new ways under new circumstances.  And, most Americans are completely unaware of the significant, vital role that Caregivers fulfill day in and day out.  We hope that this event will be the beginning of recognition of the essential role of Caregivers to our service and veteran families.  As always, honor and praise go to all Caregivers, you are recognized daily by this VCG Community!

Very respectfully,

Linda 

Suicide Straight Talk: Transforming Taboo to Hope

Greetings, friends,

Last night, I was sent this blog posting by a veteran and asked to post it if I felt it was worthwhile.  I thought it was striking and very relevant.  Please let us know your thoughts on this difficult topic here or on Veterancaregiver. Here it is:

I recently had a discussion with a person who is advocating for veterans with PTSD that went down the road of talking about suicide.  For me, having been through my own issues with not wanting to live, having been first and second hand witness to others taking their lives, the topic doesn't scare me.  As I relayed my thoughts about suicide and other subjects of significantly less importance I realized the person had fled somewhere inside their mind.  Then the walls went up and the discussion was over.  It was like I was a very scary person for being so plain and being so up front about this topic.  I was surprised and mystified.  

I have been involved in spiritual groups from many traditions, psych groups of all kinds and though we'll talk all about disease and people killing each other and even advocate, some from a very clearly spiritual place, that it's quite all right to kill people who may or may not be a threat to the proverbial us/U.S., it would seem the subject of suicide is still taboo.  

*

I told another person I consider to be a friend that I think this is wrong and backward.  If the collective we aren't supposed to talk about it how are we to heal it?  Suicidality shows as a symptom in a larger cluster of symptoms for many mental illnesses and also for illnesses deemed terminal.  Here's the problem.  We'll go to extremes in health care to manage symptoms that cause discomfort but the ONE symptom that will cause death we treat in a completely different manner.  We're told NOT to talk about it.  We're told to let someone else at a call center who has never met our loved one talk to them.  Basically, we're told to be quiet, let the professionals handle it and tell the same to our vets.  

Now wait a minute.  Convince me that some stranger knows my vet or that my vet knows anyone who knows how they're feeling BETTER than me or my vet does.  I'm not buying it.  So now the caregiver is made even more uncomfortable because they've been told they know less about someone they love and they've gotten the double whammy of being told they're just not capable of handling things.  That's not character building and now it's possible there is a wall in a relationship that might not have been there before.

Consider this from the veteran's perspective.  The vet talks to the person they trust probably the most about the subject and thinks they have made a wise choice.   But it all goes sideways because caregivers are being told they can't handle this.  If then the next stop is diversion to a crisis hotline and the call goes well the vet is still left to believe that their person who they chose to trust, probably for good reasons, isn't who they're SUPPOSED to talk with.  The vet is left feeling that they don't know themselves, can't make sound decisions and suicidal statements of any kind will get the police called to take them for supervision on a psych unit.  Obviously, you don't want to dis-empower someone who is experiencing a symptom that can kill them.  But having been through this that is exactly what happens.  

Many vets have vowed never to call for help if they need it and since they were told either explicitly or implicitly that they should have known not to talk to the person/people they trust, now the system has very effectively isolated them.  Sadly, isolation is also a symptom that has a high potential to kill and has been proven to drive people over the edge who were plainly functional before they were isolated.  If this sounds too extreme consider the topic.

Now consider that we train our military to kill people.  Every single person in the military, unless they didn't make it out of their initial training, is trained to kill.  Right now we have a slew of folks coming home who have been in theater, reacting, and their transition back to civilian life or even just every day military life at home is completely different.  When you have viewed life through red alert long enough, fight or flee, kill or be killed, or freeze to avoid any notice, NOTHING is normal anymore.  Every single thing is processed through this new normal.  Healing can be had but it doesn't happen overnight and if we don't encourage people to talk who have been trained to kill, the results, as proven already by statistics, are going to be horrible.

My bottom line is this.  I've been there.  I've attempted and failed.  I've thought a lot about that and I've still thought about dying by my own hands.  I have watched the aftermath of that and also experienced suicide this winter by a friend of someone who is very dear to me who was brilliant and had a beautiful wife and baby girl.  His diagnosis?  Major Depression.  Depression didn't kill him; suicidality as a taboo symptom acted out killed him.  I have isolated myself from people who might listen because I'm terrified they won't.  Why?  Because I've been told I'm wrong and crazy and that somebody knows better than me about me and somebody knows better than the people who love me.

I am certain this is wrong.  We need to push for VA and the DoD to help caregivers and veterans and/or those still enlisted to OPENLY talk about suicide.  We need to talk about that SYMPTOM because there's a good chance in this case the diseases and disorders can be managed but that symptom will kill you.  We need to stop punishing and demeaning people who may not be trained in psych but do possess common sense and love their people.  The folks who love me can call 911 just as easily as somebody in a call center and they might actually be able to speak intelligently about what led up to the symptom escalating.  We need to stop punishing people who have this symptom and want to just talk because if somebody is actively suicidal the Hell in their mind is far greater than any punitive or embarrassing action someone will take against them.  Too many veterans have closed their mouths because of interactions like this.  We need to let our heroes come home again, no matter how many years later, without the stigma.

Until the statistics change for the better we need to keep talking about SUICIDE.  We need to form groups to talk ABOUT SUICIDE.  We need to stop telling people that a symptom is a crime because though not taken to prison, suicide is against the law in every state in this nation.  We need to empower people to lift one another up.  We need to enable and encourage caregivers and their vets to talk about this subject openly and to invite in care as they need and want it.  We need to have a complete change of policy with DoD so that enlisted military can talk without fear of repercussion.  We need to recognize that this is a United States of America problem and we all have a responsibility to unite and help shift it to a living solution. 

The greatest wars are the ones fought in our hearts.  Let's bring these warriors hearts together in respect and understanding.  It is long past time.

With Great Peace and Hope,

A USA vet 

© 2012


*Image created in Tagzedo

  

  

Does the Full Moon Effect You and/or Your Vet?

Hi friends,

Short posting to ask you to be aware of a phenomenon we’ve noted each month.

Does the full moon tend to bring out heightened emotions,  more angst, shorter emotional fuses, and more agitation about things that mostly go by without mention?  We know that the ER staffs talk about it, and we’re curious whether you’ve seen this lunar connection?  And, can you plan for greater understanding and grace if you do see it; please let us know!  J

Wishing you a calm night under the very full and bright moon!

Linda

Light Thoughts and Knucklehead Moments of 2011

Hi friends,

Happy New Year! 

I was lightly pondering 2011 yesterday and thinking that there were some moments I laugh at now, but wondered at the time if I’d lost my marbles? (That is not an open invitation for you to send zingers, okay?)  J  I chalk these things up to fatigue or overload and I’m sure you have your own list?  Of course there will be new mistakes, but just maybe I can learn some basic things from NOT doing these again:

·         Losing my car in the Pentagon City parking garage (rescued by a kind woman who drove me around 5 levels)

·         Setting my alarm for 330 instead of 530, and out the door and in the car before I realized what I’d done… (traffic in DC is not that bad!)

·         Reaching for and nearly spraying myself with the Febreeze instead of perfume that same morning

·         Forgetting my ID – and not being able to return a Caregiver to Barracks at Bethesda (really nice one, Linda!)

·         Posting a Blob, not a Blog…

·         Going suddenly speechless and searching for words at an important business dinner (very unlike me!)

·         Backing into a hot motorcycle pipe in a garage and pretending that huge circular burn on my leg wasn’t there (“Oh that??”)

·         Losing my car again, this time at WRNNMC in the garage called America; of course wearing un-sensible shoes

So, now that I’ve demonstrated that multi-tasking for me means doing everything less well, I hereby vow to stop doing 13 things at once!  In 2012, I will be looking for new mistakes to learn from.  And, I think we can all learn to laugh at ourselves, especially when we're tired.  I'm vowing not to let the sound of my own laughter sound foreign to my ears, how about you? 

There’s no app for that yet.  J

Wishing you a wonderful New Year ahead.  Let’s keep on learning and laughing together!

Cheers,

Linda

PS:  The picture below is from a hill nearby and is the last sunset of 2011.