The Eldest Daughter is Not a Care Plan

“Just send everything to me, I’m the one that handles it,” says the woman in her father’s hospital room, an oversized bag on her shoulder holding snacks, an ipad, a notebook filled with “don’t forget’s” from meetings with doctors, nurses, and social work. In the chair behind her might be a young kid or a teenager, and maybe her mom in the room.

The scene is more familiar than I wish it was. Everyone waits for her to show up because she knows the answers to the questions being asked by social work. If she isn’t there, someone will inevitably speak up and say “you might as well wait for her because I won’t remember any of this and she takes care of everything.”

“All this stuff” is the invisible load of caring for another person. Thankfully we’re talking more about this, the invisible load is the new language that comes across your social media feeds, you hear about while waiting at school pickup, or discuss when you’re out at dinner with friends.

I have seen this pattern across every clinical setting I’ve worked in. She’s got this.

Inpatient. Private practice. Home visits. The default caregiver isn’t a personality type.

She’s a structural outcome of a system designed for everyone but her.

Why it defaults to one person

A recent Psychology Today article, written by a psychotherapist, about how families can improve communication with providers in a hospital setting. They advised a single point of contact because it’s “easier for the providers,” that the person taking on this communication do so with a “calm and respectful tone” so that providers did not dismiss concerns or label them as “aggressive or difficult.”

The article goes on to underline why the best way to align with the healthcare system is to appoint the person who will ask questions without seeming “unreasonable,” bonus points if they have a medical background so they can function as medical interpreters for their family.

From a purely logistics perspective, a single point of contact makes sense- forms are not designed to be filled out by a half dozen family members, patient data safety from hospitals are easier to control with one other portal access, etc. Every point along the healthcare system is always going to be easier if only one person is added to everything, but why does that filtering down to one not multiply out to other family caregivers to help with parts of care and management that don’t require such specificity?

Streamlining communication on the provider end simplifies the responsibility for the hospital, but the pruning of collaboration continues on the family side, to the detriment of the one, who ultimately becomes the isolated, default caregiver.

Why it’s usually a woman

There are a swirl of factors leading to default caregiving landing on the shoulders’ of women: cultural expectations and biases, gender assumptions, and pre-existing family dynamics. The healthcare system does not create this bias, but it does amplify it through it’s participation in it. The default caregiver becomes the default by being physically present most often, if they are in the room when social work or the provider comes in with an update, they’ll be the ones receiving the information. If there is minimal (or no) rotation of in person family members, the one who is always there will receive all the updates. It’s “efficient” for the the hospital and potentially problematic for the person not looking to be locked into the default role.

I have experienced this on the professional side as well as being quickly introduced to these “expectations” while pregnant with my first baby. At that time I was an inpatient therapist and when asked if I knew if the baby was a boy or a girl, I was relieved (on many levels) to be able to say we didn’t plan to find out before they were born. The reply to that was often, “hope you have a girl, because they will stay close and take care of you, but boys will grow up and leave.” All that expectation before this baby has taken their first breath. It wasn’t one conversation with a patient either, as my belly grew in the months I saw patients, the conversation repeated- over and over.

The true costs for default caregivers

The American Heart Association has dubbed those that take on medical care and responsibility in their family as the families “Chief Medical Officer,” the one who remembers to schedule followup appointments, annual visits and tracks symptoms and illnesses to be relayed to providers. They noted that the person to fill this role is estimated to be a woman in 80% of families.

The American Heart Association also points out that the time spent on managing, tracking, and following up on the health and wellness of others, often takes time from women’s days that would otherwise be devoted to work, managing their own health or getting their own health screenings done. The term “invisible labor” is often assumed to be free because it is unacknowledged by society and in many families. There are very real and important costs for women in these default caregiving roles:

Physical- Family caregivers receive minimal training when it comes to medical tasks, and even less time than learning proper techniques to transfer their loved one safely once they are home. Injuries related to improper lifting or transferring techniques can unnecessarily land caregivers in the ER or on the surgical schedule with their own injuries to recover from. This complicates everything for the caregiver and the care recipient, as families will have to “get up to speed” with the care recipient while the default caregiver recovers.

Emotional- Watching a loved on navigating chronic illness, acute injury or even the progression of natural aging is a highly emotional state. Chronic grief, anticipatory loss, guilt, and the demands of having to “keep everything in order” are not sustainable in the long term. Default caregivers, especially those with significant hands-on care duties, who are not able to step away from caregiving to speak with a therapist, friend or provider to address their own mental health needs, are at risk for ongoing mental health complications related to caregiving. This theme of “how do I take care of me when I always have to take care of them” has come up in dozens of AND/BOTH podcast interviews over the years.

Professional- If the healthcare providers office is open from 8am -4pm Monday to Friday and the insurance company’s customer service hours are from 7:30am-5pm during the weekdays, how are caregivers supposed to schedule follow-up appointments, ask billing questions, or schedule appointments while they are at work? The answer: presenteeism. It’s the term to describe being in the office, “clocked in” but working on other things, like caregiving administration, that costs employers over $33 billion dollars per year in lost productivity, averaging $5,600 per employee per year.

Caregivers who are unable to maintain a regular 40 hour schedule because of increased demands of caregiving tasks, lack of respite or coverage during the work day, or conflict with workplace demands, often find themselves reducing work hours in an attempt to maintain employment alongside caregiving. If that doesn’t work, caregivers are forced to leave their jobs, losing retirement earnings potential, benefits, and are left to navigate a changing job market if/when they are able to return.

How the healthcare system reinforces it

From the standpoint of the healthcare system, having one person to connect with, update, or ask permission of checks a box for them. The family is notified (the responsibility falls on the default caregiver to communicate out to the rest of the family), a discharge plan is handed to the next provider (usually family with varying levels of supplementation by professionals), and the bed is freed for the next patient.

A default caregiver works for the healthcare machine, they bridge the gap between providers, offices and insurance companies. Within a hospital system, the building and it’s connected network, information flows efficiently and quickly. Stepping outside of that is a confetti of signed waivers, red tape, and platforms that do not communicate with one another. The bridge between providers who are unable to reach each other, cardiology following up with internal medicine, primary care following up with oncology, rheumatology connecting with endocrinology, or outpatient updates reaching primary care, is the default caregiver. Instead of addressing this systemic dysfunction, default caregivers are made to track and coordinate care without the infrastructure hospitals have access to.

The standard of care inside the system does not translate out to the interconnected parts of the system. Family caregivers absorb the work and become the structural support that buoys care for their loved one. At some point removing them becomes structurally dangerous, not just logistically inconvenient.

That’s the moment the system has created and has no infrastructure to address.

And yet the expectation doesn’t pause. Care still has to happen. Which means the question isn’t whether to rebuild, it’s how to do it without doubling the weight on the person already carrying everything.

What redistribution actually requires

Once the collaboration has dwindled from a robust family care network (if there was one to start with) to a default caregiver, “Just tell me what to do” is not the simple answer to rebuilding a network.

Default caregivers handle large amounts of data, a lot of it is kept physically (notebooks, calendars, phones), but the mental data is the most debilitating when there is no where for it to go. This is the nuance of caregiving- which case manager have you seen multiple times throughout hospitalizations so there’s familiarity, which pharmacy has to order a medication when it’s time to refill so it takes a few days, what are your care recipients favorite hospital clothes? The work to support a caregiver that has been managing alone for months or years is significant, it’s like building a plane while flying instead of starting at the factory.

All of this, whether it’s a current caregiver that has burned out from solo caring, a default caregiver that needs to go into the hospital for surgery and rehab to recover from a caregiving related injury, or someone that is no longer able to do this alone, can feel more overwhelming than simply carrying on inside of a broken and overwhelming system.

So where do you start? The overlooked, yet fundamentally important, first step is to decide that default caregiving is no longer tenable and that no matter the uphill climb to get out of it, is to carry on building the network. I say this is overlooked, because caregivers will often try to onboard to a new platform, try to start uploading everything into a system without telling anyone, in hopes that a prepackaged “here’s your copy” moment will lead to change. That process doubles the amount of work for the default caregiver and has rarely been effective in recruiting caregivers.

After you’ve shared that this is no longer optional, it’s time to start clearing out the mental and physical clutter. A platform with role-based access or shared documentation enables the care team to quickly get up to speed, and streamline meaningful redistribution of care tasks. This is the infrastructure that reduces the work required for the default caregiver, not increases as they look to build a network. Dovetail exists to reduce the need to brief everyone, field questions, and correct the gaps once others have been brought in, because redistribution is an infrastructure problem, not a willingness problem.

The oldest daughter is not the default caregiver, she is no more prepared for a caregiving role than any other member of the family. Through generations of expectation and cultural assumptions the healthcare system was designed around a single point of contact for families. A perfect storm of these two factors had led to expectations that are untenable in the long term, for caregiver’s physical, mental, emotional and financial health.

The default caregiver didn’t end up there because of weakness, martyrdom, or an inability to say no. She ended up there because every system around her pointed that way.

That’s not a personal failure. It’s a structural one and structural problems require structural solutions. The caregiving circle doesn’t have to collapse to one person. But it won’t expand on its own either. It needs infrastructure, and it needs people willing to use it.

If you're in this right now, or know someone who is, here's where to start.

Dovetail is a care coordination platform for family caregivers- built to distribute the load, capture what no one else is tracking, and connect families to vetted support. Available on iOS and Android.

If you’re a family caregiver, build your care profile here and we’ll match you to resources built for your situation.

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