Thursday, January 27, 2011
No, I have not lost my mind, because what I am realizing is that it is actually newsworthy to have any kind of good outcome from the dealings with the VA. All those who post regularly and those who have recently joined this network, have dealt with so much junk from the VA, ranging from rudeness and ignorance to downright dangerous medical practices. We are starting to take this a normal. That is scary!
It should be newsworthy if someone is treated badly; if they have been insulted by a VA practitioner; if they have had to wait months for an appointment or told their situation is not an emergency or is the fault of their caregiver. These are the things that should be unusual, but sadly they are the norm.
I do think it is about time that someone at the head of the VA should begin by reading what is written here, and considering what needs to be done, and done quickly, to help our incredible Veterans and their families.
Saturday, January 22, 2011
Thursday, January 20, 2011
I am in no way trying to disrespect previous era's of Veterans because they have paved the way for our OIF/OEF Veterans, but these wars have been going on for quite a few years now and it is time to get on top of things, and support the whole family dynamic. I feel like because that is such an overwhelming concept, the VA gives up before they even try. Here's a concept instead of having panels of so called government big wigs and "experts" have a panel of OIF/OEF Vets and their Caregivers and ask what kind of program would be most beneficial, go straight to the source and not just the same few people.
So how can we impact the VA? I think the best way is to be vocal and keep our voices heard even when its incredibly exhausting. I think we all need to utilize our congress/senator reps more than we do. I think the reason we don't often times is because it is yet another thing to have to do. I know that I myself am guilty on this one, but hope to make changes even if they are small. Another way to be involved is to check out your local VFW, American Legion, etc. I know that most of them are comprised of what many of us would consider "old people" or older Veterans but I truly believe they have so much wisdom to offer. I try to thank them for their service when out in public and you wouldnt believe how many of them are shocked that I even said anything.
I believe that the VFW, American Legion, etc. truly want to reach out to these younger Veterans and families but may feel incredibly lost because they don't know how to keep up with such a social media generation. Also, they don't know we are here unless we make ourselves known to them. There are also MANY online resources specific to OIF/OEF Veterans and I will include a few links at the end of this post. I hope that with the little time to research you may have, that you will look into these resources and find something that is helpful to you. See the below links and until next time I post, hang in there, keep going, you are so crucial to your service member so don't forget that, and YOU MATTER SO MUCH! :)
Note: These links cover a variety of topics and there is a lot of information to sift through so bookmark it and take it at a pace you can handle.. I want to say that the second link actually has videos for caregivers specifically.
Monday, January 17, 2011
We are almost 5 years post injury, and I keep thinking it will get easier, but yet I have to admit that for me it seems to be getting more difficult. My days are filled with task after task, and worry after worry. I often wonder if I will be able to sustain this level of care for many years to come. I have pretty much put all of my dreams on the back burner, which totally sucks but has to be reality for now. I think about the kids and how young they are, I pray they don't grow up resenting us for being so different than other families. What are your fears? What is the hardest part about being a caregiver? There are so many days when I have to deal with resentment towards my husband, even though I know logically none of this is his fault, it still strains our marriage.
So how do we keep going when we are the least supported piece of the puzzle? The VA often ignores us, we get shoved to the back of the waiting rooms while everything is focused on the Veteran. Many case manager's put up with us instead of working with us. It seems like at every turn we are faced with opposition instead of support. I won't even get into the caregiver bill because we all know where that is at this point. I find support in my other Wounded Warrior Wife friends, and other caregiver's as well. This network of support here at VCG has been instrumental in my sanity during on many different occasions. In fact, my main support does not come from family, but from those in the same situation. Together we can make a huge difference.
My goal for this blog as far as my contribution goes, will be to share my own struggles and positive progress as well. I also hope to discuss some different "hot topics" that we are often faced with. I hope you all have a great week!
Saturday, January 15, 2011
The recent shooting in Tucson left all of us dismayed but probably not actually very surprised. Sadly this kind of shooting is becoming more and more common. We have seen Columbine, (12 dead), Virginia Tech, (32 dead), Atlanta (12 dead) Washington DC, (10 dead), Nebraska, (9 dead), California, (9 dead), Alabama, (10 dead), just to mention a few, and we all remember the horrible shooting at Ft Hood, which left 13 people dead.
I am afraid. I am afraid for our Veterans and I am afraid for the future. I see so much neglect by the VA. I see so much need for mental health support. I see the need for much more education for caregivers on suicide and the possibility of enough mental instability to be cause for alarm. I see that at some time, at some place, some Veteran will have endured enough pain, intolerance, slights, ignorance, rudeness and disregard for their suffering, that they may take their weapon into a VA facility and deal with what they see as “The Problem”. When that happens, and I do think it is a question of not if, but when, then I believe the VA will be squarely to blame.
Dealing with the VA on a continuing basis and suffering the rudeness, being shuffled from place to place either on the phone or in person, the indifference and outright stupidity, makes all of us way angrier than we need to be. Pile that on top of a Veteran who has no caregiver, no advocate and little to no support and the stage is set for a major problem.
When I go to any VA facility (or any other large Government building) I am now taking stock of people and things around me. I am actively looking for exits. I am observing people very closely where before I concentrated on getting to where ever I was headed. If I see anything which gives me cause for concern, I try and alert someone and I remove myself from the situation. This is a sad commentary on our country. I do not like living this way, but perhaps if we are all more perceptive and aware, then people like the Tucson shooter would get some help before the unthinkable happens.
Sunday, January 9, 2011
Saturday, January 8, 2011
Thursday, January 6, 2011
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.
Wednesday, January 5, 2011
Monday, January 3, 2011
It did not used to be like this. I used to love the lights and the visitors and the shopping and the baking. My life has changed so much and not for the better, but I know I do what I do out of love and caring.
I did learn something over these holidays though. I have to take care of myself more. I soothed when I should have said "Please do not say that" and I explained when I could have said, "Why ask the same question - are you waiting for a different answer? I did not say these things of course, but I felt like it. I can only imagine what this does to my blood pressure over the long haul. So I am about to begin a list of New Year Resolutions, and at the head of the list I am going to make sure I have Care for Self as a priority. Taking time for ourselves is always last on the list, but I am going to make sure I bump it up, at least to a small daily event, for without me, my Vet will spend the rest of his life in a Veteran's Home. Not a great prospect for a man who still has most of his life in front of him.