We had a really good day today. We got a new nursing assistant and both Kevin and I just love her. I think it really made a difference that she is only 25 and could better relate to Kevin than the older set that they have been sending. Those ones always sat and talked to me instead of concentrating on Kevin. It was starting to stress me out because I wasn't able to get anything done because I was constantly having to 'entertain' the nurse. I didn't think that was the purpose so I am glad I called while in PA and had them send us someone different.
Anyway, it was so nice because Kevin even went with her to Subway and he NEVER leaves me. And when he came back he was so excited because she listens to screamo too. I called the healthcare firm and told them to never take her away, lol. Unfortunately she can only come Tues and Thurs though (at least for now).
So to begin telling you guys some of the things that are really bothering me, I first need to ask again for y'all to write your senators and congressmen about the caregivers bill (July 16 post). It is so important because that is one of the major reasons that I am not sleeping. Money. (Doesn't it always come down to this in the end?) I also want to stress that this post is not me asking anyone for money - it is just an explanation into the true financial situation of a wounded soldier's caregiver so that more and more people will help get this bill passed.
Anyway, y'all know that I lost my job. What many of you don't realize is that although I have no income because I have to take care of Kevin - Kevin is not allowed to spend one cent on my needs. It is 100% against the law. I can be audited at any time as to how his money has been spent and I also need to file a financial report with the court system on a yearly basis.
I want to quickly jump in here and say that I'm not talking like I would ever just go out and blow his money - that's not the type of person I am.
But...
This means that if I need food - that's too bad. If I need clothing - that's also too bad. The same with a haircut, my phone bill, my shampoo and conditioner, gas for the car and every other thing you can think of.
I do have some money still left over from all of the donations during the last year - everybody has been so wonderful in supporting us - but the money is almost all gone. I have been laying awake at night trying to decide on whether to do a voluntary repossession of my car. It's a very hard decision to make because it's how we get around. The van is broken down (has been for months) and I can't get the company we purchased it from to come and get it to have it fixed so we truly use my car for everything. But Kevin can't make the payments (and let's not forget the insurance too) and I can't afford to pay it off. I could make the payments for a little while, but that gives me even less time to be able to buy food. It's just such a damn hard choice to make.
And frankly - I resent that I even have to make the choice. I swing between desolation that my credit and livelihood have been destroyed and anger at the Army for not caring enough about their wounded to take care of those that are taking care of their own.
I will say that I had told Kevin that he was just going to have to buy a car and that would have eliminated the problem of us having a way to get around if I did give my car back to the bank, but I learned while we were in PA that the Pentagon can't figure out how to do the expedited discharge so it will be 8-12 months before he is truly discharged (and that's if it really gets started - something that was supposed to have been done many months ago).
I have to be honest here - I had been assured that Kev would have been discharged around the time he purchased the house. Kevin's active-duty pay will not cover the cost of a home in Florida so I had left money in the bank to cover his bills for quite a few months - but definitely not enough to carry this house for a year. Which means that if things don't change - we will be homeless and frankly - that just makes me sick to my stomach - literally.
Now I will say that Breezy is looking for a job. She hasn't had any luck in this economy, but she is looking. Once she gets one, she is already aware that she will have to support me - but geez! Why is it her responsibility to do so? And is she supposed to do this forever? When she has her own family to support is she still going to have to give me money on a monthly basis?
This whole subject just isn't right!
But what are our options? Seriously? We, as caregivers of our own wounded soldiers, can either lose everything to take care of our loved ones or we can put our loved ones into a facility - allowing us to maintain some semblance of a normal financial lifestyle. What a choice, huh?
I guess the Army knows that most of us are going to lose everything to take care of our sons/daughters. Matter of fact - I would lay odds that they bank on it. Saves them a ton of money, doesn't it? I think I read it costs $27,000 a month to put someone like Kevin into a facility. Wouldn't the military/VA system be crippled if we all put our loved ones into a home just so we could buy a hamburger for dinner?
Oh well, I guess it's not going to happen. I am not putting Kevin into a home so I just need to figure out how to subsist on basically nothing. I am so thankful that I didn't have any credit card debt so I only need to worry about essentials and the car payment and insurance (if I do decide to keep it).
So anyway - please! Please! I beg all of you to help us get the word out about this bill. It's Senate Bill S801.
And because I really do try to end the blog on a positive note - go back up and read paragraph one. Otherwise y'all are going to be as depressed and scared as I am...
PS - here is a link to an editorial that the Pittsburgh Post Gazette did on this very subject:
Editorial
First 2 from the Nov kit!
12 years ago
16 comments:
Is it possible now that Kevin has caregivers coming into your home that he is comfortable with, that you could get some kind of part-time job? This would not only help with your finances, but also help you resume some kind of "normal" life which includes, for most of us, going to work. That is the purpose of the caregivers coming into your home, isn't it? To allow you to focus your attention on something other than 24-hour-per-day care of Kevin? Just a thought....
Leslie,
Any chance to work at home on the computer? 'Breezy' might think about this also as she is looking for work.
There are a lot of companies that are looking for people to work in this manner.
This, if possible, work might work out in the care for Kevin.
It would also establish boundries on the "need to be entertained" care givers.
I truely understand that taking care of Kevin has been and should be your FIRST priority. This is going to be hard for me to say but I am not trying to be nasty but alot of people go day to day in this ecomomy with basically nothing and they aren't even taking care of a wounded soldier whether they are a son or a daighter. It is ashame that anyone in this country should not have the basic needs such as somewhere to live, food, clothing, shampoo, etc. I commend you on everything that you have had to endur through all of this. I myself am going through a tough time of it even though I do have a LITTHE money coming in. At the end of the month, I don't even know where my next meal is coming from or anything else for that matter. I only wish that I could get donations to live on but thenn I just have myself to worry about.
Could Breezy find a job in the Orlando area...not sure how far it is from Tampa, but I'm sure there are many jobs there with it being a huge tourist area. I agree with Anonymous #1 about getting a part-time job. Maybe just 15-20 hrs. a week would help. Maybe it could be when Kevin's caregiver is there and that would give you and he a little independence from one another. I wish I had extra money to send to you, but in this economy, I have nothing left after paying my bills, etc. As Kevin's caregiver/mom you should not have to worry about where your next meal (or bottle of shampoo) will come from. These situations are not ones you see on the "enlistment" posters of smiling, happy soldiers when recruiters are trying to get our sons/daughters to join the service.
I am going to write my state's representatives immediately after this comment. You are in my prayers.
Hi Leslie ~
Although I know, if the opportunity came for you to work on a regular basis, you would in a heart beat, I must get to reality and say, that if the caregiver only comes twice a week, and for a limited amount of time each of those days, it cuts into the job that might hire you. I also know that if you found a job that would, in fact, work with that schedule, it will be a while before you feel comfortable making a commitment to a job.
If working a few hours a week would solve the problem, I know you would have done that already. When the care giver is there, it would seem a more prudent idea, to take care of things there at the house, pay bills, and above all rest. Yes. Just to be able to get some down time. Which, I know anyone following this blog will agree, just because Kevin is doing better, does not mean the fight is over.
The Bill you speak of is the bigger picture. Not just for you, but for the many others who have faced this situation. I do not think there is a care giver alive today that would not go to work if they could, and make enough money to prove that sacrifice worth it.
I also know, that if work appeared for you, that would A)work around Kevin's ups and downs B) Pay enough that the stress on your physically would be worth it and C) Would juggle that part time schedule whenever a crisis or appointment for Kevin arose, honey you would take it. I have no doubt.
We all have written how strong you are. How brave you and Kevin and Brianna are.
Where I find your bravery most profound is your honesty. To an unknown world.
Prayers will continue to come, I have complete faith. And may those prayers touch the heart and reason of the political machine that needs to move quickly on this.
Until then, I pray that somehow, by some miracle, some amount of stress can be alleviated. And when the time comes, that Kevin is cared for and able to be alone, for a reasonable amount of time, I know you will be at a job. There is absolutely no doubt in my mind.
So, you keep doing what you are doing. And please know, there are many out here in blogland, who admire you.
Prayers love and hugs. Always
Leslie my heart absolutely breaks with all the hardships you are going through, physically, emotionally and financially to take care of Kevin. You are one AWESOME mother!!!
Please go to the Army Times, http://www.armytimes.com to read an article that was published yesterday about help for care givers...House passes bill to train.... I have not seen anything passed by the Senate but I will keep you posted.
Keep your chin up girl, you are AWESOME!
Leslie, you keep your head up high and know that you are doing the very best for Kevin. Only someone who has walked in your shoes could know what mountains you have to climb on a daily basis. When I sat at the Purple Heart Ceremony and listened as Kevin said one simple word, "Thanks", I could do nothing other that weep. That was a testament to your sacrifice and your willingness to give up everything for your child. Don't you ever feel bad for accepting donations. You all so deserve everything you have been given. Stay strong and as always we continue to pray for all of you.
Leslie, I just want you to know that I have contacted both my Senators and asked that they help in getting Senate bill S801 passed. It certainly isn't much to do but I hope in some small way it helps you and Kevin. And the last anonymous message was also me. I forgot to sign!! Senior moment!!
Melissa Ion
Hang in there!
There's a new comprehensive information and resource center at http://www.newgibill.org/, expanded now that the new GI Bill is being implemented. Thought you might find it useful.
I will definitely contact my congress critters about the caregiver bill.
Leslie,
After leaving my comment this morning I have been thinking of things that I have heard of about companies hiring people to work at home of which Most of those things were in the service end of their business. A lot of them were in the line of computer support. Some were from catalog companies who were looking for people who were service reps. or problem solvers.
With all of these jobs you would be setting your hours while working from one of the rooms of Kevin's home. If, it was with computer support/service then working at night or when Kevin is busy with his theropy, care givers, or when you have to go out of town for his surgery{s} This would solve a big question/problem.
I know that I begining to sound like a broken record but the important person here is Kevin and with being able to have a job that works around his 'structured' [?? LOL] days then it is a win-win for you. If, Breezy can do this also... then it is a double win-win.
Doing these jobs now even if that's not what you want to do is a start. Cash flow allows the person to have the oportunity to take classes and improve knowledge and/or work areas.
I've noticed when reading your posts that when Breezy is around Kevin seems to do better. It's like a big piece of him goes missing when she leaves for any amount of time. That's usually when he digs his heels in and gives everybody a hard time.
This is just an observation from one looking into the window of "Life with the new Kevin". So finding a job where the both of you are around is a good thing. He probably doesn't even know what is so frustrating for him...Breezy is gone.
Miss Em
Austell, Ga.
If Kevin's money has to be accounted for, is it possible for Kevin to hire another girl that you and Kevin both could interview ? Possibly like the one in her mid 20's that Kevin relates so well to. There are many out there.
I know the one you just got is provided by the government, but if his money can hire one or two. Why not ? You have told us it is spent for other things and this sounds as though at this time in everyone's life it is a much needed expense.
That would give you a much needed rest away from it all and Kevin too. If more than one was hired, this possibly would permit you to get a part time job.
It appears as though his money has not been monitored with what could be bought in the past by the government. A caregiver is a much needed expense and not a frill, not just for Kevin but for you.
Sometimes things need to be thought out and planned well and then decisions made.
If they are not going to permit you to buy small daily needs articles for yourself, something is wrong here. Extravagances are extravagances but shampoo, deodorant and the such are needed items that Kevin's Mother needs.
I am sure many people can relate to the anonymous post #3 from the guy / gal. It is sad. I am sure many feel her / his pain too.
So good to hear that Kevin's new nursing assistant is working out! I can see why a younger woman would connect better with him and hope you get to keep her.
No wonder you're too stressed to sleep at night. You're caught between a rock and a hard place for sure. I'm praying someone high up gets wind of this post and hurries along Kevin's discharge so he can get the money he needs. Take care of yourself. I'll be thinking of you all and keeping all these things in my prayers.
I heard from my son the govt gives a perdiem to care givers? you may want to check into that it may be enough to pay for personal needs,food and gas I did see in your blog a long time ago they were helping you did they stop? I would also check into the TSGLI of $100,000 they should have paid him and has any of the many non-profits assisted you? I know they have not heard about this. I will look on line and contact some of them and see if they will help you and blog which ones and what they said about assistance, they should be willing to help. This is terrible You should not have to get a part time or anytime job we are grateful you support our American Hero. Has Kevin enjoyed the pool? I would think if the govt will allow a pool in a 100% money audit they should assist or allow money to be spent getting the van fixed it is as important as a pool. I would get his unit and sgt to work on this stuff he is in the Army!
Hello Leslie
This is the first time I posted a comment to you, although I have followed your page since almost the begining. I have 2 sons in the Military, One in Iraq at this time,he has already done a 1 yr tour in Afghanistan. The second son is scheduled to deploy to Afghanistan in Jan. I have read the comments you have received about finances. I see you as a wonderful mother who is doing everything possible to make your son as comfortable as he can be. I have written to my Congressman and Senator. We have to support our military members and the caregivers who take care of them when they have been injured. I will keep you and your family in my prayers. PA MILITARY MOM (2)
Leslie, I just wanted you to know you are an amazing person and unbelievably selfless and exactly what every person would want in a mother! I am dumb founded that anyone can even mention or criticize how the monies are spent. Until any of these people are in this position, they will never understand and what the expenses and needs are of someone as special as Kevin.
You and your family are truly amazing and I'm proud to know you and see how you take care of your family. I'm so glad I got to finally meet Kevin at during River Fest and see him at the Purple Heart ceremony and All Stars.
Take Care, "local camp guy with the spiked hair :)"
Great post! I actually found your blog after looking for information on this Bill. It really really needs to be passed. I dropped my life for nearly four years to be by my husbands side. And even now, he retired a couple of days ago and I have no idea what is left from right. He isn't 100% ready to be "normal" yet, so I'm still doing paperwork, cooking, cleaning, making sure he gets to appointments, making sure he keeps his meds filled, the list goes on... And now on top of that, I have to find work, and want to go to school. It's crazy. It really never ends. This bill would be a blessing to so many families.
Post a Comment