Caregiver fatigue
I remember The first time I heard that term…
I was so relieved. I thought I was crazy. As a mom of a special needs child I knew that my role ~my job ~ my calling was going to be taxing but I didn’t realize it was an actual “thing”
I never knew of “caregiver fatigue”
“The human spirit can endure a sick body, but who can bear a crushed spirit?”
Proverbs 18:14 NLT
“The spirit of a man will sustain him in sickness, But who can bear a broken spirit?”
Proverbs 18:14 NKJV
As moms, dads (or aunties/uncles, grandmas/grandpas) we all know what it’s like to feel exhausted…
You make the meals and you clean up from the meals then you make the snacks then you pack the snacks …then you go on a Costco run…. then you help the children brush their teeth you read them their nighttime devotion …you cook dinner then you clean up from dinner …then you meal prep for the next week…. you washed the laundry…. you pack lunches….
Then you do it all over again and again for years…
You talk to children on your laps you play with them you push them on the swing your walk around with them in strollers …you pack your trunk with goodies for the children and extra water bottles to keep them hydrated… you kiss boo-boos when children fall down…. You listen and dry their tears when they’re hurt by a friend…
But for a special needs parent that child never goes away from your lap…
For us (and for our family) that toddler stays a toddler in his mind even though he’s a young man….
There’s a song by The Smiths that I love very much…
….When you laugh about people who feel so very lonely
Their only desire is to die
Well, I'm afraid
It doesn't make me smile
I wish I could laugh
… But that joke isn't funny anymore
It's too close to home
And it's too near the bone
It's too close to home
And it's too near the bone
More than you'll ever know ...
I've seen this happen in other people's
Lives
Oh ...
And now it's happening in mine
Happening in mine
Happening in mine
Happening in mine
Happening in mine
I’ve shared this story before but I think it is worth repeating…
Years ago I wanted to run a quick errand and go to stater brothers with Isaac. He was already becoming quite a challenge and he would run away from me I was afraid for his safety because he didn’t understand and he would run outside where the cars are. I decided to do the errand anyway (me and Isaac all by ourselves) I went to the grocery store and sure enough Isaac’s running away from me I keep rallying him back to me so that he would not leave or runaway where I couldn’t find him…
The clerk asks me “how old is your son… he is so handsome.” We engage in small talk and I tell her that he’s autistic she says “oh I know! my nephew has autism it’s only gonna get harder”
I was so upset but I told her “oh no ma’am you don’t understand! we have Jesus, look at him !! he doesn’t have cancer he doesn’t have tubes all over of his body… he can walk and run and smile and laugh he is going to be fine, we have Jesus”
I walked out of the store full of joy because I know that I told her the Truth.
But the irony is she told me something that was “half true.”
It was going to get harder and it it has gotten harder… I can picture her face and hear her words echoing in my ears all the time…
I hear Morrissey’s voice in my head again
I've seen this happen in other people's
Lives
And now it's happening in mine
I remember when Isaac was young and I used to think “how is he ever going to shave his face?”
Will he ever learn how to do it? Will Chuck do it for him ?
Will I do it for him?
He wouldn’t let me put a Band-Aid on him put medicine on a cut…
I still brush his teeth he doesn’t know how to wipe his own bottom thoroughly (and he still doesn’t know how to do that)
Last night Isaac was in the bath and I shaved his face and his chin and under his neck…
He let me do it and it’s actually quite calming…
But it’s very surreal…
My little boy is not a little boy. My young man is not a young man. He’s Isaac.
He’s a sweet boy with disabilities that’s trapped in a maturing adolescent body…
It’s very weird, it’s very sobering and heart wrenching and I cry a lot…
I wish I could laugh
… But that joke isn't funny anymore
Last night I was talking to Lord about it and praying and crying…
I said “Lord I’ve always loved my role as mother and I’ve always love the idea of becoming a friend to my adult child too but this role of caregiver is punching me in the gut”
Please be clear. It’s not the tasks. It’s not even his disability. It’s his reaction to me.
Because he’s experiencing puberty everything that I do “annoys” him and he lashes out at me and it gets me very sad inside…
Once again- caregiver fatigue…
The person you are caring for gets fatigued too. They get fatigued by YOU doing all of their care and they can’t do it on their own ….they want independence and autonomy but they can’t have it…
It’s exhausting…
One definition of Caregiver fatigue reads- Caregiver fatigue or caregiver burnout – occurs when the caregiver feels physically, emotionally, and physically exhausted, often leading to a change in attitude. Negative feelings toward the job and the care recipient often accompany the mind state, sometimes causing feelings of resentment.
It’s very similar to the tension we experience with the LORD.
The Spirit & flesh -always at war within each other…
Anakin & Darth Vader
Romans 7:14-25
“We know that the law is spiritual; but I am unspiritual, sold as a slave to sin.
I do not understand what I do.
For what I want to do I do not do, but what I hate I do.
And if I do what I do not want to do, I agree that the law is good.
As it is, it is no longer I myself who do it, but it is sin living in me.
For I know that good itself does not dwell in me, that is, in my sinful nature.
For I have the desire to do what is good, but I cannot carry it out.
For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing.
Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.
So I find this law at work: Although I want to do good, evil is right there with me.
For in my inner being I delight in God’s law;
but I see another law at work in me, waging war against the law of my mind and making me a prisoner of the law of sin at work within me.
What a wretched man I am! Who will rescue me from this body that is subject to death?
Thanks be to God, who delivers me through Jesus Christ our Lord!
So then, I myself in my mind am a slave to God’s law, but in my sinful nature a slave to the law of sin.”
It has been said pain is God’s megaphone.
“We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world....No doubt pain as God's megaphone is a terrible instrument; it may lead to final and unrepented rebellion. But it gives the only opportunity the bad man can have for amendment. it removes the veil; it plants the flag of truth within the fortress of the rebel soul.”
C.S. Lewis, The Problem of Pain
Well if pain is God’s megaphone, perhaps fatigue is God’s post it note.
“Don’t cook dinner, we’re eating out tonight”
-Jesus
The LORD whispers
Matthew 11:28-30
“Come to Me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me; for I am gentle and humble in heart, and you will find rest for your souls”
Jeremiah 31:25 says
“I will refresh the weary and satisfy the faint.”
Sometimes I am so weary I don’t want to talk or even think about autism.
I just speak the Name of Jesus…
HE IS THE ANSWER to all types of fatigue.
Keep going saints.
We’re not home yet!
Yesterday I wore one of my favorite butterfly necklaces…
Two people in the community commented that they liked it.
I mentioned to one of the ladies at Isaac’s school
I said “butterflies remind me of Isaac. Once God whispered to me, Isaac is just not a butterfly yet.”
Lord thank you for the gift of life. Thank you Jesus for all the caterpillars you put in our lives that we are able to tend to and one day you will transform them into butterflies.
We are weary… we are burdened we are fatigued and truly that joke isn’t funny anymore….But God, we thank you Jesus that the war of flesh was conquered at Calvary‘s cross and one day we will be in a new sanctified body and the old will pass away and all things will be made new. In Jesus’ Name we pray AMEN
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