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Thread: For all Caregivers to read (a wife's perspective)

  1. #1
    Junior Member
    Join Date
    Mar 2007
    Location
    northern virginia
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    6

    For all Caregivers to read (a wife's perspective)

    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...i-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.
    Check out the blog my husband and I write about life, love, faith, marriage and disability: www.lovelikethislife.com

  2. #2
    yet you are still beautiful women,
    not much time to pamper yourself infront of the mirror or at the spa
    diamonds uncut but still diamonds
    don't know if i should salute or adore people like you
    may the real God bless you Dana.
    Last edited by peterf; 08-17-2012 at 09:41 AM.

  3. #3
    Lovely! I've been a wife/caregiver for 32 years. My husbands injury is at the same level. It IS and adventure!

  4. #4

    Red face

    Hello, Potluck,
    That made me cry. My husband's a c3-c4. Only the wife of a quad would understand.
    Debbie

  5. #5
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    I'm the wife of someone with Multiple Sclerosis which basically is a tetrapalegic and I cried, smile and cried somemore. This is beautiful and peterf, thank you for the addition.

  6. #6

    beautiful..

    I am the one with MS, and where I know my partner is supportive... he's not anything like you. I give you so much kudos and I salute you! It's not easy being a caregiver or caregivee... I'm sure your other half thanks you - and I do too for him. Its really nice to know that there are caregivers like you. Blessings to you both...

  7. #7
    Senior Member
    Join Date
    Nov 2003
    Location
    kenmore wa
    Posts
    222
    Nicely said and so true. We've been married 36 years. I love to hear his heart beat:-) His break is c5-6. Can't say what I do so I say I do "nothing".
    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

  8. #8
    [QUOTE=marie2;1578354 Can't say what I do so I say I do "nothing".[/QUOTE]

    Just recently, I was at my ophthalmologist's office and they were updating their records. The medical tech asked do you work, unemployed, retired? How DO you answer that. Yes, I work, that is for sure, no one hired me or pays me to do this job, and retired...really?

    NL (GJ's wife-43 years and caregiver-30 years).

  9. #9
    I loved this, Dana. Finally someone who understands my daily life! It is our "normal" but others around me don't see it as very normal. I had to laugh about bending the silverware when we eat out. I've done it so many times that I don't even try to be sneaky about it any more. And yes, my purse always weighs a ton with all the things that he and the service dog need. I have been married to Mark for 26 years. Although many times are challenging, I wouldn't want to spend my life with anyone else. Thanks for sharing this. It made my day!

  10. #10
    Senior Member
    Join Date
    Nov 2003
    Location
    kenmore wa
    Posts
    222
    gjnl---it's weird but it seems wrong to say caregiver
    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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