Existential Angst.

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Deborah Young

Deborah Young
Location
Honolulu, Hawaii, U.S.A.
Birthday
July 30
Title
C.E.O.
Company
Existential Angst, L.L.C.
Bio
I'm a political analyst and cultural voyeur & usually write about when those two things merge. I'm an amateur mother, a professional reader and excel in generalized anxiety, although sadly there is very little reimbursement for that particular skill. And of course, I love books & dogs.

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OCTOBER 15, 2009 12:19PM

The Caregivers Lament

Rate: 24 Flag

I know. When you're sick it's all about you, you, you. I get that. When I'm sick it's all about me [unless my child or spouse is sick at the same time, then suddenly it's not about me.]

How do I cross this great divide? How do I maneuver over this rope bridge from normal everyday living that in itself is fraught with pain, fear and despair and leap to the other side where chronic illness keeps us wrapped around its' little finger smirking at our bewilderment, smug at our fatigue.

When you are in pain, I am in pain. It's that simple.

While you are in pain, I must deal with everything else. That everything includes pharmacies and doctors, prescriptions and shopping, appointments and bills, finances and follow up. There is just work and work and more work and it's never-ending and I don't know how everyone else has managed to do this for their loved ones.

There must be a book out there I can read that will help me organize and delegate and surrender and refuse to do.

The very wealthy hire nurses and financial advisors, lawyers and private chefs. They suffer emotional pain but their physical surrounding are cared for.

The very poor rely on medicaid and medicare and social security; they rely on their church, their family, their neighbors.

caregiver photo

I juggle somewhere in between these two extremes. I must work AND take care of everything else. But the fact is, there is not enough time to do it all. Some things will have to give. And we need to let them go.

Let go of the immaculate house. Not going to happen. Let go of the perfect manners. Not going to happen. In fact, I will swear like a sailor often - build that into the equation. Let go of pride, be humble, ask for help. We cannot do it all.

Do not expect me to be happy happy happy! Do not expect me to be calm always or often. Do not expect me to look radiant and beam like the sun. I'm not a nurse, I'm not an accountant and I'm not a saint. Stop expecting those roles from me. I'm trying just to keep us afloat on this island for awhile, to keep us out of emergency rooms, out of foreclosure, out of bankruptcy [not that bad yet.] Sometimes trying has got to be enough.

Sanity is so underappreciated when we have it in spades and so missed when we start to lose it. I'm attempting to keep most of mine. Don't distract me.

When you're in pain, I'm in pain. I have sickening headaches, waves of nausea, my neck is trashed, my back hurts. Our biography becomes our biology. The body absorbs and processes each day and lets you know loud and clear when it's all too much.

It's not just all about you, you, you or all about me. It's all about US. There is no "norm" in the household when one of us is sick.

I need a wife. I need a hand to hold. I need a caregiver too.

I need grace.

And small mercies.

 

 

 

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Comments

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Oh Deb . . . .I wish I could just hug you right now! You need it.

There is so much truth here, good for you for getting it out.

Rated and Hugs
Yes, Deb, those of us who are caregivers can only say, "amen."
Tha pretty much sums up how I feel about it, but it's the powerlessness to do anything about a sick person's pain that stymies me.
R
Deb, I feel for you I really do! You and your family are in my prayers!
Wishing you grace, small mercies, large mercies, and some actual assistance. Also, some actual rest and relief, perhaps a really good massage.
Been there. It's nearly the worst that can happen. You're fighting to hold back the very worst. Hugs and understanding.
It's easy to see how hard it is for the patient. Caregivers are expected to eat a lot of pain. Grace, mercy, love. Some of those positive vibrations are from me.
I'm with you all the way since we walk similar paths. I feel like I can make it when make time to do something for me but making that time sometimes is so complicated and so much effort that I just let it go... I send you a moment of peace to use when you can. This is tough.
I hope I have someone in my life like you Deborah. You are a powerful and compassionate caregiver.
Deb, lots of hugs and prayers. Your ordeals and the challenges all caregivers face is why my blog Mary Wollstone is dedicated to changing the US to be a family friendly society where we are not torn between our loved ones and our work.
oh that picture! Wishing you some relief, more grace than you already possess (considerable, I think) and some answers...
I wish you everything you need and more! This was powerful.
It is very, very hard. I'm so sorry. Wish I had an idea....
Dear Deborah,

My thoughts and prayers to you and yours.

Rated
Outstanding entry. As a person with a chronic health condition, I understand every word you've written here.

My thoughts and prayers are with you. Highest rating.
I'm sorry I wish there was something I could do or offer but a good big bear hug has been virtually sent to you. Talking it out here helps more than anything, keep talking!
Oh, I so get this. I am nine years in as a caregiver. It remains hard, but it tends to go in and out of crisis stage; I hope that's what happens for you. A balance can be found somehow...in time.

I deeply understand how illness can, as much as it ties you to your spouse, separate you both as well. Because no matter how much you empathize and feel the pain, too - you aren't sick. You aren't. That becomes the big difference.

But, because you aren't sick, you are the giver, the keeper, the protector, the defender, the advocate, and still, the spouse. There's a blessing there (except those times when it's hidden).

I wish for you exactly what you asked for - a wife, a hand to hold, a caregiver, grace, and many many small mercies.

All the best to you, Deborah. All the best.
Stay strong and keep the faith. You are strong, my wife has struggled bravely in the same fight for nine years and I can not begin to understand how you or she does this. You are an Angel. Never forget that.

As I told my wife if I must die, and surely I must, at least I'm in Hawaii.


"Endeavor to Persevere"-Winston Churchill
Our mother was dying of recurring strokes over a period of 10 months. My sister is a nurse who had her leg amputated when she was 28. When I was beside myself trying to ease my mother's suffering, my sister said that pain is the hardest for those watching. She said she knew this from when she got the bone cancer and the amputation and recovery. She said Mom was completely occupied with putting all her energy into coping with her physical and mental debilitation.
I hope you keep writing. A massage? Sometimes laying on of hands helps a lot.
your post made me want to hug my husband who has had to be a care-giver for me in the past...
Oh my...no wonder we have the same goal of sleeping for a year. We practically have the same life. Beautiful post that really hits home. (We kept our house, but hit the bk though -- dam that sucked...)

"Our biography becomes our biology. The body absorbs and processes each day and lets you know loud and clear when it's all too much. " I love this! I have to copy it and put in on my I Phone and look at it often! I so get what you mean when you say - I need a wife! In fact I'm bookmarking the whole post on my I Phone. Never have I felt someone describe this and get it like this!! I am awestruck!!

Thank you for your wonderful words all strung together like this!!!
Dearest Valiant Deb -

Nothing to add to what's been said except to echo it all. You are _so_ valiant and honest and caring. And there are so many of us wishing we could somehow ?"help"? more than we can see how we can.

love.

podunkmarte
Thinking of you.
Wishing you the best, Deborah. Rated.
oh sister.....i'm right there with you!!!!!!
LOVE LIGHT LAUGHTER JOY PEACE