Tuesday, May 5, 2009

Day 339 - May 5, 2009

I am having a little pity party tonight. I am struggling a bit with having to be in one little room again. It's just so hard because I can't even leave it for a few minutes because Kevin can't fend for himself enough. Even if he's asleep - I still need to sit here. The worst part is that he has been sleeping nearly all afternoon. This means that I have to have the lights off, I can't watch tv and I can't talk on the phone. I just have to sit here quietly, in the dark, and it just plain out stinks.

I personally don't even understand why we are still here. They don't plan on doing any kind of surgery until mid-June so send us home. It's not cheap for us being here, not by the time we rent a car and have to eat out all of our meals again and it's really not in my budget to be here unnecessarily.

Grrr...

I think I am just hitting a bit of depression myself. It's hard for me watching Kevin go through everything he is going through and it's also hard to have to deal with my own feelings. Yes - I know that we are lucky, we are so lucky that Kevin is alive - but it doesn't change the fact that everything is so different for us.

I personally have nothing. To be my age and have no medical coverage, no pension, no home of my own, no job, no income, and no possible way to keep my credit score high - just sucks. When (and I mean WHEN) Kevin is well enough for me to move on, I will have no way to do so. Everybody checks your credit before allowing a person to rent from them. You always need to have a job and let's be honest - who is going to hire a woman who is close to 50 years old before they would hire a person who has many years to give to a company? And truthfully - will I even be able to work? I have probably mentioned here and there that I have a degenerative neuromuscular disease. Well, I can't even have it treated because I no longer have insurance. My right hand has been tingling something fierce the last few weeks and that's just too bad, isn't it?

It's just awful scary to be in such a position. It really is. I just wish when Kevin wanted to enlist I would've tried harder to talk him out of it. We both paid the near ultimate price - and I think it's sad that only one us will be taken care of for doing so.

Which brings me to my next point - I just don't think it's right that the government doesn't take care of those of us that are full time caregivers for the soldiers that will never be the same again. I mentioned more than once that all of us parents and spouses should pick a day and put our loved ones into a nursing home and see how the government reacts. I read that it costs $27,000 a month for a nursing home patient - so just pay us even $2000 a month to cover our bills. Give us some respect and give us our own self-worth and dignity back.

Damn. I think I just need to shut up and go to bed. There's nothing else to do while sitting here in the dark at 9:13 in the evening...

(I will probably regret this post tomorrow, but this is how I feel right now. And NO - I am not having a breakdown either - this is just an awful trip)

15 comments:

Andi said...

I've followed your story and Kevin's story since last summer. It breaks my heart that both of you have to struggle and fight for what you deserve. I agree that you should receive compensation for the work that you do. You both have sacrificed an incredible amount for our country. In return, our country should bend over backwards to do as much as we can for you. I know this is little consolation, but please know that I deeply appreciate both you and Kevin.

Anonymous said...

Leslie, If you and Kevin are up for a visitor while you are still here, I would very much like to come see you at the Fisher House.
Janet (jwheels55@yahoo.com)

Long-time RN said...

I agree as well that there should be family caretaker funding provided. It's no wonder you feel the need to vent this out. Everything in your world has changed, and not by choice. Your family has paid an extremely high price for Kevin's serving in the military and for this we have endless respect and thanks. With your creativity and drive, there will be a position or job for you in the future.

Keeping you and Kevin in thoughts and prayers.

Anonymous said...

Maybe more people from the government need to hear you. It is very true what you are saying. I am sure that they encourage family to take care of soliders. Not taking into consideration what toll it is on the family. Not just the cost of a nursing home. But what happens to the solider at that point. It is times like these that it is harder to keep faith. But you need to. God is out there for you and Kevin. Keep your faith. We all know that you are thankful for Kevins life. But I was told once when you stub you toe it still hurts.

Anonymous said...

Big "Hugs" to you Leslie!
I'm sorry this trip isn't one with a lot of results and pray the next one will be much better!
I hope you will be able to leave soon.
Take care,
Kathy in IA

Anonymous said...

We are all entitled to our pity parties or venting or whatever else we may chose to call it.You and your family have been through so much in this past year and it's
hard to always remain positive and upbeat.Try to keep the faith and things will work out;look back at your past posts at the things that upset you or worried you and see how they have gotten taken care of.
I know it seems so overwhelming and scary right now but there are
answers to all your questions,all your concerns...just take them to
someone who always listens,who always cares,who is always there for you...GOD.He will give you answers;not always the ones we are hoping for,but nontheless they
are his answers to our questions and needs. I am done preaching now and just want to add; we love you and so does GOD.

Anonymous said...

LESIE..
HOLD ON IT WILL GET BETTER..IS THERE ANYWAY YOU CAN APPLY FOR MEDICAID..YOU ARENT WORKING..AND TECHNICALLY ISNT THAT WHAT IT IS FOR? I SURE HOPE THINGS TURN AROUND FOR YOU SOON.. YOU HAVE HAD WAY TOO MUCH ALREADY..TAKE CARE
AJ

Janna said...

I pray for Kevin,you and Breezy every day and not just for the current situation but for all that is to come. I do hope at some point you read "The Shack" as I think it will give you comfort. Give it a shot...cant hurt , might help.
God grant you His peace and mercy, now, when you most need it.

Barbara B. said...

Leslie, I'm so sorry for everything you and your family have to go through. I'm so grateful for our soldiers and their willingness to give all for the rest of us. Our government should take better care of all of you who suffer the consequenses of serving.
As far as your future, since you are smart enough to keep looking that direction. You are learning valuable lessons right now, doing what you are doing. You are learning how the medical system works, how to properly care for the disabled, how to work your way through endless red tape to benefit a patient. Have you considered taking some online college courses to work toward your degree in social work, or management? Please do not count yourself out of the job market or a future at your young age. I'm 56 and I just renewed my paramedic license for another two years. And I'll keep doing so until I'm good and ready to retire in comfort, or unable to do this job. Then I'll find something else to do, if I still need the income. The manager at the assisted living facility that my mom lives at wants me to take a 40 hour course to become certified to manage a facility. No college degree needed...just common sense, some valuable experience, and a valid certification. Do NOT dispair. There is a place for you, if you start working toward something now. My daughter's been working toward her BS degree online for the past two years, and is almost done. She works 60 hours a week as a 911 dispatcher, and has two kids at home. You can do it too! Take time for yourself to discover your passion again. What did you do for a living before Kevin got hurt?

Anonymous said...

go on down to the drop zone, toss back a few and vent. you'll feel better for it.

Barbara B. said...

Leslie, it's me again. By the way, have you ever considered telling Kevin's story in a book, using this blog? Not to exploit his awful situation, but to educate America on how our soldiers are treated when they become injured? About how the families have to sacrifice everything in order to make sure their soldier gets the proper treatment? About what it's like to go down the road you've been forced onto?
Not only would it put a spotlight on a terrible situation; it could maybe set up a better financial future for you and your kids.
Just a thought that popped into my head. You have a gift for describing everything very well. Maybe you have that gift for a bigger reason.

Pat said...

Vent away Leslie! I can't think of anyone more deserving of a good ole pity party and vent! I agree with Barbara's post and the anonymous one about "tossing a few back", and I don't even drink!

Why would they keep you hanging around if there is nothing more they are going to do for Kevin? I don't understand that. . . and so much else for that matter! You need to get back into the home you just recently relocated to.

I always hated this saying when my Mom would tell me that, "what don't kill ya, will make ya stronger". Ugh! I know sometimes we just want to say but aren't I strong enough already!

Continuing to lift you and Kev in prayer!

Angie said...

I have just recently found your blog (in the last 2 or 3 months) and I don't think I have ever commented on here but here I go on my tangent. LOL.

VENT AWAY girl. You deserve it. BTW, don't know which way you sway politically but I sure as heck would be finding a way to get a letter to President Obama or his wife who have vowed to help MILITARY FAMILIES that have been wounded. You should have the right to have the same benefits being Kevin's sole provider as if any other person whos husband or wife was wounded. If you ever have to go find a job, I would put that your work experience from 2008 - 2009 was taking care of your wounded son who was in the military. Do not make that not important. You hang on. Things will get better.

Also, regarding your degenerative neuromuscular disease you need to go file for disability and see if you can get on medicaid. Shoot I know many people who went on disability for much less. You just need to see if your doctors in PA would write a letter on your behalf. Just a suggestion.

Anonymous said...

There is family caregiver funding available through the VA for veterans. Once Kevin is no longer active duty you can apply/ask for funding.

Jessica said...

That really sucks that you have to stay there like that without any reimbursement for your expenses, either. And how did I miss that you had a degenerative muscular disease? I agree with the other poster who suggested getting Medicaid if you can or finding some kind of assistance. You certainly deserve some.

You're going to be ok. You're a fighter just like your son is and you have many talents that you can use to make a living. Of course, your future is a concern and the unknown is scary, especially with being sick. And having to sit alone in the dark in a tiny room makes it all look that much worse! But I believe God has a plan for you and He won't let you down. The hard part is placing your faith in Him and trusting Him with your future.

I'll be thinking of you and praying for you and Kevin. I'm glad you have this blog to vent when you need to, especially when you're alone.