People assume that because my family is happy and joyful, the difficulty and despair don't exist. It's almost like they don't see us crying and wailing, tearing our garments in mourning every day, that our lives aren't difficult.
Show any messy emotion and most people freeze, offer thoughts and prayers, then gently walk away. They mean well but don't know how exhausting it is day in and day out.
That's why I (and dare I assume most caregivers) respond, “We're fine” when asked how we’re doing. It's almost easier when we dismiss or minimize our emotions before others do.
People think caregiving is mostly about being patient and loving. And It is, but it’s also about constant management, decision making, and keeping track of things no one else sees. It’s not just helping my daughter. It’s thinking for her, planning ahead, and preventing problems every day. It wears on you.
The only constant is the constant! Then you have the anomaly that you make it look "so easy" that people think they can step in at any time to help.. "oh he/she will be fine, it's no problem at all...". LOL
I always think caregiving personfies the metaphor of a swan swimming serenely on the lake while underneath the legs are paddling furiously!
Yes, it sounds similar to the hypervigilance I had caring for Dad - and why I researched caregiving PTSD...Cortisol, inflammation etc. I still get 'activated' by large thumps, crashes
Well where do we start?! The little ole thing I’m truly battling at the moment is this.
The old adage you do better when you know better truly applies in the social care arena… but ONLY up to a point. Ah those early days when you were young(er) and naive and thought the right thing/services/finance or people would miraculously drop into your lap because well.. you need help right and your person needs help.. yah.. those days.😳
They don’t last long when you finally clue in. After a while you learn a particular set of skills and get to it.
You assess, procure, resist and persist until you get the goddamn thing.
but
somewhere in all that you get found out… in fact identified.
Identified as capable, practical, resourceful, able to string a sentence together, not on the verge of a nervous breakdown, DESPITE everything that has been thrown at you .. in short you are still trucking and therefore able to MANAGE.
So services and resources do not rush to your side because.. well you’re OK.
Ugh..
Wrong on so many levels and it’s exasperating that your ability to “do” and “get” comes back to bite you in the *** (proverbial)
So the ironic message is.. do better.. BUT only so far…and only so good... 🤔😡
Yes to all of this. I've had to point to our states website after a denial and say, “His diagnosis is on your website as a covered diagnosis.” People wonder why, as disability parents/caregivers become walking red flags. We have to rock the boat or no one will listen.
Yesterday one of Bray Bray’s Service Authorizations expired without warning, couldn’t get through to them, had to call the Spanish phone line just to get to a human. They then pointed the finger another agency. Had to call the other agency. Maybe this gets resolved by next week. Or I have to call them both again.
I had to tell this young man once, “Well, Tim, I'll talk to you tomorrow,” to which he responded, “Ma'am, I said it'll take a few weeks.” I simply said, “I heard you. I also heard your colleague say the same thing weeks ago. I'll talk to you tomorrow and the day after that. You'll hear from me every day until it's resolved. You need to make me go away, Tim.”
It went through in 2 days. Tim was apparently over me.
I'd say now that we are a year and a half post leukemia treatment for our son, that we should be "back to normal." It was a very long recovery and treatment phase. He had multiple complications. I feel like I am finally only now beginning to unfurl and process so much.
Totally this! The comedown is always a surprise when it eventually hits you.. that little chink of light when your mind finally lets go and the body suddenly says "hang on a minute what about me....?!"
First, so glad for your baby! Hugs to you! And gosh, yes. It feels like the worst kind of whiplash. I keep thinking...will this feeling ever lessen...trauma is so challenging.
What people get wrong the most about my role as a caregiver is that I somehow wanted this role to begin with. So many well-meaning people — and they do have good intentions — tell us how great we are for being so “on top of things” regarding Bray Bray’s care, his equipment, and his medications.
As I said in a raw conversation with fellow Parent Carer Denise Servais just this week when talking about people saying “How do you do all of it?”, I mean what choice do we have? Do they think I wanted to master how to use a CPAP Machine for Bray Bray’s sleep apnea, or learn all of the little tricks of getting his anti-seizure medication on time, or spend countless hours I don’t really have filling out paperwork so I can get him a fully motorized bed he needed that insurance refused to cover?
We have had to learn these things because we’ll do anything for Bray Bray, but don’t mistake “need” for “want” or “strength” for “obligation”.
Well said, Chris! I hear you! That's an article/poem that needs a deep dive!
There are so many essentials that need to get done to make things happen.
I struggle when well-meaning people try to equate caregiving with some sort of self-improvement challenge or performance event that I want to be graded on.
I'm not looking for a gold star - I'd like us to have a good day, full of love and some giggles.
Yes, exactly- I struggle when well-meaning people try to equate caregiving with some sort of self-improvement challenge or performance event that I want to be graded on.
That was a great conversation with Denise, Chris! Hearing you. When our son was going through his cancer treatments...we'd get the..."I can't even imagine...how are you doing this...how are you and your husband doing it all" I would just think I don't have a choice. I don't even know...? By the grace of God and our people helping us.
I hear you, Cooky. That's how it was when I was caring for my Dad - days and months. Continuing to stretch beyond what you think you can do without sleep!
“What do people get wrong about your caregiving as a parent?”
People assume that because my family is happy and joyful, the difficulty and despair don't exist. It's almost like they don't see us crying and wailing, tearing our garments in mourning every day, that our lives aren't difficult.
Show any messy emotion and most people freeze, offer thoughts and prayers, then gently walk away. They mean well but don't know how exhausting it is day in and day out.
That's why I (and dare I assume most caregivers) respond, “We're fine” when asked how we’re doing. It's almost easier when we dismiss or minimize our emotions before others do.
People think caregiving is mostly about being patient and loving. And It is, but it’s also about constant management, decision making, and keeping track of things no one else sees. It’s not just helping my daughter. It’s thinking for her, planning ahead, and preventing problems every day. It wears on you.
The only constant is the constant! Then you have the anomaly that you make it look "so easy" that people think they can step in at any time to help.. "oh he/she will be fine, it's no problem at all...". LOL
I always think caregiving personfies the metaphor of a swan swimming serenely on the lake while underneath the legs are paddling furiously!
I love that metaphor. That's exactly what it feels like.
Love that metaphor, so true!
The proactive scenario planning, thinking around things and for her, sounds like a constant hypervigilance, Denise - exhausting for sure!
Yes, exactly. Because of this constant hypervigilance, over time, your body just starts to live in that anxious state.
Yes, it sounds similar to the hypervigilance I had caring for Dad - and why I researched caregiving PTSD...Cortisol, inflammation etc. I still get 'activated' by large thumps, crashes
Makes a lot of sense.
Well where do we start?! The little ole thing I’m truly battling at the moment is this.
The old adage you do better when you know better truly applies in the social care arena… but ONLY up to a point. Ah those early days when you were young(er) and naive and thought the right thing/services/finance or people would miraculously drop into your lap because well.. you need help right and your person needs help.. yah.. those days.😳
They don’t last long when you finally clue in. After a while you learn a particular set of skills and get to it.
You assess, procure, resist and persist until you get the goddamn thing.
but
somewhere in all that you get found out… in fact identified.
Identified as capable, practical, resourceful, able to string a sentence together, not on the verge of a nervous breakdown, DESPITE everything that has been thrown at you .. in short you are still trucking and therefore able to MANAGE.
So services and resources do not rush to your side because.. well you’re OK.
Ugh..
Wrong on so many levels and it’s exasperating that your ability to “do” and “get” comes back to bite you in the *** (proverbial)
So the ironic message is.. do better.. BUT only so far…and only so good... 🤔😡
Yes to all of this. I've had to point to our states website after a denial and say, “His diagnosis is on your website as a covered diagnosis.” People wonder why, as disability parents/caregivers become walking red flags. We have to rock the boat or no one will listen.
Yes to the part about rocking the boat. I never thought of myself as an advocate, but that’s all I seem to do lately.
Yesterday one of Bray Bray’s Service Authorizations expired without warning, couldn’t get through to them, had to call the Spanish phone line just to get to a human. They then pointed the finger another agency. Had to call the other agency. Maybe this gets resolved by next week. Or I have to call them both again.
I had to tell this young man once, “Well, Tim, I'll talk to you tomorrow,” to which he responded, “Ma'am, I said it'll take a few weeks.” I simply said, “I heard you. I also heard your colleague say the same thing weeks ago. I'll talk to you tomorrow and the day after that. You'll hear from me every day until it's resolved. You need to make me go away, Tim.”
It went through in 2 days. Tim was apparently over me.
Ugh! I hope it gets resolved soon!
This is like the Theater of the Absurd. Really, can it get anymore ridiculous?
I get this! You get good at managing because you have to, and then that becomes the reason no one steps in. Being capable seems to work against you.
Tragically this is totally true. We didn't get offered the right support until it was almost over
I'd say now that we are a year and a half post leukemia treatment for our son, that we should be "back to normal." It was a very long recovery and treatment phase. He had multiple complications. I feel like I am finally only now beginning to unfurl and process so much.
Survival mode first, processing later. This makes sense that it’s hitting you now.
Totally this! The comedown is always a surprise when it eventually hits you.. that little chink of light when your mind finally lets go and the body suddenly says "hang on a minute what about me....?!"
It's a kind of PTSD I think, we are 6 months clear now and I still have a lot of muscle-memory
First, so glad for your baby! Hugs to you! And gosh, yes. It feels like the worst kind of whiplash. I keep thinking...will this feeling ever lessen...trauma is so challenging.
What people get wrong the most about my role as a caregiver is that I somehow wanted this role to begin with. So many well-meaning people — and they do have good intentions — tell us how great we are for being so “on top of things” regarding Bray Bray’s care, his equipment, and his medications.
As I said in a raw conversation with fellow Parent Carer Denise Servais just this week when talking about people saying “How do you do all of it?”, I mean what choice do we have? Do they think I wanted to master how to use a CPAP Machine for Bray Bray’s sleep apnea, or learn all of the little tricks of getting his anti-seizure medication on time, or spend countless hours I don’t really have filling out paperwork so I can get him a fully motorized bed he needed that insurance refused to cover?
We have had to learn these things because we’ll do anything for Bray Bray, but don’t mistake “need” for “want” or “strength” for “obligation”.
"Don’t mistake need for want or strength for obligation" that line says it all. This is exactly what people get wrong.
"Don’t mistake need for want or strength for obligation" is spot on. I might have to use that from now on.
Thank you Sara.
Thanks Denise, for getting it.
Well said, Chris! I hear you! That's an article/poem that needs a deep dive!
There are so many essentials that need to get done to make things happen.
I struggle when well-meaning people try to equate caregiving with some sort of self-improvement challenge or performance event that I want to be graded on.
I'm not looking for a gold star - I'd like us to have a good day, full of love and some giggles.
Yes, exactly- I struggle when well-meaning people try to equate caregiving with some sort of self-improvement challenge or performance event that I want to be graded on.
That was a great conversation with Denise, Chris! Hearing you. When our son was going through his cancer treatments...we'd get the..."I can't even imagine...how are you doing this...how are you and your husband doing it all" I would just think I don't have a choice. I don't even know...? By the grace of God and our people helping us.
We get this ALL THE TIME. The "I wouldn't be able to do this" from people. Of course they would! If they had to, and we have to
Exactly!
Yes!! They would!! It takes so much, pulling from already very tapped reserves. So hard!!
Cooky - How much sleep do you get on a good day versus a bad day?
Good day, 8 hours. Bad day, none at all (but only when she's ill). Usually we're up once in the night
The sleep deprivation is honestly the worst thing about caring, the rest of it I don't mind too much!
I hear you, Cooky. That's how it was when I was caring for my Dad - days and months. Continuing to stretch beyond what you think you can do without sleep!
👐 It totally alters your ability to care too