Thursday, May 30, 2013

So-Called Caregiver Support

We had a wonderful time camping a couple of weeks ago! It was so nice to get away, even though it wasn't far. We camped along the river, so it was nice and relaxing. My husband got to kick back and relax. He had one day that he couldn't get out of the camper at all because of his pain, but the other days he was either able to go for walks or at least able to just hang out outside the camper in a lawn chair. Then we get penalized for it....

The VA Caregiver Support program was designed to assist caregivers of wounded warriors with financial issues from having to quit work to stay home with the vet, classes to learn more on how to help your warrior, home aids such as shower chairs and raised toilet seats, respite for the caregiver, and social support. Unfortunately the program is failing miserably! Don't you want your vets to get better? Don't you want them to live as much of a "new normal" life as possible? The program has turned into a sad existence... a program apparently only for caregivers of warriors who are completely bedridden all day every day and have to be spoon fed 100% of the time.

When they found out that we spent some time at the river, they decided it must mean my husband all of a sudden got better, no longer needs my help, and lives life as normal. When they saw him out to eat on a good day, they decided it must mean he has no more problems. In fact, the caregiver support coordinator actually said to me, "Well if we see him out of the house that tells us he is better and no longer needs any help." Really???? How illogical and dumb can you be??? Come live with us for a couple of months. I guarantee you she couldn't handle it. She has no clue what it's like. Do we not want our warriors to get out and about when they are able so they don't get depressed to the point of being suicidal? We've been there, done that. Trust me... he MUST get out of the house when he can!! And as his wife and caregiver I will do everything in my power to make sure he gets to.

I wondered if I was the only one dealing with this, so I posted a question in an online forum for caregivers about the situation. Come to find out this is happening all over the country. A program that was originally created to help caregivers and their wounded warriors is actually just causing more stress than help in their lives. Only one location claims their program actually assists them, and that was only after their original coordinator was let go and another one was hired. I'm thinking it's time for a lot of CGC's to get replaced. It's sad when vets have to go outside of the VA to get the help they need.

Wednesday, May 15, 2013

Taking Advantage...

Of this BEAUTIFUL weather!!! We have been wanting to get away for a short camping trip for a couple of months now, but we haven't been able to when pretty weather arose. This week we did, and we are soaking up every second! I had to spend our entire first day finishing a paper I had due for school, but today has been nothing short of perfect. Tim has dealt with quite a bit of pain, but he has the will to push harder through it when we're doing something he enjoys. He had some bonding time with the baby yesterday since I had to work on my paper all day. Today we started off by heading down to the river early so he could relish in his newest hobby... Photography. We walked along the bank getting pictures for quite awhile. We came back and I cooked breakfast while he rested from the trek. We spent the rest of the day doing whatever came to mind that we wanted to do. When nothing came to mind we did just that... Nothing. It has been wonderful! After a walk with the stroller tonight we bathed the baby, got him to sleep, and enjoyed a nice campfire complete with s'mores. Perfect! I am so excited for tomorrow!

Saturday, May 4, 2013

Sometimes we all need a nudge...

Monday was our quarterly appointment for injections to help alleviate some of my husband's nerve pain. We love that doctor! He is more like a friend to us than anything. He sits there and listens. He truly seems to be interested in helping. As we talked to him he asked my husband how he had been feeling. He said about the same other than the increased pain he always gets this time of year from the weather. As he discussed some physical struggles he's had with weakening muscles, the doctor asked how his activity level was. My husband looked at me, which always means "You know better how active I am, so will you please answer?" I told the doctor the activity level had dropped drastically. He was spending about 5-6 days each week on the couch all day long. When I would try to get him to get up and around, he would tell me his pain was too bad. My husband then mentioned, "To be honest, I've probably just gotten lazy. I've gotten used to her taking care of things, so I just lay there rather than getting up and doing anything." I was shocked! I had been pretty certain his pain was truly keeping him down.

The next day was a pretty good day for him. However, the two days that followed were bad. He made it to the couch, but he could not move from the couch. His father called wanting him to go somewhere, and he just told him we had plans. He doesn't like to tell his parents about his struggles so they will not worry. On the second day of staying on the couch I thought back to what he told the doctor. So I asked him about whether he was just giving in to the pain and being lazy, or if it truly was so bad that he could not do anything. Although it upset him the rest of the night, he spent the entire night contemplating this question.

The next day, Friday, he was in obviously intense pain. I could tell it wasn't quite as bad as the days before, though. He took more pain meds than he normally takes (which turned out to be the actual prescribed amount) so he could be active. Although he had to work an hour, rest an hour, work an hour, rest an hour... he pushed through the entire day. We ended up setting up an entire garage sale that day... something we thought we were going to have to end up skipping. Today, with the help of his prescribed amount of meds, he pushed through the day again. We had a very successful garage sale!

This was a reminder to me of how easy it is to get complacent and, as the caregiver of a wounded warrior, how easy it is to allow your warrior to get complacent. We want to help them, and sometimes we end up doing so much for them in an attempt to ease their pain and burden that they rely on us for everything. They forget how to do things for themselves and how to push through the tough times. Yes, he was upset with me for an evening. But my husband knows how true my intent is, and how much I love him and want things to be good for him. Yes, there are struggles because of some of his difficulties, but we have a love and a marriage far greater than either of us ever imagined was possible. He knows my nudge is only an attempt to help him improve, and that little nudge was all it took to help him push hard through some tough pain days. At the end of these past two days he is proud of himself and all he accomplished. To me, helping my husband find that pride in himself again is one of the greatest successes I can experience.