A day in the life

A Day in the life

As I was going through my documents to prepare for meeting with our
representatives in Congress, I saw this story. I had written this for a
freelance job, but it was not published.

On this day, I am now fifty-one and my aunt has moved up into heaven as of
two years ago. This piece illustrates what many caregivers go through. Now I
just care for my husband and my senior citizen dog, Ted. My son is now twenty
four and he is self-sufficient and we are proud of him.

I woke up before my alarm after about four hours of straight sleep. My eyes
felt a bit grainy as if I needed to go back under for a couple of hours.
However now that I am forty-six, I am like a senior citizen.

Once the sun is up, I am awake. I am close to eating my dinner at 3pm as
well. Hahaha. I got up and saw that my husband left a bottle of medicine next
to my side of our sink vanity in the bathroom. That means he needs a refill. I
get him to wake up after he put on his pain patch as it makes him very sleepy
for the first hour or two. We eat our breakfast and then it is time to blaze
the road to the VA in Temple, Texas. It is about an hour drive from our home,
and we allow extra time because there is ALWAYS construction or some idiot
tying up the road which is only 2 lanes during some of the drive.

The appointment with the doctor went fine and the doctor ordered lab work,
which is routine for my husband with his myriad of health issues. We go to the
desk. He asks the clerk if he was having a good day and he just stares at my
husband as if he has 3 heads. My husband is hard of hearing due to the brain
injury he suffered. I looked at the clerk and said, “Did you hear him? My
husband asked if you were having a good day.”  I smiled at him, as I know
most of the employees are nice, are overworked, and underpaid. He looked at me
stonily as if I were asking him if he would like me to pull his fingernails
off.

We walked away. Then we went to the Travel line, where the VA reimburses you
mileage if you must drive over a certain distance. It is not a tough process
and I think it is pretty awesome they do that. The woman behind the window
responds happily to my husband’s query as that is his greeting to everyone we
see behind a desk.

Three hours later, we are eating lunch and its go time to get back to our
home as he had a civilian doctor’s appointment. At this stage of the game, we
use more civilian providers for things as the offices are only 5-30 minutes
from our home, which causes less physical discomfort for my husband.

I had to drop mail off at the Post Office and then we get to his doctor. By
this time, I am yawning a bit and my brain is screaming for some good dark
Columbian coffee. We get through this appointment, and we walk in the door. My
elderly aunt calls me, telling me her nebulizer broke. She uses that for
breathing treatments and she has end stage lung disease. I start mentally
panicking as I think where I am going to get one of those, it is the end of the
business day, and it is Friday. Then I see my husband’s empty pill bottle in
front of me.

It was a Friday afternoon, and the pressure was on. Was I going to be able
to reach his doctor’s office in time to get the authorization necessary so he
would have his medicine over the weekend? Was I going to be able to find my
86-year-old aunt the equipment she desperately needs? I email the doctor’s office
for my husband and call them on the phone to light them up. I call my aunt’s
oxygen supply company thinking since they provide air, they must provide
nebulizers. They do not.

I start calling the local pharmacies around our area and find out that
Medicare only will pay for them with the bidder in the area that won the bid
for durable medical equipment. What? How would an elderly person who does not
use the internet figure this out? Thank God for Google as I googled, “Medicare
provider for equipment in Hutto TX” and there it was, the golden goose of
supply companies. I call her doctor after talking to the supply company as I
cannot buy the nebulizer for her without a prescription for it.

I look at the clock and its 5pm. My heart is pounding as I think about all
the deadlines and things outside of my control. My phone rings and it is my
aunt, telling me her nebulizer is fine and it just had a tube unplugged. I
laughed so hard. My phone pings, telling me the prescription is ready for my
husband. Like a boss, I roll through the drive through and pick it up, crisis
averted.

I got home and as soon as I walked in the door, the dog told me he needed to
go outside and take care of his business. As we were walking down my street, I
breathed in deeply and took in the fresh air and looked at the flowers I saw in
front of the various homes on my block. I listened to the birds happily
chirping and saw a Cardinal fly in front of us.

It was a gorgeous day. I put out all the fires I had to and chuckled to
myself at how close the timing was. After we finished his walk, I made myself a
cup of coffee and sat on my porch and relaxed. I read a book and mentally
unwound and re-wired myself at the same time, thanks to my Columbian friend.
What a day. Always an adventure.

 

Turning the Blast into a Blitzkrieg

Last Thursday, it was 11 years ago that I had to quit my career and become a caregiver of a wounded veteran. The “blastaversary” as I call it.

I had my 50th birthday in September and thought of the many dreams I have yet to accomplish. Many of them involve travel, which involves $.

I know, your mind is totally blown away that caregivers of wounded veterans living on VA disability pay aren’t living the lifestyles of the rich and famous and that we live like senior citizens on a “fixed income.”

Crap, I am almost a senior citizen.

I have not been able to contribute to a 401K for 11 years.

I am nostalgic for my old paycheck.

I tried once to work outside the home. I had a job as a part-time Producer at a local AM radio station. Honestly, music radio is totally my bag and this was not. The scanty pay was not worth the toll it took on my husband.

I do freelance writing and media work and makeup work on the side, but none of it is enough to equal a nice fat paycheck.

I realized what I needed to do was manifest my dreams, take charge of my life, get out of my comfort zone and just do it! (Insert Shia Laboef screaming here).

I made the decision to create my own social media marketing company and schedule my work around my caregiving duties.

On the “blastaversary,” I decided after his Equine Therapy session that I was going to drive to the County Clerk’s Office and while he slept in the car, I registered my business.

Puns and humor have literally kept me sane during the past 11 years. It is only suiting that I chose a WW2 bomb as the background of the logo for my business, as it was an IED that literally blew our life apart.

Here’s to accomplishing some dreams!

Time for a change

It breaks my heart as I am reflecting on today’s American culture and what it was like in 1992. Sadly, many of the song lyrics in Public Enemy’s Apocalypse 91… The Enemy Strikes Black still ring true.

I remember thinking how much still needed to be fixed back then and I don’t see a whole lot of progress. It was my senior year of college at S.U.N.Y. Buffalo, when Rodney King got accosted in LA and the riots started. I had to leave the WBNY radio station that night with a security guard for the first time ever. I had never felt fear before living in America.

I can remember that year (before the riots) and getting pulled over by the cops. I had attended a concert and was riding in a truck with two of my black male friends. It was 3:00 am in the east side of Buffalo. A police officer pulled us over and flashed his flashlight in my face and asked me if I was o.k. I got frustrated for my friends. The officer asked me twice. My friends were quiet as the questioning commenced.

It angers me that this profiling still exists.
Sadly, there is bad in every culture, sub-culture and occupation.

We need to come together as Americans and turn this crap around.

Ten

Ten years ago I got a call while at work from Red Cross that changed the life of my family forever.

Todd was deployed to Afghanistan as a Calvary Scout with the US Army in Ghazni. Several times the mission got called off, because air support was being tied up looking for one of the biggest d-bags in history.  I am not even saying the selfish bastard’s name, as he doesn’t deserve the font.

Despite that, the mission went on, my husband was so badly injured they didn’t think he would make it and he lost two friends in that blast. Todd almost died on me two weeks later after he was back to San Antonio.

Ten years ago was the last time I got a good night sleep. Ten years ago was the last time our son had a father that could run and play with him.  Todd never ever got sick, never had to go to doctors.

Ten years later even that has changed. Doctors and therapists continue to make up a big part of his life today. Kind of ironic there we were today, at the doctor’s office both wearing masks to avoid him catching anything worse from the great unwashed around us. We looked like a set of masked Bonnie and Clyde together.

Ten years later and I still watch him suffer in excruciating pain. Ten years later the war is continuing in Afghanistan. Men and women who weren’t old enough to be born when the Berlin Wall crumbled are going to be facing catastrophic injuries like Todd.

Those that know Todd, never hear him whine or complain about his pain or his vast health issues. He stands to greet anyone that walks up to him at a restaurant. He is a gentleman. No brain injury can take that away.

Ten years later, thanks to Equine Therapy, Todd shows smiles that reach his eyes. He finds acceptance in the big gentle presence of the horses. He thankfully has received help through the Wounded Warrior Project’s Independence Program, which helps moderate to severe Traumatic Brain Injured Veterans. It provides recreational therapy and helps veterans learn a new art or skill.

He has been able to participate in photography classes and learn to develop film in a dark room. He will be having a show of his work December 2nd

Ten years later and I am still so very thankful to God that he is here.

Number 9

Yesterday 9 years have passed since my husband was almost taken away from me twice and a bomb literally blew apart life as we all knew it.  I didn’t know quite how I was going to write about this as no one wants to read something depressing.

I don’t want to focus on the loss, but life as we go forward.

I am not going to lie. As a caregiver, I have posted some really raw posts in the past. I did not want to mince words as I know other caregivers that come after me need to see something they can relate to as they start the journey of healing with their veterans.

Ambiguous loss is ambiguous loss after all.  Some days will come up and make you feel things you have thought you have safely crammed into the vault of your mind, never to come back up. It is ok to sit there and feel, but don’t camp out there for too long.

Establishing your new identity after you leave your career is tough. I had a lot of struggles with this for a lot of reasons, I will elaborate more on that in a different post.

Instead of telling people I am my husband’s caregiver, I tell them I am his trophy wife as it’s funnier and its less depressing than trying to explain to civilians that don’t understand TBI or complex war injuries why exactly you are his caregiver.

One of the most important things I learned early is to look daily at each positive thing you can see. Our brains focus on pain as the brain’s primary role is to make us survive. When you continually look at the negative that is all you will see. I kept a journal on progress I saw with each doctor visit and on tough days, I would look at it and would see progress, even if on a small scale.

Let go of trying to run everything. You can’t control disease, you can’t make missing legs, brain cells or blood chemistry be magically fixed. You can’t make your veteran try the latest and greatest therapy, surgical procedure or pain management notion if he doesn’t want to do it. I insist on him keeping his autonomy. I am his spouse, not his mother.

What you can do is fix you. Learn how to be a healthier caregiver. Get counseling ASAP, get your health screened and monitor your moods. Caring for people with invisible wounds of war can be very emotionally draining at times.

Charge your batteries and plan something to nourish your soul. I just did inventory on myself and noticed I haven’t taken a dance class in a few years so I need to research and find one that works with my schedule. I also haven’t written in a while.

Laugh as much as you can. Thank your lucky stars that you have your true love. My husband told me to leave him for a younger, healthier man while he was inpatient at Brooke Army Medical Center. I told him after 15 years of marriage (in 2009), I had him perfectly trained and I was never walking away.

Reconcile your life goals. What you thought would happen while you were a cheese eating high school kid is not going to be what reality serves you, ever!

No one dreams about leaving all of their hopes and dreams and professions behind to care for their spouses or family members.

Caregiving does not have to be your end all, be all.

Life may not be what I envisioned when I was starving and putting myself through college to be a Journalist, however I am still making an impact.

Learn new stuff. Do not stagnate. My husband, even with a moderate brain injury with the help of the WWP’s Independence Program has learned dark room film development and takes black and white pictures. He is really good. Check out his stuff, https://www.instagram.com/toddplybon/

I have learned that physically and mentally I can do whatever I put my mind to. I am unstoppable. I have fought the VA for almost 9 years for one thing or another. Connor MacGregor has nothing on this scrappy Irish gal. I have lost 120lbs and got healthy so our son wouldn’t ever have to caregive for both his his father and I.

Date each other. When someone goes through a brain injury or even suffers from PTSD and other mood disorders and they are still able to communicate and engage with you, you need to engage each other as partners.

Take off the caregiver hat a bit and learn how to effectively communicate with each other as this really changes.

Laugh. Laugh and laugh more. The darker the memes, the more we laugh. Watch comedy shows. Pull your veteran away from the news and put on something dumb and cheesy like Weekend at Bernie’s. Put on the stupidest, silliest show and don’t relent. Focus on fun.

Plan fun. That is right. Besides the 15 medical appointments you plot in two weeks, plan a fun day. I love dressing up randomly when I take Todd to the doctor as he wonders if we don’t have something else planned that isn’t in the calendar. I tell him it’s for him since he makes the most handsome arm candy. The handsome smile that results in him showing his dimples makes it worth it every time.

Todd lost his friends the day we both lost life as we know it. The best way you can honor the loss of your friends is to life the best and happiest life you can in their honor.

 

 

Five Year Evals

November of 2017 was a challenging month. We had our bank account hacked by a thief and after that experience, I was particularly paranoid about anything financially-oriented at that time.

Todd is pretty sharp, but often he is fatigued and he always wants to help whomever he speaks with. We received a call from a third party doctor’s office telling us the VA wanted to evaluate him for his TBI ratings and PTSD ratings. I thought,” Hmm that is strange as he is 100% disabled. Why would they want him to go through all of that again?” I reached out to our Caregiver Service Coordinator and she wasn’t aware of why it was required.

I reached out to a few knowledgeable people in the care giving community and they didn’t understand why, either. I called the company back, asking if it was necessary, as the last neuro-psychology evaluation was 6 hours of pure torture for my husband. She said,”No, it isn’t mandatory.”  I said,”We politely decline at this time as we are content with his 100% rating.”

Fast forward to February, 2018. We received a nasty gram from the VA telling us that due to not complying with getting Todd re-evaluated, he was at risk for losing his percentages due to each specific condition. This would eliminate his paycheck. We had to buy a new to us home two years ago due to our old home getting flooded underneath of it and our insurance refused to help.

I contacted them and got him into each appointment they requested him to go to. I sent copies of all of his treatment records from his medical team, (yes team of 8 doctors he is currently having to deal with.) I found out that we could use a Veteran Service Organization (VSO) and have them file for permanent and total disability.

To say it is stressful having the fate of your paycheck in the hands of bureaucracy is the understatement of the year. My hair is naturally full of gray now, I joke that soon it is going to fall out.

I could see the VA questioning someone who never goes to the doctor to make sure they aren’t being paid for benefits they don’t truly need. However, when you have days upon days of treatment records for the past 9 years from a medical team of doctors, why waste tax payer money and why take any sort of self esteem that a veteran managed to be rebuilt over 9 years of post injury healing and hurt it?

I was confused in thinking because Todd was PDRL (permanently disabled by the ARMY), that the “permanent” status was transferred to the VA. I should have known better, but I didn’t go to college to learn about the VBA and how it considers or doesn’t consider at all, the condition of the veteran.

Since I initially posted a bit of my frustrations of this on FaceBook, I found out that the VA considers certain conditions like TBI and mood disorders “soft diagnoses,” meaning they might improve over time and that every five years they will put the veteran through an evaluation to see if things have improved .

I have yet to see damaged brain matter grow back or severe PTSD be magically cured.

 

 

 

Moving Forward

Us all fancied up.
Todd and I at our vow renewal. He still makes my heart a flutter after 24 years.

Todd was critically injured on our anniversary.  It was our 15th year one, to be exact. Not only was he badly injured, but he lost two of his friends at the same time. Most of you who have been through combat understand that these sort of losses are never forgotten. The survivor’s guilt that comes along with it never leaves.

At first, I vowed that somehow, we would still honor our anniversary. Seriously, the Taliban almost got my husband, I refused to let them get our day, too. However, the invisible wounds of war are some of the worst and as September would roll around, the dark cloud of grief would roll in right at the end of the month, smother the joy out of the whole month of October and linger until November.

I am proud of my husband. He puts in the painful work with his counselor to be compassionate to the grief of this and other horrible experiences from war. We see a neurologist for the chronic migraine sort of headaches my husband endures as a result of his moderate brain injury. He is one of the best doctors I have ever seen. His empathy, kindness and emphasis on neuroplasticity has been very helpful for us moving forward. He was the one that first thought up the idea of getting a vow renewal as a way to move forward. We had never considered it.

Neuroplasticity is the concept that the brain is focused on survival. The brain is designed to remember pain first in order to keep you from hurting or killing yourself. When a brain injury occurs, the millions of pathways in the neurons and blood vessels are damaged, blocked, and eventually the brain starts re-wiring itself. Neuroplasticity explains that when you provide your mind with positive things, that it helps the brain create new pathways that connect its memory to enjoyment. I have to say this really does help. For the past 3 years, horse therapy has been one of those purposeful joys that really has improved my husband’s quality of life.  His recreational therapist has also been extremely helpful. Providing him with something new to learn, in his case photo development with black and white film. This is an amazing new hobby and he is really getting good at it. He is really engrossed in learning all he can and we bought him an SLR, too.

Check out http://reset.me/story/neuroplasticity-the-10-fundamentals-of-rewiring-your-brain/  There is also a great book our doctor recommended on Amazon called Neuroplastic Transformation Workbook by Michael H. Moskowitz M.D.  http://a.co/78gQp26 

I recommend it for you caregivers as well. Your lives are just as important, and your mental health equally so. No one deserves to be unhappy or unfulfilled. Do this bit of work and you will be rewarded. Seriously, what do you have to lose?  That is also one of the helpful things for me on the darker days that still happen but fortunately not as often in a week. I work on something that brings me purposeful joy like dancing or being outside.

I haven’t written much in this blog in two years.  Life has been super busy in the past two years and my mind hasn’t wanted to dig into the deep cathartic emotional topics. In the past two years we have been on a really good path. I became a caregiver to my elderly aunt, and having her close by and getting to spend time with her has been a joy for me. She has the most can-do attitude better than most people my age. She isn’t afraid to speak her mind and she is sharp as a tack. She honestly is one of my role models.

I really have been focusing on mindfulness, which is a huge complement to neuroplasticity. http://www.mindful.org/meditation/mindfulness-getting-started/

Basically you reframe your thoughts on what you’re dealing with. Instead of saying,”Sigh..I have to drive us to the VA today and deal with a lot of painful bureaucracy,” I try to think of it as,”I am lucky my husband is here in my life. I get to hold his hand and walk through the VA today with him. Let’s see what we can accomplish.” The focus on a more positive aspect really helps. I will even put on a cute outfit, just to make him smile.

Those that know me personally know I am a dark, sarcastic and very skeptical thinker. Kind of like an artist/scientist hybrid. A mathematically challenged scientist. Some of my favorite memes deal with Skinner’s cat.  Alright, back to the original concept of mindfulness.  You can go on YouTube and find a lot of free stuff. This is really fantastic. There even are mindfulness concept coloring books. Feel free to share your Skinner memes with me though, they truly crack me up.

You have to have humor in your life as that makes it all bearable.

 

 

 

 

PLIGHT

If you have made it this far, you are wondering what in the heck this subject heading is about. Sure, I made it obscure, but after the past half of a year of watching my husband and seeing what is going on with his health, I had to comment.

After six years of living with a limb salvage patient suffering with pancytopenia and a hot mess combo of more.., I have noticed a pattern of good days and bad. Like most people dealing with chronic pain, they can present better to friends and family for a few days and then after that, their resources are gone and boom! Mic drop.  Nothing left, just bed or couch-bound.

Six years of using a cane on his dominant arm to compensate for his bad leg when it collapses when he walks has taken a toll. It’s so sore it keeps him awake and uncomfortable past the pain relief he uses for his back and limb salvage in his leg.  The twisting way he has to walk when he doesn’t wear the uncomfortable brace lurches his hip in a way they aren’t meant to twist. Degeneration is happening.

He has tried cortisone in his shoulder joint and it was as if he got shot up with water. I have had them in the past for my own health issues and they provided help, but for some reason my shoulder has been resistant to any sort of change too.

On a positive note, I had RF Ablation on both of my hips over 5 months ago and the deep bone pain is gone. I wish I could get my husband to try it as I hardly have to use any sort of Tylenol or anything to help with the aches! To me, it is as if I had received a gift from God.

The past few years have made me very aware of my health and how much I need to take care of myself for the rest of my family. If you were suffering from anything, wouldn’t you get it taken care of or try to get yourself in as best of a way of feeling better as you could? Why would you want to make your family suffer in watching you endure constant suffering?? There are other things that can be done to help chronic pain such as RF Ablation. It has helped me so much. I see reports all of the time about HBOT (Hyperbaric Oxygen Therapy) and how much it helps physical and mental issues. Also, there is a new shot that goes in the Ganglion nerve in the neck that helps reduce the symptoms of PTSD right away.

When do you stop researching as a caregiver and when do you push and how do you know the difference? I recognize it as poking a literal bear. Make a recommendation and then gingerly tap dance back to my corner.

So what do you do?? Any of you veteran caregivers of veterans have any advice?

My man got blown up in Afghanistan and all I got is this crummy case of secondary PTSD and severe insomnia. Give me your free stuff.

My spouse got blown up in Afghanistan and all

I got is this crummy case of secondary PTSD and severe insomnia.

Forget the T-shirt! Give me your free stuff.

Let me bleed your non-profit dry. America owes us.

Six years ago we were newbies to the whole wounded veteran community. There were barely any resources out there on the Internet and as soon as Facebook really got going, it seems there was a new resource page added weekly. Somehow, I kept being automatically added to these groups. As soon as I would look at one, it was only a matter of a day or two before someone logged in with the question,”My husband got blown up in the war so is there an agency out there that will pay for our move?”  “We need a slab poured for our RV. Can so and so help with that?” Since when is an RV an emergency, a necessity, or something that requires others to assist you with?

Really? You didn’t foresee a move coming up in your family’s financial future? So why wouldn’t you start budgeting and saving money from the time you found out that you needed to leave your area? I get that emergencies/family issues happen. However, here are some of the others I have seen. “I need new tires on my SUV. Is there an org that can help with that?” “My veteran has PTSD, he needs a new chair that provides massage. Is there an org out there who can hook us up with that?” Or even better yet, “We need a new bed. Can someone buy us a Sleep Number bed?” I have heard women say that “America owes us. He sacrificed his life and got hurt, he deserves..xyz.” The sacrifice our military makes for our nation is not anything I would disagree with. However, at what point does personal accountability start and laziness end?

So if a massage chair fixes PTSD, what does a platinum-covered Japanese-manufactured and Tiffany’s logo-branded marital aid do for secondary PTSD and the rest of the issues caregivers suffer from? I want one of those!

What happened to personal accountability? We have a lot of medical bills that Tricare/Medicare don’t cover. We pay them ourselves, in addition to all of the other bills grown ups face in life such as new tires, house repairs and utility issues, car issues.. etc. You name it. Just paid $1700 worth of car insurance for six months. Yes, bills are horrible, but they are a part of daily life whether you are a veteran, a caregiver, a Leprechaun, or a Mummer. Bills exist and sadly, we all have to pay bills.

When you own a home, there is always something that needs to be repaired. Cars always need maintenance. If you can’t afford your car payments and your home payments and you are driving a fancy SUV and living in a fancy big home, you might need to switch to a Hyundai and move somewhere more affordable. Live within your means, people!  If money is tight and you only have one child, do you really think you can afford two more?

Non-profits are not there to supplement your income. Some are there to help you in a crisis, such as a short-term issue like the time of which you don’t get paid when you convert from active military to VA disability payments. It takes a good month and a half for that to switch over. When you know you are getting retired, start squirreling money away to help cover that gap. Be proactive, not reactive. Credit cards are not real income. If you use credit and you can’t pay it off, you are living under false financial pretenses. .

I don’t see many caregivers just wanting support and answers about health/medical/benefit questions, but more on material requests. What happened to helping each other out and giving advice and helping someone navigate through the bureaucracy we all have to tangle with? Many are in need of respite and retreats to have a bit of recharge time to themselves. Why not share the information when you hear of things?  What can you give me for free has become the mantra of many. Not what have I learned that I can share, but “gimme gimme gimme.”

My family and I were very fortunate in the kind things that some groups have done for us in the past, however we did not seek out those things.  Having a combat wounded veteran does not entitle you to spend all of his benefits and then look around for more which comes from either donors or tax payers. Entitlement is the plague of our nation.

grabbing hand