Caring for our Nation’s Veteran Caregivers - from Homeland Magaine, June 2014

To all:

They are quiet and often unseen. They are strong and resourceful, caring and compassionate. They will roar when needed to obtain the help they need. They are the Caregivers of our nation’s veterans.

Caregivers are the heartbeat of the military family and the backbone of the veteran medical care system.  According to the most recent RAND study, there are 5.5 million military Caregivers in 2014, with 20% caring for veterans of our most recent conflicts.  But, few know they exist.

For a brief moment, imagine a “National Take Your Vet to VA Today” event.  This would be a day where the 1700 VA medical centers, vet clinics, or sites of care would attend to the hourly needs of the veteran to provide the caregiver a single day of respite.  It’s nearly unimaginable given the sheer numbers, isn’t it?  But it would be an excellent visual to show the vital importance and contribution of our veteran Caregivers.

Veteran Caregivers are intrepid; going where others fear to tread in their quest for answers.  They soak up information and education about Invisible Injuries like PTSD (Post Traumatic Stress Disorder) and TBI (Traumatic Brain Injury) and myriad physical and more visible conditions.  They learn to navigate a labyrinthine medical system, all the while reminding medical staff they are an integral part of the care team.  It has been a slow road to understanding in a system that previously focused solely on the veteran, and large bureaucracies are seldom swift change agents.

Caregivers carry a heavy load, and some examples are shocking.  One OIF veteran, raped by another soldier tried to hang himself; he was saved by his caregiver spouse grabbing a chair and raising him on her shoulders to elevate him until EMS arrived.  Another soldier was shot by one of his squad mates in Iraq (the only survivor of four in the room) in Iraq; his caregiver mother could not discuss her situation with anyone due to the investigation.  One caregiver sibling had to explain to the rest of the family that her brother preferred addiction to facing his combat PTSD.  The complexity of caregiving is great, with role changes, steep learning curves, and isolation. 

  

In providing Caregiver Workshops at military installations this year, several common themes emerge.  Though present in most communities and at every military base/post, Caregivers feel invisible and isolated, even from each other. They wish they knew more about how to live with someone with combat injuries, and how to best understand how to help their spouse/adult child/sibling/friend. They are grateful for the Internet, but nothing can take the place of a hug from a peer; someone who has walked in their shoes.  Finally, they realize that helping others also helps them to grieve for what might have been, restores their strength, and empowers them to share what they’ve learned.  Peer support is critical.

We are a generous nation, and we move to fulfill unmet needs.  Most people know a veteran, and some know many.  From this day forward, reach out to help a Caregiver of a veteran of any era.  Our WWII vets have aging and end of life needs, our Vietnam veterans have often shunned formal help until absolutely necessary, and tamped down combat experiences and their aftermath.  Those in Desert Storm and the Gulf wars, Kosovo, Grenada, Kuwait, and so many other places are smaller in number, but not in contribution.  And, for our OIF/OEF/OND veterans, successfully returning home is aided when the community recognizes and supports the entire family.

Proactively offer assistance to a caregiver who may not have the energy to ask, know the power of a smile of understanding, and the ease provided by listening without judgment.  Caregivers will not be alone if we practice outreach, increase awareness, and integrate them with their families more smoothly into the community. It is a matter of respect, compassion, and grace. 

Caregivers, know that you matter and that America is learning to express their support and understanding more each day!

Linda Kreter & the VeteranCaregiver Team

Caregiver Peer Support - In Person...

Greetings,


We apologize for not writing yet in 2014; it has been a very busy year so far.  More postings soon, but for now, one important, recurring point.

Online caregiver peer support is great, but if it's possible for you, we suggest setting up an in-person caregiver meeting in your community. If you choose, include family caregiver supporters too.  It's up to you.


There's something about looking someone in the eye who understands, and nothing replaces a hug.  Pick a place, set a time, and whoever shows up - you can visit, talk, debate, and share.  If no one shows that day, give yourself the gift of quiet time.  We highly recommend it.


Caregivers and those who support them are exceptional people. In 2014, give yourself the gift of meeting other caregivers beyond the Internet. It's a very old Barbra Streisand song, but "People, people who need people are the luckiest people of all!"  Reach out and grow your in-person network through your community organizations, your churches, and your civic organizations.


Your heart and head will thank you.


 Linda Kreter and the VeteranCaregiver Support Team.

Caregiving Monday Musings

Caregiving is both a loving and a draining experience.

Love can wax and wane and the caregiving experience feels different depending on your phase.

Being thoughtfully pensive is different than being mired in a recurring mental spiral.

Fairness has varying definitions depending on your perspective; learn to raise or lower your expectations depending on your mental outlook of the day. Life is not always fair...

Peers and friends who “get it” are priceless.  It is lonely and isolating to walk this path alone, so please don’t!

As much as possible, give patient, educated responses when coping with the muddle of bureaucracy.  You’ll sleep better when you're less agitated.

Find your “anchor” (a friend, your faith, your journal, your dearest pet…) or a quiet place and give yourself permission to hold still when needed.  Your work will wait.

Finally, know the people that care for YOU in your life and lean on them when necessary. They fervently want to help you.

You matter so much to those that depend on you.  Do you really need to wonder why you’re tired? 

Please be kind to yourself.  You do a huge job, and you’re not going to be perfect, but you are going to do your best.  

You always do.

Caregivers, you are a gift to those you support.

Blessings to you,

Linda Kreter & the VeteranCaregiver Team

The Caregiver Cycle - Rinse & Repeat Only

Greetings,

After years of working with Caregivers, warriors, and families, a particular cycle of emotional health of the Caregiver has been noted.  We call these Caregiver Cycles, and we’ll give you only one visual, though many others would work as well.

There is the Cycle 1, the strong cycle when we feel put together, relatively well-informed, there is a decent communication pattern with our warrior’s care team, and as the Caregiver, you feel quite positive.  Your phone calls are returned, you see and feel progress, and you feel HOPE.  One vital thing about Hope is that it makes you mentally and emotional ready and willing to keep on working to improve your quality of life and that of your family. This is a good place to be!

Because caregiving is seldom a linear process, there are also times that may feel less accomplished and less effective.  This is Cycle 2.  Though you are still optimistic, you’re noticing that you are not making as much progress as before, there is a backslide in your warrior’s or your forward motion, or you’ve hit a new hurdle to overcome.  The longer you’ve been a caregiver, it seems that these periods wear you down more each time you experience them.  They also feel longer to you if you’re battling something for the second, tenth, or fiftieth time.  This is a time of concern for yourself and your family, isn’t it? You are exhausted, and somehow that makes each unreturned phone call or cancelled appointment feel worse.  You may be feeling higher anxiety, or less capability in managing the many details of caregiving.  In other words, you’ve lost some of yourself in the process, you're leaning, and pieces of you are missing.

Then there are those days when you’re not sure you can get out of bed to face another day, or you can’t sleep because your mind is struggling for solutions.  This is the much dreaded Cycle 3. You feel depleted, and search mightily for that spark of light you know you have within, but where is it?  You put one foot in front of the other, but this is a desperate/invisible/spent phase of time.  Please seek help when you feel this way.  Others have been here too, and your work is SO critical that you must stay present and care-seeking.  Reach out to your doctors, friends, and family – you WILL get through this time, but don’t try to do it alone.  We all need somewhere to lean, so reach out for assistance (therapists, pastors, helplines, doctors).

The goal is to keep the cycles to the TWO levels, and construct supports to avoid the third.  Let’s work together to support, guide, and reach out to keep each other strong, okay?  Remember, the shampoo directions give you two cycles only.  Strive for Rinse and Repeat – and avoid that third cycle altogether. 

With care,

Linda Kreter & the VeteranCaregiver Team

Winter Blahs!

Over the past few weeks I have spoken to a number of families who seem to be struggling in many ways, just to deal with day-to-day life.  One family had multiple health problems with many medical appointments, another had a death which required an out of state trip. Even in my own family we have had various depressing problems.

I went to have coffee with a good friend and I was talking to her about life in general getting harder to deal with.  She looked at me with great seriousness and told me I had caught the Winter Blahs. I laughed thinking she was joking. Well, in part she was but she was also deadly serious.  This time of year is often hardest for families who are caregiving. Getting someone in a wheelchair to hospital appointments can be a nightmare in bad weather. Snow, icy roads and freezing fog combine to make any driving stressful.  Multiple illness in a household causes more stress.  Children can be cooped up in the house with few ways to get rid of excess energy.

I have been trying to think of ways, just small ways, to help get through this part of the year.  For one thing the days of clouds and low light really depresses me so I have switched to full spectrum lights in many parts of my house, especially the lights I use mostly.

I try to find one thing each day to look forward to for myself.  It can be 15 minutes with a good book, a quick manicure or planning my garden for when the spring comes.

 If I have things to do that I really do not want to deal with, I try and do those early in the day if I can. That way they are not nagging at me for hours.

I  get outside in the fresh air even if it is just for a few moments.  I look for joy in small things; an insect creeping up a leaf or a pattern in the clouds (which was always a game when I was a kid). I also remind myself that winter is not going to last and that the sniffles and fog and horrid road trips will be gone soon.

 I get exercise of some sort even if it is with the Wii or the stair stepper. I'll see if I can fit in a new project; being creative is a good cure for the Blahs. Knitting, painting, cooking or sewing are all productive and you can see the results of your work. Right now I am trying to grow some fresh herbs in pots on the window ledge.

Above all the support of friends and family helps. Being stuck together in a small space can make all of us edgy, but  if you can get the family involved with a little planning you can chase away these Winter Blahs.

Veterans Crisis Line Outreach Blog Post

Veterans Crisis Line

Suicide Prevention Month Partner Outreach

Blog Post

  

Stand by Them:

Show Your Support for Veterans During Suicide Prevention Month

September is national Suicide Prevention Month, an important reminder that you can make a difference in the life of a Veteran every month and every day. The U.S. Department of Veterans Affairs (VA) needs organizations and individuals across the country to educate their communities about the signs of suicide risk and raise awareness about the free, confidential support available from the Veterans Crisis Line. To accomplish this mission, VA encourages Veterans’ communities, friends, and family members to get involved, learn more, and help spread the word to promote mental health and prevent Veteran suicide.

A critical step in preventing suicide is learning to recognize warning signs. Although many at-risk Veterans may not show any signs of intent to harm themselves, there are behaviors that could indicate that a Veteran needs support. In addition to talking about suicide or hurting oneself, some signs that a Veteran may be at risk for suicide include engaging in risky behaviors, withdrawing from family and friends, and feeling hopeless, anxious, and angry. To learn about additional signs that someone may be at risk, go to www.VeteransCrisisLine.net/SignsOfCrisis.  

If a Veteran you know exhibits any of these signs, trained professionals—many of them Veterans themselves—at the Veterans Crisis Line can help. Just call 1-800-273-8255 and Press 1, chat online at www.VeteransCrisisLine.net/Chat, or text to 838255 for free, confidential support, 24 hours a day, seven days a week, 365 days a year.

Since its launch in 2007, the Veterans Crisis Line has answered more than 640,000 calls and made more than 23,000 life-saving rescues. In 2009, an anonymous online chat service was added, which has helped more than 50,000 people. In November 2011, the Veterans Crisis Line introduced a text messaging service to provide another way for Veterans to connect with round-the-clock support. Qualified and caring VA responders are also able to provide referrals to local VA services and aid Veterans in getting fast-tracked mental health care within VA.

Every American can help prevent Veteran suicide. During Suicide Prevention Month, stand by our Veterans and their loved ones. Spread the word about the Veterans Crisis Line and help make sure that all Veterans know that confidential support is only a call, click, or text away. Go to www.VeteransCrisisLine.net/Pledge to take the Suicide Prevention Month pledge and learn how you can educate yourself and those around you about suicide risk and the Veterans Crisis Line.

You can also visit www.VeteransCrisisLine.net/SPMSupport to download free Suicide Prevention Month materials, including posters and flyers that you can print and distribute in your community; online ads in a variety of sizes and formats to display on your website; and, free, ready-to-go content for your Facebook page, Twitter feed, newsletters, or other print materials.

Our Veterans stood by us. Now let’s stand by them. Together, we can make sure they get the support they earned and deserve.

Visit www.VeteransCrisisLine.net to learn more.

To learn about additional warning signs of crisis, go to www.VeteransCrisisLine.net/SignsOfCrisis  

Exercise in Futility? NO!

Greetings, friends,

As the summer brings floods, fires, strange violent storms called derecho’s, and searing heat, it is also seemingly bringing Caregiver problems with few paths for resolution.  This concerns us and our fellow support teams since we collaborate to keep the levels of family caregiver anxiety, hopelessness, depression, and futility low. 

When we all emphasize and participate in the measured steps needed: first follow the chain of command, elevate to supervisory levels, respectfully further escalate as needed – and scant progress is made, it simply underscores the family’s frustration.  They question:  Do we really matter?  Those who support caregivers, and those who are caregivers are having an especially hard time this summer.  Mind you, no one is complaining at the difficult nature of this work, only at the fact that so many in positions of responsibility are choosing to delay help at best, or commit clinical retaliation at worst. 

In general terms, it appears there is at least passive neglect of many of the reasonably raised issues.  Below are a few comments made by Caregivers recently after they respectfully and with multiple sources of support received no responses or change in care:

• “Why should we call and write to ___’s office again, it won’t make any difference.  We’ve been ignored since August of 2011”.
•  “We think the only solution is to move again; this is never going to change”.
• “We’ve been waiting and waiting for our ratings; isn’t 16 months long enough?”
• “I’ve been viciously sexually harassed by my husband’s psychologist (in front of him), reported it to the highest levels, and there has been no update for almost a month”.
• “My husband is supposed to have PTSD counseling every two weeks, but there are no appointments available for two months”.
• “It’s no surprise to me that caregivers attempt suicide”.
• “Once we asked for the supervisor’s help, all calls have gone to voicemail without a callback…”
• “After being connected to our state’s VSO, they were shocked as they shadowed me on a single day at VA, but didn’t do anything we hadn’t already done.  We’re moving and hope it’s better at our new VA”.
• 
  
• “I’m too tired to keep fighting for his care…”"
• I can’t do this anymore…”
• “I can’t face 40 more years of this…”

All of this underscores the continuing needs of Caregivers, veteran, and service families.  There really must be a better way, and “doing nothing” is not a solution.  Times are hard, and a returned call or email is not asking too much of our institutions.  Failure is not an option for our families!

Keep the faith, and we will too.

Linda Kreter & the VeteranCaregiver Team

Stark Street

Greetings, friends,

Like many people, I rely on GPS to locate places unknown.  Fiona, as she is known in my car, doesn’t always get it right, and I couldn’t help but sigh when I was recently “misplaced” on “Stark Street”.  I mean, really???

My outlook that day was not so great… pretty sure you can relate.  How many of you have gotten stuck on Stark Street?  It seems to happen to all of us, and how we cope with turning around and going in the right direction tells us a great deal about our mental and physical condition at the time.  If we’re rested, reasonably happy, and have a goal in mind, we can usually resolve the misdirection.  It’s when we’re exhausted, fairly down and unhappy, with goals in mind but brain fog on how to resolve the hurdles that the wheels come off – and Stark Street becomes a dead end.

When Stark Street becomes your dead end, please don’t forget to reach out.  It can be very affirming to know that you’re not alone.  You DO have options, and you absolutely matter.  On my specific “lost day”, I called a very reliable friend who guided me to a landmark where Fiona could take charge again.  We laughed at the irony of the street name, but turning around is easier with help from a friend you can trust. 

May you seldom find yourself on Stark Street, but if you do, reach out because we are here for each other!

Linda