Thursday, March 2, 2017

VA Caregiver Program Changes & Awareness Recommendations

Points of new awareness about the VA Caregiver Program:

Please be certain to research beyond private, secret, and open Caregiver Communities on social media.  Rumors can spread like wildfire, even when the information is not accurate.  Rising anxiety levels within the family rarely does anyone good.  Find out the facts first.  Note that VeteranCaregiver goes directly to the VA Central Office with questions raised on specific processes, caregiver law, and changes.  The answers are not always clear and often raise more questions -- but these are direct responses from Caregiver Program Leadership.  

Something one Caregiver Support Coordinator tells you does not always confirm national guidance.  Each VISN has the flexibility to implement the program (*within the parameters of the Caregiver law*) differently.  We already posted the official response to new phrases used in 2016 regarding “short-term recovery program”, “graduation”, and the significant reductions in Tier 3 caregiving.  According to the VA, there are no quotas, no changes in eligibility requirements, and no changes in ADL measurement. Note possible discrepancies to the law, with date, person, VAMC, requests for clarification in writing and attach a Read Receipt to the short message.

ADL’s still form the basis for eligibility, as do safety and protection elements.  Here is an excellent example of the detail you may need to explain about only a single ADL:  bathing independently.  See below and other questions and responses may be found on www.VeteranCaregiver.com’s website in the “Ask Questions Here” section on the Homepage:

I’M CONFUSED ABOUT ADL’S. JUST USING BATHING AS AN EXAMPLE, MY WW HAS DIZZINESS, BALANCE, LIMITED RANGE OF MOTION THROUGH BACK AND UPPER BODY WITH CHRONIC PAIN. HE CANNOT WASH BY HIMSELF, YET THE CGC SAYS SINCE HE SITS IN THE SHOWER BY HIMSELF, HE CAN BATHE WITHOUT HELP. NOT TRUE! HE CANNOT WASH HIS HAIR SINCE HE CANNOT RAISE HIS ARMS. HE CANNOT WASH HIS BACK, BUTT, OR BACKS OF LEGS SINCE HE FALLS OFF STOOL IF HE RAISES ONE LEG TO REACH THE OTHER. HOW IS THIS NOT NEEDING ASSISTANCE?
This is a great example of when detail explains what the needs are. If you haven’t already, write all this down, since if the questions are not asked about detail, then assumptions are made. What you describe fits the definition of needing assistance with bathing, but if the right questions aren’t asked, or the vet glosses over his not wanting to say personal details, there is a chance that this will be overlooked. Write this up and ask that the evaluator/RN/PCM add it to his medical records.

If you need to appeal a VA decision, you will need to know the precise reasons to address points specifically in your appeals documentation.  Appeal justification is best explained using language similar to the clinical language provided to you as the reasons for the caregiver program change in status.  Specific points, evidence, and documentation is best delivered in a succinct document, and excess emotion removed. Abusive language is not advised even if you feel it is warranted.

Appeals timing of document submission will vary from VAMC to VAMC, but will be shared with you upon request.  Also ask specifically for "confirmation of the receipt of the documents for appeal", and again request "confirmation that the Appeals Panel reviewed the materials prior to their decision" in writing.  Note the timing of decision letters and the receipt of documents.

There are separate VA non-medical databases that contain feedback on the caregiver and veteran.  This information may not be available to those reviewing appeals, and request copies of both the Patient Advocate Tracking System (PATS) notes, and any Caregiver Application Tracking System (CATS) notes.  (This may mean a FOIA request.) The noted information may be used for decisions and unless you’ve verified the information is correct, or that information is missing, your status may be adversely affected.  It appears that access to this information varies per VAMC.

The specific reasons for Caregiver Program reduction or termination" will be explained to you in a transparent, understandable manner" per VACO.  It’s best to receive this in writing, and we have seen only a single VA do this in the status change letter.  You may request to record a Skype call if you’re far from the VA and a meeting is offered, and you may request to tape a meeting for an in-person meeting.  We recommend responses in writing so you can review and compare to your veteran’s needs, the responses used for the decision, if records were changed or missing, and to determine your response.

Trust, but verify information.  It is very possible to receive a VA response that is accurate, but literal.  If you don’t receive direct answers to questions, rephrase them politely in an email and request clarification of the response.  It should not be necessary when direct responses and transparency would be more efficient, but ... Make use of an outside advocate (AW2, Legion, AMVETS, etc.) when in doubt.

Please stay informed, use trusted resources and advocates, and know how absolutely vital caregivers are to the care of our nation’s wounded, ill, and injured.  We will continue to post direct VACO Caregiver Program responses to your questions for your increased awareness.

Linda Kreter & the VeteranCaregiver Team






Friday, November 18, 2016

A Tired Caregiver - VA Visits


I happen to enjoy visits to the "big" VA clinic. It gets me out the house and gets us around other people. But -- my husband hates those visits.  He associates doctors with pain, because every visit causes him pain, dread, and fear.

Example:  he hates the dentist and we had to cancel several visits because he just plain refuses to get dressed and leave the house.  He knows he needs to go, but just sees the painful part.  PTSD, anxiety and mental issues make it worse. 
How do other caregivers deal with it when your Veteran refuses visits to the Doctor/VA?  When it’s hours away and turns into an all-day event?  Do you bribe with visits to certain places?  Do you risk them having a meltdown in the VA or wherever they hate to go?  We try to stay in our role as spouse, but it feels like being a mother, or shaming him if we insist.

Why is there no program at the VA for Veterans with Doctor-related anxiety related to enduring pain?  Every visit seems to incur pain and the further apart the visits, the more pain.  If we go to the dermatologist for a mole, that won’t hurt, but do I bring up the infected toe?  Removing part of a nail takes the VA three separate visits!  One to look at it and say "Yes, it’s infected and needs to be removed", the second is the actual surgery to remove the sides of the nail and the third is to look at it two weeks later. 

Each of those visits is a two hour drive -- one way.  Again, why can't they just make it easier for us?  PTSD and anxiety make this very hard.  Can’t this be referred to the big VA for surgery and follow-up locally?  No need to make a ten second visit with a Podiatrist turn into an all day thing.

I hope I can find an easier way to get his care to make his life and mine easier.  The care team doesn’t respond except to tell him to man up.  That doesn’t work because he doesn’t feel they care about him. I’m tired of badgering to do doctor visits; am I the only one who’s made out to be the bad guy in “supporting my vet” for care? 


A Tired Caregiver

Thursday, September 22, 2016

Try NEW Things - With Thought & Planning, It IS Possible! -- Guest Caregiver Post

Many of our Veterans that suffer from PTSD and other mental health issues lose interest in things they once loved and enjoyed doing, or may not do them due to physical limitations. 



The man or woman that once was out hunting, fishing or playing or playing golf now just sits around at home doing nothing and watching TV.  Even a simple family outing seems all but impossible as they cannot handle crowds, noises, long lines and get just plain aggravated by most everything.  My own Veteran is like that. He just sat at home and watched TV.  He wanted to be left alone.

Going through trying out a new medicine turned out to be a disaster and re-adjusting to the old medicine took all summer. This meant sitting on pins and needles for what would happen next.  I paid close attention to what shows he was watching in a back bedroom he was holed up in.  He watched Food Network most of the day.  I also knew that grocery shopping is one of the few things he still enjoyed.  Good!  We could go during low customer times and he can walk as slow as he needs and can take breaks as needed. He likes eating (unfortunately).

But, as a family, we hadn't done a single thing all summer.  School was coming up quickly.  How could I combine groceries, eating and fun for some teenagers into one activity?  Impossible at first glance.  But, in our case, I had paid enough attention during hours and hours of Food Network to remember a place called Jungle Jim's in Ohio.  I suggested going there. As usual, he was worried. He came up with all the things why we couldn't go.  Do they have electric carts?  What if he has a panic attack?  What if his sunglasses break (he needs them to shield his eyes from bright light and they broke 2x before while shopping)?  I did hours of research. I promised to buy gear from his fav college team, and put spare shades in the car.  "Sweetie, they even have a Starbucks and I can buy you an iced coffee", plus we can take breaks as needed.  I mapped all the bathroom breaks, a trip to Skyline Chili AND a bucket of wings from the Lube.  I showed him pictures of the supermarket, how they had food from all over the World and the US.

This last point finally sparked his interest. Normal grocery shopping in a place also fun for our kids and two restaurants he likes. For the first time this summer he had done something new, and with the family.  We were so proud of him.  And of the family…

Even a Veteran that has virtually no interests left (or so it seems) can find things they can do with the family.  I had to pay close attention to mine. It was food for him. For your Veteran, it might be a favorite sports team, books they enjoy, tech gear, art supplies, or movies.  If you find what they still can enjoy, you can find something new to do. Is there a book store they haven't been to? Is there a place where a movie was filmed? (I took our family in better times to where they filmed “A Christmas Story”.) Restaurants they might enjoy? (Calling ahead might be necessary to see if they take out or can provide a quiet place for a Vet with PTSD -- we had to take food out and did a picnic.)

If they fear regular movie theaters try finding a drive-in. This way you can stay in the car in the back row or on the side.   It gives them more security knowing they can get out fast if needed.  See what sparks their interest, be creative. 

Doing new things, even with a great deal of planning helps the whole family.  What has worked for you?

Caregiver Cornelia Malies, Kentucky
Guest Blog Post




Thursday, June 30, 2016

Forgiveness


All relationships create opportunities for communications, or no communication, but both words and deeds are powerful and once said or done, very difficult to un-hear and un-see.  Forgiveness is a powerful concept, but one of the most difficult actions and choices to make in life. 

How do you repair or maintain a relationship following harsh or painful words and actions?  Choosing first to repair the schism is important.  And, it may mean a conscious choice to address some painful personal truths.  Many neglect to look inward to closely analyze what may be something you’d rather forget – introspection and bald reality can be difficult to manage.  Yet, if you fail to learn from situations, you are likely doomed to both suppress negative emotions, and to repeat the behavior.

If you received harsh or painful words, it takes a very strong person to look unflinchingly at what occurred and to calmly analyze it before addressing it. It’s easy to immediately lash out verbally in retaliation, especially if the words or actions were unjustified or unfair.

We are all familiar with words said in anger, and despite the nursery rhyme about sticks and stones… some words wound and scar.  Only you can determine the intensity of the exchange and whether forgiveness is an option, but without resolution, you may find yourself bitter, not better.  This decision to repair can be rapid or take years, but it’s worth considering for a calmer, happier life.


Many people cannot or will not deal with conflict.  If you’re one of these, consider how repairing the friendship will affect your life.  Usually, it clears the air, and both people can move forward.  No matter the timeframe, carefully choose accurate, but kinder words to explain how you feel – whether you are the deliverer of the harsh words, or the recipient.  It’s now time to fix the error, not to blame or shame.  This may not be possible on the first try, and you may find that some conversations are not recoverable, and that door must be closed. 

If both people are open to nurturing a relationship after harsh words – which happens to all of us – it is possible to move forward, even without an apology if that occurs.  Respectfully hearing or saying that the situation is now regretted may be enough to begin the healing.  Perhaps the apology is at first a Band-Aid.  But, over time, when forgiveness is applied and the situation is not a repetitive pattern of hurt, relationships can grow stronger than before.

Why is it that as small children we could easily say we were sorry when we knew we were wrong?  Why is it hard sometimes to stand up for ourselves when we have been wronged?  Either scenario is made better with resolution and kindness.

Forgiveness frees and releases the pain and increases self-respect and respect in the relationship.

Linda Kreter & the 
VeteranCaregiver Team

Korean War Veteran Caregivers

All Caregivers matter to us.  And, learning about illnesses and conditions other era caregivers experience helps when meeting another caregiver during a VA appointment or at a veteran event.  Specifically, cold-related injuries and nuclear testing radiation exposure trouble many veterans of this era.

Korean War conditions include some today’s conditions, but the prevalent differences were cold-related injuries.  Frostbite and Trench foot, were major problems during the Korean War.  Veterans of the Battle of the Chosin Reservoir had especially high rates of severe cold injuries, and over 5,000 troops required evacuation for the effects of cold injury during the winter of 1950-51.  Many veterans never sought VA help due to battlefield conditions or because their service medical records may no longer exist. 

Long-term delayed symptoms include peripheral neuropathy (nerve pain), arthritis, foot problems, stiff toes, and cold sensitization.  Age may worsen these conditions, and complications such as diabetes or peripheral vascular disease put them at higher risk for late-in-life amputations.
Photo:  John P. Collins
Many Korean War veterans may have participated in 250 atmospheric and underwater nuclear weapons tests conducted primarily in Nevada and the Pacific Ocean between 1945 and 1962.  These vets are known at A-Vets or Atomic Veterans, and number 560,000 troops. Approximately 195,000 surviving "Atomic-Vets" alive today may not know that their "oath-of-secrecy" tied to their nuclear weapons testing duty has been lifted, allowing them to now speak freely of their personal experiences.  A-Vets may be entitled to "service-connected" benefits for illness caused by their exposure to atomic radiation particles while on active duty, and benefits are also available to spouses of deceased Atomic-Veterans.

The National Association of Atomic Veterans is a strong resource, and please go to the Video Resource section of www.VeteranCaregiver.com to have a larger list of resources mailed directly to your inbox.  We appreciate the caregivers of the Korean War and hope that caregivers of every era support one another in whatever ways possible!

Linda Kreter & the
VeteranCaregiver Team


Thursday, June 9, 2016

Plan Ahead with a PTSD Alert Signal

Let’s talk about PTSD and triggers – and a way to communicate ahead of a full-blown anxiety situation.  As you become more familiar with what causes situations to move toward a negative situation, or a rising sense of foreboding, you’ll likely learn what triggers set off you or your family member.  Yes, it’s important to include you in this equation, since many caregivers also have accumulated symptoms of secondary PTS, and the resultant hypervigilance, mood changes, effects of insomnia, and stress.

Working together as a team, a family can learn to mitigate certain situations, such as crowds, loud and volatile situations, including family holiday dinners.  Creating a non-verbal signal puts you and your family member in charge of alerting one another.  Keep it simple, a tap on your wrist, a hand signal or perfect the Let’s-Get-Out-of-Here-Soon glance.  Demonstrating that you understand your family member (or you) are feeling rising anxiety, stress, or discomfort with the situation is helpful and allows you to more gracefully depart most situations promptly.  What a relief to avoid gutting out every difficult occasion! 

Recently, I heard a wonderful follow-up to this trigger signal by a smart and thoughtful caregiver named Lauren.  After these signals are given, departure is complete, when the next quiet moment comes, she and her husband engage in a short discussion.  Either one asks: First, are YOU okay?  Second, is the Situation okay now? And, Third and most important, Are WE okay?  This is a strong team effort that is kind and intuitive.


Take time this week to create your own PTS Alert Signal, practice it until the all feel united and comfortable, then consider asking those three key questions to keep the calm channels of communication open and willing. 

Linda Kreter & the
VeteranCaregiver Team

Friday, May 13, 2016

Autism Caregiving: Early Diagnosis & Early Interventions

VeteranCaregiver receives inquiries every month about information and support for military and veteran caregivers also caring for a child with Autism.  There is a great deal of crossover in caregiving with the lack of time, overwhelm, fatigue, concern, and lack of adequate self-care.

We’d like to raise awareness about early diagnosis and early interventions. Timing can be critical in life, and just as with TBI and PTSD, the sooner effective treatment begins, the more beneficial the outcomes.  Earlier genetic testing can provide earlier interventions, critically important for future capabilities and quality of life.  Please seek the advice of your care team with questions about your personal situation.

Autism is the leading developmental disability today, with nearly 3% of the population falling on the spectrum.  While leading experts have yet to find a definite cause or cure, there is help and support available. We recently interviewed Scott Fowler on our radio program.  He is a retired special education administrator, an Autism Subject Matter Expert -- and a parent caregiver of a child on the spectrum.  A common saying is that if you know one autistic person, you know one autistic person, since each are unique.  The radio program is titled More Alike Than Different and is available on Military Network Radio.com (http://bit.ly/AutismEarlyDx).  
Coming soon:  Autism Outreach Network
Autism is diagnosed through often lengthy behavioral observation, with most diagnoses coming between the ages of four and five.  This is the ‘diagnostic odyssey’, referring to the time-span from initial concerns to an actual diagnosis. New technologies now make diagnosis possible through specialist referral to genetic testing from birth forward, which can lead to available interventions at an earlier age, which is an advantage to your child and the family.

Occupational Therapy and Speech & Language Therapy are the two most commonly used early interventions.  Occupational Therapy addresses the child’s relationship to the environment around them and Speech Therapy helps with the range of speaking issues that promote communication. The sooner these services are started, the better the overall life outcomes for your child. 


Parents have highly attuned intuition about their children, and if you have doubts or concerns about the timely development of your child, don’t wait, but talk with your care provider immediately.  Ask directly about diagnostic genetic testing and for prescriptions for both occupational therapy and speech/language therapy evaluations and have them completed.  You are building your child’s care team, and the sooner you act, the sooner your child can realize their fullest potential.

Linda Kreter & the
VeteranCaregiver Team