The Cost of Coming Home. Part 1.

We arrived in Birmingham the beginning of November and began to immediately transfer Aaron's medical care to the VA hospital here. We came home because we needed and desired our family, who are close by. We wanted to give AJ life around her family, and a house with a back yard- things that weren't possible in DC. When we realized we couldn't afford to stay, we knew home was where we would go.

But our experience with the Birmingham VA has not been what people say it could be. It is supposed to be some of "the best" VA care available. Maybe it is, and the system is that broken. But Aaron and I are far too young to be dealing with these issues. And now I am just plain tired of it all after the latest "incident." I am just done and now I will be going to every person I know, every corner of hope, to alleviate the trouble we've been having. I feel the fight in me waning. I would like to work part-time, go to school, and not feel that managing his healthcare is a full time job on top of trying to be a family, raise a toddler, and do other productive things with my life. I am so much more than a caregiver, but some days it feels like I am not doing enough. Right now, all I can do is get it out so I don't cry another tear today.

Aaron needs physical therapy for his back and prosthetic use. This is an issue, and we have yet to get him regular care at the VA. There's always a reason- a new consult, needing the right staff to work with him, purple people eaters took over- who knows. So he's in pain, and the best he has gotten so far is one appointment and painkillers. I have no idea why this is such a problem, but excuse me for worrying about his future mobility and wanting an appointment months ago. ETA: Aaron has made some mistakes with this, but it does not negate the fact that I feel it's taken longer than it should have to sort out regular PT appointments. He hasn't made enough mistakes for it to be next to non-existent.

Aaron needs dental work done, but the Birmingham VA has problems with this, too. Appointments are 90 days out, which means he should be able to get it done in the civilian world at no cost to him. Veteran's Choice, an old program with new wrapping paper meant to send veterans to the civilian sector at no cost, is exempt from dental care. However, fee-basis is not. There is a form for this, but we need the Chief of Dental to sign off on it. We aren't sure this is going to happen. It might. It is what needs to happen. VA Dental is not exempt from the 30 day appointment policy (it seems to think it is, as this is a system-wide issue, but it is not). I only know about this form because of other caregivers educating me, not because anyone at the VA educates me on how to obtain timely and affordable healthcare for my combat wounded husband. VA Dental is not some special program that can just shrug its shoulders and not give veterans the care they have earned. We will find out soon what Birmingham VA Dental wants to do with us; and then I will proceed with a plan to get Aaron timely dental care.

Let's also go over how Aaron missed a psychiatry appointment: He called ahead of time to confirm it. He was told over the phone that the appointment was for podiatry.
I will let you just catch your breath over that one for a moment. I know you need it.
So then, of course, he says he isn't going to go because he does not have @!#$ing feet. As it turns out, it WAS for psychiatry. The person on the phone was just illiterate. Then the appointment is marked as "patient cancelled," which can actually hurt Aaron's ability to get services in the future. So now I am working on getting the whole thing removed from his records, since it shouldn't be a mark against him that he thought he was cancelling a podiatry appointment. Hashtag insanity.

And then there's me. As far as I am concerned, the caregiver program here is... non-existent? I get my monthly stipend every month, but that is it. I feel absolutely no support from my caregiver case manager and the VA "caregiver system," whatever that is. Our tier rating was decided in DC, by a case manager who once actively tried to persuade a Fisher House employee not to approve me for a Hero Miles request. The program is in place to fly people in to aide in respite for the caregiver. She had her own rules that I never received notice on, and when I went past her for approval for a much needed flight to get help with my baby during Aaron's recovery of yet another damn surgery, I know she pushed back on the approval.

We were given Tier 2 status in DC, even though Aaron is a double-amputee and we were in a non-accessible apartment with stairs. We were not re-evaluated when we got to Birmingham. Each caregiver case manager can decide what the perimeters are for the tier levels and stipend payment. A case manager in Tennessee can decide anyone with amputations or people with all their limbs but 100% ratings gets top tier; one in DC can decide it is only for those whose warriors who can not bathe, eat, or use the bathroom without assistance. There is no consistency in this program at any level whatsoever, outside of just abject confusion what the hell matters when deciding who gets what. 

I decided to appeal our rating once we got to Birmingham, as I have never agreed with it but since we were moving decided not to fight it in DC. We were denied the appeal. Then I got a bill in the mail for $876 of over-payment of stipend since I was paid the DC rate after we moved. We did everything we could do to swiftly transfer every single service to Birmingham VA, but because the VA moves at the speed of molasses, I now have a debt to the government. And it's only my fault. It does not matter I did not deceive anyone, lie, or wait to transfer services.

I do not feel that my caregiver case manager is on my side. I actually thought she couldn't help me with the appeal; perhaps she has to remain neutral. Apparently, though, there are case managers who do advocate on behalf of the veteran and caregiver, aide in appeals, and are there for support. I certainly have not had this experience. I don't even know if a caregiver case manager is actually supposed to do anything other than handle initial tier ratings, appeals, and Hero Miles flight requests. As far as support being a caregiver, I gain that only from my involvement in organizations that the VA knows nothing about- America's Found, Wounded Warrior Project, Elizabeth Dole Foundation, Yellow Ribbon Fund, EOD Warrior Foundation, and so on. They all offer support and respite retreats, but the VA has nothing to do with this. Caregivers must find support on their own. I want to one day walk away from all of it, but right now I need the stipend. So I just take the tier we have and be grateful I haven't pissed anyone off enough to be put "under review."

I need the stipend because I am struggling with my life, and I can not imagine having to step outside of the home. Aaron can not take care of AJ for days on end alone. He has sleep issues that affect us everyday. He is in pain. When he gets sick, he gets very sick. He has reactions and side effects to vaccines and medication. He has yet to go a year without surgery, making the idea of a job laughable. What employer would hire me when I need so much time off to manage my family? But I want a job. I want to make more money and contribute more financially to my family. We are building a house. Maybe I am just an overwhelmed whiny-assed housewife who needs to grow up and learn to manage my life better. I know I am. But when my life involves needing to dedicate hours to VA follow-up and appointments, maybe it is a little more hectic than most other people's.

The thing is, I know how lucky we are. We have benefits right now that afford us housing, food, and healthcare. We do not struggle to meet our daily needs and a lot of wants. That right there makes us the 1%. I do feel fortunate. I feel ungrateful for having any complaints at all. I should just be more grateful.

But you know... this morning happened. Aaron went to the VA last night for a sleep study. They put all these sticky electrode pads all over you. So when you wake up, you go shower. He could not shower at the Birmingham VA hospital because the roll-in shower did not have a shower chair/bench for wheelchair bound people. THE BIRMINGHAM VA HOSPITAL COULD NOT ACCOMMODATE A WHEELCHAIR BOUND VETERAN. MY HUSBAND.

And then I am just done. So done. Aaron's OEF/OIF case manager is fantastic and spent an hour on the phone with me, on a day she took off to take her kid to the doctor. She cares. She is doing everything she can to get us good care- but the good care just isn't there. We have had many other minor incidences, things that did resolve themselves or we just let go of, and she has been key in each positive step. But it helps to hear that anyone would be as upset as I am, as I go between crying and raging.

Aaron does not deserve this. I do not deserve this. Millions of veterans and their families did not ask for this. I feel like we are a burden. We are asking too much. We were spoiled at Walter Reed and just expect timely care anywhere else but there. I pushed for us to come home, as I held our newborn daughter and I realized I couldn't do it all in DC- and I hurt Aaron by doing so. DC might be expensive and far from family, but Aaron had good healthcare there. He had Walter Reed. He had urology care that took his testosterone deficiency seriously. He had phone numbers for doctors' secretaries, so that he didn't have to wait months to get care. He could get skin products from the hospital, something the VA doesn't do here (no skin Marathon- a solution that helps with the wear and tear prosthetics do to him). It's constantly some other bullshit and I am so done with it. He is 36 years old, needs more medical care than an 80-year-old, was just awarded a script for hearing aides and another one for a CPAP machine. I worry constantly that I am going to be lucky to get 20 years with him, that I just pray he sees his baby girl graduate high school. I am terrified of our future- how much of one we even have. I worry he will get cancer or become immunocompromised and die from the flu. I worry about future surgeries. I worry about a car wreck and if he could save himself. I worry about him in ways that should be unnatural for a 32-year-old wife. This is bullshit.

Well, not total bullshit. Our story? A cakewalk compared to what some of my friends live with. I won't go into details, but all this- all this complaining- is not even a drop in the bucket. And I know it. But I'm still pissed, and sad, and scared. I just want to feel secure that he's going to get what he needs, and that I don't have to expend so much energy getting it for him. So much energy. I want to work, go to school, enjoy my daughter. I don't want to feel like I haven't been doing enough as Aaron's caregiver. I need to get medical records. Write emails and letters. Make contact with people who might be able to help. I need to spend more time on this. More hours. Less anger; more doing. I need to be better.

But first, I need to go home and hug my husband and precious toddler girl. I am going to fight; for Aaron, for our future, for AJ to not have a complete spazz of a mother. I am just not going to do it today.