Thursday, January 27, 2011

Day 972 - Jan 26, 2011

Tonight I went to a support group of sorts. They meet once a month and there are both survivors of brain injury and loved ones/caregivers that go. Although I may or may not be hiding it from you guys - I am severely depressed. I think in part it's because I am just flat out exhausted. Only having help 15 hours a week is killing me both emotionally and physically. Kevin is just so much work.

I also seem to be crying at the drop of a hat lately too - mostly because we are nearing the third anniversary and moving into our fourth year and I just don't see any light at the end of the tunnel. There is no end to the round of therapies, procedures, doctor's visits, phone calls and battles anywhere on the horizon.

I wonder sometimes if I really have the strength to keep going.

Yesterday when Kevin was under anesthesia, I couldn't help but look at him and think of how tired I am of seeing my son hooked up to monitors, lying in a hospital bed, going through this procedure or having that surgery or going through any one of the million things that have happened to us since May 31 of 2008.

Will this ever end? EVER?

Because frankly - this life really sucks. For both Kevin and I. And Breezy too.

We are all still suffering so much. None of us have really dealt with what has happened to us - there hasn't been time to. We just keep 'wiping the sweat and driving on', but really - at some point shouldn't we be able to just sit down and rest? 'Cause I'm tired. And I know Kevin is too.

I really do try to come on here and be all positive all the time, but in reality - life isn't rosy. Kevin's life is really hard. And so is mine.

An example? I don't think I mentioned that Kevin had to quit walking around the neighborhood - something he was enjoying so much. His right knee is hyper-extending with each step he takes (meaning it's going too far back and pushing his muscle, tendons, etc. backward). He has been in so much pain and is back to using his wheelchair quite often now. He has always walked slow too, but now? Goodness, it hurts him so much he moves at a snail's pace.

Tonight he decided to try to walk to the mailbox though. I was shocked because he hasn't walked in weeks, but I told him to give it a shot. He did make it, but he called me on the way back and I had to run and get him. It's only two blocks away.

This breaks my heart.

It broke last night too when I was cooking dinner and Kevin grabbed his skateboard and decided to try to get on it in the living room. Obviously he fell and I had to turn the stove off and help him. He was so upset. He wants to skate so bad, but he just can't.

And it's just so sad to me that other than Ronnie, nobody calls him. He calls his old friends sometimes and they always have to hang up and they say they'll call him back, but they don't. Every time we go to the movies I tell him to turn his phone off and he always grunts and says 'WHY? Nobody calls'. He's right. Nobody does.

It's just all so heartbreaking to see him go through all of these hurts. And it's taking its toll on me. All of it is taking a toll on me.

I don't think I mentioned this, but when I went to the doctor a few weeks ago, he told me that if I didn't change my lifestyle I would be dead by the time I'm 50. So tell me, folks - how in the hell do I change it? What magic wand can I wave to make my son all better? Who can twinkle their nose and give us our lives back? Or better yet - where is the magic time machine that can take us back to the day before Kevin signed those papers to join the Army?

16 comments:

Flee said...

I wish I could wrap my arms around you and hug all the pain away! I'm keeping you all in my prayers.

Lori said...

Leslie, I wish I had some magic words to say that time will make things better, but I know you are right.
Does your local VA have an Adult Day Health Care that you could take Kevin to a few times a week? Our VA has one and they seem to have a good time there. They play Wii, make wood and other crafts, and they are always having activities.
Would you consider putting him in the VA for a week for respite care so you can just relax. I know that may be hard for you to leave him, but you would need to make him understand that you are going away for a week, and he has to stay there.
Maybe these are things you have thought of and for some reason they can't be done, but I am just trying to think of options that will give you a break.
I'm glad you are going to a support group - it does help to talk with other people in your situation, because even though we love and care about you - none of us can even begin to imagine what your life is like day after day.
Keep up the good work - know that God will reward you some day for taking such wonderful care of your and His son.

Anonymous said...

Hugs to you Leslie! I agree you both have been through so much. Lori mentioned an adult care place. Would it be something that you might be interested in? Even if it were for an afternoon. Kevin would probably like some distraction to his medical life and might enjoy going every once in a while. Do they have something like that where you are? Maybe just for a short time to see if he is interested in it first. That way you are both getting a much needed break. You know what's best, but it sounds like a great idea for the time being.
Do any of the college kids have programs where they volunteer there? Maybe you've already looked into that.
Everyone needs a break from each other. Even if it wasn't for caregiving. I think both of you would benefit from a short time apart.
I hope today is a better one.
Take care,
Kathy in IA

Anonymous said...

Hugs and prayers...
A.

Anonymous said...

Leslie,

There are so many people reading your words, please don't hesitate to ask for help. If you can think of anything that any of your reads out there can do, please ask. I would love to help in any way I can, but not sure how.

Hugs and prayers,
Amy in Houston

Anonymous said...

Leslie,
With much sorrow and regret, life will never be the same. Truly, there is a peace that does come in having a deep, abiding faith. No, it doesn't wipe the slate clean, or turn back the hands of time or even promise nothing bad will ever happen again. But it fills the empty vacuum of "what if's" with a peace that truly passes all understanding. Have you considered speaking with or connecting Kevin with any of the Chaplains at BAMC? Also, I know you aren't a dog lover, but they aren't called man's best friend for nothing. I'm guessing it sounds like just another chore to you, but, I think, with careful selection, the right dog would be a huge comfort to Kevin, and maybe even become a comfort to you as well. Just some thoughts for consideration.
My thoughts and prayers are with you my friend.
Janet

Cathy M said...

Oh, I agree with everyone here. I am heartbroken for both of you.

I agree...I would LOVE(!)you to find an adult day care for Kevin.

I would LOVE for you to try and find some kind of faith in a higher power, but I understand that this is very personal.

And...yes, I know you dislike dogs, but I would LOVE for you to at least reconsider your vow to never get a dog. A sweet, older, dog would be so wonderful for Kevin.

You and all of us know that there has to be some relief for you and Kevin as well.

Thank you for sharing with us. I wish I was there in Florida and could give you and big hug.

Cathy M

Lucy Jane said...

Dealing with depression myself for many years, I know that it takes a great deal out of you just to get through a normal day taking care of yourself. For you, taking care of all of Kevin's needs must seem overwhelming. It breaks my heart as well, that none of his old friends call him back. Unfortunately, not everyone can deal with the changes in Kevin's life the way that you and Breezy have. You did it because you love him and there was no other option. I don't have any words of wisdom, although I do agree with what everyone else has said...I pray that you will get some time away to renew yourself so you can enjoy that new grandson of yours. {{Hugs}}

Pattie said...

I'm glad to see you "saying this out loud." Also glad to see that you've gone to a support group. They may have really valuable suggestions for you with regard to time away from Kevin.

I agree with so many of the suggestions here - especially the pet idea. Dogs return so much love, and I remember the photos of Kevin with his cat - you could see how much he loved it. I've been disabled since '96 and have both, cat & dog. Both are rescue animals and I swear they seem to know they were rescued. And they seem to know when my pain is at its worst. They come to me and lie next to me as I wait for it to be better. Some dogs are trained to paper, especially the smaller breeds, and Kevin could "walk" the dog while riding his recumbent bicycle or wheel chair when he can't actually walk. Dogs give unconditional love, something Kevin can return and benefit from. If you think about adopting a dog interview it as you would a caregiver, and remember that good manners are a must! The last thing you need is a spoiled dog that's been cast off because it's owners didn't take the time to train it properly.

I'm depressed too. Constant body pain and migraines that make me rock and wail. Zoloft helps me deal with the fact that there IS no light at the end of the tunnel for me. I had to accept that and have since learned to "live in the intervals." It took a little experimentation to find something that worked without side effects, but so worth doing! Recently we've found an off label use for diabetic neuropathy, a drug called Lyrica, that helps me sleep at night. Medicine is constantly evolving, making Kevin's outlook brighter than it would have been in any other war.

You're a proactive person and I hope you'll use that to get yourself the help you need. It strikes me that your caregiver role is similar to what many senior citizens face with their mates. It's now understood how vital it is for caregivers to find respite somehow. Is it too much to hope the BAMC realizes this with reference to Wounded Warrior caregivers? I don't know the answer but there's clearly a need. Surely somebody there has recognized this -- like Lori's VA.
I've often wondered, as I'm sure you have, what Kevin thinks about that he can't express. Pretty sure he's depressed too. How can he not be? Is the VA addressing that?

Please know that your readers understand when you need time off from the blog. Those of us who came to know you here, your friends, and your family want only the best for you and Kevin. It's time now to devote a little time to seeing after yourself.
Sending love, hugs and positive thoughts flying thru the ethers to you,
~P~

Anonymous said...

Leslie, I so much agree with all who have posted. To tell you that you are not alone may not make you feel any better but many of us face the same as you do. You were forced into it unfortumately. I never thought I would be 50 and tell you that my husband doesn't have a job, has cancer, and probably will never be the same again. It's reality and many times when I'm up in the middle of the night, or driving to work at 4am for the long day of responsibilities, or standing in the shower with myself - who has put everyone before me to the point of weight gain, muscle aches, palpatations, etc- I look in the mirror and think, "This is not me." With the economy, the healthcare situation, and just the cruelity of the world, I'm not sure anyone can make it better. Reaching for your bootstaps works for a minute but then the exhaustion, the aches and pain, the heartache sets in.
I really do not have an answer for you. The VA is a brutual system and getting through it will make you crazy. Remember there ARE good people in the system. Also, remember to use ALL your resources. Kevin's life will NEVER be the same. YOU can help make it as good as it can get but YOU have to ACCEPT that no matter what you do, you will never get the pre-accident Kevin back. Reality. You have given, given, given. You have been rewarded by his progress.Time maybe to step back and allow others to take some of the responsibility, particularly the system that placed him in harms way.
Please take care of yourself. Kevin, Breezy, Christian will be lost without you.
Thoughts and prayers from a very cold Western PA,
Hallie

Anonymous said...

DRIVE ON HERD LADY!

Long-time RN said...

((Hugs))

Would your case worker have some info on routine respite care?

Hope the support group helps and you'll soon find ways to get restorative time for you. Wish I lived close by, I'd be honored to assist in giving you some break time.

Andrea said...

I have been reading your blog for about a year now,and since day one have been amazed at your strength. At a time when you both were starting out at a new phase in life...you as an empty nester, and Kevin as an independent adult...your world was turned upside down. As a mom I know how much you hurt for your son, his situation...both physically and emotionally. I pray that you find some time for yourself, and that Kevin can some how some way regain some of his independence.

Anonymous said...

Hugs........

From The Heart Photography - Willow Grove, PA said...

I just got your address through soldiers angels, I will be writing! I wish I could wrap my arms around your family and take all your pain away. We are also a military family. Please know I will be praying for you all! I admire what you are doing as a mom, too. I don't think there are appropriate words to take away the pain, but please know I will try to be a support as much as I can. If we lived closer, I'd ask to come help! hugs!

GrannieEv said...

Your life sucks! Your's, Kevin's and Breezy's. That's the plain truth. It breaks my heart that anyone has to go through this.

Everyone talks about a dog for Kevin for companionship - I've often thought of a service dog. In Kevin's case, a mobility dog would be a god-send, for you and him, both. There is a group in Ohio who are training and providing these service dogs free to our vets. Let me know if you're ever interested. This group is amazing.

I can't think of anything else to say.