Dear Friends - I'll be sharing your answers to this main question as notes - potentially prompting more discussion there or here.
I don't want to reduce the quality/or misrepresent your words by trying to summarise what you've shared in a new article.
Our next discussion is on May 1st. If you've identified a topic/theme for your host article over the next few months, don't forget to drop it in our team document.
I second, Cooky, huge thanks to you, Victoria!! This is so beautiful and so needed!!👏🏼 I’ve already cried multiple times today, in a good way. Appreciative!
People think I'm used to it by now. They say things like, You're so strong — I don't know how you do it. They mean well. I know they do. But underneath those words is a quiet misunderstanding — the idea that repetition creates armor. That if you live with hard things long enough, they start to hurt less.
That is not how this works.
You don't get used to watching your child struggle. You don't get numb to the fear that slides into your body without asking. What you get used to is the choreography — the calling, the driving, the paperwork, the waiting rooms. But the feeling does not dull. If anything, it deepens.
People also get wrong that my professional knowledge makes this easier. I'm a Director of Special Education. I know the acronyms, the law, the systems. And none of that protects me from the grief of sitting in a meeting where my own child is described in language I don't recognize. Knowing too much doesn't make it lighter. It makes it stranger. You sit in both chairs at the same time and neither one protects you from the weight of what is happening.
And maybe the biggest thing people get wrong is this: they think the grief means something has gone wrong. That if I were doing it right — loving right, parenting right — I wouldn't ache. But the grief was never evidence of failure. It was evidence of love. You cannot love someone this fully and remain invulnerable to the ways their life can hurt you. Love and grief are not opposites. They are companions. They rise together. They live in the same body.
I am not strong in the way people mean when they say that word. I am honest. I am still here. And I am still choosing to stay — not because I have mastered anything, but because he is my child, this is my life, and love keeps moving even when certainty does not.
Maria, you answered so eloquently. Hearing you so deeply. So many times, hearing these words, I feel so ‘naked’ in a way. I feel like turning my head to see if they mean someone standing behind me. My usual reply to someone in conversation, “we’re still here.” Appreciate your response. Sending you a hug.
Maria, thank you for how eloquently you shared this. I hear that same phrase - “You’re so strong, I don’t know how you do it” - which sounds affirming but like you said, I don’t feel strong much of the time and I don’t know it because I’m superwoman. I do this because I love my daughter. And yes, like you said, the grief of seeing my child struggle doesn’t go away and it never becomes okay. It is just part of the fabric of our family. I also agree - I think grief is evidence of love and a companion of love. We grieve BECAUSE we deeply love.
I echo all of this. Mine are now adults, and travelling through the systems has not been easy. The fight is real, as is the frustration. The sadness at how challenging life can be for them - but also the gratitude that, in fact, at times they have been given opportunities they probably wouldn't have had if they hadn't been disabled. They are who they are, and I ask that society accepts them as they are.
Donna - I can relate to what you said about how hard emerging adulthood is for teens/ adults with disabilities, along with my sadness as a parent at how hard it’s been for them. I am also grateful for the accommodations and support my daughter has received and I’m aware of how it’s shaped her in important ways, beyond just helping her make it through a test or get to a class.
We are allowed to hold grief and gratitude, fear and strength, jealousy and contentment at the same time. I think this is the reality of caregiving that few understand. I’m grateful that my family and friends don’t understand this reality, but it’s still lonely. Hugs.
Ooof, Maria, this thumps with resonance and deserves its own article.
That mythical expectation of 'if I were doing it right' - speaks to all caregiving situations, I think.
This: "Knowing too much doesn't make it lighter. It makes it stranger. You sit in both chairs at the same time, and neither one protects you from the weight of what is happening." feels very familiar, sometimes both chairs = neither; the no man's land between the 2.
A thousand pardons for being this late to the party. I saw the post and comments initially come in but then it was the holiday weekend and then, as is its wont, our caregiving lives turned into decidedly not holiday vibes quickly and we are still mucking about in that. Case in point, I am texting this out while on the phone with hospice. Thank God for wireless headphones so I can make calls and still use my hands!
I had a longer response that ended up being more polemical than I wanted or think is appropriate here. I talked to Victoria about it briefly and the below is the reworking of my thoughts. I hope she will forgive my pushback on her question, but the following is more how the truth of her question shows up in my life and lucky for me (as I read recently) the truth is easy to say when you don’t fear the reaction it might provoke. This is really a testament to Victoria’s welcoming spirit. And so…
I’d like to reframe the question.
Not to split hairs or quibble about semantics, but because, as I’ve said, it doesn’t quite fit how I grasp my caregiving. On the one hand, more often than not, I am at a loss for what, specifically, I am supposed to be doing as a caregiver and so correcting someone else on right and wrong in what my caregiving is demands a certainty I simply don’t have. What’s more, I’m not sure there is a 'right' way to be a caregiver that doesn’t involve a level of abstraction that renders its labeling as such essentially moot. Even at the individual level, my concept of caregiver is ever evolving and so to call something wrong would be to contradict some past or future version of myself in this role.
On the other hand, I find myself disagreeing with fellow caregivers just as frequently as I do with non-caregivers. To tell other parents they are wrong feels…wrong…without even getting into the epistemic privilege or hermeneutical injustice of it all. I don’t find the ‘caregiver vs non-caregiver’ mindset all that conducive to the stated goals of most caregiving collaborations (empathy, community, acceptance, authenticity, and many others) and so I have no great interest in making that distinction sharper by calling out all the ways people who aren't in my exact situation have goofed when talking about my life. What I am interested in is how people, all people, can, in the immortal words of William S. Preston, Esq., 'Be excellent to each other."
And so, when I read ‘What do people get wrong…?’ I don’t think I’m too far from the spirit of it by interpreting it as ‘What are ways people view your caregiving that are not helpful/useful?’ I’m not here to grade or correct anyone else’s viewpoints, I’m here to care for my child. Often, other people’s views about my caregiving provide useful insights on how to do this, other times they are not helpful. Whether they are right or wrong seems to matter less to me, as the years go by, than whether or not they help me to become a better caregiver.
What is helpful shifts over time though so I don’t have a fixed list of things that are unhelpful, but they do tend to share a common pattern. Whether it comes from a well-meaning stranger, a fellow parent or my own internal monologue, they attempt translate something messy and relational (like caregiving) into something more manageable and abstract (like a platitude or a diagnosis). The outside observer reaches for a frame that makes caregiving make sense from a distance (through things like mystery, awe, or narrative). While so many times I, out of exhaustion, humility, or just wanting the conversation to end, have reached for a frame that makes it disappear (through things like mechanization or flattening). Caregivers and non-caregivers alike keep reaching for ways to make caregiving more palatable or readily understood and in doing so, drift from what it actually is.
In short, the least helpful ways of understanding my caregiving as a parent are the ones that make it easier to look at than to live in.
You know what is helpful though? Having a space like this where non-caregivers can get to know what it's like being a parent caregiver without making it about themselves or having their misunderstandings shut down, and caregivers can do more than just give automatic responses or toe the party line and express themselves without fear of reprisal.
Bud, you have clearly thought deeply about this. So appreciative of your perspective and the ways you courageously offer a variety of thoughts, some as a pushback. Thanks for sharing.
And having a loved one in hospice is unimaginably hard - you just mentioned it in passing but I wanted to extend my sympathy.
Lots of food for thought on your take on the question, particularly this quote:
“While so many times I, out of exhaustion, humility, or just wanting the conversation to end, have reached for a frame that makes it disappear (through things like mechanization or flattening). Caregivers and non-caregivers alike keep reaching for ways to make caregiving more palatable or readily understood and in doing so, drift from what it actually is”
I felt this in my bones. Thank you for expressing this so succinctly.
My son officially became an adult last year lurching us both into the shiny new domain of “Adult” social care and services. I have recently come to realise that my caregiving has had to evolve with him being viewed differently by society ie. an adult. A whole set of new rules and regulations for the boy on Tuesday that miraculously has to be defined, assessed and re-categorized into a whole new thing on Wednesday by dint of a birth date.
More confounding of this miracle is some friends seemingly think on some level that I am “done and dusted” and a “magic hand-over" of responsibility will now somehow materialise. A perfect example of reaching to make caregiving “more palatable”... a world away as you say “from what it actually is”.
Thank you for your input and honesty, so many hard hitting truths. It’s so refreshing... and if this is a re-work 😜🕺🏾
Exactly this- “magic hand-over." The label changes, but the caregiving doesn’t. When my daughter aged out of school in February, I felt like we fell off a cliff. People just assumed there were supports in place for Maya when she turned 22, but what I found were waiting lists and fighting for limited resources to help our adult children.
Hayley/Denise we are at the exact same point here now Olivia is 19, we are starting to seriously consider some kind of residential placement, but the right place will be hard to find, difficult to get into, and require one heck of a transition plan. I feel exhausted just thinking about it
Absolutely spot on Cooky. Not to mention the horror stories one sees on the news about the predominantly private sector and respite facilities. I know these are the minority but the fact that it's a possible issue for our vulnerable ones.. sigh. It's a complete rock and a hard place. Even with our hard core due diligence there are no guarantees and it's yet another "thing" we need to be on the ball and vigilant about at all times!
You are right Denise.. the assumptions are off the chart!
I feel you Cooky. We actually tried a residential placement over the summer, and it didn’t work out and had to bring her back home. It’s all exhausting! Good luck.
Hi Bud, I'm sorry to hear things have been so unholiday-like, and full on! No apologies needed - the doors won't close on this discussion - I think we've proved how much this portal is needed!
Many thanks for sharing your thoughts, and I welcome your 'pushback' and perspective. The overarching wish I had for the discussions isn't about judging others; it's about raising awareness and fostering open discussion where we can exchange meaningful thoughts and deepen understanding. So I really like your rephrased question -
"‘What are ways people view your caregiving that are not helpful/useful?’
Your last paragraph is like a telepathically beamed thought and more accurately conveys what I'd envisaged, thanks, Bud
I'd also go a step further to say that this space and Carer Mentor embraces the diversity of all our caregiving experiences, including everyone. For eldercare/caring for my parents I've experienced other carers mistakenly assume my experience is like theirs...it's why I opened the article with highlighting the paradox of different/same, individual circumstances and common humanity. - I look to your expertise to express that better for me if you've time/brain energy left, Bud!
I'm sending some strength your way and to your family, in the hope things become calmer for you. Thanks for engaging so openly.
This is a magnificent conversation, Bud. Appreciate your thoughts and your honesty. Victoria has created a “gym” or sort of “workout facility” for people to flex and work their empathy muscles here. It’s just brilliant! And I’m with you on the interpretation of “get wrong.” Think it’s internal narratives fed by societal expectations that lead to some feeling of “shoulds” or other ideas of “how’s.” And folks just wanting to awkwardly try to understand. When it’s just so overwhelming. It’s just all so layered!! Anyway, appreciate your voice.💛 so grateful for this group.
Many of you have already named so many important pieces. I'll add this:
As someone whose faith is important to me, it's hard to name that I am sometimes angry with God that my child continues to suffer. My daughter has struggled with mental health issues but she also developed several physical health conditions which are quite debilitating. I'm so grateful for all my friends inside and outside of the church who pray for her. But it's not easy, especially within the church, to tell our story as one that doesn't have an easy happy ending or answer to prayer. Our culture loves happy endings or at least victorious overcoming - look at Hollywood. My daughter is overcoming in many ways but it's not glamorous or easy - it's messy and it's full of forward movement and regression.
Another piece that feels hard to name is that I've needed to keep it together for the sake of my daughter - I've needed to be the case manager, the emotional support cheerleader, the intermediary to the medical team, the chauffeur, etc - so there hasn't been much space for my own emotions or needs. People ask how my daughter is doing, which I appreciate. What's harder to name is how I'm doing. Another mom and I talk about the ways we've developed something like PTSD as caregivers.
Finally, occasionally folks will pity me or my daughter. I don't want pity. I want friends to walk alongside us with empathy and listening ears, without advice-giving ("I know just how you feel, my niece's cousin's friend's uncle once had that and he got better by getting a blood transfusion, you should look into it"), and without impatience. I also love it when friends celebrate the wins with us, because the wins are so joyful and life-giving after the low points.
I totally second this about not wanting pity, it is totally misplaced. One of the reasons I started my Substack was to share the highs, silliness, fun and breakthroughs as well as the lows. I wanted to give an honest, balanced view.
One of the worst things anyone has said to me was a childminder in the park watching me push my laughing daughter on a swing. She mistook me for a carer, and said "you're so brave to work with kids like her, I couldn't do it, I would just be crying all the time".
So many things... but what people do not realize is that when things are going somewhat smoothly( I use that term very lightly) that I am ok. In truth, I am always waiting for the other shoe to drop, the next crisis. I know how to do crisis, but when there is no immediate crisis, my nervous system is still activated. Another misconception when kids have invisible disabilities, mental illness and challenging behavior, people often assume that the parents are to blame.
Absolutely!!! There is tension even in the calm. I often wonder if others live in tension like this all the time. What would it be like to live in peace?! I'll never know.
Right?!! Such a humbling, reality check…when a new ball gets tossed in to juggle. A reminder that “oh, yes, this is also a thing…” Better stay on it or else!
Yes, Amy! Being a caregiver for someone who has been in crisis more often than not, I struggle to relax fully when things seem to be going smoothly, because I'm so accustomed to the next unexpected crisis popping up.
Wow, I'm late to the party but blown away by this response!
I love all of the answers to Victoria's question about what people get wrong and I can relate to many of them. I always feel that when people meet me they see a "normal" mom of three, without knowing the slightest about all the additional layers of caregiving going on behind the scenes, but which define my life right now: managing both my parents' dementia diagnoses and various moves and health issues, and taking over guardianship for my disabled brother.
I share the discomfort others have expressed with the "I can't imagine" or the "you're a superhero" comments: because neither is true. These responses, while well-meaning, are also somehow othering. As if I'm in a different category, not what I actually am - just a normal human who has no other choice but to carry the care of so many people I love on my shoulders. And its damn hard! Sometimes we need you to just imagine with us, because that's the root of empathy.
I can relate with your words “s if I'm in a different category, not what I actually am - just a normal human who has no other choice but to carry the care of so many people I love on my shoulders.” It is a form of othering and often makes me feel more isolated.
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.
Absolutely this! I had this just the other day with a friend who I made the "mistake" of saying I was having a hard time and cancelled our lunch date. Well her response was so OTT you would think something had happened to her.. I was genuinely flawed at the response!
I ended up consoling her and diminishing my feelings to less than I actually felt..."I'm all good, just had a moment, must be the damn moon etc etc".. 😳😂 It showed (and reminded me) the reason why I rarely come clean with how hard things can be...
She really meant well but it was exhausting and even though it should not be that way.. I did think to myself "well don't do that again H!"
One great thing about all this is that you can clearly see who is worth the time of day, and it's not the same people that I used to admire before I was a carer
People don't want you to be honest because then they are faced with the reality.
So "I'm fine" becomes the norm and no one enquires beyond that. Shielding themselves from the juggle and emotion so they don't have to take any action.
Yup, sitting in the pain, in empathy with caregivers - without a fix-it, attitude is powerful but also, dare I say, rare.
It's also, something I know you say - boundary setting.
In my case, I don't want to waste precious energy, time and effort explaining to someone who won't truly listen - they're usually listening to respond rather than being present with me. I'd rather save my energies for the rest of the day ahead.
Flipside to that is having a good cry with someone who gets it.
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 did exactly this with our daughter's gynae consultant secretary, just rang her every day, rang the dept, got them to page him even, until he cracked and rang me
I'm sorry but that did make me laugh! "Tim was apparently over me!" 😂Agreed you do what you need to do.. I'm well know at our local authority (council) I'm choosing to think that's a good thing... 😳😜
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”.
Chris, I have felt this way too - but this was never "what I wanted to be when I grew up!" Or at least, I never wanted my kid to suffer like this - but she has and she does, so we learn.
Chris I get this, people will say, "I could not do that you do." Well, I didn't have a choice and I love my kids. It is meant to be a compliment but it is isolating
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.
Had this all the time when they were young - I used to think 'so you would just abandon your child then if something happened to them?'
Now they are adults people seem to assume we are no longer responsible for them - but, of course, we always will need to give them extra support no matter their age
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?”
Dear Friends - I'll be sharing your answers to this main question as notes - potentially prompting more discussion there or here.
I don't want to reduce the quality/or misrepresent your words by trying to summarise what you've shared in a new article.
Our next discussion is on May 1st. If you've identified a topic/theme for your host article over the next few months, don't forget to drop it in our team document.
Thanks Victoria!
Thanks Victoria!
Brill! Thanks once again for doing all this work Victoria! 🕺🏾
Great. Thanks Victoria!
Sounds great Victoria, thanks again
ProTip: To ensure you see separate threads - click next to the name of a person and the sub-thread will roll up under it.
Thank you!
Dear Readers, Friends and Team members, many thanks for sharing your thoughts and comments so openly. This is just the beginning ;-)
I'm sure there will be more comments as the weekend begins.
I hope you'll explore the team members' articles. This is both a discussion hub and an anthology portal to 12 other publications by parent caregivers.
Victoria, you’re amazing! Thanks for this conversation and for how generously you have put this together to support all of us.
You're very welcome, Serena. It's reward enough to see everyone's comments and the warm resonance being shared.
Thank you Victoria for creating this awesome space, for us as caregivers, to be honest and learn from each other.
I second, Cooky, huge thanks to you, Victoria!! This is so beautiful and so needed!!👏🏼 I’ve already cried multiple times today, in a good way. Appreciative!
You're very welcome, Mary Beth I hope other readers feel the resonance.
Me too! So moving ❤️
Huge thanks Victoria for bringing us together. So grateful to be connected to these wonderful people. Great work!
Thanks, you're very welcome, Cooky. Our network of empathy grows together.
People think I'm used to it by now. They say things like, You're so strong — I don't know how you do it. They mean well. I know they do. But underneath those words is a quiet misunderstanding — the idea that repetition creates armor. That if you live with hard things long enough, they start to hurt less.
That is not how this works.
You don't get used to watching your child struggle. You don't get numb to the fear that slides into your body without asking. What you get used to is the choreography — the calling, the driving, the paperwork, the waiting rooms. But the feeling does not dull. If anything, it deepens.
People also get wrong that my professional knowledge makes this easier. I'm a Director of Special Education. I know the acronyms, the law, the systems. And none of that protects me from the grief of sitting in a meeting where my own child is described in language I don't recognize. Knowing too much doesn't make it lighter. It makes it stranger. You sit in both chairs at the same time and neither one protects you from the weight of what is happening.
And maybe the biggest thing people get wrong is this: they think the grief means something has gone wrong. That if I were doing it right — loving right, parenting right — I wouldn't ache. But the grief was never evidence of failure. It was evidence of love. You cannot love someone this fully and remain invulnerable to the ways their life can hurt you. Love and grief are not opposites. They are companions. They rise together. They live in the same body.
I am not strong in the way people mean when they say that word. I am honest. I am still here. And I am still choosing to stay — not because I have mastered anything, but because he is my child, this is my life, and love keeps moving even when certainty does not.
Maria, you answered so eloquently. Hearing you so deeply. So many times, hearing these words, I feel so ‘naked’ in a way. I feel like turning my head to see if they mean someone standing behind me. My usual reply to someone in conversation, “we’re still here.” Appreciate your response. Sending you a hug.
Thank you for your kind works, Mary Beth!
Maria this is absolutely beautiful and I could not agree more, sitting here in tears x
Maria, thank you for how eloquently you shared this. I hear that same phrase - “You’re so strong, I don’t know how you do it” - which sounds affirming but like you said, I don’t feel strong much of the time and I don’t know it because I’m superwoman. I do this because I love my daughter. And yes, like you said, the grief of seeing my child struggle doesn’t go away and it never becomes okay. It is just part of the fabric of our family. I also agree - I think grief is evidence of love and a companion of love. We grieve BECAUSE we deeply love.
I echo all of this. Mine are now adults, and travelling through the systems has not been easy. The fight is real, as is the frustration. The sadness at how challenging life can be for them - but also the gratitude that, in fact, at times they have been given opportunities they probably wouldn't have had if they hadn't been disabled. They are who they are, and I ask that society accepts them as they are.
Donna - I can relate to what you said about how hard emerging adulthood is for teens/ adults with disabilities, along with my sadness as a parent at how hard it’s been for them. I am also grateful for the accommodations and support my daughter has received and I’m aware of how it’s shaped her in important ways, beyond just helping her make it through a test or get to a class.
Absolutely!!! 💯
We are allowed to hold grief and gratitude, fear and strength, jealousy and contentment at the same time. I think this is the reality of caregiving that few understand. I’m grateful that my family and friends don’t understand this reality, but it’s still lonely. Hugs.
Sara - yes, caregiving definitely feels lonely at times! And I love how you named the frequent paradoxes that are part of it.
Absolutely! This is the whole title of my work - Holding Both.
Ooof, Maria, this thumps with resonance and deserves its own article.
That mythical expectation of 'if I were doing it right' - speaks to all caregiving situations, I think.
This: "Knowing too much doesn't make it lighter. It makes it stranger. You sit in both chairs at the same time, and neither one protects you from the weight of what is happening." feels very familiar, sometimes both chairs = neither; the no man's land between the 2.
All of your stories are powerful and educate readers about how caregivers spend their days. You are all making a difference with this piece.
Thanks, Erin!
Thank you Erin!
What a magnificent conversation.
A thousand pardons for being this late to the party. I saw the post and comments initially come in but then it was the holiday weekend and then, as is its wont, our caregiving lives turned into decidedly not holiday vibes quickly and we are still mucking about in that. Case in point, I am texting this out while on the phone with hospice. Thank God for wireless headphones so I can make calls and still use my hands!
I had a longer response that ended up being more polemical than I wanted or think is appropriate here. I talked to Victoria about it briefly and the below is the reworking of my thoughts. I hope she will forgive my pushback on her question, but the following is more how the truth of her question shows up in my life and lucky for me (as I read recently) the truth is easy to say when you don’t fear the reaction it might provoke. This is really a testament to Victoria’s welcoming spirit. And so…
I’d like to reframe the question.
Not to split hairs or quibble about semantics, but because, as I’ve said, it doesn’t quite fit how I grasp my caregiving. On the one hand, more often than not, I am at a loss for what, specifically, I am supposed to be doing as a caregiver and so correcting someone else on right and wrong in what my caregiving is demands a certainty I simply don’t have. What’s more, I’m not sure there is a 'right' way to be a caregiver that doesn’t involve a level of abstraction that renders its labeling as such essentially moot. Even at the individual level, my concept of caregiver is ever evolving and so to call something wrong would be to contradict some past or future version of myself in this role.
On the other hand, I find myself disagreeing with fellow caregivers just as frequently as I do with non-caregivers. To tell other parents they are wrong feels…wrong…without even getting into the epistemic privilege or hermeneutical injustice of it all. I don’t find the ‘caregiver vs non-caregiver’ mindset all that conducive to the stated goals of most caregiving collaborations (empathy, community, acceptance, authenticity, and many others) and so I have no great interest in making that distinction sharper by calling out all the ways people who aren't in my exact situation have goofed when talking about my life. What I am interested in is how people, all people, can, in the immortal words of William S. Preston, Esq., 'Be excellent to each other."
And so, when I read ‘What do people get wrong…?’ I don’t think I’m too far from the spirit of it by interpreting it as ‘What are ways people view your caregiving that are not helpful/useful?’ I’m not here to grade or correct anyone else’s viewpoints, I’m here to care for my child. Often, other people’s views about my caregiving provide useful insights on how to do this, other times they are not helpful. Whether they are right or wrong seems to matter less to me, as the years go by, than whether or not they help me to become a better caregiver.
What is helpful shifts over time though so I don’t have a fixed list of things that are unhelpful, but they do tend to share a common pattern. Whether it comes from a well-meaning stranger, a fellow parent or my own internal monologue, they attempt translate something messy and relational (like caregiving) into something more manageable and abstract (like a platitude or a diagnosis). The outside observer reaches for a frame that makes caregiving make sense from a distance (through things like mystery, awe, or narrative). While so many times I, out of exhaustion, humility, or just wanting the conversation to end, have reached for a frame that makes it disappear (through things like mechanization or flattening). Caregivers and non-caregivers alike keep reaching for ways to make caregiving more palatable or readily understood and in doing so, drift from what it actually is.
In short, the least helpful ways of understanding my caregiving as a parent are the ones that make it easier to look at than to live in.
You know what is helpful though? Having a space like this where non-caregivers can get to know what it's like being a parent caregiver without making it about themselves or having their misunderstandings shut down, and caregivers can do more than just give automatic responses or toe the party line and express themselves without fear of reprisal.
Thank you again Victoria for this.
Bud, you have clearly thought deeply about this. So appreciative of your perspective and the ways you courageously offer a variety of thoughts, some as a pushback. Thanks for sharing.
And having a loved one in hospice is unimaginably hard - you just mentioned it in passing but I wanted to extend my sympathy.
Hi there Bud
It’s looking like better late than never! 😜
Lots of food for thought on your take on the question, particularly this quote:
“While so many times I, out of exhaustion, humility, or just wanting the conversation to end, have reached for a frame that makes it disappear (through things like mechanization or flattening). Caregivers and non-caregivers alike keep reaching for ways to make caregiving more palatable or readily understood and in doing so, drift from what it actually is”
I felt this in my bones. Thank you for expressing this so succinctly.
My son officially became an adult last year lurching us both into the shiny new domain of “Adult” social care and services. I have recently come to realise that my caregiving has had to evolve with him being viewed differently by society ie. an adult. A whole set of new rules and regulations for the boy on Tuesday that miraculously has to be defined, assessed and re-categorized into a whole new thing on Wednesday by dint of a birth date.
More confounding of this miracle is some friends seemingly think on some level that I am “done and dusted” and a “magic hand-over" of responsibility will now somehow materialise. A perfect example of reaching to make caregiving “more palatable”... a world away as you say “from what it actually is”.
Thank you for your input and honesty, so many hard hitting truths. It’s so refreshing... and if this is a re-work 😜🕺🏾
Exactly this- “magic hand-over." The label changes, but the caregiving doesn’t. When my daughter aged out of school in February, I felt like we fell off a cliff. People just assumed there were supports in place for Maya when she turned 22, but what I found were waiting lists and fighting for limited resources to help our adult children.
Hayley/Denise we are at the exact same point here now Olivia is 19, we are starting to seriously consider some kind of residential placement, but the right place will be hard to find, difficult to get into, and require one heck of a transition plan. I feel exhausted just thinking about it
Absolutely spot on Cooky. Not to mention the horror stories one sees on the news about the predominantly private sector and respite facilities. I know these are the minority but the fact that it's a possible issue for our vulnerable ones.. sigh. It's a complete rock and a hard place. Even with our hard core due diligence there are no guarantees and it's yet another "thing" we need to be on the ball and vigilant about at all times!
You are right Denise.. the assumptions are off the chart!
I feel you Cooky. We actually tried a residential placement over the summer, and it didn’t work out and had to bring her back home. It’s all exhausting! Good luck.
I think this is common, and the trouble is that it doesn't inspire confidence for the next try. Good luck to you too x
Hi Bud, I'm sorry to hear things have been so unholiday-like, and full on! No apologies needed - the doors won't close on this discussion - I think we've proved how much this portal is needed!
Many thanks for sharing your thoughts, and I welcome your 'pushback' and perspective. The overarching wish I had for the discussions isn't about judging others; it's about raising awareness and fostering open discussion where we can exchange meaningful thoughts and deepen understanding. So I really like your rephrased question -
"‘What are ways people view your caregiving that are not helpful/useful?’
Your last paragraph is like a telepathically beamed thought and more accurately conveys what I'd envisaged, thanks, Bud
I'd also go a step further to say that this space and Carer Mentor embraces the diversity of all our caregiving experiences, including everyone. For eldercare/caring for my parents I've experienced other carers mistakenly assume my experience is like theirs...it's why I opened the article with highlighting the paradox of different/same, individual circumstances and common humanity. - I look to your expertise to express that better for me if you've time/brain energy left, Bud!
I'm sending some strength your way and to your family, in the hope things become calmer for you. Thanks for engaging so openly.
This is a magnificent conversation, Bud. Appreciate your thoughts and your honesty. Victoria has created a “gym” or sort of “workout facility” for people to flex and work their empathy muscles here. It’s just brilliant! And I’m with you on the interpretation of “get wrong.” Think it’s internal narratives fed by societal expectations that lead to some feeling of “shoulds” or other ideas of “how’s.” And folks just wanting to awkwardly try to understand. When it’s just so overwhelming. It’s just all so layered!! Anyway, appreciate your voice.💛 so grateful for this group.
Thanks, Mary Beth - now I've got a little cartoon 'empathy' character in my head doing a workout!
I made 'should' a swear word a long time ago but it still pops up. It's difficult to quieten those internal narratives.
I could see a ‘caregiver’ comic strip just to bring some comfort and even smiles happening…😊 any illustrators out there? ‘Should’ is so hard to shun!
Oooh! Great idea!
Many of you have already named so many important pieces. I'll add this:
As someone whose faith is important to me, it's hard to name that I am sometimes angry with God that my child continues to suffer. My daughter has struggled with mental health issues but she also developed several physical health conditions which are quite debilitating. I'm so grateful for all my friends inside and outside of the church who pray for her. But it's not easy, especially within the church, to tell our story as one that doesn't have an easy happy ending or answer to prayer. Our culture loves happy endings or at least victorious overcoming - look at Hollywood. My daughter is overcoming in many ways but it's not glamorous or easy - it's messy and it's full of forward movement and regression.
Another piece that feels hard to name is that I've needed to keep it together for the sake of my daughter - I've needed to be the case manager, the emotional support cheerleader, the intermediary to the medical team, the chauffeur, etc - so there hasn't been much space for my own emotions or needs. People ask how my daughter is doing, which I appreciate. What's harder to name is how I'm doing. Another mom and I talk about the ways we've developed something like PTSD as caregivers.
Finally, occasionally folks will pity me or my daughter. I don't want pity. I want friends to walk alongside us with empathy and listening ears, without advice-giving ("I know just how you feel, my niece's cousin's friend's uncle once had that and he got better by getting a blood transfusion, you should look into it"), and without impatience. I also love it when friends celebrate the wins with us, because the wins are so joyful and life-giving after the low points.
thanks for asking the question, Victoria!
I totally second this about not wanting pity, it is totally misplaced. One of the reasons I started my Substack was to share the highs, silliness, fun and breakthroughs as well as the lows. I wanted to give an honest, balanced view.
One of the worst things anyone has said to me was a childminder in the park watching me push my laughing daughter on a swing. She mistook me for a carer, and said "you're so brave to work with kids like her, I couldn't do it, I would just be crying all the time".
Ugh, that would be super hard @Cooky Howitt!
So many things... but what people do not realize is that when things are going somewhat smoothly( I use that term very lightly) that I am ok. In truth, I am always waiting for the other shoe to drop, the next crisis. I know how to do crisis, but when there is no immediate crisis, my nervous system is still activated. Another misconception when kids have invisible disabilities, mental illness and challenging behavior, people often assume that the parents are to blame.
Absolutely!!! There is tension even in the calm. I often wonder if others live in tension like this all the time. What would it be like to live in peace?! I'll never know.
Our nervous systems are like, “Just wait. Let's not get ahead of ourselves,” when things are going smoothly.
Right?!! Such a humbling, reality check…when a new ball gets tossed in to juggle. A reminder that “oh, yes, this is also a thing…” Better stay on it or else!
Right, Sara!
Yes, Amy! Being a caregiver for someone who has been in crisis more often than not, I struggle to relax fully when things seem to be going smoothly, because I'm so accustomed to the next unexpected crisis popping up.
I hear you, Amy. Denise made a comment about being 'on' and anticipating - a hypervigilance I called it. The way you've shared it- you're the one who needs to be primed to pivot into crisis-lead-mode? (here's Denise's comment: https://carermentor.substack.com/p/caregivers-who-are-parents-ask-us?utm_campaign=comment-list-share-cta&utm_medium=web&comments=true&commentId=237582891)
And, 'people often assume that the parents are to blame' -Uggghh, the ignorance, period.
So sorry that I am so late to this amazing gathering. Thank you Victoria for creating this space. You have already proved that it is so needed x
No apologies needed, Donna. Thanks, I'm so glad I could build this for everyone.
Wow, I'm late to the party but blown away by this response!
I love all of the answers to Victoria's question about what people get wrong and I can relate to many of them. I always feel that when people meet me they see a "normal" mom of three, without knowing the slightest about all the additional layers of caregiving going on behind the scenes, but which define my life right now: managing both my parents' dementia diagnoses and various moves and health issues, and taking over guardianship for my disabled brother.
I share the discomfort others have expressed with the "I can't imagine" or the "you're a superhero" comments: because neither is true. These responses, while well-meaning, are also somehow othering. As if I'm in a different category, not what I actually am - just a normal human who has no other choice but to carry the care of so many people I love on my shoulders. And its damn hard! Sometimes we need you to just imagine with us, because that's the root of empathy.
I can relate with your words “s if I'm in a different category, not what I actually am - just a normal human who has no other choice but to carry the care of so many people I love on my shoulders.” It is a form of othering and often makes me feel more isolated.
Anna. I love how you said this: sometimes we need you to just imagine with us, because that’s the root of empathy. Amen!
Spot on Anna! ❤️
Beautifully said Anna!
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.
Sara - it's so true. It's also like if we aren't in the middle of a crisis, things might be okay... but my daughter's condition doesn't go away.
I just poured my heart out in a note that expresses exactly this. It’s a photo of me and Bray Bray and what you see vs. what you don’t see.
Ooh Chris, you should post that here too!
Deeply moving and so very true Chris!
Thank you Haley, everyone here is really helping me feel less isolated.
Same, same! 😁
Absolutely this! I had this just the other day with a friend who I made the "mistake" of saying I was having a hard time and cancelled our lunch date. Well her response was so OTT you would think something had happened to her.. I was genuinely flawed at the response!
I ended up consoling her and diminishing my feelings to less than I actually felt..."I'm all good, just had a moment, must be the damn moon etc etc".. 😳😂 It showed (and reminded me) the reason why I rarely come clean with how hard things can be...
She really meant well but it was exhausting and even though it should not be that way.. I did think to myself "well don't do that again H!"
ouch - sorry that happened Haley! I have found, like you, that it's takes some work to figure out which friends can handle the real story.
"friend"
One great thing about all this is that you can clearly see who is worth the time of day, and it's not the same people that I used to admire before I was a carer
Exactly this!
People don't want you to be honest because then they are faced with the reality.
So "I'm fine" becomes the norm and no one enquires beyond that. Shielding themselves from the juggle and emotion so they don't have to take any action.
Yup, sitting in the pain, in empathy with caregivers - without a fix-it, attitude is powerful but also, dare I say, rare.
It's also, something I know you say - boundary setting.
In my case, I don't want to waste precious energy, time and effort explaining to someone who won't truly listen - they're usually listening to respond rather than being present with me. I'd rather save my energies for the rest of the day ahead.
Flipside to that is having a good cry with someone who gets it.
Absolutely! We don't owe information to anyone. Saving our energy (and words) is crucial for the longevity of caregiving.
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.
So true, Denise!
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.
Geez, Chris. I'm sorry.
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 did exactly this with our daughter's gynae consultant secretary, just rang her every day, rang the dept, got them to page him even, until he cracked and rang me
I'm sorry but that did make me laugh! "Tim was apparently over me!" 😂Agreed you do what you need to do.. I'm well know at our local authority (council) I'm choosing to think that's a good thing... 😳😜
Haley - I'm so well known at our Local Authority I was asked to become a Parent Carer Rep by one of the senior Social Workers! 🤣
Definitely a good thing!
It's the old saying, “You have to laugh to keep from crying.” I do both, though. 😉
Ha! I’ve had so many of these conversations too. I’m sorry you’ve also experienced it, but glad I’m not alone.
Ugh! I hope it gets resolved soon!
This is like the Theater of the Absurd. Really, can it get anymore ridiculous?
Funny.. that's the name of one of my upcoming stories! and I believe no... there's room for much more ridiculousness!
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.
It does take such a long time to recover, doesn't it? And it's a separate process for our loved one to recover versus ourselves as the caregiver.
Survival mode first, processing later. This makes sense that it’s hitting you now.
So wise!
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.
Hugs back to you and your boy ❤️
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”.
Chris, I have felt this way too - but this was never "what I wanted to be when I grew up!" Or at least, I never wanted my kid to suffer like this - but she has and she does, so we learn.
Exactly!
Chris I get this, people will say, "I could not do that you do." Well, I didn't have a choice and I love my kids. It is meant to be a compliment but it is isolating
YES!
"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
Had this all the time when they were young - I used to think 'so you would just abandon your child then if something happened to them?'
Now they are adults people seem to assume we are no longer responsible for them - but, of course, we always will need to give them extra support no matter their age
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