Veteran Caregivers

Physical Health Issues and the Ordeal that Comes

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My husband was diagnosed with asthma while he was in the military where he was exposed to burn pits and environmental exposures during several deployments, as well as his career field. In the last 5 years, every year, his asthma has only gotten worse. In the last year and a half, it’s resulted in over 8 ER visits at the VA. The last ER visit was in August of last year.

This time, I begged him to go to our local ER instead of the VA. This ER ended up admitting him for two days. During that hospital stay, they did more for my husband than the VA did in the last 10 years. One of the things the civilian hospital did was a CT scan where they found lung nodules and his thyroid enlarged.

We are now almost a year later, and his breathing only seems to be “good” when he is on prednisone. He also takes a Nebulizer daily, along with a daily inhaler, and has a rescue. He waited months to make a follow up appointment with the civilian doctor they sent him to. I think it has been avoidance and his PTSD that complicates things. He finally has an appointment in August.

The nodules concern me. But the VA doesn’t seem to be in a hurry, or seem to care after we gave them the reports from the civilian hospital, or even after the numerous VA ER visits. When it comes to his physical health, the VA has done such a poor job. Their only answer seems to be to throw medication at the problems, instead of actual treatment. It’s so stressful and frustrating dealing with them on EVERYTHING. In addition, the wait times, even prior to COVID, are absolutely ridiculous. It’s a full time job, on top of my full time job, caring for my husband, and raising a family, while dealing with them.

In the 10 plus years he has been at the VA, he has had half a dozen or more primary care providers. And each time, everything starts back over, and things fall through the cracks. He has yet to see a pulmonologist at the VA after being in their system for 10 years, diagnosed with asthma, and it brought up at each visit. He finally got a referral last year, but still hasn’t seen anyone! The pulmonologist said he needed a current pulmonary function test. I told the nurse when she called, they have a copy of 2! And we have yet to hear anything back.

Honestly I haven’t pursued it because every time I call, I spend a minimum of 45 min on the phone, most of the time going in a round Robin, hang ups, and not getting to who I need to. It’s time consuming and draining. We are lucky enough to have private insurance, so I have pushed to have him seen outside the VA. However, we are still spending money for deductibles, co-pays and co-insurance. But he gets seen much faster. And if, God forbid, it IS cancer, hopefully we can get an affective treatment plan in place quickly. I feel like if we waited on the VA, he would die waiting to be seen.

This Time of Year

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As many of you know, my husband has PTSD from several deployments overseas in the military. What some of you DONT know is the hell that can/does come with it. This month, May, is mental health month, and starting tomorrow, June 1st, is PTSD Awareness Month. This is also a traumaversary month for my husband. Generally, Jan-June 1 is an exhausting roller coaster ride filled with sleepless nights, waking up not knowing who I’ll wake up to, locking down car keys, and credit cards, keeping 2 young boys quiet when finally, he does sleep.

It’s tiring, stressful, frustrating and lonely. It feels like you are fighting the world…fighting alone. You fight to keep your loved one alive, hanging on for dear life in the constant ups and downs. You fight the VA, who fails to see the trauma your family endures, and wants to lower their rate because they think, magically, your spouse is better. You fight alone, in silence, screaming on the inside, wishing the world tried to see the pain, and trauma endured, getting annoyed when you hear civilians thank a veteran or saying how they support the troops, with little action put to words. Words that feel like a saying to make them feel better, without doing any real work, or trying to learn, truly supporting veterans and their loved ones.

By Memorial Day, I’m exhausted, and depressed, frustrated, on constant high alert and still hanging on for dear life, having continually tried to keep a sense of normalcy and keep the ship that is our life, afloat. No one sees the daily struggles, the stress, the secondary trauma.

Most who meet my husband won’t know. They won’t know that he is “off” at the moment. His affect changing. They won’t know that he jumps out of bed between 2 and 3 am, like clockwork during this time. How he gets addicted from the adrenaline pumping through his veins. So he fights the meds, the sleep, and the eventual depression that he knows will come with the crash.

After 2 days of no sleep, my husband that I know and love begins to fade. By the 3rd day, a different person, more hyper, stubborn, almost a force of nature, takes hold. The speech becomes more rapid, more moody, more brash and sometimes unpleasant. He gets to a point where he won’t listen to reason. His decision making skills are questionable. Previously, during these blights of sleepless time, it has resulted in buying expensive items, to include expensive cars, we can’t afford. It’s resulted in locking down his credit, and limited his access to credit cards and our main accounts. In his clarity periods, he understands, but in times like these he gets mad, and forgets why these plans are in place. And although he wouldn’t admit it, I believe he has more thoughts of suicide, from comments he has made.

His memory, that’s another thing. He often repeats information or conversations we have continually had, especially during these periods, forgetting we ever had them. It’s a recurring theme. He doesn’t understand why I get annoyed. I try not to, but, my own trauma is in play. We almost play the same themes over each year, like a broken record. Same thought construct, same war movies, same trauma that comes.

Some things have gotten better. I mostly know what to expect. Our safety plan is working better and we are more prepared. We keep an open dialog with his psychiatrist. But, it doesn’t make it any easier. It doesn’t make the trauma we go through yearly, any less tragic than what it is. It’s hard to talk to people about what we go through, especially if they don’t understand.

We have simply been trying to survive the past 10 years, between his PTSD, and now, his lung issues. It’s been one foot in front of the other, one day at a time, even one hour at a time. The world doesn’t see what veterans, and their family, really, go through with having a loved one living with a mental illness. It isn’t their fault. The person they are when the episode takes place, isn’t who they are. It isn’t the person that we know and love.

A New Normal

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Do you ever feel like you have switched placed with your spouse?  Somehow, someway, you have completely switched rolls, and in some ways, personality.

My husband and I simply put, have switched roles.  My husband at one time was the take charge, take the lead type of guy.  He would make sure business got taken care of, no matter how uncomfortable it was.  Thoughtful and decisive, he made decisions.  If there were bills that needed to be paid, he paid them, even if it meant not having money left over.  He was ambitious, and dreamed of the future.  He was positive, and upbeat, always having a laugh or a smile for someone.  An impeccable memory, he was able to remember the smallest detail.  Anyone could tell you that my husband could also talk forever.  He loved to talk.  It was his “thing.”  Above all he loved to talk to new people, and travel, experiencing a new place, new people, and new adventures.  I was complete opposite of that.  My memory was horrible, although I love to talk, I wasnt one who met friends easily, being more reserved and quiet.  Suffering from anxiety, there were times I stayed at home, not wanting to go out.  Avoidance was a big thing for me, avoiding anything that was difficult, and having little ambition, or dreams.

Now, today, he and I are completely opposite of the way we once were.  He hangs back, lets me take the lead and take charge.  He waits for me to make a decision, or is hesitant in making his own.  Conversations we have are forgotten days later.  Medical appointments, dental appointments, are now up to me to make, and go with him so they are remembered/kept.  I’ve had to help become his memory.  We avoid crowds, and stay home a lot.  When old friends are seen, my husband is now more quiet, more reserved, almost seemingly deep in his own thoughts.  The laughter comes occasionally, but not like it once did.  Some days, he spends his time in our bedroom, away from the world.  Those are the bad days.  Sometimes they come several days in a row, sometimes they dont.  Plans are rarely made, for fear of them being broken.  Invites are politely declined, to the point they are now rarely asked.  Very few understand.

This isnt to say there arent good days.  I see a smile, hear a laugh, and we actually venture out into the world.  He works 5 days a week, which helps with consistency, and purpose.  He takes care of the kids, giving him routine, and there again purpose.  There are days, that I see he needs sleep or help.  I help get our daughter to out the door to school and take our son to school to help him out, even though I will be late to work.  Days where I have had to take off, in helping him, just by being there.  Some days the kids and I have to go out without him, and some days he joins us.  At times, we have several good days in a row.

With all these changes, I’m learning to find a new normal.  Settling into new ways.  Over the past few years, things have been chaotic and all over the place to say the least.  The past year however, since my husband has gotten on a new medication, has been better, and we are settling in a “new normal.”  Our new normal isn’t what I ever envisioned,  but then again, life never is.  I know some days I have to pick up the slack, and on most things take the lead in getting them done.  It isn’t to say he does nothing.  He tries every day.  He tries for us, and some days I can see it is a struggle for him.  It isn’t something I can describe.  Those days if we are able, I leave him alone, and let him sleep.  The kids, they keep him grounded, give him a purpose, and help him through “the darkness.” I’ve learned (although, don’t always abide by) how I communicate with him,, and when to communicate something, and when to wait.  This is the beginning to  our new “normal” life that we are still figuring out.