Friday, October 13, 2017

When the VA Hospital calls a Code Blue during a Seizure

Here's a story for you. This week, while at the VA for a CT scan with contrast (for my husband's nasal cavity. It was ordered in JUNE... it's now October. That's a whole other issue) just as the CT was finished, Tony began to have a Generalized Seizure... Now, let me explain to you how I usually handle things when he is having any kind of test or procedure. I usually go back with him and warn the person performing the test or procedure that he has seizures frequently and to just be aware in case of the event that he has one, so that they aren't taken by surprise or people start to panic. Well this time the man who came to get Tony whisked him away, not allowing me to follow or speak to him and told me to wait in the waiting room. I did as I was told, against my better judgement. Tony has a brain injury and I'm his caregiver. There is a reason he needs a caregiver folks. He doesn't think to warn them of such things. Let's not forget though, this is the VA Hospital he gets all of his care at and his record is full of everything they need to know, including his frequent seizures. But, why would they look at that? Pfffft.

Anyway, back to the main story. Maybe 10 minutes after he had gone back for the CT, I heard noise that sounded like Tony often does when he is having a generalized seizure (a loud guttural sound when the air is being forced out of him with muscle contractions). I didn't want to run back there without being sure, so I hesitated. But as soon as I heard them call a code blue in CT over the speaker. I went straight back there. And let me tell you, it was chaos! Everyone is coming from all directions like a chickens with their heads cut off. People are yelling back and forth that he's having a seizure and trying to grab at him. They wouldn't allow me into the CT room to check him. And I kept trying to calmly explain that I'm his wife, his CAREGIVER and he has seizures frequently. I just wanted to look at him to determine if this flipping code blue and hysteria of the magnitude that it was, was necessary. They wouldn't let me near him of course. So I went to the VA Hospital ER where they quickly wheeled him off to and watched while they were all crowded around him administering medication, taking blood, taking vitals etc. I could see that he was beginning to have another seizure and warned them he was having another one. While having the seizure the ER dr is telling him "Tony, calm down. Relax" I was like, he doesn't know what you're saying.... he has no control over anything right now... but whatever dude. They administered 4mg of Ativan, which is the highest recommended dose for status epileptus, AKA enough Ativan to take down a baby elephant. That was just fine, playing it on the safe side because they weren't aware that 2 seizures back to back is also common for him.

The seizures were pretty intense, but nothing he hasn't had before. I deal with these exact seizures often. I explained all of this to the bazillion people asking me "Has he ever had a seizure before!?". I'm actually surprised by how nervous the staff got. Maybe I've just become THAT desensitized to his seizures because I deal with them so often? I do appreciate that they were ready for worst case scenerio, but had they listened to me or at least looked at his medical record, it wouldn't have been such a dramatic scene.

After he was stabilized, the ER dr told us that he wanted to admit him for a couple of days. I asked for what exactly, because this wasn't a new thing and they don't have a seizure monitoring unit. He said it was protocol, especially because he had 2 significant seizures back to back (which again, isn't new). We thought about it and due to the fact that he wouldn't have constant supervision when I had to leave the hospital to care for our children, we decided we would not allow them to admit him. He was safer with me in the event of a seizure, than he would be alone in a hospital room. Thankfully the ER dr was nice and Tony's case manager, who also happens to be a nurse, was in the ER when it all went down, so he kind of helped vouch for me and my ability to care for him as well.

Tony has had many seizures in public before, but not in this kind of situation. Plenty of excitement to last me a while was had that day!




Tuesday, September 5, 2017

What is a Caregiver?

Being a Caregiver means completely different things for different people. Every Caregiving roll is unique.

Here is what being a Caregiver is for me: As my husband's Caregiver I am his his full time supervision, personal aid, daily planner, chauffeur, personal assistant, chef, support.... it means long days, longer nights, worrying, making tough decisions, protecting him, handling seizures, handling meltdowns, handling anxiety attacks, handling mood swings, ADVOCATING, fighting for what he needs, working with drs, researching... on and on and on...

There are so many aspects of his medical issues that people don't see. There are so many things that are too uncomfortable to talk about. Even our closest friends haven't seen it all and don't know all of what goes on when they aren't around. This is the part that makes being a caregiver so lonely. The balance between garnering support, creating awareness and maintaining a degree of modesty, is delicate. Some nights, as a lay awake after a particularly rough day or a bad seizure or an awful meltdown, I want nothing more than to pour it all out on Facebook (or something like that), so I can just talk it out. But I know, some of it my husband would be mortified if I discussed it. Or at least uncomfortable and embarrassed.

I have many sleepless nights, either because I'm taking care of my husband, or because I'm worrying about money, or I'm worrying about my husband, or I'm researching things for his treatment.... I have many days where I am afraid this is the day he will be hospitalized for a breakdown, or this is the seizure he won't come out of. I am in a constant state of high alert. It isn't safe for him to be left alone and even taking a shower leaves me fearing he'll get hurt while I'm in there. 

When I am sick, I'm still his full time caregiver. When I have a migraine, I'm still his full time caregiver. When I am tired, I'm still his full time caregiver. When it's my birthday, I'm still his full time caregiver. I am his full time caregiver, 24 hours a day, 7 days a week. The VA Caregiver Program doesn't think I am worth more than part time though, which is such a huge slap in the face. He has several seizures a week, that require me to take care of him fully, including physically moving him, cleaning him etc. His meltdowns and panic attacks require me to help him through them. I have to manage his  medication. I have to make all of his appointments. I have to be with him at all of his appointments. I have to help him remember simple things. I have to help him with his CPAP and mask throughout the night. When his sleep disturbance keeps him awake, I must be awake. When he has hallucinations I have to keep him safe and manage him when he's inconsolable. I must deal with his mood swings and outbursts. And this is just some of it. He is my full time job. Without my care, he would either need a round the clock aid or to be in a facility. Both of which, would cost substantially more than what paying me as a tier 3 caregiver, would be.

But at the end of the day, he's my husband and I love him. I will keep fighting for him. I will keep advocating for him. And I will keep taking care of him.

I am a Caregiver.

Monday, May 8, 2017

Finding your place, when you don't really fit in anywhere

This is a subject we are really struggling with. My husband especially. When it comes to the Traumatic Brain Injury and PTSD world, he doesn't really fit anywhere. His injuries are 100% service connected, but he's not a combat injured veteran. He has PTSD from service related trauma, but it wasn't combat trauma... so he's kind of disregarded by the VA in that respect. He served in a combat zone, but was not injured then. He's a 100% disabled veteran, who is too disabled to work and requires me to be his full time caregiver, but he looks "normal", he has all of his limbs, he can walk, his head trauma was closed head. He requires help with regular things every. single. day. though. Looking outside of he whole disabled veteran thing, he doesn't fit into the civilian head injury population either, because of the vastly different experiences.

The VA here has a PCT clinic, which is specifically for veterans with combat PTS. They don't have a regular PTSD program that covers non combat PTSD. They have no TBI clinic or program at all. They just address combat TBI in the PCT clinic. So here, there is virtually no program for my husband's situation. What he really needs is a poly-trauma program like they had in CT, while he was still active duty. But that isn't available. The combat veterans absolutely need the programs they have for them, but how about the other veterans suffering from the same conditions that just aren't specifically caused by combat? Why are they forgotten about and thrown to the side? His 18 years in the Navy resulted in him medically retiring so disabled that he can't function normally, but now there are no programs for him? His TBI isn't important enough for proper treatment? His TBI isn't the "right kind", so he isn't worthy of the care that others are offered? Am I the only one that thinks this is a problem?

I know there have got to be other people in a similar situation as him. I just haven't found them yet. It's really hard for him. He's been through hell and I hate that it's diminished because it wasn't combat. The two of us are out here kind of just floating around, loosly connected in several directions, but not actually fitting into any one place. I'm still trying to find where we fit.

Wednesday, April 26, 2017

What do you do when a VA Social Worker/Therapist gives you an ultimatum?

What do you do when your VA social worker, who is your therapist, gives you an ultimatum? This question is kind of rhetorical and kind of really a question. That is exactly what happened to my husband at his mental health appointment last week.

I am present at every single medical appointment for my husband. Both out of necessity and out of desire on his part. I am responsible for getting him ready to go, driving him there and helping him remember what needs to be discussed and/or addressed at the appointment. As far as his mental health appointments, he has told them that I am his safe place and he feels more comfortable talking, with me present. This is something that had began while he was still Active Duty in the Navy and proved to be much more effective, because he was actually able to address issues with me there, where he had previously struggled to have any kind of successful therapy without me. His memory issue are a big reason for that and the fact that due to past trauma in the Navy, he struggles with being alone with people, especially medical people. He desired to continue this as he transitioned into the VA system. This wasn't an issue... until it was... last week.

As we sat down in my husband's mental health appointment, the social worker immediately brought up wanting my husband to do the appointments without me there. My husband asked why and told him that there was nothing he couldn't talk about in front of me and that he was much more comfortable with me continuing to be there. The social worker told him that if he wanted me present that he would have to start seeing a different provider for couples therapy (let's be clear, this has NEVER been "couples therapy"), but he wouldn't continue to do therapy with him unless my husband was alone. He put my husband right on the spot and he had to make that decision right then. My husband doesn't handle that stuff very well and it makes him confused, anxious and upset. He was looking to me with his "help me" face, but I knew I would labeled as controlling if I didn't tell him that he needed to make that decision himself. He didn't want me to leave, but he didn't want to have to start over with a new social worker either. He felt so put on the spot and confused. I left the appointment against my better judgment. I wish I hadn't, because I feel like he almost felt a sense of betrayal.

While in the waiting room, I requested to speak to the department head. I explained how uncomfortable I was with the ultimatum my husband was given and how he was put on the spot. But most of all, I was very upset that the social worker who KNOWS the trauma he had experienced by a medical person, that left him incredibly uncomfortable being left alone with people, especially medical people, would put him in that position. I firmly believe this social worker no longer wanted me present because I had addressed a few instances with him, where he was not properly documenting my husband's sessions with him. It's a lot easier to deny wrong he has done or mistakes he has made when it's only the brain injured patient, and not the caregiver spouse to hold him accountable.

After a lengthy discussion with the department head, I was able to speak to my husband when he came out of the session. He held it together in the session, but fell to pieces once he came out. He told me he didn't ever want to go there again. He told me how uncomfortable he is there now and that he knows that they don't care about him and he's just a number... another disabled veteran being pushed through the system. That was a set-back that he absolutely did not need! He struggles badly with trust and now they just added to that.

I still haven't been able to get my husband to tell me what he wants to do and how he would like to proceed. I need to talk to the department head this week, so he knows how we want to move forward with his therapy. How do I make him keep going there, when he's so uncomfortable? We're still waiting for Medicare and Tricare to fix their crap, so outside of the VA is still not an option as of yet. I'm feeling really unsure of where to even begin to fix this.

Monday, April 17, 2017

What's your problem Veterans Affairs!?

I totally get that the VA is overwhelmed and understaffed etc. I understand that some things are out of their control. But there is SO MUCH that IS in their control and SO MUCH that they could be doing far better. The staff who are filled with hate and discontent far outweigh the good staff, that alone is a huge issue.

Why has the care that my husband has received at 2 of our local VA facilities been so horrible? Why have we had issues with multiple providers leaving his medical record with poorly written, incorrect and incomplete notes from visits? Why must every single thing be a fight?

Our latest adventure in VA hell has been trying to get a Seizure Helmet for my husband. Early February we were finally sent over to OT to have one ordered. After roughly 5 weeks I started asking questions about why it hadn't arrived. Of course, I couldn't get a hold of anyone from Prosthetics in Gainesville. I finally spoke to my husband's case manager and he started asking questions. He found out that the helmet was actually back ordered and no one bothered to tell me or do anything about it, despite it being "expedited". He was told that a new helmet was being ordered and expedited through another vendor. More time went by and I started asking questions again. My husband's Wounded Warrior Safe Harbor contact (They have done a lot of failing too. That's a story for another day) started making calls for me, because gain, I can't get a hold of anyone. She was told that the Helmet was ordered and would arrive to us the next day (April 12th).  So between the time that the case manager talked to them and the time the wounded warrior person talked to them, they had never actually ordered it. The helmet never showed up. Today, since my husband had an appointment at the Gainesville VA anyway, I decided that we should stop into prosthetics to ask what was going on. The guy came back after being gone a while to let us know that there is no record of the helmet being ordered... so it would be ordered today, sent overnight and hopefully get to us either tomorrow or Wednesday. WHAT THE HELL Y'ALL!? All i'm asking for here is a freaking seizure helmet. I just want to protect my husband's head a little bit when he's having seizures. He has hit his head so many times. He needs this. I'm not asking for something crazy here.

Just to shed more light on the incredibly poor attitude of the staff as a whole. While we waited for the guy helping us, the woman at the front desk as well as another man in the back, were talking about a patient. She said "He started trying to tell me his story, but honestly, I ignored him." and the other guy there was saying that the guy wasn't owed special shoes even though he thinks he was, bad mouthed him etc. and he tossed a paper pertaining to the guy carelessly, not caring where it fell. This is a problem! They need people to care about the patients!

I also told them that every single time I tried calling there I would get the after hours messaging system, regardless of what time of day it was and that I had left several messages with no return phone calls. They told me that the phones are messed up.... WHY are the phones messed up Gainesville, FL VA??? WHY aren't people getting calls back? Why is it so hard to get my husband a seizure helmet!?  I'm not asking for anything crazy.... just a seizure helmet. This is a case of people not doing their job! This is a situation that is 100% avoidable. This is just one of many issues we are having with the VA. It's shameful and unnecessary. 

I would also like to know why we must go into the ER when my husband needs to see his PCM for an appointment other than his yearly follow-up. Why can't an appointment be easily made when he needs to be seen? Why are we instructed that we need to go to the ER in order to have his PCM see him? That is ridiculous and takes away from real emergencies in the emergency department! The system needs a massive overhaul. 

Monday, March 27, 2017

Starting Over

Hello There! Long time no see, right!? Wow... it's been a while. There is so much to update y'all on, I don't even know where to start. But I'll try.

Those of you who followed me knew that my husband had become disabled due to the TBIs he had sustained. He has since been retired from the Navy, we have relocated to a tiny town in Florida, right over the Georgia line and we're now dealing with the absolute mess that is the VA.

Tony's conditions have slowly deteriorated a bit and I'm his full time caregiver.

The kids are still amazing and getting huge... and old. Our oldest son has a job!

I finally took control of my health a bit, after having the realization of how much my husband really needs me to take care of him. I've made huge leaps in my mindset, I've really strived to be more peaceful within. I do Yoga and Meditate. I have also, through strictly willpower, exercise and calorie counting alone, lost 76 lbs. (that's like... a whole 10 year old!).

We still have our old lady dogs, Emmie and Stormy (of course! they are family, they aren't going anywhere!) and now we have a 9 month old Chocolate Labrador named Harley, who we are training to be Tony's Service Dog (so far, so good).


I guess that update doesn't look like a lot... But it really is! I've missed writing a whole lot (publicly anyway, I've written a ton privately). I have so much to share about so many things. There has been so much good and bad. I really want to not only share the mundane things, but I also want to share things and issues that truly need attention, things that need to change, things that need to be brought to light.

I suppose this is really a quick "I'm back" kind of deal, I have a lot to tell you my friends. Stick around, I need you.



I will leave you all with a few pictures. Because, you know... that's what I do.




Christmas 2016

Monday, December 21, 2015

Allergy Friendly Banana Bread Muffins

I've made these Muffins for the kids several times now. They are always a hit and super easy to make!


Banana Bread Muffins

3 c flour
1 1/2 c granulated sugar
2 t baking powder
2 t baking soda
1 t salt
1/2 c coconut oil (melted)
1/2 c coconut milk
6 medium ripe mashed bananas
2 t vanilla extract

Preheat oven to 375 degrees F.

In stand mixer, or using a hand mixer, whichever you prefer, blend bananas until smooth. Add oil, coconut milk and vanilla until combined well. Slowly add in dry ingredients while mixing the batter. Spoon batter into lined muffin tins. Fill close to the top. Bake for 18-22 minutes.

Yields about 2 dozen standard size muffins.


(I also make these in Jumbo size (pictured below). It is 1.5 times this recipe and the baking time is 35-38 minutes. This Yields a dozen.)

Allergy Friendly, Vegan Snickerdoodles - Tastes like classic Snickerdoodles!

It's rare that I come up with an Allergy Friendly cookie recipe that actually tastes like the real thing. These are perfect though! And Vegan to boot.


Allergy Friendly, Vegan Snickerdoodles

2 1/2 cups All Purpose Flour (I like Gold Medal Organic because it has no Barley)
2 teaspoons cream of tartar
1 teaspoon baking soda
1/2 teaspoon salt
16 tablespoons Earth Balance Soy Free Buttery Spread (http://earthbalancenatural.com/product/soy-free-buttery-spread/)
1 1/2 cups granulated sugar
1/2 teaspoon vanilla extract
2 eggs worth of prepared Ener G Egg Replacer (http://www.ener-g.com/egg-replacer.html)

Coating

1/4 cup granulated sugar
1 1/2 tablespoons ground cinnamon


Directions

Whisk together flour, cream of tartar, baking soda and salt.

In a large bowl beat together buttery spread, sugar and vanilla with a hand mixer until fluffy. Add egg replacer and beat well.

Scrape sides and add flour mixture. Mix with a fork until fully blended (I tend to use my hands)

Mix together coating in a small bowl.

Preheat oven to 400 degrees F.

Shape heaping tablespoons of dough into balls and coat them in the sugar and cinnamon coating. Place 2 inches apart on cookie sheet.

Bake for 8-10 minutes. The cookies will be puffed up a bit and settle while cooling. Allow to set for 5 minutes on the cookie sheet and then transfer to cooling rack,


Monday, May 11, 2015

To the kind stranger in Target

Dear kind stranger in Target,
    
      I know you probably won't see this, but I hope you do. Yesterday, you encountered my family in the shoe department at the Lisbon, CT. Target. The family with the load of children. You gave us $20 and I really hope you heard me say thank you as you quickly walked away. If you didn't, THANK YOU! Your kind gesture means more than I think you realize. I was almost brought to tears.

Let tell you about my family. My husband has been in the Navy for nearly 17 years. The income isn't spectacular, but we got by. We made the decision to have all of our children because we were able to adequately provide for them. But right now, our current circumstances are making that more difficult. They have their necessities of course, but it's just not easy.

The years of little sleep and abuse to my husband's body on a daily basis, took an enormous toll on his health. Between that and 2 substancial brain injuries (along with several concussions) his medical situation is quite a burden right now (seizures, PTSD, receptive and expressive aphasia, tinitis, anosmia, serious memory issues, anxiety, depression, hormone deficiencies, venous insufficiency, kerataconus, a torn ligament in his ankle the Navy never repaired, nerve damage, separated shoulders etc.) He is on something called "limited duty" while he receives treatment for his traumatic brain injury and other medical conditions he developed over his years of service. This means he lost a substancial chunk of his paycheck and things are rough financially. He likely won't be given the chance to finish his 20 years for the military retirement, as we had planned all along. I'm essentially his caretaker, because he needs a lot of help with things.
The unknown is scary.

We also have a son with severe food allergies, so there are certain foods we can't cut corners on. 

So thank you for your kindness. It means so much to us. You knew nothing about our family, but still chose to make an act of kindness in our direction. For that we are grateful.

Sincerely,
Sarah L.

Friday, January 30, 2015

Traumatic Brain Injury in the Real World

For those who are fortunate enough not to have sustained a very severe traumatic brain injury and do not have any outwardly obvious physical disabilities, there are still very tangible struggles.

When someone looks "fine" or "ok" and acts seemingly "normal", it's hard for people on the outside to really comprehend the struggles they are facing on the inside. I'll admit, it's even hard for me, the very patient and understanding spouse of a man with a moderate TBI to understand some days. And some days, truthfully, it's exhausting.

Only those who are the closest to them, really see the daily obstacles. Those on the outside have difficulty seeing past the initial observation. I have helped my husband through seizures. I have watched light-hearted conversation with friends or family take every bit out of him and him need to sleep after. I've watched him fight to hold it together while the normal daily workings of our household start to overwhelm him. I've watched crippling anxiety prevent him from being able to watch our daughter open her gifts at her 5th birthday party or seeing someone at the store sending him into a full blown anxiety attack and having to go right home. I've ridden the daily emotional roller coaster with him. I've held him through some really low, lows. I'm there to constantly remind of him things he can't remember... I'm kind of like his right leg. He could live without me and get by ok, but having me here to lean on makes it a whole lot easier to keep walking.

Whether we want to admit it or not, Traumatic Brain Injury affects our daily life, in more ways than one. From daily tasks to relationships. We all just keep on pushing forward though. In the ideal setting, such as the TBI program my husband was part of, everyone gets it. They understand that there is so much more beneath the surface. So much more. However, in the real world, there are individuals walking around recovering from brain injuries all around us and we don't even realize it. They have to navigate a brash, impatient, unsympathetic world, while appearing to be "normal", all while dealing with a brain that has it's wires crossed. There is no magic pill to just make it all start working right.

I think one of the most frustrating things for both survivors and caregivers is when people say "He looks just fine." or "She looks like she is all better now." Looking fine or better on the outside is not an accurate reflection of what's going on, on the inside. For me, I take comments like that very personally, because my children and I are here experiencing the daily struggles along with him. I feel that it not only minimizes what he is going through, but it minimizes what we are going through as well. This certainly isn't an easy road to walk for any of us. People see the smiling, maybe even upbeat man they are having a short conversation with, but what they don't see is the anxiety, sensory overload and often emotional unraveling that comes after. It's like he's holding his breath and just waiting until the conversation is over to relax and breathe. It's an inner struggle, which I imagine is partly comprised of pride, that makes him force a certain appearance with most people. Those who are the closest can see subtle differences despite that, but most others, don't.

My husband is still who he was... but he isn't. Some days I see a beautiful glimpse of our "old normal", but our "new normal" is what we are living with and we have come to terms with that. We appreciate the moments when he is able to be a little like his old self though. Even if it's something as little as getting through a shopping trip without having to leave abruptly because of anxiety or sensory overload. That little thing, is actually really significant to us. We definitely stay home more. He needs naps almost daily. He forgets things every day. He's here though, and mostly healthy. For that I am thankful.

Traumatic Brain Injury in the real world, to put it frankly, freaking sucks. The survivors need to know there ARE those of us who care and understand. All of us right legs... well, we kind of need that too.