Thursday, January 6, 2011

VA Caregiver Handouts-- SERIOUSLY????

I’ve been trying to get started on this blog for awhile. I wanted it to be positive and to inspire you all to persevere, but to be honest, my inspiration at the moment, is that I am ticked off. In the last week, I have encountered the new VHA caregiver handouts in several situations, and quite frankly, I just need to rant. Please forgive that my opening blog is full of negativity. I promise in the future I will try to be more uplifting in the messages that I send. My particular pet peeve is the handout entitled “Caring for the Caregiver—Practical Ways to Help Yourself as a Caregiver.” To let you know just a little bit about my personal situation, Hubby has severe chronic PTSD. There have been multiple hospitalizations lasting several months each since his return in 2007. There are a myriad of physical issues and a tbi, but by far the worst thing I deal with is the PTSD.

The handout starts out with an acknowledgment that caregiving is stressful and exhausting—tell me something I don’t know. It proceeds with the following headings:

1. Ask for Help.

From whom? Three years into this, all my original friends have gone by the wayside. Family is hours away, and when I do send Hubby there, they don’t give him his meds for a week, because “He doesn’t really seem to need them.” Our friends that remain in the military act like they might “catch” his PTSD, or perhaps he is a portrait of what they most fear for themselves. But they are all gone. There is no one to ask.

2. Express your feelings.

To whom? VA doesn’t have a group for me. I went to a PTSD caregiver support group at my local VA. It consisted of wives who were all Korea or Vietnam vet wives whose husbands had kept it together long enough to have full military careers and full careers afterward. I opened my mouth the first time, and you could see the horror, so much for that outlet. My family—nope, my parents ask why I stay or they ask why I’m so negative. Really, I have NO IDEA why I might be negative. Friends-- yeah, discussed in number one. My new WW friends are in the same boat as me, but none are near me. We are spread out all over the country and get together only on the internet.

3. Take care of your health.

When? How? With what money? I can’t get to the doctor because I’m ferrying him back and forth to the VA and civilian appointments. Oh! And there are the kids’ appointments, too. I’m lucky to scarf down fast food as I drive by McD’s between VA appointments and picking up the kids from school to take them to family counseling appointments. Forget the gym and working out, I fall into bed for the five hours of sleep I’m able to get now. And how would I pay for it? When he was medically retired, I had to give up my job too. We went from two full salaries, about $8K/month to $3K/month, but still with all the expenses we acquired during our lives of full time employment. Now we have less than half of the income but all of the same expenses. TRICARE out-of-pocket expenses increase. VA sure won’t see me and the kids, and I can’t reschedule his VA appointments when I need to go to my doctor because VA will take three months to reschedule.

4. Learn about the disease.

I could teach the class. We won’t even go there. My guess would be by the time most of the new generation of WW caregivers gets to the VA, we have the disease literature mastered. We could all teach these interns a thing or two. Sometimes I get impatient with the interns because they obviously don’t know the right thing and just say, “Hey! I know you are a student and need to learn, but we’ve been waiting for two hours past our appointment time, you obviously are still learning. Our numbers aren’t where they need to be. Please get the doctor.”

5. Avoid isolation.

See all previous paragraphs.

6. Talk with professionals.

What about big VA telling the professionals to talk to us? I have tried. They don’t want to talk to me. I have actually had a doctor tell me that I was wasting his time. If Hubby was going to slit his throat, take him to the ER and let the doc see the patients that were in the office at the moment. And POA’s and accountants cost money that we don’t have. We were in our thirties with two decent jobs, two kids, and all the expenses—house, two cars, and kids—that come with that. There is no money now. We are staying afloat barely. I certainly don’t have money for extra professionals or time to work them in.

7. Look for signs of burnout.

First of all, even if I wasn’t burned out from caregiving, VA would give me burnout all by itself. The bureaucracy is designed to wear you down. Second, I do have to moderate my alcohol use because quite frankly VA drives me to drink. After I have gone ten rounds with the operator, voicemail from three case managers, doctors, and social workers, then Hubby in full PTSD mode, and kids after a long day, I am ready to drown in a bottle—alcohol or anti-anxiety meds, doesn’t matter. Good thing I can’t afford an alcohol habit and I don’t have time to get to the doctor to get the anti- anxiety meds that I probably need.

8. Give yourself a treat.

Sunset is the only available option listed, and that’s if I can get everyone settled long enough to take the time.

9. Take time for yourself.

Well if respite care, home care, or adult daycare were an option (the ones listed in the pamphlet), I might be able to do that. Trying to find out if any of these options are even available leads to burnout and the need to talk to professionals, none of which I have the time or the energy for anymore.

VA, thanks for attempting to give a darn, but next time, can you check in with a real caregiver before you put together stuff that makes me feel like you understand my situation less than I already thought you did and that makes you look even more out of touch than I already think you are.


  1. WOW. I think you climbed inside my head, because this is exactly how I felt when I saw those beyond lame caregiver handouts. How insulting and demeaning. As you say, WE the caregivers are often better educated on the conditions we care for daily, but this "caregiver tool" is our "support". I don't think so.

    Worst thing is, these cost money. They took time. Assuming someone at VA wrote or authorized these, it took time away from actively helping or better yet, listening to caregivers. Waste of time, money, VA time, AND caregiver time. Not to mention it doesn't help the veteran when we are frustrated beyond belief.

    I don't know if anyone in Washington listens. I do know that if we didn't have this site and facebook friends that we would think we were crazy and the only ones who felt this way. VetSpouse, THANK YOU for writing. Don't worry about being positive, just be real -- we get enough sunshine "blown up our skirts" from those who don't understand, so lay out the truth as you see it.

    We get it. Bless you!

  2. I LOVE IT!!!! Well said and please say more! We are listening and we just wish that the VA would listen to us, the caregivers, instead of producing this kind of GARBAGE. As for teaching the class - RIGHT ON! I cannot count how many times I have had to repeat and repeat and repeat myself and then they ask something stupid, like what meds are you taking? If they don't know then we are in REAL trouble. Also every new Doctor we see, we have to tell the whole tale again. They all have fancy computers - how about LOOKING IT UP!
    Thank you, Thank you Thank you

  3. Very well said. VERY well said. Even the comments. This just ticks me off to no end that they just DON'T GET IT. I could go on and on and on about my frustrations but that won't help my high blood pressure. So I'll just wait, in vain, for my pamphlet to arrive. They don't consider me to be a caregiver anyway (husband is homebound and 100% disabled) so I'll likely not receive it. Ugh.