Sunday, February 20, 2011

How Can I Give My Children Their Childhood Back?

At the end of the day the things that I really wish I could just make better are the things that should be a given. I want to give my children their childhood back. How do I go back and make things normal for them?

Nobody dreams growing up that their happy ever after of a picket fence and kids will really be struggle after struggle. The things we took for granted growing up are so out of reach for my children. Dad waving as your up to bat. Cheering you on as you serve that volleyball over the net. Standing there applauding as you deliver your lines on the school play. Tucking you in at night and reading you a bed time story.

The reality is Dad is overwhelmed with despair. He feels like he is no longer a man because he can't staunch the flow of tears. He has such high expectations of them because his life has shown him that even when you do it right life is unfair. He can't give them hope because he himself has NONE!!!

I want my children to have the memories of family vacations and they do have some but they are with their friends families or my parents. The memories of ours consist of packing the car and then not leaving because Dad just can't face the world. He loves them and they know it. But they also know we don't make any loud sudden noises to include laughing. That is so NOT what I dreamt of for my children!

How do you explain to them when they ask but Daddy was in the Army why don't they fix him? Out of the mouths of babes right? The battle that is waged on a daily basis in our home is so time consuming that not only do they have little input or support from their father but their mother is exhausted and short tempered as well.

Life is so unfair. I know we are not alone and while that gives a sick sense of comfort mostly it just makes me feel sick. This generation of our children will grow up and have their children. What kind of long term cycle is this creating? What lingering issues will this cause? What kind of havoc will this cause for my children and their self esteem in the years to come.

The upside is that their father is alive but at this rate and the constant fight for resolution for him I don't even know how long that will be a reality and then what new issues will that bring? At least they know their father loves them and of that they have no doubt.

Winter and/or Full Moon?

Dear Caregivers & Friends,

Maybe it's the winter months of grey, cold, and damp, or maybe it's the recent full moon, but the majority of us appear to be struggling right now more than usual. Our blog authors have been especially overwhelmed in recent weeks and we want you to know we wish days and nights were easier for all of you. If only we could open a Rest/Recharge Spa next to each VAMC to provide some respite during the often long hours at the centers, but you are needed for the appointments, so that's just not possible on so many levels. 

Many of you have said how difficult it has been to read recent public announcements of great support to come, which led to hopes raised, then lowered in the space of two weeks. But rest assured, that support will definitely come and there will be good programs in the near future.

But, for now -- what to do? If you can find the time, will you take a moment and write the key things that would help you the most? Have someone run errands for you? Someone to really listen to you? For things to be good enough at home to return to your schooling or career? Find or create a portable job you could do flexibly given your caregiving? Gain medical care for you and your children? Participate in a sleep or caregiver stress study? Obtain a service dog? Say what would help you and think bigger than an uninterrupted cup of coffee - you matter and let's see if there's anything we can practically DO while we wait.

Hugs and blessings to you all,


Tuesday, February 1, 2011

VA Caregiver Hotline

I am not sure how many of you are aware of this, but the VA just launched It's caregiver hotline. Now you may wonder, is this just one more person that won't give a crap and will say they do? You may also think, WHAT? another person to keep up with? I decided to call the hotline and see what the heck it is all about and whether or not the people were competent. I have to say that the phone call was somewhere in the middle for me. The person seemed like she had a clue what she was talking about, but she also seemed like she was just someone at a call center taking information and was rather disconnected from everything I was saying. Do I expect them to get it? No! BUT it would be nice if they showed some empathy for what we go through every day. I also had to laugh when I saw the new website, because once again they are trying to give us all of these "helpful tips" but seriously they are not practical when there are obstacles to every one of them. Until they figure out a way to help address these issues and the obstacles people will remain "burnt out".

So what does the site provide? They have a video that represents a broad spectrum of caregiver's. A few questions to help you determine if you are a caregiver (though I think we all have that one figured out! lol..) They also have some statistics that were provided by the National Alliance of Caregiving. They recently did a study on caregiver's of Veterans. While I think they are trying, they still are so far from the mark in my opinion. I was told that this caregiver website is one of the first steps in the caregiver bill. When I pressed in on more important questions I was basically told that things are still being worked on and that they didn't have answers for me. I guess the stipend is a major issue and question among caregiver's and rightfully so, however yet again they seem unable to figure out what the eligibility will be for the stipend and how they will implement it. I think they are really trying for some CYA so that they don't piss us all off if only a select number get it. I also got the impression that the lady knew more than she would let on, and that she was reading from a script or something.

I was so not impressed and plan on calling back tomorrow to talk to a supervisor. It sounds like there will be a public online forum as part of the process of the bill where we will be able to provide some feedback on various things, so do call and get your email on the list so that you will be aware of the progress of the caregiver bill and the chance to give your feedback.

You can find the VA caregiver website here

and the phone hotline number is

855-260-3274 M-Fri 8am-11pm EST
and on Sat from 10:30 am -6 pm EST

So what are your thoughts? Do you think we will see this bill implemented anytime soon? Do you plan on calling the hotline and connecting with your local caregiver coordinator to let them know what you are thinking and feeling? I would love to know how you are all doing and what your thoughts are.