Good morning. I'd like to tell you about my experience with respite care that is supposedly available to me through the caregiver program. September and October are notoriously bad months for C (my finance'/veteran). I can and do anticipate the onslaught of random mood swings, highly impulsive actions, nastiness, refusal of meds, sleepless nights, suicide watches... I know better than anyone that it happens and even though I'm still learning how to compensate for it, I do pretty good. This September was different. This year, C was also going through a med change and I was at my wits end. I was 2 days (sometimes shorter, like 2 seconds) away from calling it quits and ending the relationship. I didn't want to, but at the time there was (and even with 20/20 hindsight) nothing I could do differently and that was the only viable answer to keep my sanity. I stayed, because his MH doctor and our couples counselor both encouraged me to 'ride it out'. I felt trapped. I felt bitter, towards everyone involved even though I could see past that to the bigger picture and understood the 'whys'. I'll admit I certainly didn't have some of my best caregiver moments. I was completely burnt out. So what did i do? Nothing. I shut down. It took C calling my CSC and asking for respite care. What we were told was that she didn't know what was available for our situation. She said that usually respite care was used when a spouse's family member was ill or passed and they needed to travel. #VA, my CSC never did get back to us about what options there were. A week passed after not hearing anything and C ended up inpatient due to a rather bad flashback and major anxiety attack. I don't know if inpatient could have been avoided-it's possible if we had gotten a break sooner that he might have been able to focus on some of the coping tools he's learned-, but I got a teeny tiny bit of relief because I had a little space away from him and he was somewhere safe and then presented with a whole lot of new caregiver problems- trying to get correct information on a holiday weekend is damn near impossible. I digress though, the inpatient escapade is an altogether different letter. Still no word on respite care. C and I are both just lucky I'm resilient and ridiculously stubborn.
With yesterday's Meet and Greet that I missed, and another opportunity to have time for myself with other caregiver friends that will likely be missed, I am once again feeling left out (I don't know if left out is the correct wording, maybe overwhelmed, saddened, disappointed, lonely...) You see, there are opportunities available for caregivers that would allow me to explore self care so I don't have a mental break, but the respite care (of which we are supposed to be able to get up to 30 day per year of through the Caregiver Program) has something to be desired. I hate thinking that if I ever get so overwhelmed again that I shut down that a trip to the ER is our only option. For who? I don't have the 'luxury' of going to the ER and checking in for a few days myself. I have a family, C, 2 children, things that **I** have to take care of because they can't. I would hate to see that disaster. So it would have to be C, he would need a safe place to be with people who would look out for him. It looks like a never ending circle with very few viable options, no matter how much planning I do.
#NewVA, I hope you're listening and taking to heart our stories. Not just my story, but others. Families and caregivers, which have yet to be included in your roadmap for a "new VA" . Please include us, we selflessly offer so much to our veterans often with no breaks and no time for self care. I don't believe it is asking too much to be included in your plans so situations like this can be avoided in the future.
#DearVA - Dear World out there, Family and Friends,
This will be a difficult one but it needs to get out of me. I've been writing these letters for about a week, hoping you would hear. I know many things I write about are hard and can be disturbing. I am trying to just let my anger and frustration out but am mostly trying to bring awareness to all that is going wrong, has been going wrong for way to many years and explain how difficult it is as a caregiver who has walked in them boots for all them years too.These letters and the complaining is not about a "hand out" at all. I have seen many over the years, who only are looking for that but when I look back at the last 10 yrs, more times then not, we were just grateful for whatever you gave. We weren't sitting at your door each day looking for more. I can't tell you how many times he said he doesn't deserve more for the fact that he still has all his limps , can still walk, talk and still has his life as difficult as it may be to live with PTSD alongside a long list of other medical issues that are wrong with him. I am not complaining over the life we lead, with the ups and the downs as anyone else out there sees. I am grateful for each day I get to be with him since I could have lost him so many times over - too.I chose the life of an Army Wife , never knowing what will come later in life, but when I signed the dotted line and said my "I do's" it wasn't about you. It was love and that is true. I love him more each day and made the commitment of a lifetime to him.People tell me why do you punish yourself and your kids, divorce is so easy ,why would someone live like this ? Yes, divorces are made easy and many can't live the life of a caregiver, the life of a Veterans wife, many can't face the day to day hardship we see - but true love is stronger , don't you see ? I was on the merge on given up often and wish I could just get a "break" to sort my own mind and build the strength in me again to face another day of this life. I am not writing to you to bitch and complain , just want a little help , a "break" so to speak. You could give me the help, the support that I need with all the right tools in place at the #NewVA . I'm just tired of fighting a war with you and tired of the lies , the rocks you lay along our way.
I could tell you stories of things that happened over the last 10 years, painful memories that stay with me but all it would do put the wrong portrait of him on here. He isn't a monster,you see, but a man who cares for his country and family.He is loving and caring with a heart made of gold but he fights a war within him, a never ending war.I will stand beside him, be here for him, I will protect him, fight for him and advocate for him because if I don't do it, no one else will.
For all of those out there, who get upset at me for writing these letters, please remember that only about 3 % of the popularity will stand and fight for this country,for your freedom and know exactly what it means when they sign the dotted line, that includes to give their life. Their service means more to them than you can ever imagine. It isn't about the GI Bill, the money they might get at the end of their service. It is about honor and love for country and family. Please stop saying things such "it was their choice and now they have to deal with whatever has happened to them, is given to them" , please stop to call them names, call them monsters and murderers and more horrible words.I haven't met a Veteran who doesn't carry a heart of gold,who cares for his fellow brothers and sisters, who wouldn't stand tall to protect and help as far as they can. Please stop judging us Caregivers when we bitch and we moan, we just want some support, some help that is all. Please don't tell us how easy it is to walk away or ask us why we punish ourselves by staying there. The reason is simple don't you understand - WE FEEL TRUE LOVE OUR HEROES!
This is my rant for today, I have nothing more to say. Just listen to us, and help us a long to make the lives of our Heroes a better one.
Wife of a Veteran - a Hero who is loved more then words could ever say. Mother of 3. ONE VOICE.