Wednesday, May 1, 2013

The Reluctant Caregiver NYT


A recent piece in the New York Times with this title came to my attention.  Yes, sometimes it sucks.  But there are different types of reluctance for different reasons.

Most of us didn’t plan on being caregivers of children with special needs who may need lifelong care.  Though there are a few, such as Family Voices Pennsylvania Coordinator Sue Badeau, who astonishingly adopted up to 20 children with special needs over her lifetime.  And now there are even special needs adoption groups such as CHASK (Christian Homes and Special Kids) etc.  But most of us didn’t plan this.

Sometimes I’m a reluctant caregiver because I just want to be her mom.  I get tired of being a teacher, behaviorist, physical therapist, case manager, nurse, etc.  I just want to enjoy my time with her.

Sometimes it’s because I’m just tapped out with round the clock care.

Or I don’t want to go to the hospital out of state, and live apart from my husband (who goes to work during the week) for who knows how long, again.

Or physically, emotionally, mentally weary of the constant changes, lifting, medications, paperwork, insurance denials, treatments and deciding if it’s safe to maintain her at home or do we need to go to the E.R., and what if I guess wrong?  I’ve literally gotten her to the hospital with no other signs than “something is wrong” within hours of a major hemorrhage that put her in ICU for 4 months.

Life isn’t even what passes for normal around here anymore.

But then I think what it must be like for her.  A recent article indicated that children can actually suffer PTSD (Post Traumatic Stress Syndrome) post hospitalization.  Another showed that 1 in 3 (even adults) suffer PTSD after being on a ventilator, like she was.

I noticed a difference when she came home.  She didn’t feel safe even though we have a baby monitor on.  We had to get bedrails and we have a whole bedtime relaxation routine now.  We do massage, Reiki, Qigong, and read poetry.  She has both soothing music and a sound machine of falling rain on all night.  She does word search puzzles for hours until she falls asleep.  And she sleeps with the light on.

What must it be like to have to depend on someone to hear you even if you just need a glass of water?  What if you can’t get to the bathroom and need help?  Or are hooked up to things like IVs, Foleys, PICC lines/Broviacs, IJ’s/Medcomps and can’t move?  Forget the scary and painful stuff that goes along with illness.  And not know what to expect or when (4 a.m. labs anyone?)

Just think what it must feel like to depend on other people for things you used to do for yourself.

When your child acts out, just remember the most likely they can’t help it.  My child’s behavior is the worst when she’s in pain, on TPN (total parenteral nutrition through her veins) and can’t eat for 5 months, or frightened etc.  Their behavior is how they’re communicating.  They feel like they have no control over anything in their world.

And maybe that will help you not be “The Reluctant Caregiver.”


Remain hopeful,
Lauren


Resources:

“The Reluctant Caregiver” NYT

PTSD in Children with Complex Medical Needs-Complex Child magazine

Ventilated Patients and PTSD-Medical News Today

10 comments:

  1. This was a great post Christina and Lauren
    Thanks for linking up to all the great sites as well
    The New Old section of New York times was esp revealing

    ReplyDelete
  2. I recently came across your blog and have been reading along.I'm impressed. You're truly well informed and very intelligent. You wrote something that people could understand and made the subject intriguing for everyone. I'm saving this for future use. Home Care Atlanta

    ReplyDelete
  3. I thought this repeatedly and that i understand for a undeniable fact that this has got to do with a complication to the appliance such a mate with the file and therefore the content. the reality is that the web Explorer is simply not a user friendly browser for any. click here http://www.shushescort.co.uk/location/manchester-escort.html

    ReplyDelete
  4. dealing with elderly parents - Spouse Caregiver, Senior Helpers and Senior Caregiving, then your search ends with CaregiverSurvivalNetwork.com.

    ReplyDelete
  5. This comment has been removed by the author.

    ReplyDelete
  6. I'm affected. you are really well up on and extremely sensible. You wrote one thing that folks may comprehend and created the topic fascinating for everyone. i am saving this for future use. click here

    http://www.skyescorts.co.uk/manchester-escorts

    Manchester Escort Agency

    ReplyDelete