For all SCI caregivers to read

For all SCI caregivers to read

Posted by Dana_2052246 on Aug 13, 2012 9:38 am

Hi everyone.
My name is Dana. My husband is a C5/6 quad.
We write a blog together called Love Like This Life all about our life, love, marriage and disability. (www.lovelikethislife.com)

I recently wrote something about our role as caregivers to people with SCI. I'd love it if you'd give it a read.  We are all in this together!

I've copied and pasted what I wrote below. The original link to that blog post is here: http://www.lovelikethislife.com/2012/07/this-is-dedicated-to-my-sci-sisters.html

We are the wives of quads.
We may have taken the biggest risk of our lives, much to the dismay or hesitance of our family and friends.
Or, we may have survived the scariest thing of our lives – almost losing the men we love, but getting them back this way.

We prop legs up on pillows, turn them, stretch them, and straighten them out in our sleep.
We may or may not also put our hot or cold feet on those hot or cold legs in order to warm up, or cool off.
We pull our husbands around on pads in the bed.
We snuggle up in their armpits and rest our heads on their chest.
We love to hear their hearts beating.
We may or may not put our husbands arms around ourselves, if we have to.
So we can be held.
Because the very beginning of the day, and the very end of the day, that’s the only chance we have to be really close.
Without any titanium or rubber or aluminum between us.
Without getting run over by little wheels or big wheels or power wheels.

We have toe calluses. And amazingly quick feet, like the feet of running backs when those wheels take a turn towards our toes.

We slip forks and spoons into straps so our husbands can feed themselves.
We feed them sometimes to be sweet, or to just hurry things along.
We may or may not occasionally bend up restaurant silverware.
Or, maybe we travel with our own bent-up silverware in our purses.

Our purses.
Oh, our purses.
Yes, they hold our keys, our wallets, and our iPhones.
But our purses are like a stash of secret weapons.

Mothers – sorry to tell you this, but your diaper bags – they have nothing on our purses.
We have straps and straws and pills and catheters.
And bottles of water and sanitary wipes and allen wrenches.
We have our husbands’ wallets, phones, and sunglasses.

We don’t always have to carry those purses, though.
We almost always have a handlebar to hang those on.

Or a lap to sit them on.
Oh, that lap.
That is our favorite place.
We have a built in seat when we are waiting in line at a restaurant or at a concert or waiting for the train.
Did you know that that lap is dancing headquarters?
No, not in that kind of lap-dance kind of way.
Well, maybe sometimes.
That’s the best place for a lot of things.

We don’t get to walk hand in hand with our husbands on the beach.
Or sit on their shoulders in the pool.
Some of us don’t even get to ride beside them in the car.

Sometimes we cry.
We are held.
Sometimes we hold our husbands while they cry.

Sometimes we laugh so hard our stomachs hurt.
Because if we didn’t, we’d just cry again.

We are weightlifters.
We lift grown men into beds and wheelchairs, onto chairs and couches , into and out of pools, and into cars and SUVs.
We lift them over curbs, push them up hills, brace them down hills, and we can even lift them on to those really tall examination tables at doctor’s offices.
Why are those so tall?
Geez!

We are masters at dressing.
Anyone can dress themselves.
They may or may not do that well, that’s on them.
But, we can dress a body that is not our own, that has almost no control of itself, and make it look good.
We put jeans and khakis and shorts on man, all while he is laying down. We push and pull that body side to side and tuck pockets in and make sure leg bags are straight (and closed!) and button buttons and snap snaps, and buckle belts and tuck things in and pull them out just enough so that it’s comfortable and doesn’t cause a pressure sore.
We do this with impeccable strength and grace day in and day out and we nail it.
It is a science.
It is not easy.
Because if you screw up, your man can end up looking like a saggy bag of potatoes in a cart.
But if you tug and push and pull, and align those jeans and that shirt just the right way, he is comfortable, and he looks good and he has that confidence that he looks good.
And we like that confidence.
So, no matter how tired we are, or how much our backs already hurt, we do this dressing dance every morning. Then, we make the bed and make breakfast. And probably lunch. And eventually, dinner.

We can clean up any type of bodily produce imaginable.
Without breathing.
We do more laundry than anyone else you know.

We multitask.

We are landscapers, maids, and mechanics.
We are drivers and nurses and wheelchair repairmen.

In fact, we can drive, talk on the phone, eat fast food and feed french fries to our passengers, simultaneously. That “mom hand” that goes out when you’re braking hard, so that your passenger doesn’t end up on the dash board? We have that. We use it all the time. Even when we’re told we don’t need to.

We have strange encounters with strangers.
We’re either stared at or ignored, or looked like someone is saying with their eyes, “bless her heart.”
We roll our eyes. We smile with forgiveness.

Because we are taken care of too.
We are deeply loved.
We get massages with pointy elbows and soft, warm hands.
We get the BEST kissers in the world.
We are appreciated.
We are honored.

We are a part of a team.
We are bonded to our husbands in such a deep, intimate way. 
And sometimes, despite the hard work and frustrations, we are thankful that we are forced to love this way, because we are also loved this way.
Just as fiercely.
Just as consistently.
Just as sacrificially.
We are.

RE: For all SCI caregivers to read

Posted by darrin on Aug 13, 2012 12:13 pm

Dana,  very well said!   written.   We are all in this together  thank you for sharing.   Darrin

RE: For all SCI caregivers to read

Posted by darrin on Aug 13, 2012 12:55 pm

Dana, I checked out your blog...it is absolutely awesome. You have inspired me to be a better husband /caregiver to my wife.  thank you  god bless you and your husband .       Darrin

RE: For all SCI caregivers to read

Posted by Selvina on Aug 13, 2012 3:02 pm

Hello, Dana. I loved your blog Love Like This Life. Thanks.

RE: For all SCI caregivers to read

Posted by Admin on Aug 14, 2012 6:50 pm

Dana,
I am also a C-5 – 7 quad, having spent almost 25 years in this chair. During that time I have met many dedicated wives with your attitude, but I had yet to see it so well expressed until I read this. Your husband is a lucky man, and I am sure he knows it. I'm sure you also know that it is not easy to allow our loved ones to do what you do so willingly, and that in some cases it becomes hard to express our gratitude completely on a daily basis. Hopefully I meet another single woman with your attitude during this time around, but in either case I know from your article that you do exist, unlike the mythical Sasquatch or alien beings that supposedly visit our planet periodically. Thanks again for sharing your thoughts so eloquently.
Mike

RE: For all SCI caregivers to read

Posted by frances on Aug 15, 2012 12:54 am

Dana,
My son is a C 2/3. Injured at 16, now 22.  He is a wonderful person. Your beautiful blog helped me understand and know that he will find his soul mate.

Your blog is also so "right on" -- particularly the purse!:)  

Thank you and bless you!
Best
fran

RE: For all SCI caregivers to read

Posted by carriep on Aug 16, 2012 11:52 pm

My husband is in a facility but I dream of the day I can bring him home and take on the many tasks. I don\'t take this responsibility lightly and I know it will be a challange but I will always keep your words in my head\' because we are loved!

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Aug 17, 2012 9:10 am

Hi Mike! Thanks for your nice note. I certainly hope you find a good woman and not a sasquatch or alien being! Haha!

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Aug 17, 2012 9:11 am

Frances, please be encouraged! I truely belive if your son is just himself, if he is willing to give in a relationship as much as he takes, and to love from his heart, he will receive love in return. Thanks for taking the time to comment.

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Aug 17, 2012 9:12 am

Hi Carrie, thanks for reading. I hope you can bring your husband home soon and make your way on this path together. It's not easy, but as long as you are a team, you can do this! We are indeed loved. :)

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Aug 17, 2012 9:14 am

Thanks Darrin. I saw you found us on Facebook. It will be fun to keep in touch! Cheers to you and your wife! 

RE: For all SCI caregivers to read

Posted by Selvina on Aug 17, 2012 10:37 am

Thanks, Dana. I wish the best for you and your family.

RE: For all SCI caregivers to read

Posted by Admin on Aug 17, 2012 2:40 pm

It's bound to happen eventually, if I persevere. While it would be nice to maximize our privacy as a couple, I'm capable of continuing to pay for my caregivers. That snuggling down together is another story, as that's sometimes the most overlooked yet most valuable part of any relationship...

RE: For all SCI caregivers to read

Posted by Kimberly1977 on Sep 7, 2012 8:14 am

Hi Dana,
My name is Kimberly, I do not have a husband that is paralyzed. But my 10 year old son is a parapalecic.
This past July was 4 years since his accident. His spinal cord was severed at his T-4 & fractured @ his T-5. I have two daughters beside my son. I left their father in Ohio after the accident, I couldn't deal with him not offering any help to me with our son. I know he was hurting on the inside, but he was not hurt on the outside. Our son is much larger than I am. 
I think you sound like a wonderful person, who is doing a great job at being a wife. I'm sure your husband loves you very much, actually it sounds like you both love each other & life.
I am just starting to get it together after four long years. I love all my children & would do anything for them. Sometimes I forget i'm mom & remain in caregiver mode. I was hoping you would have some encouraging words for me, since you are such a great writer. I do what it takes to keep my kids happy, but I'm an emotional wreck. I just hide it from them. I know our situations are different & I don't usually talk about my life. I keep to myself. If there is any advice or resources that you may know of I would greatly appreciate you passing the info on.

Thank you & Best Wished to You & Your Husband,
Kimberly

RE: For all SCI caregivers to read

Posted by Kerridev on Sep 11, 2012 2:21 pm

Kimberly, I'm so sorry about your son. My husband is also a paraplegic, like your son. I find this website to be very helpful if you have questions or support in anyway, much like this site. They have blogs/forums as well, they have a caregivers forum which you may find beneficial. It is

http://www.apparelyzed.com/

Good luck and keep up the great work!

Kerri

RE: For all SCI caregivers to read

Posted by sarah10 on Sep 15, 2012 1:13 pm

Dana,
I lost my late, wonderful, quad husband two years ago after 34 years of what you wrote in your blog.  Good luck.
Sarah

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Sep 24, 2012 8:28 am

Hi Kimberly,
Thank you so much for taking the time to comment. It sounds like you and your family have been through so much. My heart goes out to you! I can tell from this message that you love your children with all of your heart, and that you are a very strong and caring mother!! 

But - remember, in order to be strong and caring for all of your children - not just your son who was hurt physically, you have to take care of yourself.  I hope you have some good friends you can talk to, and spend time with - to share your burdens with. This is all just too much to take on alone! 

Please feel free to email me: danabrownritter@gmail.com

I know you say you keep to yourself. If there isn't anyone you can connect with to share out loud what you are going for, I definitely recommend writing about it. That has helped me, tremendously. And when I start feeling overwhelmed - I know I need some time alone with my thoughts - and an empty screen. I realize that is WAY harder as a mom than as a wife - to get time like that - but I really think you should make it a priority. 

Hugs to you!!!

RE: For all SCI caregivers to read

Posted by catherine_2139135 on Feb 26, 2013 7:43 pm

Hi Dana, i just joined this site. can we clone you? my son has a sci for 17 yrs now, he is very handsome and respectful to everyone, especially his nurses and aid that assist him. my wish is that perhaps one day he can meet someone as caring like you. it takes a special person to care for someone with "TLC and above all patience. "  you are doing a wonderful job.,   it's not hard when you love someone. this is what is called a labor of love.  thank you God Bless,

                                                                              Loving & caring  Mom  Cathy

RE: For all SCI caregivers to read

Posted by Jackeline on Mar 5, 2013 9:20 am

Hi my mother was in a facility, the day that we decided to bring her home was the day that She came back to life. Feeding tube out of her nose after one year of having her home we took a big risk but with love and faith everything is possible. Best wishes.

RE: For all SCI caregivers to read

Posted by Patty on Mar 6, 2013 5:58 pm

I'm very touched by your writing. I just wish I could feel that way.  My husband suffered a spinal cord injury this past December.He also is a C5/6 quad.  He has been in and out of hospitals and rehabs since with the many complications that can arise. My story is unique in the sense that we have been living apart for the past 3 years.  He had been living a very self destructive life using prescription drugs and i believe this is gods way of stopping him. I have been there daily doing all that I can, especially since he has absolutely no one else.When you live the life that he had there are no true friends and your family turn their backs on you.  When he is done with his acute rehab he is expecting to move back in with me.  I just can't forget what has transpired the last several years and welcome him in with open arms. So i am searching for a sub acute rehab for him to go.  I hate that I feel this way,but I had beg and pleaded with him for years to stop his self destructive behavior.
I just needed to vent. Thanks for listening.

RE: For all SCI caregivers to read

Posted by Terrie on Mar 6, 2013 11:22 pm

Dear Dana,
I, like Catherine, am the mother of a quad son.  He is 24 and 18mths out from his injury!  I cried as I read your beautiful words!!  I pray that my son will find a loving wife like you.  He is the youngest of 4 children - the rest are all married and have children.  The last two years, Christmas has been so hard for me.  I have watched my kids with their loving spouses and young children and couldn't help but wonder if my young son will ever have that in his life!!  He is high functioning, takes care of all his personal needs - including bowel program (just started doing that), dresses himself, and is taking a driving eval next month.  He is determined to become independent!! I hope you and your husband continue to love each other deeply for many years to come!! God bless you both!

Terrie

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Mar 7, 2013 7:05 pm

Hi Cathy, I'm sure your son will find the right one for him! Just give it time, and take some chances. :) If I could clone myself, that would be awesome - I would be able to get a lot more done! 

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Mar 7, 2013 7:07 pm

Hi Patty,
I'm so sorry about your husband, it sounds like really challenging circumstances. I hope you guys find the solution that works for both of you. Dana

RE: For all SCI caregivers to read

Posted by Dana_2052246 on Mar 7, 2013 7:08 pm

Hi Terrie,  
Your son sounds like an amazing guy! Tell him to keep up the good, hard work and I really believe that there is someone for everyone. I encourage people to take chances. I never would have pictured myself with Michael, and I bet if you ask him, he'd probably say he never would have pictured himself with me! But, it's a perfect match. I'm jealous that your son will be driving! I would LOVE for M to get on that bandwagon.

RE: For all SCI caregivers to read

Posted by jeanne_2139313 on Mar 10, 2013 6:52 am

Please help me understand.  You son is a quad and is doing a driving evaluation.  Help me understand what can be done?  Thx,  Jeanne

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