Friday, August 29, 2014

The Ramblings of a Tired Caregiver

Over the past few weeks, I have come to realize what I think is the hardest part of a caregiver's journey. I have surrounded myself with several caregivers who are just like me. We have been through so much and helped so many. I have learned that when we take the time for ourselves it turns out that's not allowed. Somehow we are supposed to do everything on our own and it is almost blasphemous when we ask for help. It even appears to us that since we have done so much for so many others, we are laughed at when we ask for help.

I have come to realize I am not allowed a day off and away from my work. I am not allowed to not answer my phone. I am not allowed to not help every person to the extent I am comfortable, no I have to ensure their happiness before my own. Forget my happiness altogether, I am supposed to be strong 24/7 and put the problems of everyone else in front of our own. I am supposed to be the fixer for every person who decides they want my help.

I am up before the sun and asleep after it rests. I am very seldom detached from my phone. My work laptop goes with me everywhere I travel. I can officially say, I am giving until it hurts and I am tired.

I am up before my family so I can make sure Chaz's day is as convenient as possible in our dreadfully unsafe home. I put in at least 2 hours of work before he comes down. Then I spend my day taking care of everything he needs while juggling work, homeschool, feeding everyone, our side of building our home, Girl Scouts and the needs of a gazillion others.

Am I complaining? Actually no, I truly love my crazy life. I am called to serve others. I happily accept that calling. I love helping people. Like the other over 5 million caregivers in our country, I am proud to give care to the person I love. And I am happy to help others when they need it.

This week has just been a tough one. I have learned that sometimes my help is just not good enough and it hurts when the people you try to help tell you that. I have seen some things go down that question my ethics, but those things seem to be ok with a lot of others. I have been told that the needs of our family are less important than the needs of so many others. I have definitely taken a few hits this week.

It really hurts that I am not allowed to ask for help. It also hurts when I ask for help and am told "This other family needs it more," or "If you'll just take a minute and think about it, you'll figure it out, you always do," or "Well you chose the life you have. I don't feel sorry for you. You married into the Army. You knew this could happen." Yes those things have all been said to me several times. Each one has carried its own personal stinger.

It hurts that I am not allowed to be weak and be upset every once it a while. It hurts that I am just supposed to suck it up and give, give, give and don't dare ask for help, because if I do then I am being selfish. It appears I am not allowed to have a selfish moment where I can ask, "What about our family?"

I have chatted with a few caregivers who all feel the same way. We chose to stay with our husbands and help them heal. We'd all do it again in a heartbeat and we carry no regrets for that choice. Somewhere along the way society has also decided we are supposed to also choose to always be strong and carry the load 24/7 without a break. And we are supposed to put all other families in front of our own simply because we are so strong we can do it all.

Well friends, I am going to stand up and say I have to stop for a bit and get back to my cuties first rule. The needs of so many others has pulled me away from them and I must get back into our family's mission. 

Today sounds like a great place to start. We have hotel vouchers that are going to expire and are non-transferable so we are going away for the weekend. I am not bringing my laptop and I am not touching it until Tuesday morning. I am putting an auto-reply on my email. We are going to get in the van and go away and just be a family for the weekend. Anything that is not resolved by the time we pull out of the driveway today can wait until Tuesday. That funny thing is I will have to keep reminding myself of that.

To my caregiver friends, I encourage you to do the same. Take a break this weekend. The government is off so you can't do anything until Tuesday anyway. Only answer your phone when you know who is on the other line and you know they won't ask you for something that takes you away from your family. Just be a family this weekend. Just focus on your family's needs for this short time. I know, I know I am suggesting something so radical, but let's do it!

And for everyone else, you do it too!! Go be a family this weekend. Take the time to make great memories together!! As Maya Angelou said, "People will forget what you said. People will forget what you did. People will never forget how you made them feel." Go make your family feel your love.

Saturday, August 16, 2014

Ready for a Safe Home

It happened again....Our current home hurt Chaz.

This time he was just trying to get out the door to go to the movies with his friend. The door then snatched his wheel. That stopped the wheelchair which then flung him out of his chair straight onto the ramp.

God Bless our friends, this was their first time seeing a "yes we know we need to get a safer house and you just witnessed why and yes we're working on that" event. They didn't really know what to do, but they have learned we just adapt and deal. I dropped what I was doing to get to him and help him back into the chair. He said he was ok, but I know he was in pain. I could just feel it.

I am so ready for a safe home. I am so ready to not have to worry about him constantly in our home. You just shouldn't have to worry about someone safely living in their own home. Our home should be a place where he is safe and sound. He should be able to come and go as he pleases and not have to worry about taking on additional injuries in his own home.

Building this home for him has been so frustrating. We had a groundbreaking on January 29, 2013 and then were forgotten about. Chaz and I had to take everything into our own hands and figure our how to build a house because those who promised to help just left us hanging. It has been such a frustrating and aggravating fight to get this house under construction. I know that they are people who are tired of reading about our housing woes, but I am tired of us living this way.

Our home is only 6-9 months away now. We paid the first invoice Thursday. While that check was painful to write, we are so excited that a safe home for Chaz is finally happening. We have waited so long and worked to hard to make this all happen. We are so thankful for the members of our building team who all have stepped up and are helping us create this safe home. In 6-9 months, there will be a long blog post of people to thank and one day there will be a big party to celebrate our safe, forever home!!

Many have asked how you can help, here's how...Just visit this link and become a part of our forever home. Thank you!!

Thursday, August 14, 2014

17 Years Ago....

Yesterday I had the honor of helping my little brother move into college. He chose my Alma Mater, Kentucky Wesleyan College, so to say I was excited for him is a big understatement.

Jarrett and I are 17 years apart in age. We have different Moms and grew up in different circumstances, but yet we get each other. It must have something to do with being the youngest sibling.

Chaz and I have really enjoyed getting to know my little brother. We are extremely proud of the young man he has become. Over the past two years, Jarrett not only finished high school, played football and held a job, he also became an Eagle Scout. He now has made plans to join the Marines after he plays four years of football and gets a degree from KWC. He has a very bright future in front of him and we are excited to watch him grow.

When he invited me to help him with college decisions a few years ago, I jumped at the chance. I wish I would have had someone to walk me through it all. I was the first one in our family to "run off to college" so I was the one with a few "this is how I did it" lessons for him. A few weeks ago when he invited me to help him move in, I attempted to take the day off (this is really a ha-ha moment, I never get a day off and didn't yesterday either) and got myself to Owensboro to help.

As I walked up to the student life center, I saw a "Welcome Class of 2018" sign. It was then I realized that 17 years ago I was the new student moving in. I instantly remembered how I felt that day. One big difference, I was so stubborn I moved to college alone. I would not let my Mom and Step Dad take off work to move me in, I didn't want them to have to take time off for me. Instead I loaded up my essential items that would get me through until they were off for the weekend, and I drove myself to my dorm on a beautiful day in August 1997. My little brother was shocked, for about a moment, to learn I did it all alone. Although I would do it all over again, I wanted my brother to know he had our support in this new exciting transition he was beginning.

The transition to college is intimidating. I remember it so well. There's this moment when the gravity falls on you and you realize you are 18 now and you have to figure it all out. Jarrett has had that moment more than once just like we all do. And while I know he knows we are here for him, it will never hurt to give him that reassurance.

Yesterday was all about Jarrett, but I couldn't help but reflect and share with him the impact KWC had on my life while I was there. KWC helped to develop me into the adult I am today. I arrived at that campus as an angry, selfish, immature, ignorant, arrogant, self-absorbed 18 year old. (But as I always say find me a teenager that doesn't possess at least a few of those traits as well.) I left as an educated, happy, blessed, well-rounded, mature adult. I am still arrogant, but I blame my DNA on that one and I wonder if that can be fixed, ha!

I grew up in a small town and KWC showed me the world I knew nothing about. I give most of the credit to my Academic Adviser, Dr Conroy, who I was blessed with seeing yesterday. He and I even chatted yesterday about the person I was when I arrived and who I became when I graduated. He dared me to be better. He challenged me to be a better writer, speaker and a better citizen. I will always be so very thankful for how much Conroy invested in my life. He is still there and so are a few other people that impacted my life.

The Dean of Student Life, Dean Kramer, is still there. I am so glad Jarrett will get to know Kramer. He graduated KWC and stayed there to pass on so many lessons to the future students of KWC. Kramer taught me that you have have an education and a life while you are in college. That was an important lesson to apply to college life and to the real world for the rest of your life. He is an absolutely perfect fit for his job and I was thrilled to learn he is still there blessing the KWC students.

On my ride home, I realized so much happened to me in my short 3 1/2 years at KWC. I met my BFF there. I dated my husband and became engaged before my Senior Year at KWC. I graduated and used my maiden name for the last time there. I adopted our 14 year old cat, Callee, there (Sorry Dean Kramer). I learned so many extremely valuable lessons about life there. And perhaps most importantly I made some amazing friends and KD sisters that I will always remember while I was there.

I am so excited that my brother is going to KWC. I know that his journey there will be as great as mine. And the best news is that big sister has spies all around him....Bahaha!! Just kidding....

Friday, August 8, 2014

You Can Be a Part of Our Forever Home!!!

Ecstatic is an understatement to describe our feelings about this fundraiser for our home that starts today!!

Thankful is an understatement to describe our feelings towards our builders who thought this idea that I randomly had while running the other day is "awesome" and immediately said "Let's do it" as soon as I proposed it!!

Grateful is an understatement to describe our feelings towards 9line, the non-profit who is helping us make this idea a reality!!

It's not a secret that we are trying to build a home to suit Chaz's needs. We officially started our project on January 29, 2013. Sadly we have hit too many delays to count and the house was delayed again and again. Last month we finally were able to get things rolling, thanks to our awesome builders who are working so hard to help us make this all a reality.

Here are a few pictures!
 Week #1
Week #2

The average cost of a home to suit the accessibility specifications of the Veteran Affairs Department exceeds $400,000; however the VA only provides our veterans with a grant of $67,555 for them to build a home to suit their needs. We are all dependent on the support of others to get these homes built for our wounded heroes. This is why there are so many home-building non-profits in existence.

Our total home cost is $431,000. This is the base model. Our builders can tell you there are no frills to our home. Our home is what Chaz needs and that's it, he just has to have so many things custom built for him. Costs are quickly driven up when you mention the word "custom." Chaz and I have already secured a construction loan to cover most of our home's cost. Our builders are working hard to work with suppliers to get product donations. We have had done some fundraising to make our costs go down. (You might recall the AMAZING race Demetria put together.) We still need your help.

Chaz and I are not seeking a free home, we feel that is a ridiculous request. We are trying to get our mortgage to $150,000, which actually the mortgage on our current home. This is how we know what kind of mortgage we can have on the new home. ;)

Yes, I work 3 jobs. Yes, we can afford a mortgage. But here's what concerns us and keeps me up at long will I be able to work? What if Chaz's health takes a turn for the worse? It already has a few times. Luckily I have an employer who is very understanding and gives me the time I need when Chaz needs it. But we wonder how many working years I have left and will Chaz ever be able to work? Therefore, we need our mortgage to be paid off in 10-15 years to be on the safe side.

We need your help!! We want your name, business, or organization's name on the framing wood of our home!! We want every person who wants to see us in our forever home that will always be safe for Chaz to live in to have their name in our home! For a $20 donation to 9line, one of the members of our family will write your request on the framing wood of our home next month!!!

Yes, your name will eventually covered, but we will take pictures (lots of pictures) first. But just think your name, business or organization will always be with us!! Forever!!! We just love this!

The thought of our home being built around the names of those who want to help us get there seriously brings me to tears. I adore the thought of our family being surrounded every day with the names of those who care so much for us. Chaz and I will finish raising our children in this house. One day (hopefully at least 12 years or so from now) our grandchildren will get to see the house that was built on hope, love and the support of our friends who are around the world. Can you imagine how amazing it will be for us to share the story of how our home was finished with the guests you come through? It gives you chills, doesn't it?!

Now you can see why we are so excited?! We are so pumped about this idea!! So how can you get your name in out home? Just visit 9line and donate $20 and fill out what you want us to write. That's it!!

Please consider helping us develop carpal tunnel from writing so many names that our hands can't take it anymore! We are hoping for a lot of hand cramps on Writing Day!! We want your name, business or organization in our home. Also if you'd like to put a scripture (the actual chapter and verse number only please) in our home, we welcome that as well. We have a lot of wood to cover, so help us with this mission!!

What else can you do to help us?! SHARE, SHARE, SHARE this blog!!!! Thank you!!!!

And just a little bit about our awesome friends at 9line....100% of all donations are tax deductible! Nine Line is 100% volunteer effort! All admin costs are covered by their President and Vice President!!They are doing some awesome work for us, aren't they?! Here's the donation link one more time! Please share what they are doing for us with your friends! Thank you!!

Friday, August 1, 2014

Red Tape Diary Entry #3 (VA OT)

Last Saturday we had a home visit with one of the team members from the VA Caregiver Program. I will happily admit the VA Caregiver Program is the one part of the VA system we have had least amount of difficulties with. They laid everything out for us on policies and procedures. While they might have taken a while to do it, they did everything they said they would do. What I found out later was the delay was caused by lack of staff and too many cases to get through, which a constant story heard throughout the VA system. The great news is that everyone we have dealt with in this part of the VA has been professional and caring.

Saturday our nurse showed up at our home early. We welcomed her in and visited with her and answered all of her questions. The home visits are so easy, they just come in to see how you are doing and see if you need anything. We have had always had a different person do our home visit, but they have all been so nice and caring.

This time the nurse suggested Chaz could use a grabber to help him reach things. We had one at some point, but it was too short so he didn't use it. The nurse informed us that she would just order one for him and it would be mailed to the house. She even said that is "too easy."

She put the order in on Monday morning. Yesterday, yes Thursday, four days later, (which is lightning fast in VA time) Chaz gets a call from VA-OT. The lady asked him if he requested a grabber and he said yes. She then informed him that he has to "come down and prove that he actually needs it before they will authorize it." He says, "Well I am in a wheelchair and have a fused arm and you have that on file in my chart right?" "Right, Mr Allen but we still need to see you to make sure you actually need it." Chaz then says "Well, then I am confused, you have the documented proof of my injuries that I need it, and someone from the VA saw me Saturday, but you still need to see me?" She went on to tell him that if he wanted it he had to come there for it and that she wouldn't authorize it until she sees him. He said, "Well considering the grabber costs like $10 I'll just save my time and gas money and go get one at Walmart or something." He told her to have a good day and hung up.

Then came the rant, turns out this is the lady he has had to deal with a few times. I am sitting here thinking, whoa, how have I not met her? Anywho she has a history of being non-productive with Chaz. Which you of course know that means others have experienced the same.

So where do I start with this overload of ignorance coming at me from the lazy train? First this is a prime example of bureaucracy at it's finest. One VA employee puts eyes on a veteran and requests a $10 piece of equipment, but because it falls under the scope of OT, the OT people have to draw their territorial line and insist they see him too.

Here's a fine example of a VA pissing contest. It's like I can hear this lady's thoughts...well I'll be the judge of if he needs a grabber or not. Some nurse from another department isn't going to tell me what OT needs to do.

My next issue is that the VA Caregiver Program has spent more time with Chaz since January 2013 then VA-OT has. I feel that the Caregiver Program knows Chaz's needs way better than VA-OT in this situation. And for something this simple, OT does not needs eyes on him, if another VA professional has seen him.

Then you must consider that lady who saw us Saturday is a medical professional, but the lady authorizing the equipment is not, she's an administrative professional. Follow this...a medical professional puts in an order and then an admin professional questions it and wants to require the veteran to see another professional.

And my biggest problem is the lady from admin requiring Chaz to come in, just tried to take away an appointment from another veteran who actually needs to see OT for actual OT. This is the part that ticks me off the most. Chaz does not need OT to verify he needs a grabber. A nurse did, this should be the end of the story. But no, let's block out time that another veteran needs in OT so they can see Chaz's disability.....again. And wait for it.....they are all still looking at the same file!!

No matter how you look at it, it's just a big circle of are you freaking kidding me? Here's what made us laugh, in a not-so-happy way. We realized we have to go through hoops for a $10 grabber to help with Chaz's independence, but if we asked for narcotics we'd have them the next day. Roll that one around in your mind for a little bit.